Someone asked me to write about ovarian remnant syndrome. This is actually a pretty simple thing in concept, but can be difficult to treat in some cases. What happens is that some ovaries get stuck down to the pelvic sidewall, sometimes from endo, sometimes from other things. Underneath the ovary on the sidewall (under the peritoneum) are lots of "dangerous" structures like the ureter and lots of big blood vessels and nerves that intimidate most gynecologists. Because they don't want to risk damage to these structures, some docs prefer to leave a little bit of ovarian tissue on the sidewall rather than dissect the ovary and attached peritoneum off the pelvis in order to remove the entire ovary. Sometimes this little bit of ovary has enough cells that it continues to be metabolically active enough to make hormones and form cysts. Oftentimes there are adhesions over the remnant of ovarian tissue that get stretched when the cysts form, thereby causing pain. The simple answer to this problem is to remove the remnant of ovary. The real life issues that make this a little more challenging are twofold. First, in order to diagnose a condition, one must first think of that condition. Most GYNs think that if the ovary was removed, it can't cause any more problems, so when a patient presents with right sided pelvic pain and previously had their right ovary removed, the doc starts trying to think of other things that can cause right sided pain (appendix, fibroids, gallbladder, etc). Oftentimes they're right to think of these other sources of pain. But, if the investigative workup into other causes of pain leads nowhere, then what? It's sad but true, I've seen GYNs remove the right ovary in patients with left sided pain "because the left ovary is already gone". Crazy. Ovarian remnant syndrome isn't all that common, but it certainly needs to be in the list of things thought about in patients with persistent unilateral pain after removal of that adnexa (tube and ovary). The second reason that these can be difficult problems to deal with is because some patients have incredibly dense adhesions of bowel and omentum over the top of the remnant of ovary. This can lead many surgeons to leave the abdomen before finishing the job (can you say "cut and run"?). One example of this is a patient I had in Hawaii. She had multiple surgeries by her previous GYN and a couple by me, eventually resulting in removal of both ovaries and her uterus. At the last surgery she had the worst bowel adhesions I've ever seen before or since. Imagine a kettle full of sausage, then pour Elmer's glue all over them, mix it up, and let it harden. The last thing I wanted to do was reoperate on this poor girl, but she kept having a recurrent fluid collection in her right pelvis that caused her pain. We tried everything to suppress it (OCPs), drain it via ultrasound guidance, and nothing worked. Finally before I left I agreed to go back in to remove this cystic structure. We finally did succeed in finding it, under 6 layers of bowel adhesions, and after making a couple holes in the bowel (and fixing them) guess what the path report showed? Ovarian tissue. The good news is that she finally recovered from her surgery, and now has no more pain from that cyst. The take home message is that even if you do figure out what's going on, these cases can be extremely difficult, time consuming, and risky. I knew what I would find, so the patient was prepared, but it's not always that obvious before the surgery starts. The take home message from this is that as surgeons specializing in pelvic pain, we have to be prepared for anything. We also have to be prepared to think of anything, even if it seems unlikely. Too often I see doctors try to make the operation they know how to do fit the patient. This results in removal of things that don't need to be removed, or worse, a "peek and shriek", where the scope is placed, they take a look around, and then promptly run away because they don't have the tools (skill, experience, ego small enough to ask someone with more of the first 2 than they have to help them) to do the job right. When I evaluate a patient with pain, I go through an algorithm in my head and evaluate every aspect of the pelvis. Ovaries, tubes, uterus, bladder, bowel, upper urinary tract, pelvic floor muscles, abdominal muscles, pelvic girdle/spine/orthopedic issues, upper abdominal causes, nerves, muscles, infections, masses; and on and on. When only the 1st 3 and the last 2 are considered, you miss a lot. I don't want to be like the politicians - only having scripted answers regardless of the questions. I close with the Robin Williams quote "politicians are like diapers. They should be changed often, and for the same reason."
Take care, and have a good week or 2 or 3. I'll be off for the next few weeks, but don't worry. I'll be back. Leave me all your good ideas for what to write about so I won't have to think too hard the week I come back.
Dr. Mos
Wednesday, August 22, 2007
Wednesday, August 08, 2007
Money and Medicine
OK,
I guess it's finally time to tackle the difficult issue of finances, and why we don't participate with insurance plans. One simple fact to keep in mind is that our patients come from all over the world and it would be impossible to review and sign all the contracts that various insurance plans might require, since that would be several dozen new insurance plans every few months. But that's not the real reason we don't participate with insurance plans.
First, I'll try to explain how insurance companies deal with physicians. This may not apply to all insurers, but it is how the ones I've dealt with operate. These days, most health plans are either PPOs (Preferred Provider Organizations) or HMOs (Health Maintenance Organizations).
Doctors have a choice whether or not to participate with a particular health plan.
Participating means that the doctor signs a contract agreeing to accept whatever the insurance company wants to pay the doctor without the doctor being able to bill the patient for the remainder of the fee. The upside for the doc that participates with insurance companies is that they theoretically would see more patients, so the increase in volume makes up for the decrease in reimbursement. However, this inevitably leads to the common complaint that doctors are seeing too many patients and not spending enough time with any of them.
Not participating means that the doctor doesn't accept what the insurance company wants to pay the doctor. Non-participating doctors usually see fewer patients as a rule because patients are steered toward participating doctors who have lower fees imposed on them by insurance companies, and who cost the patient less out of pocket. Unless the non-participating medical practice offers something special (like specialized surgical expertise or the new "boutique" practices guaranteeing 24 hr service and house calls), non-participating can be ruinous financially because few patients might show up at the door.
Every insurance plan (even various plans offered by the same insurance company) is different in what they will pay for any given service, but they are usually somehow tied to Medicare reimbursement rates, even though not all patients are over age 65. For an office visit, they pay a certain amount and never more. For office procedures (like an endometrial biopsy or colposcopy - looking at the cervix to find precancerous areas) there are fixed payments, likewise for surgeries. Regarding surgical reimbursement, it gets more complicated because now there's an insurance payment technique called bundling. Bundling means that if you do 3 different procedures at the same time (ie excision of endo, remove an ovarian cyst, and free up a bunch of adhesions) the insurance company would only pay for one at full price, and the rest are paid at 1/2 or 1/4 of the originally agreed upon already discounted rate. Then, on top of that, there are procedures that are considered part of another procedure, so they can't be billed for at all (like looking in the bladder- cystoscopy- after doing a sling or bladder suspension). All surgeries have codes, and the payment is based on the code, not how difficult the surgery was or how long it took. What this means for us is that excision of endo has a code. When we do an excision surgery, whether it takes 30 minutes or 3 hours the insurance reimbursement is the same. Whether Dr. Redwine (who has done 3000 cases of endo) does it , or Dr. Joe Schmoe in Hickville (who might have done 30) does it, reimbursement is the same. Plus, whether it was excised (removed) or ablated by laser or electrocautery (ineffective for treating most endometriosis but much easier and faster) you guessed it - reimbursement is the same. So, insurance companies are not impressed by efficacy of therapy or the experience of those performing the surgery. They may give lipservice to "quality indicators" and track how many patients received antibiotics before surgery (even though in many cases antibiotics don't change outcomes) and other meaningless indicators, but regarding the ultimate outcome of surgery (whether or not pain relief is achieved, how many subsequent surgeries are required, how effectively the disease has been removed from the body), insurance companies could care less. They are interested only in how little they can get away with paying a surgeon for a procedure. They have learned that if they don't pay a surgeon for a procedure, then the surgeon will not schedule the surgery in the first place, so the insurance company gets to keep even more money.
There are other problems caused by this situation that affect patients just as much as physicians. HMO reimbursements are typically lower than those of PPOs, plus HMO plans are much more restrictive about what procedures can be done for patients. They may require prior authorization before approving ultrasounds, CT scans, MRIs, surgeries, and sometimes even referrals to other physicians. Docs are limited with regard to which doctors, physical therapists, etc. they can refer patients to. They are also typically rewarded on an annual basis for saving money (translation - using fewer resources). The idea of this was originally to entice docs to keep their patients healthier by keeping their blood pressure, diabetes, and other chronic illnesses under control, because healthier patients use less resources than those that are sick (out of control diabetics, strokes from uncontrolled high blood pressure). The original idea is noble, but instead it has resulted in some (not all, hopefully not even many, but some) docs doing fewer investigations into issues like pain, issues that are probably not life threatening, but definitely impact on quality of life. Some of these problems can be difficult to diagnose and manage, so if they were pursued, they would use a fair amount of resources. By ignoring them, the less than honorable primary care provider uses less resources, has less "bother", and gets a bigger rebate at the end of the year: they are paid more for withholding care.
There's another problem that's significant - the contracted reimbursement rates can be changed by the insurer, but not by the docs. There are no "cost of living" increases. When congress decides to drop medicare reimbursement rates, since many private insurers follow medicare, there's a chance that reimbursements will decrease as well. Since doctors can't or won't unionize (the ethics of this are debatable and we won't go into that now), there's no way to have "collective bargaining" and as a group negotiate a contract with the insurer that's fair for both parties. Physicians and other health care professionals are the only group that doesn't have control over what they get paid for professional services. When the law firm down the street has increases in its expenses, they raise their rates accordingly. When Matson (the big shipping line that ships most everything that gets to Hawaii) has to pay more for fuel and more for the stevedores that unload the ships, shipping rates go up. This is not surprising to anyone. What might be surprising is that from the time I arrived in Hawaii (1998) to when I left (2006), the amount we were paid by HMSA (the Hawaiian insurer that covered 80% of our patients) for certain office procedures actually went down, as did rates for some surgeries. During this time, my malpractice costs doubled, not because of any claims, but because of the national "environment" of a general increase in claims and awards. That's another story, too.
This whole situation has caused most doctors to see more patients in order to keep the same level of reimbursement, all the while enduring increases in expenses such as malpractice coverage, staff salaries, rent, utilities, and just about everything else. When reimbursements fall and expenses rise, doctors offices and usually the docs themselves take the hit. Because of this, many docs are leaving areas of high expense and low reimbursement such as Hawaii. They can move to the midwest where expenses are low and reimbursements are higher, and have a result of a net doubling of their income. I have friends who are pediatricians who are making less money than the guys with a high school education who are unloading the ships (the stevedores). Factor in the time and money it costs to go to medical school, plus making minimum wage for 3-6 years during residency, and it's no wonder that applications to med school have been down for quite a while. Applicants are less qualified than they used to be, and as a result, the brightest and best of our young people are pursuing other fields leaving the OK but not stellar to be the doctors of the future. This should be concerning to everybody who plans on living past the next 15-20 years. But I digress....
Our situation is that our surgeries sometimes take an hour, sometimes 8 hours. The surgeries that we do do not fit into the mold that insurance companies have cast. Laser vaporization or electrocoagulation may take 15 minutes to an hour to perform because they are such simple procedures. Our techniques are much more tedious, aggressive, and risky; to be done well they require specialized training and expertise that only a few surgeons in this country possess. Our techniques are worth far more than the insurance company will pay because they do what all the previous medicines and surgeries have not done: remove the disease from the body. Most of our patients have tortuously endured several years of surgeries and therapies, consuming tens or hundreds of thousands of dollars, yet our surgical fees are a fraction of what's been spent for their past therapies. We are in a unique position to judge what our talents are worth, and insurance companies are not. Insurance companies would rather pay a surgeon a small amount of money several times than a larger amount to get the job done right the first time.
I hope this serves to shed some light on the situation that doctors are in these days, and why we have the policies that we do. Our intent is to receive a reasonable fee for a specialized, difficult surgery that few surgeons can perform. It also allows us to spend as much time with each patient as they need in order to answer all their questions, explain their disease to them, fully counsel them about their upcoming surgery so that they understand all the risks, benefits, and alternatives, and sustain the real meaning of the doctor-patient relationship- trust and confidence. This is a benefit all our patients appreciate and many people wish they had with their doctors. We do bill the patient's insurance company, but since we do not participate, the insurer sends the check to the patient rather than to us. As surgery is not something one can take back, we would have no recourse (other than through the legal system) if some unscrupulous patient kept the insurance money rather than using that to pay us: this is why we require a deposit up front. Most people place this on their credit card and by the time the bill comes, they have the reimbursement from the insurance company for a portion (and in some cases the majority) of the bill. While our fees are set, if you need surgery for removal of endometriosis, we will try to work with you to come up with a solution that is mutually satisfactory.
In conclusion (finally...) I am doing record reviews without charge for the immediate future, so if you have issues with endometriosis that is impeding your ability to have a healthy happy active life, let me see if we can help you out.
Have a great week, and take care.
Dr. Mos
I guess it's finally time to tackle the difficult issue of finances, and why we don't participate with insurance plans. One simple fact to keep in mind is that our patients come from all over the world and it would be impossible to review and sign all the contracts that various insurance plans might require, since that would be several dozen new insurance plans every few months. But that's not the real reason we don't participate with insurance plans.
First, I'll try to explain how insurance companies deal with physicians. This may not apply to all insurers, but it is how the ones I've dealt with operate. These days, most health plans are either PPOs (Preferred Provider Organizations) or HMOs (Health Maintenance Organizations).
Doctors have a choice whether or not to participate with a particular health plan.
Participating means that the doctor signs a contract agreeing to accept whatever the insurance company wants to pay the doctor without the doctor being able to bill the patient for the remainder of the fee. The upside for the doc that participates with insurance companies is that they theoretically would see more patients, so the increase in volume makes up for the decrease in reimbursement. However, this inevitably leads to the common complaint that doctors are seeing too many patients and not spending enough time with any of them.
Not participating means that the doctor doesn't accept what the insurance company wants to pay the doctor. Non-participating doctors usually see fewer patients as a rule because patients are steered toward participating doctors who have lower fees imposed on them by insurance companies, and who cost the patient less out of pocket. Unless the non-participating medical practice offers something special (like specialized surgical expertise or the new "boutique" practices guaranteeing 24 hr service and house calls), non-participating can be ruinous financially because few patients might show up at the door.
Every insurance plan (even various plans offered by the same insurance company) is different in what they will pay for any given service, but they are usually somehow tied to Medicare reimbursement rates, even though not all patients are over age 65. For an office visit, they pay a certain amount and never more. For office procedures (like an endometrial biopsy or colposcopy - looking at the cervix to find precancerous areas) there are fixed payments, likewise for surgeries. Regarding surgical reimbursement, it gets more complicated because now there's an insurance payment technique called bundling. Bundling means that if you do 3 different procedures at the same time (ie excision of endo, remove an ovarian cyst, and free up a bunch of adhesions) the insurance company would only pay for one at full price, and the rest are paid at 1/2 or 1/4 of the originally agreed upon already discounted rate. Then, on top of that, there are procedures that are considered part of another procedure, so they can't be billed for at all (like looking in the bladder- cystoscopy- after doing a sling or bladder suspension). All surgeries have codes, and the payment is based on the code, not how difficult the surgery was or how long it took. What this means for us is that excision of endo has a code. When we do an excision surgery, whether it takes 30 minutes or 3 hours the insurance reimbursement is the same. Whether Dr. Redwine (who has done 3000 cases of endo) does it , or Dr. Joe Schmoe in Hickville (who might have done 30) does it, reimbursement is the same. Plus, whether it was excised (removed) or ablated by laser or electrocautery (ineffective for treating most endometriosis but much easier and faster) you guessed it - reimbursement is the same. So, insurance companies are not impressed by efficacy of therapy or the experience of those performing the surgery. They may give lipservice to "quality indicators" and track how many patients received antibiotics before surgery (even though in many cases antibiotics don't change outcomes) and other meaningless indicators, but regarding the ultimate outcome of surgery (whether or not pain relief is achieved, how many subsequent surgeries are required, how effectively the disease has been removed from the body), insurance companies could care less. They are interested only in how little they can get away with paying a surgeon for a procedure. They have learned that if they don't pay a surgeon for a procedure, then the surgeon will not schedule the surgery in the first place, so the insurance company gets to keep even more money.
There are other problems caused by this situation that affect patients just as much as physicians. HMO reimbursements are typically lower than those of PPOs, plus HMO plans are much more restrictive about what procedures can be done for patients. They may require prior authorization before approving ultrasounds, CT scans, MRIs, surgeries, and sometimes even referrals to other physicians. Docs are limited with regard to which doctors, physical therapists, etc. they can refer patients to. They are also typically rewarded on an annual basis for saving money (translation - using fewer resources). The idea of this was originally to entice docs to keep their patients healthier by keeping their blood pressure, diabetes, and other chronic illnesses under control, because healthier patients use less resources than those that are sick (out of control diabetics, strokes from uncontrolled high blood pressure). The original idea is noble, but instead it has resulted in some (not all, hopefully not even many, but some) docs doing fewer investigations into issues like pain, issues that are probably not life threatening, but definitely impact on quality of life. Some of these problems can be difficult to diagnose and manage, so if they were pursued, they would use a fair amount of resources. By ignoring them, the less than honorable primary care provider uses less resources, has less "bother", and gets a bigger rebate at the end of the year: they are paid more for withholding care.
There's another problem that's significant - the contracted reimbursement rates can be changed by the insurer, but not by the docs. There are no "cost of living" increases. When congress decides to drop medicare reimbursement rates, since many private insurers follow medicare, there's a chance that reimbursements will decrease as well. Since doctors can't or won't unionize (the ethics of this are debatable and we won't go into that now), there's no way to have "collective bargaining" and as a group negotiate a contract with the insurer that's fair for both parties. Physicians and other health care professionals are the only group that doesn't have control over what they get paid for professional services. When the law firm down the street has increases in its expenses, they raise their rates accordingly. When Matson (the big shipping line that ships most everything that gets to Hawaii) has to pay more for fuel and more for the stevedores that unload the ships, shipping rates go up. This is not surprising to anyone. What might be surprising is that from the time I arrived in Hawaii (1998) to when I left (2006), the amount we were paid by HMSA (the Hawaiian insurer that covered 80% of our patients) for certain office procedures actually went down, as did rates for some surgeries. During this time, my malpractice costs doubled, not because of any claims, but because of the national "environment" of a general increase in claims and awards. That's another story, too.
This whole situation has caused most doctors to see more patients in order to keep the same level of reimbursement, all the while enduring increases in expenses such as malpractice coverage, staff salaries, rent, utilities, and just about everything else. When reimbursements fall and expenses rise, doctors offices and usually the docs themselves take the hit. Because of this, many docs are leaving areas of high expense and low reimbursement such as Hawaii. They can move to the midwest where expenses are low and reimbursements are higher, and have a result of a net doubling of their income. I have friends who are pediatricians who are making less money than the guys with a high school education who are unloading the ships (the stevedores). Factor in the time and money it costs to go to medical school, plus making minimum wage for 3-6 years during residency, and it's no wonder that applications to med school have been down for quite a while. Applicants are less qualified than they used to be, and as a result, the brightest and best of our young people are pursuing other fields leaving the OK but not stellar to be the doctors of the future. This should be concerning to everybody who plans on living past the next 15-20 years. But I digress....
Our situation is that our surgeries sometimes take an hour, sometimes 8 hours. The surgeries that we do do not fit into the mold that insurance companies have cast. Laser vaporization or electrocoagulation may take 15 minutes to an hour to perform because they are such simple procedures. Our techniques are much more tedious, aggressive, and risky; to be done well they require specialized training and expertise that only a few surgeons in this country possess. Our techniques are worth far more than the insurance company will pay because they do what all the previous medicines and surgeries have not done: remove the disease from the body. Most of our patients have tortuously endured several years of surgeries and therapies, consuming tens or hundreds of thousands of dollars, yet our surgical fees are a fraction of what's been spent for their past therapies. We are in a unique position to judge what our talents are worth, and insurance companies are not. Insurance companies would rather pay a surgeon a small amount of money several times than a larger amount to get the job done right the first time.
I hope this serves to shed some light on the situation that doctors are in these days, and why we have the policies that we do. Our intent is to receive a reasonable fee for a specialized, difficult surgery that few surgeons can perform. It also allows us to spend as much time with each patient as they need in order to answer all their questions, explain their disease to them, fully counsel them about their upcoming surgery so that they understand all the risks, benefits, and alternatives, and sustain the real meaning of the doctor-patient relationship- trust and confidence. This is a benefit all our patients appreciate and many people wish they had with their doctors. We do bill the patient's insurance company, but since we do not participate, the insurer sends the check to the patient rather than to us. As surgery is not something one can take back, we would have no recourse (other than through the legal system) if some unscrupulous patient kept the insurance money rather than using that to pay us: this is why we require a deposit up front. Most people place this on their credit card and by the time the bill comes, they have the reimbursement from the insurance company for a portion (and in some cases the majority) of the bill. While our fees are set, if you need surgery for removal of endometriosis, we will try to work with you to come up with a solution that is mutually satisfactory.
In conclusion (finally...) I am doing record reviews without charge for the immediate future, so if you have issues with endometriosis that is impeding your ability to have a healthy happy active life, let me see if we can help you out.
Have a great week, and take care.
Dr. Mos
Monday, July 30, 2007
Randomized controlled trials - God's gift to medicine???
Hi there.
I saw that there was a link to a letter to the editor of Fertility and Sterility from 2005 by a Dr. Clark in England posted in one of the chat rooms frequented by women with endometriosis. The letter referred to excision of endometriosis and the lack of randomised controlled trials of excision, concluding that unless and until it is proven by these randomised trials to be superior to other therapies, then it should not be recommended as a treatment. There are several issues raised in this letter that I disagree with, and I will try to explain them as simply as possible, although some of the concepts are difficult even for some doctors to understand. But here we go...
First, Dr. Clark is of the mindset that prospective randomised controlled trials (RCTs) are the only way to document effectiveness of a treatment. To understand why he is wrong takes a little background into medical research and the different types of studies. When patients are enrolled prior to treatment and randomly allocated to one of 2 or 3 groups that will undergo different treatments for the same disease, then followed to assess results, this is called a prospective (done in real time) randomized (randomly assigned) controlled (the control group is one group that either has no treatment or a well established treatment) trial. Placebo controlled trials are typically done to see if a given drug has more effectiveness than the placebo effect, which is where people think they're getting therapy so they feel better. Placebo effects are well documented for both surgery and medical treatment, and about 30% of people typically respond to placebo for a limited amount of time. Once a drug has been on the market for a while and we know it works (for example cholesterol lowering drugs), it would be unethical to have a treatment group that gets no therapy (placebo), so one drug is compared with another drug (ie Lipitor vs Vytorin) in a randomized fashion to see which drug lowers total cholesterol and LDL the most. RCTs are typically felt to be the best quality evidence available because of the lack of bias (imposing the author's own perspective on the results). However, RCTs are rarely done to study surgery, and their quality depends on how they were set up. The Women's Health Initiative (WHI) is a perfect example of a huge (15,000 pts) study that was a randomized, blinded, placebo controlled waste of money (your money as it was funded by the NIH). This was the study publicized by CNN and all the network news programs about 4-5 yrs ago where all the TV people said "stop your prempro!" because it causes heart attacks and breast cancer. The goal of the study was to see if hormone replacement therapy actually protects women from heart disease as we thought for many years based on cohort studies (see below). Unfortunately, the study design was flawed and instead of studying women who were going through menopause around age 50, they chose women with an average age of 64 who were in most cases 10 years or more past the menopausal symptoms and off HRT for that long. Then, they started the treatment group women on hormones (prempro), and tabulated the incidence of breast cancer, heart attacks, strokes, and in a sub-analysis, mental function. I don't have time to go into all the details, but suffice it to say they were shocked at the findings, and actually stopped the study early. The women in the treatment group had a higher incidence of heart attacks and dementia, contrary to what had previously been thought. After further review and several more studies designed to look at hormone replacement in women who need it (around age 50 and within 1 year of starting menopause), guess what? The women on estrogen DID have a lower risk of heart attacks AND had better mental function. The multi-million dollar RCT was wrong, and it was all because of a faulty design. Just like the Titanic (well, sorta).
The next type of study we'll examine is called a cohort study. These can be done either prospectively or retrospectively, and involve groups (cohorts) of patients that undergo a particular treatment and subsequent followup. These are the type of studies that are most often done to assess surgical outcomes. Typically, a specific type of patient is selected (ie stage IV endometriosis with no previous surgery) and a specific type of procedure is done to them (ie excision of rectovaginal endometriosis via laparoscopy) and certain outcome measures are followed over a period of time. The more specific the outcomes (quality of life questionnaires, rectal pain, lack of tenderness on exam, etc) and the longer that patients are followed without losses (ie if 100 pts had surgery and 90 are followed for 5 years then 10% are lost to follow-up) then the better the quality of information. Most of the data regarding the surgical treatment of endometriosis is in this class of studies, and most of the studies on excision clearly state the outcomes measured, and also the numbers lost to follow-up. When multiple studies done on different continents by different surgeons all agree with nearly the same results, it is probably the best quality evidence that could possibly exist. This is the case with the excision literature. One study is based on laparotomies (open surgery) with excision done on all stages of endo (Wheeler and Malinak, 1987). Redwine in 1991 wrote about a cohort of women who underwent conservative excision (without hysterectomy or oophorectomy) via laparoscopy, followed for 7 yrs. Redwine and Wright in 2001 studied women with complete obliteration of the culdesac who underwent excision, then followed them for on average 5 years. Abbott and Hawe in 2003 studied women who underwent excision in England and Australia with a 2-5 yr follow-up period. ALL of these studies had nearly identical results - a 20% likelihood of persistent endometriosis over a long follow-up period. To me, this is much better evidence that excision works than any randomized controlled study could ever be.
Another note on the RCT. I don't believe it's ethical to randomize women with pain into a surgical treatment arm vs a surgical placebo arm (making the incisions and not removing the disease). The only ethical way to do a RCT of surgical treatment of endo would be to compare excision and ablation of early stage disease. We shouldn't do it for stage IV disease, because ablation of deep disease doesn't work, as proven by cohort studies. This study of excision vs ablation for mild disease was actually done in 2004, but with only 12 pts in each group followed for 6 months. Not surprisingly, there were no differences in outcomes. Again, it seems that the better quality data comes not from the esteemed RCT, but from the consistency of results in cohort studies which have remained the same over time and continents.
Dr. Clark's second error is that he confuses chronic pelvic pain (CPP) with endometriosis. While it is true that endometriosis is one of the conditions that comprises CPP, it is the only one that is amenable to surgical excision. Several factors need consideration in order to understand the dilemma at hand. The main symptom of endometriosis is pain, but there are many other things that can cause similar pelvic pain. One of the problems we have in studying endo and responses to treatment is that we can't re-operate on everyone to assess whether or not they had resolution of their endometriosis after excision. We re-operate on the patients who have recurrence of their pain, and in general we find that about 60% of them do Not have endometriosis, ie, they're cured. Ironically, it's the patients with the deep disease (typically stage IV, some stage IIs) that have the best chance of pain relief after excision. Why is this? Most people think it's because deep endo almost always causes pain, and superficial disease may be asymptomatic. When a patient with pelvic pain from another cause (such as interstitial cystitis or IBS) undergoes a laparoscopy and is found to have stage I endo and treated for it, the initial assumption is that the pain was from the endo. But maybe the pain was actually from the IC, and the endo was a red herring. You see the problem, I think. This is why it is troubling to follow patients by symptomatology, yet we can't reoperate on every patient 5 years after their initial surgery just to see if the endo is gone, especially if they are asymptomatic.
Without a doubt there is room for more research to be done in order to direct clinicians towards the best way to treat their patients with endometriosis. This doesn't mean, however, that we "throw the baby out with the bathwater" just because we don't have the type of evidence some people want. We have to practice evidence-based medicine, yet there is always the need for common sense in order to interpret what we read.
I hope this is understandable to you all. One thing I've been impressed with since I've been here in Bend is how great an understanding of medicine many of our endo patients have. It's refreshing to have patients who truly understand treatment options, risks, benefits, and alternatives; not just not and say "Yes, doctor".
Anyway, have a great week, and let me know if you have any more questions.
Dr. Mos
ps - for those of you that wrote, next week we'll discuss the finances of medicine.
I saw that there was a link to a letter to the editor of Fertility and Sterility from 2005 by a Dr. Clark in England posted in one of the chat rooms frequented by women with endometriosis. The letter referred to excision of endometriosis and the lack of randomised controlled trials of excision, concluding that unless and until it is proven by these randomised trials to be superior to other therapies, then it should not be recommended as a treatment. There are several issues raised in this letter that I disagree with, and I will try to explain them as simply as possible, although some of the concepts are difficult even for some doctors to understand. But here we go...
First, Dr. Clark is of the mindset that prospective randomised controlled trials (RCTs) are the only way to document effectiveness of a treatment. To understand why he is wrong takes a little background into medical research and the different types of studies. When patients are enrolled prior to treatment and randomly allocated to one of 2 or 3 groups that will undergo different treatments for the same disease, then followed to assess results, this is called a prospective (done in real time) randomized (randomly assigned) controlled (the control group is one group that either has no treatment or a well established treatment) trial. Placebo controlled trials are typically done to see if a given drug has more effectiveness than the placebo effect, which is where people think they're getting therapy so they feel better. Placebo effects are well documented for both surgery and medical treatment, and about 30% of people typically respond to placebo for a limited amount of time. Once a drug has been on the market for a while and we know it works (for example cholesterol lowering drugs), it would be unethical to have a treatment group that gets no therapy (placebo), so one drug is compared with another drug (ie Lipitor vs Vytorin) in a randomized fashion to see which drug lowers total cholesterol and LDL the most. RCTs are typically felt to be the best quality evidence available because of the lack of bias (imposing the author's own perspective on the results). However, RCTs are rarely done to study surgery, and their quality depends on how they were set up. The Women's Health Initiative (WHI) is a perfect example of a huge (15,000 pts) study that was a randomized, blinded, placebo controlled waste of money (your money as it was funded by the NIH). This was the study publicized by CNN and all the network news programs about 4-5 yrs ago where all the TV people said "stop your prempro!" because it causes heart attacks and breast cancer. The goal of the study was to see if hormone replacement therapy actually protects women from heart disease as we thought for many years based on cohort studies (see below). Unfortunately, the study design was flawed and instead of studying women who were going through menopause around age 50, they chose women with an average age of 64 who were in most cases 10 years or more past the menopausal symptoms and off HRT for that long. Then, they started the treatment group women on hormones (prempro), and tabulated the incidence of breast cancer, heart attacks, strokes, and in a sub-analysis, mental function. I don't have time to go into all the details, but suffice it to say they were shocked at the findings, and actually stopped the study early. The women in the treatment group had a higher incidence of heart attacks and dementia, contrary to what had previously been thought. After further review and several more studies designed to look at hormone replacement in women who need it (around age 50 and within 1 year of starting menopause), guess what? The women on estrogen DID have a lower risk of heart attacks AND had better mental function. The multi-million dollar RCT was wrong, and it was all because of a faulty design. Just like the Titanic (well, sorta).
The next type of study we'll examine is called a cohort study. These can be done either prospectively or retrospectively, and involve groups (cohorts) of patients that undergo a particular treatment and subsequent followup. These are the type of studies that are most often done to assess surgical outcomes. Typically, a specific type of patient is selected (ie stage IV endometriosis with no previous surgery) and a specific type of procedure is done to them (ie excision of rectovaginal endometriosis via laparoscopy) and certain outcome measures are followed over a period of time. The more specific the outcomes (quality of life questionnaires, rectal pain, lack of tenderness on exam, etc) and the longer that patients are followed without losses (ie if 100 pts had surgery and 90 are followed for 5 years then 10% are lost to follow-up) then the better the quality of information. Most of the data regarding the surgical treatment of endometriosis is in this class of studies, and most of the studies on excision clearly state the outcomes measured, and also the numbers lost to follow-up. When multiple studies done on different continents by different surgeons all agree with nearly the same results, it is probably the best quality evidence that could possibly exist. This is the case with the excision literature. One study is based on laparotomies (open surgery) with excision done on all stages of endo (Wheeler and Malinak, 1987). Redwine in 1991 wrote about a cohort of women who underwent conservative excision (without hysterectomy or oophorectomy) via laparoscopy, followed for 7 yrs. Redwine and Wright in 2001 studied women with complete obliteration of the culdesac who underwent excision, then followed them for on average 5 years. Abbott and Hawe in 2003 studied women who underwent excision in England and Australia with a 2-5 yr follow-up period. ALL of these studies had nearly identical results - a 20% likelihood of persistent endometriosis over a long follow-up period. To me, this is much better evidence that excision works than any randomized controlled study could ever be.
Another note on the RCT. I don't believe it's ethical to randomize women with pain into a surgical treatment arm vs a surgical placebo arm (making the incisions and not removing the disease). The only ethical way to do a RCT of surgical treatment of endo would be to compare excision and ablation of early stage disease. We shouldn't do it for stage IV disease, because ablation of deep disease doesn't work, as proven by cohort studies. This study of excision vs ablation for mild disease was actually done in 2004, but with only 12 pts in each group followed for 6 months. Not surprisingly, there were no differences in outcomes. Again, it seems that the better quality data comes not from the esteemed RCT, but from the consistency of results in cohort studies which have remained the same over time and continents.
Dr. Clark's second error is that he confuses chronic pelvic pain (CPP) with endometriosis. While it is true that endometriosis is one of the conditions that comprises CPP, it is the only one that is amenable to surgical excision. Several factors need consideration in order to understand the dilemma at hand. The main symptom of endometriosis is pain, but there are many other things that can cause similar pelvic pain. One of the problems we have in studying endo and responses to treatment is that we can't re-operate on everyone to assess whether or not they had resolution of their endometriosis after excision. We re-operate on the patients who have recurrence of their pain, and in general we find that about 60% of them do Not have endometriosis, ie, they're cured. Ironically, it's the patients with the deep disease (typically stage IV, some stage IIs) that have the best chance of pain relief after excision. Why is this? Most people think it's because deep endo almost always causes pain, and superficial disease may be asymptomatic. When a patient with pelvic pain from another cause (such as interstitial cystitis or IBS) undergoes a laparoscopy and is found to have stage I endo and treated for it, the initial assumption is that the pain was from the endo. But maybe the pain was actually from the IC, and the endo was a red herring. You see the problem, I think. This is why it is troubling to follow patients by symptomatology, yet we can't reoperate on every patient 5 years after their initial surgery just to see if the endo is gone, especially if they are asymptomatic.
Without a doubt there is room for more research to be done in order to direct clinicians towards the best way to treat their patients with endometriosis. This doesn't mean, however, that we "throw the baby out with the bathwater" just because we don't have the type of evidence some people want. We have to practice evidence-based medicine, yet there is always the need for common sense in order to interpret what we read.
I hope this is understandable to you all. One thing I've been impressed with since I've been here in Bend is how great an understanding of medicine many of our endo patients have. It's refreshing to have patients who truly understand treatment options, risks, benefits, and alternatives; not just not and say "Yes, doctor".
Anyway, have a great week, and let me know if you have any more questions.
Dr. Mos
ps - for those of you that wrote, next week we'll discuss the finances of medicine.
Thursday, July 26, 2007
Almost a year
Hi everybody, hope you're having a great summer.
I realized the other day that it's been almost a year since I left Hawaii on my quest to become the next endometriosis specialist. I've truly learned a lot, more than I could ever put into words, and I've been lucky to have a phenomenal teacher in Dr. Redwine. He's taught me surgical techniques, anatomy, clinical diagnostic pearls, persistence, and the ever important quality of trusting your gut. Working with David has made me realize what a great man he is - he's not just an excellent technical surgeon, but he has that thing that's hard to quantify that makes someone special - the ability to relate to people where they are, to understand their situation, and be able to reach out and help them transform their lives. I am humbled every day, and at the same time I strive to be worthy to follow in his footsteps. I'm growing in my surgical abilities - what once was moderately difficult is now easy, and what seemed nearly impossible when I got here is challenging, but doable. You all know that I've been moved by your stories of frustration over multiple failed surgeries, and that knowing what you've been through both before and after trips to Bend continues to motivate me to "fight the good fight", enlightening the medical community and patients alike about the benefits of surgical excision, the shortcomings of Lupron, and the need to realize that endometriosis can be cured. Last week we read an article by a bunch of PhD microbiologists on the genetics of experimental endometriosis induced in rats ( who don't naturally get endo) and in multiple places in the article they said endometriosis was incurable. I'm realizing that it's now my job to publicly correct these old outdated incorrect opinions thrown around as facts.
So, hang in there, and remember I'm here for you. Any questions you want answered let me know and I'll do my best.
Dr. Mos
I realized the other day that it's been almost a year since I left Hawaii on my quest to become the next endometriosis specialist. I've truly learned a lot, more than I could ever put into words, and I've been lucky to have a phenomenal teacher in Dr. Redwine. He's taught me surgical techniques, anatomy, clinical diagnostic pearls, persistence, and the ever important quality of trusting your gut. Working with David has made me realize what a great man he is - he's not just an excellent technical surgeon, but he has that thing that's hard to quantify that makes someone special - the ability to relate to people where they are, to understand their situation, and be able to reach out and help them transform their lives. I am humbled every day, and at the same time I strive to be worthy to follow in his footsteps. I'm growing in my surgical abilities - what once was moderately difficult is now easy, and what seemed nearly impossible when I got here is challenging, but doable. You all know that I've been moved by your stories of frustration over multiple failed surgeries, and that knowing what you've been through both before and after trips to Bend continues to motivate me to "fight the good fight", enlightening the medical community and patients alike about the benefits of surgical excision, the shortcomings of Lupron, and the need to realize that endometriosis can be cured. Last week we read an article by a bunch of PhD microbiologists on the genetics of experimental endometriosis induced in rats ( who don't naturally get endo) and in multiple places in the article they said endometriosis was incurable. I'm realizing that it's now my job to publicly correct these old outdated incorrect opinions thrown around as facts.
So, hang in there, and remember I'm here for you. Any questions you want answered let me know and I'll do my best.
Dr. Mos
Thursday, July 12, 2007
First of all, thanks to all you ladies who wrote back about your relationships. I was especially touched by the last comment, and it's so true that endo affects more than just the spousal relationship, but also the ones with your kids, your parents, your friends. Seeing the pain our patients go through before getting any relief is what drives me to excellence, because it's only by my ability to do what Dr. Redwine does that I'll be able to carry on his legacy of helping patients who find no help elsewhere. It's gratifying to know that David thinks I'm almost there - I can successfully excise all endo in about 95% of our patients, and it's only the really really tough cases (who most other endometriosis surgeons have failed) where I need his help. I'm pretty excited about that. But I digress.....
I was asked to write about endo and infertility by Nancy Peterson. I guess she's had a lot of questions about this and thought I might shed some light on this. I told Dr. Redwine about my quest, and he said "it's a black hole"....
So, what can be said about infertility within the context of endometriosis?
First, endo patients typically are slightly less fertile than women without endo. That being said, there are many different etiologies for sub-fertility, and many may be at play in any one couple. Plenty of women with endo conceive and carry perfectly normal pregnancies, so why is it that some can't? There are the obvious reasons such as those with tubal adhesions where the tubes are stuck to the back of the uterus, or to the colon, or anything else, really. But those people are few and far between. Why does mild endo affect fertility? I pulled a couple of articles yesterday that pertain a little to this. For women with mild-minimal endo, the conception rates and delivery rates after IVF were much better in those women who underwent surgical excision of the endo prior to IVF. This suggests that even when bypassing the tubes via IVF, the endo living in the pelvis has a negative impact on fertility. Probably this is mediated by some local inflammation, but the exact reason hasn't been elucidated yet. Treatment with any medicine, whether birth control, lupron, or aromatase inhibitors only decreases fertility, and has never been proven to enhance fertility in patients with endo.
Finally, conservative surgical excision (what we do - remove the disease, not uninvolved innocent organs) has a beneficial effect on fertility. Dr. Redwine wrote a paper about conservative excision for obliteration of the culdesac (stage IV endo), and 40% of the women who wanted to conceive after surgery did. That's pretty good, considering that most of those women hurt too much beforehand to even think of getting pregnant. Surgery is the only treatment for endometriosis that improves fertility, although it is not a guarantee of fertility. The only time fertility is challenged by surgery is when the patients have large bilateral endometriomas, and after removing the cysts, at times there is not a lot of normal ovary left in place, so the number of follicles (potential eggs) is greatly decreased after surgery. Unfortunately, there's no other way of treating endometriomas that works without risk of recurrence, so pretty much that's what we have to do to get pain relief. Luckily, this is a rare situation and occurs mostly in women in their late 30s and 40s. Stimulating ovaries such as with clomid or pergonal (used with IVF cycles) is contraindicated in women with large cystic ovaries, so there's really no other alternative to ovarian cystectomy in patients with large endometriomas.
So, to summarize this rambling stream of consciousness blog, surgery preferably with excision of endometriosis lesions is the best first-line treatment for women with endo and infertility. If pregnancy is not achieved spontaneously after surgery, then success rates with IVF will still be better after surgery than before.
For those of you with endo who haven't tried to get pregnant - don't give up. Plenty of women with endo get pregnant spontaneously, the old fashioned way, without any help. For those of you with pain, excision is the most effective way to permanently get rid of the endo and preserve fertility, as well as natural hormone production.
Take care, and have a great week.
Dr. Mos
I was asked to write about endo and infertility by Nancy Peterson. I guess she's had a lot of questions about this and thought I might shed some light on this. I told Dr. Redwine about my quest, and he said "it's a black hole"....
So, what can be said about infertility within the context of endometriosis?
First, endo patients typically are slightly less fertile than women without endo. That being said, there are many different etiologies for sub-fertility, and many may be at play in any one couple. Plenty of women with endo conceive and carry perfectly normal pregnancies, so why is it that some can't? There are the obvious reasons such as those with tubal adhesions where the tubes are stuck to the back of the uterus, or to the colon, or anything else, really. But those people are few and far between. Why does mild endo affect fertility? I pulled a couple of articles yesterday that pertain a little to this. For women with mild-minimal endo, the conception rates and delivery rates after IVF were much better in those women who underwent surgical excision of the endo prior to IVF. This suggests that even when bypassing the tubes via IVF, the endo living in the pelvis has a negative impact on fertility. Probably this is mediated by some local inflammation, but the exact reason hasn't been elucidated yet. Treatment with any medicine, whether birth control, lupron, or aromatase inhibitors only decreases fertility, and has never been proven to enhance fertility in patients with endo.
Finally, conservative surgical excision (what we do - remove the disease, not uninvolved innocent organs) has a beneficial effect on fertility. Dr. Redwine wrote a paper about conservative excision for obliteration of the culdesac (stage IV endo), and 40% of the women who wanted to conceive after surgery did. That's pretty good, considering that most of those women hurt too much beforehand to even think of getting pregnant. Surgery is the only treatment for endometriosis that improves fertility, although it is not a guarantee of fertility. The only time fertility is challenged by surgery is when the patients have large bilateral endometriomas, and after removing the cysts, at times there is not a lot of normal ovary left in place, so the number of follicles (potential eggs) is greatly decreased after surgery. Unfortunately, there's no other way of treating endometriomas that works without risk of recurrence, so pretty much that's what we have to do to get pain relief. Luckily, this is a rare situation and occurs mostly in women in their late 30s and 40s. Stimulating ovaries such as with clomid or pergonal (used with IVF cycles) is contraindicated in women with large cystic ovaries, so there's really no other alternative to ovarian cystectomy in patients with large endometriomas.
So, to summarize this rambling stream of consciousness blog, surgery preferably with excision of endometriosis lesions is the best first-line treatment for women with endo and infertility. If pregnancy is not achieved spontaneously after surgery, then success rates with IVF will still be better after surgery than before.
For those of you with endo who haven't tried to get pregnant - don't give up. Plenty of women with endo get pregnant spontaneously, the old fashioned way, without any help. For those of you with pain, excision is the most effective way to permanently get rid of the endo and preserve fertility, as well as natural hormone production.
Take care, and have a great week.
Dr. Mos
Tuesday, June 12, 2007
Relationships
Hi again,
I don't know why but I felt the need to address one significant problem women with endo and pelvic pain have - relationship issues, but as I started to write I realized there is much I don't know about this aspect of the disease. So, I'll start, and you guys can send me your comments so that we can have a discussion about this and we'll all be better for it.
To start with, there are a couple of obvious issues for women with endo and their partners. The 800 lb gorilla is the sexual component, and how pain affects intimacy. We see a lot of couples with these problems, but since we're not "Dr. Ruth", we don't really delve into the emotional aspect very much (because hopefully these issues will be solved postoperatively). Yet I sense that these are very serious challenges that can either strengthen or ruin relationships. Some of the men are frustrated because they aren't as active as they'd like, yet at the same time they feel guilty when they do try intercourse and cause their wives/partners pain. Most of the women by the time we see them could care less about sex, all they want is their pain relieved, but underneath the immediate need for pain relief are the suppressed desires for a normal life and normal relations. Some couples can find other ways to share intimacy, replacing actual intercourse with other aspects of physical intimacy, or having deeper conversations to sustain the emotional intimacy. These are usually the ones that can get through these difficult times, sustaining each other when pain turns to depression and hopelessness. Other couples have difficulty and end up separating, probably for lots of different reasons - some sexual, some emotional, and some because they've lost their "normal life" that they used to have.
Another big issue is the husband/partner as caretaker thing. Some guys do this exceptionally well and are incredibly patient, doting, caring, and just great nurses. Other guys pull back into their shells when their wives/girlfriends are suffering, mainly because they don't know what to say or what to do. Here's a story for you - the first baby I ever delivered (back in 1988) was to a couple where the wife was pushing, screaming, and miserable, and her husband sat with his head on the back of the chair, looking at the wall. I thought he was such a jerk until I realized he was probably scared stiff and didnt' know how to help. I think there are quite a few guys like him - they want to do the right thing, but really don't know what to do. For men who are good caretakers, the issues change some when their wives have their surgery, then start to feel better. They have gotten so used to the "nurse" role, that it takes some adjusting to get things back to normal.
You can probably tell that I'm not a real expert in this particular area, but I think it deserves some discussion and consideration. I'm sure that all you ladies who are suffering and living with endo think about this all the time, and have a lot to contribute about your own insights and things you've learned over the years. I'd love to hear from you, because the more I know about what people are going through, the better I can counsel my patients and the more I can empathize with them.
Take care, and have a great week. I look forward to hearing from you!
Dr. Mos
I don't know why but I felt the need to address one significant problem women with endo and pelvic pain have - relationship issues, but as I started to write I realized there is much I don't know about this aspect of the disease. So, I'll start, and you guys can send me your comments so that we can have a discussion about this and we'll all be better for it.
To start with, there are a couple of obvious issues for women with endo and their partners. The 800 lb gorilla is the sexual component, and how pain affects intimacy. We see a lot of couples with these problems, but since we're not "Dr. Ruth", we don't really delve into the emotional aspect very much (because hopefully these issues will be solved postoperatively). Yet I sense that these are very serious challenges that can either strengthen or ruin relationships. Some of the men are frustrated because they aren't as active as they'd like, yet at the same time they feel guilty when they do try intercourse and cause their wives/partners pain. Most of the women by the time we see them could care less about sex, all they want is their pain relieved, but underneath the immediate need for pain relief are the suppressed desires for a normal life and normal relations. Some couples can find other ways to share intimacy, replacing actual intercourse with other aspects of physical intimacy, or having deeper conversations to sustain the emotional intimacy. These are usually the ones that can get through these difficult times, sustaining each other when pain turns to depression and hopelessness. Other couples have difficulty and end up separating, probably for lots of different reasons - some sexual, some emotional, and some because they've lost their "normal life" that they used to have.
Another big issue is the husband/partner as caretaker thing. Some guys do this exceptionally well and are incredibly patient, doting, caring, and just great nurses. Other guys pull back into their shells when their wives/girlfriends are suffering, mainly because they don't know what to say or what to do. Here's a story for you - the first baby I ever delivered (back in 1988) was to a couple where the wife was pushing, screaming, and miserable, and her husband sat with his head on the back of the chair, looking at the wall. I thought he was such a jerk until I realized he was probably scared stiff and didnt' know how to help. I think there are quite a few guys like him - they want to do the right thing, but really don't know what to do. For men who are good caretakers, the issues change some when their wives have their surgery, then start to feel better. They have gotten so used to the "nurse" role, that it takes some adjusting to get things back to normal.
You can probably tell that I'm not a real expert in this particular area, but I think it deserves some discussion and consideration. I'm sure that all you ladies who are suffering and living with endo think about this all the time, and have a lot to contribute about your own insights and things you've learned over the years. I'd love to hear from you, because the more I know about what people are going through, the better I can counsel my patients and the more I can empathize with them.
Take care, and have a great week. I look forward to hearing from you!
Dr. Mos
Wednesday, June 06, 2007
Answers to you questions.....
I've received some questions from readers on various subjects, so I thought I'd answer them individually.
First, a number of questions about back and leg pain with endo. All of the nerves in the pelvis eventually run into the spine before connecting with the spinal cord. Endo tends to frequently involve the uterosacral ligaments, which as the name suggests, run from the uterus to the sacrum (the base of the spine that forms the back of the pelvic girdle). Pain from the uterus as well as endo on the uterosacrals can cause pain that is perceived in the low back, although touching the skin over the area where the pain is felt doesn't usually increase the pain. This is known as "referred pain", and it is caused when internal organs are painful, but the pain is felt where the somatic nerves (from the skin or muscles) from the same nerve root as the visceral nerves (from internal organs) from the source of pain. In other words, the lumbar nerves go to the uterus as well as the low back and buttock. When the uterus hurts, your brain can't localize all of the pain to the inside of the pelvis, so it is felt in the back where the other nerves from the same spinal segment come from. This is the same reason that appendicitis initially causes pain around the umbilicus (when only the appendix is irritated), then as the inflammation involves the abdominal wall, the pain localizes to the right lower quadrant. The nerves from the intestine are felt as generalized belly pain rather than an isolated discreet spot. Likewise, some pelvic areas don't send pain impulses that are perceived as coming from the pelvis, but they're felt in the back. The uterus can also generate pain referred to the legs, most commonly the anterior and medial thigh. Referred pain is usually a deep pain that aches and throbs, sometimes it can feel hot or burning, usually it doesn't increase by pushing or rubbing the place where it is felt.
Back pain in the context of pelvic pain can also be due to muscular issues. Pelvic pain can cause muscle spasm of the levator muscles, which can cause spasm of the piriformis and obturator muscles. These little bugger muscles are both on the inside and outside of the pelvis, and line the inside of the pelvic cavity. They externally rotate the hip, and when they are in spasm, they can alter the normal curvature of the lumbar spine by pulling down on the sacrum and flattening the lumbar curve. They can also cause the tailbone to hurt (coccodynia). Similarly, the hamstrings (muscles of the posterior thigh that flex the knee) originate on the iscial tuberosity, the bones we all sit on, the ones that get sore riding a bike. When people are inactive, many times the hamstrings will tighten up (try touching your toes with straight knees - if you can't, your hamstrings are tight). This also pulls down on the posterior pelvis and flattens the lumbar curve, causing back pain.
Then next subject is fatigue after surgery - this is incredibly common after any kind of surgery. One can think of postop fatigue as nature's way of making sure we rest enough to allow the body to heal itself. This is a simplistic explanation, but usually the fatigue resolves slowly as activity increases. One study looked at healthy students who were made to stay in bed for varying numbers of days. Their cardiovascular fitness was measured before and after their forced rest. It took an average of three days of activity for every day in bed to recover to their previous level of conditioning, and that was without any illness or surgery, so extrapolating that study to surgery, it would be normal to take a while after surgery to feel as energetic as beforehand. When the body is injured, whether by surgery, infection, or disease (like endo), our response consists of mobilizing white blood cells to swarm to the area that's injured. They release all sorts of factors that eventually help promote the healing process, but sometimes cause more inflammation than they should. These factors are things like histamine, leukotrienes, prostaglandins, and cytokines that act in an incredibly complex way to effect wound healing. Along the way, they can also cause fatigue, and more nerve stimulation that rarely can eventually lead to neurogenic pain. There is also a connection between inflammation and sleep disturbances, as well as a defined restorative effect of deep sleep enhancing immune functioning. Pain in and of itself can cause fatigue, and pain that results in lack of exercise also increases fatigue. To some extent as this postop inflammation resolves, the inflammatory mediators decrease, and fatigue lessens. However, in order to get back to preop or pre-disease levels of fitness, you have to work at conditioning by exercising daily, pushing yourself somewhat in order to recondition your muscles, heart, and lungs.
The last question was about estrogen and endometriosis. Yes, estrogen alone does stimulate endometriosis, but most birth control pills are progesterone dominant, which means that the progesterone in the pill is able to suppress endometrial cells more than the estrogen stimulates them. This is why most women have lighter menstrual flows while on the pill than when they're not taking it. To the extent that endometriosis can be suppressed (some superficial endo can be suppressed quite well, while the deep lesions really can't), the more progesterone dominant pills will be better. The best way to take OCPs with regards to endo is to take them continuously, so that you don't have a period. This is facilitated by slowly increasing the interval between periods - first putting 2 packs together, then 3, then 4, and so on, while skipping only 3-4 days between active pills rather than 7.
The last question was related to weight and endo. Most of our endo patients are thin, so although I'm not aware of a study of endo patients and weight, I'd have to weigh in (pun intended) to say that endo does not cause weight gain. Abdominal bloating around the menses is usually either gas-related, muscle laxity of the abdominal wall, or fluid retention, and isn't really fat deposition, so that doesn't count.
Well, I hope this helps your inquisitive minds. Please let me know if there are any other burning questions you have, and I'll do my best to give you the straight scoop. Also, if you think you have endo and want me to review your records to see if Dr. Redwine and I can help, please check our website for instructions on how to submit this information.
Thanks for reading, and have a great week.
Dr. Mos
First, a number of questions about back and leg pain with endo. All of the nerves in the pelvis eventually run into the spine before connecting with the spinal cord. Endo tends to frequently involve the uterosacral ligaments, which as the name suggests, run from the uterus to the sacrum (the base of the spine that forms the back of the pelvic girdle). Pain from the uterus as well as endo on the uterosacrals can cause pain that is perceived in the low back, although touching the skin over the area where the pain is felt doesn't usually increase the pain. This is known as "referred pain", and it is caused when internal organs are painful, but the pain is felt where the somatic nerves (from the skin or muscles) from the same nerve root as the visceral nerves (from internal organs) from the source of pain. In other words, the lumbar nerves go to the uterus as well as the low back and buttock. When the uterus hurts, your brain can't localize all of the pain to the inside of the pelvis, so it is felt in the back where the other nerves from the same spinal segment come from. This is the same reason that appendicitis initially causes pain around the umbilicus (when only the appendix is irritated), then as the inflammation involves the abdominal wall, the pain localizes to the right lower quadrant. The nerves from the intestine are felt as generalized belly pain rather than an isolated discreet spot. Likewise, some pelvic areas don't send pain impulses that are perceived as coming from the pelvis, but they're felt in the back. The uterus can also generate pain referred to the legs, most commonly the anterior and medial thigh. Referred pain is usually a deep pain that aches and throbs, sometimes it can feel hot or burning, usually it doesn't increase by pushing or rubbing the place where it is felt.
Back pain in the context of pelvic pain can also be due to muscular issues. Pelvic pain can cause muscle spasm of the levator muscles, which can cause spasm of the piriformis and obturator muscles. These little bugger muscles are both on the inside and outside of the pelvis, and line the inside of the pelvic cavity. They externally rotate the hip, and when they are in spasm, they can alter the normal curvature of the lumbar spine by pulling down on the sacrum and flattening the lumbar curve. They can also cause the tailbone to hurt (coccodynia). Similarly, the hamstrings (muscles of the posterior thigh that flex the knee) originate on the iscial tuberosity, the bones we all sit on, the ones that get sore riding a bike. When people are inactive, many times the hamstrings will tighten up (try touching your toes with straight knees - if you can't, your hamstrings are tight). This also pulls down on the posterior pelvis and flattens the lumbar curve, causing back pain.
Then next subject is fatigue after surgery - this is incredibly common after any kind of surgery. One can think of postop fatigue as nature's way of making sure we rest enough to allow the body to heal itself. This is a simplistic explanation, but usually the fatigue resolves slowly as activity increases. One study looked at healthy students who were made to stay in bed for varying numbers of days. Their cardiovascular fitness was measured before and after their forced rest. It took an average of three days of activity for every day in bed to recover to their previous level of conditioning, and that was without any illness or surgery, so extrapolating that study to surgery, it would be normal to take a while after surgery to feel as energetic as beforehand. When the body is injured, whether by surgery, infection, or disease (like endo), our response consists of mobilizing white blood cells to swarm to the area that's injured. They release all sorts of factors that eventually help promote the healing process, but sometimes cause more inflammation than they should. These factors are things like histamine, leukotrienes, prostaglandins, and cytokines that act in an incredibly complex way to effect wound healing. Along the way, they can also cause fatigue, and more nerve stimulation that rarely can eventually lead to neurogenic pain. There is also a connection between inflammation and sleep disturbances, as well as a defined restorative effect of deep sleep enhancing immune functioning. Pain in and of itself can cause fatigue, and pain that results in lack of exercise also increases fatigue. To some extent as this postop inflammation resolves, the inflammatory mediators decrease, and fatigue lessens. However, in order to get back to preop or pre-disease levels of fitness, you have to work at conditioning by exercising daily, pushing yourself somewhat in order to recondition your muscles, heart, and lungs.
The last question was about estrogen and endometriosis. Yes, estrogen alone does stimulate endometriosis, but most birth control pills are progesterone dominant, which means that the progesterone in the pill is able to suppress endometrial cells more than the estrogen stimulates them. This is why most women have lighter menstrual flows while on the pill than when they're not taking it. To the extent that endometriosis can be suppressed (some superficial endo can be suppressed quite well, while the deep lesions really can't), the more progesterone dominant pills will be better. The best way to take OCPs with regards to endo is to take them continuously, so that you don't have a period. This is facilitated by slowly increasing the interval between periods - first putting 2 packs together, then 3, then 4, and so on, while skipping only 3-4 days between active pills rather than 7.
The last question was related to weight and endo. Most of our endo patients are thin, so although I'm not aware of a study of endo patients and weight, I'd have to weigh in (pun intended) to say that endo does not cause weight gain. Abdominal bloating around the menses is usually either gas-related, muscle laxity of the abdominal wall, or fluid retention, and isn't really fat deposition, so that doesn't count.
Well, I hope this helps your inquisitive minds. Please let me know if there are any other burning questions you have, and I'll do my best to give you the straight scoop. Also, if you think you have endo and want me to review your records to see if Dr. Redwine and I can help, please check our website for instructions on how to submit this information.
Thanks for reading, and have a great week.
Dr. Mos
Thursday, May 24, 2007
Diaphragmatic Endometriosis
Diaphragmatic endo is an entity little known to most physicians. Many GYNs don't even know it exists, and most pulmonologists (lung specialists) aren't very familiar with endo. It is an incredibly rare manifestation of endo, with only 30 cases reported in the literature, most occuring on the right side. I actually think it's a little more common that this, as I've seen 2 cases since I've been here in Bend (9 months). Patients typically have pain in the right chest and shoulder around the time of their menses, and sometimes can cause pain with taking a deep breath. Rarely, it can cause what's know as a catamenial pneumothorax (a dropped lung around the menstrual flow). This can cause an increase in pain as well as difficulty breathing and air hunger, feeling like you can't breathe deeply enough. Because it's rare to have this dropped lung condition, as usual, endo of the diaphragm won't typically show up on any imaging studies, so once again, we're back to requiring a high index of suspicion to diagnose this entity. Laparoscopy with the scope through the belly button will allow visualization of the anterior part of the diaphragm, which can give you an indication of whether or not there's endo present, but by far most lesions hide out towards the back of the diaphragm behind the liver, which can't be seen with the usual scope position. We use a smaller 5mm scope through a port in the right upper quadrant (just below the ribs) in order to see the entire diaphragmatic surface in patients that complain of these symptoms. When diaphragmatic endo is present, because it's usually full thickness through the entire diaphragm, we have to remove it through an open incision beneath the ribs (like an open gallbladder incision.) This is because the liver can't really be retracted laparoscopically without risking tearing it, which will cause lots of bleeding (typically considered poor form in surgery...). That's also the reason that just lasering the lesions usually doesn't work (because they extend from the abdominal surface to the pleural (lung) surface).
The amazing thing about diaphragmatic endo is that just like bowel endo, the pain magically disappears even before the incisions are healed. It's truly amazing to see.
Well, that's about all there is to say about diaphragmatic endo. Short and sweet, but oh so necessary for those who have it.
Have a great week and Memorial day weekend, and say a prayer for the families of all the troops who have given their lives to defend our freedom. Take care,
Dr. Mos
The amazing thing about diaphragmatic endo is that just like bowel endo, the pain magically disappears even before the incisions are healed. It's truly amazing to see.
Well, that's about all there is to say about diaphragmatic endo. Short and sweet, but oh so necessary for those who have it.
Have a great week and Memorial day weekend, and say a prayer for the families of all the troops who have given their lives to defend our freedom. Take care,
Dr. Mos
Tuesday, May 15, 2007
Eileen left a comment last week asking me to write about adhesions.
This is an interesting subject, and there are some vigorous debates within the academic community about whether or not adhesions cause pain. Throughout the years it has become almost a running joke that the general surgeons don't think adhesions cause pain and gynecologists think they do cause pain. In reality, I think there are some adhesions that are dense, attached to something sensitive like an ovary, or definitely pull on structures like the bowel or abdominal wall that can definitely cause pain, and I've operated on these ladies and their pain resolves after cutting and/or removing the adhesion. There are some adhesions that are more filmy with less density to them that often run from small bowel to other structures, and these adhesions rarely cause pain.
Within the context of endo, I have read many, many operative reports from other GYNs who dictate "findings of adhesions in the culdesac". Most of the time this represents stage IV endo, and the adhesions aren't from prior surgery, they're from endo. The simplistic explanation is that endometriosis lesions are like glue, and they will cause other surfaces to stick together, ie bowel to uterus, bowel to ovary, rectum to cervix, and on and on. What really happens is that the lesion secretes metabolically active substances that cause pain and inflammation. The body's response to the inflammation is that of scarring and formation of fibrosis. Just as a scar on the skin contracts with time as it matures, so do scars and fibrosis in the pelvis, causing tension on adjacent structures. Sometimes the tension adds to the basic endo pain and causes (for example) worse than normal ovulation pain because as the ovary enlarges with the cyst that contains the egg, it can pull on whatever it's attached to (usually bowel or pelvic sidewall) and cause pain.
We don't know what the #1 gynecologic cause of adhesions is, because the only way to reliably find them is to operate, and who do we operate on? Women with pain. In one study, 75% of women with endo had adhesions, and 80% of women without endo had adhesions (essentially no difference). They can be caused from prior surgery (especially when there is post operative bleeding), infections like PID, appendicitis (especially if it ruptures), diverticulitis, cancer, or anything that causes inflammation in the abdomen. Some will say that excising endometriosis causes more adhesions than lasering endo, but I'm not aware of a good quality study comparing that. What I am aware of is the dozen or so women that we have operated on since I've been in Bend who have had surgery by Dr. Redwine in the past. These women on average have a few filmy adhesions mostly in the cul-de-sac (and most of these women have had bowel resections), and not too much else. It is remarkable how often we can see where the peritoneum and endometriosis was removed at the previous surgery and healed in perfectly with no adhesions, no endometriosis, nothin'! The patients who had bowel resections usually have some filmy adhesions around their anastamosis, but compared to patients with active endo that hasn't been excised, the number and quality of adhesions is usually less for both, especially the quality (meaning the adhesions are filmy instead of dense and fibrotic).
While there are still many unanswered questions about adhesions, it is the opinion of both myself and Dr. Redwine that simple filmy adhesions don't usually cause a lot of pain, that endo hides in dense adhesions. If doctors don't know what to look for, or don't have a lot of experience with stage IV endo, they may not realize that the pain in those patients is coming not from the adhesions but from the endo at the cause of the adhesions. For stage IV endo (obliterated cul-de-sac) and bowel disease, the only way to relieve pain and cure the endo is to excise it, remove it and the associated fibrosis. Many studies have looked at Lupron and other medical therapies for this most severe type of endo, and the meds failed miserably. Unfortunately, these are the patients who are most challenging surgically and require a surgeon who is familiar with the patterns of endometriosis, and has a lot of experience with this variety of the disease. These endo specialists are few and far between, but if you are a patient with this particular flavor of endo, I guarantee you that it will be worth your while to seek out one of the handful of us who do this kind of surgery every day.
To those of you who are in pain, I wish you the very best and hope you find relief. If I can do anything for you, please don't hesitate to let me know. Either leave a comment on the blog, or email me at info@endometriosissurgeon.com, and I'll do my best.
Take care, and have a great week enjoying the beautiful spring weather.
Dr. Mos
This is an interesting subject, and there are some vigorous debates within the academic community about whether or not adhesions cause pain. Throughout the years it has become almost a running joke that the general surgeons don't think adhesions cause pain and gynecologists think they do cause pain. In reality, I think there are some adhesions that are dense, attached to something sensitive like an ovary, or definitely pull on structures like the bowel or abdominal wall that can definitely cause pain, and I've operated on these ladies and their pain resolves after cutting and/or removing the adhesion. There are some adhesions that are more filmy with less density to them that often run from small bowel to other structures, and these adhesions rarely cause pain.
Within the context of endo, I have read many, many operative reports from other GYNs who dictate "findings of adhesions in the culdesac". Most of the time this represents stage IV endo, and the adhesions aren't from prior surgery, they're from endo. The simplistic explanation is that endometriosis lesions are like glue, and they will cause other surfaces to stick together, ie bowel to uterus, bowel to ovary, rectum to cervix, and on and on. What really happens is that the lesion secretes metabolically active substances that cause pain and inflammation. The body's response to the inflammation is that of scarring and formation of fibrosis. Just as a scar on the skin contracts with time as it matures, so do scars and fibrosis in the pelvis, causing tension on adjacent structures. Sometimes the tension adds to the basic endo pain and causes (for example) worse than normal ovulation pain because as the ovary enlarges with the cyst that contains the egg, it can pull on whatever it's attached to (usually bowel or pelvic sidewall) and cause pain.
We don't know what the #1 gynecologic cause of adhesions is, because the only way to reliably find them is to operate, and who do we operate on? Women with pain. In one study, 75% of women with endo had adhesions, and 80% of women without endo had adhesions (essentially no difference). They can be caused from prior surgery (especially when there is post operative bleeding), infections like PID, appendicitis (especially if it ruptures), diverticulitis, cancer, or anything that causes inflammation in the abdomen. Some will say that excising endometriosis causes more adhesions than lasering endo, but I'm not aware of a good quality study comparing that. What I am aware of is the dozen or so women that we have operated on since I've been in Bend who have had surgery by Dr. Redwine in the past. These women on average have a few filmy adhesions mostly in the cul-de-sac (and most of these women have had bowel resections), and not too much else. It is remarkable how often we can see where the peritoneum and endometriosis was removed at the previous surgery and healed in perfectly with no adhesions, no endometriosis, nothin'! The patients who had bowel resections usually have some filmy adhesions around their anastamosis, but compared to patients with active endo that hasn't been excised, the number and quality of adhesions is usually less for both, especially the quality (meaning the adhesions are filmy instead of dense and fibrotic).
While there are still many unanswered questions about adhesions, it is the opinion of both myself and Dr. Redwine that simple filmy adhesions don't usually cause a lot of pain, that endo hides in dense adhesions. If doctors don't know what to look for, or don't have a lot of experience with stage IV endo, they may not realize that the pain in those patients is coming not from the adhesions but from the endo at the cause of the adhesions. For stage IV endo (obliterated cul-de-sac) and bowel disease, the only way to relieve pain and cure the endo is to excise it, remove it and the associated fibrosis. Many studies have looked at Lupron and other medical therapies for this most severe type of endo, and the meds failed miserably. Unfortunately, these are the patients who are most challenging surgically and require a surgeon who is familiar with the patterns of endometriosis, and has a lot of experience with this variety of the disease. These endo specialists are few and far between, but if you are a patient with this particular flavor of endo, I guarantee you that it will be worth your while to seek out one of the handful of us who do this kind of surgery every day.
To those of you who are in pain, I wish you the very best and hope you find relief. If I can do anything for you, please don't hesitate to let me know. Either leave a comment on the blog, or email me at info@endometriosissurgeon.com, and I'll do my best.
Take care, and have a great week enjoying the beautiful spring weather.
Dr. Mos
Tuesday, May 08, 2007
Interstitial Cystitis
Aloha!
Sorry I didn't write last week but we were in the OR until 10 pm one night and 8pm the other. Nobody ever said this kind of surgery was easy, but it sure is challenging.
I thought I'd write about interstitial cystitis today. IC as we call it, is the second leading cause of pelvic pain in women, behind (you guessed it) endo. Some studies show as high as 80% of women with chronic pelvic pain (CPP) had evidence of bladder involvement as a cause of pain, sometimes by itself and sometimes accompanying other pain generators such as endo or levator muscle spasm. IC causes pain in the central pelvis that can radiate out towards the groin or back to the sacrum. Some people feel it deeper, like at the top of the vagina. Typically the pain is worse with a full bladder, so these patients tend to void often, and they usually have some degree of urgency and frequency because the bladder wall doesn't like being stretched out. As you can imagine, intercourse can be miserable, although sometimes changing positions so the bladder is out of the way can make it tolerable.
One of the biggest problems with IC is that it can take years for patients to get a diagnosis. IC falls in the gap between gynecology and urology, with both specialties trying to pawn the patients off on the other. This is partially because of a lack of training about IC that hopefully is being rectified, and partially because many docs don't like taking care of chronic pain patients. It is true that patients with chronic pain can be difficult to care for, some requiring a lot of time and hand-holding and some with narcotic abuse issues, but I'll tell you what, there is nothing as satisfying as helping someone who's been in pain for a long time. Most patients don't want drugs, they want pain relief, and when you help them accomplish that, they are so grateful that for me anyway, that's all I need to keep me going. The other thing about pelvic pain is that it usually doesn't show up on ultrasounds, CT scans, or lab tests. Doctors that are good at diagnosing pelvic pain have to rely on listening to the patient and doing a focused, methodical exam, then use their powers of deductive reasoning and gut intuition to come up with an idea of what's causing the pain, and what to do about it. Doctors aren't used to making diagnoses this way these days, without confirmatory imaging studies, so it takes a special person with an interest in pelvic pain and compassion and empathy for the patients to be good at it.
Nobody is quite sure yet just what causes IC, but the leading idea is that of "neurogenic inflammation". What happens is that a painful stimulus that continues over time, (whether from endo or levator spasm or essentially anything in the pelvis) eventually can cause reverse transmission of nerve impulses from the spinal cord on down to the pelvis. When these stimuli reach the end of the nerve (for IC the bladder nerves) certain substances (like histamine, cytokines, and prostaglandins) are released from mast cells that cause swelling and nerve irritation. These inflammatory mediators that the mast cells release then cause more nerve irritation via other mediators that upregulate the pain fibers (nerve growth factor and substance P), eventually causing a vicious circle of pain. Another theory is that there are breaks in the mucousy lining of the bladder that protects the cells from all the irritants that the kidneys are excreting. These two theories are not mutually exclusive and likely the neurogenic inflammation causes the breaks in the lining (the technical term is the "gag layer" because it is composed of glycosamino glycan, or gag, which is a big huge sugar molecule).
It is logical based on the above theory of neurogenic inflammation why there is a significant overlap between those with endo and those with IC, but this doesn't explain why women without endo (or men, for that matter) get IC. Going back to the painful stimuli part of the theory, it is possible that any pain generator in the pelvis can induce the backwards nerve transmission and thereby neurogenic inflammation. It is a well-known fact that we are in an epidemic of abuse in this country. Whether by parents, partners, or strangers, nearly one third of all US women admit to having been abused at some point in their life. Women with IC have a higher percentage of abuse than those without - nearly half of IC patients admit to being the victim of abuse. The reason this is significant is that any abuse, but especially sexual abuse can cause a prolonged spasm of the levators, the muscles of the pelvic floor (the muscles used in Kegel exercises). Prolonged muscle spasm eventually causes increased firing of the pain sensing nerves in the muscles, which starts the vicious cycle. There is a lot of cross-innervation in the pelvis, which means that nerves to the bladder, pelvic floor, upper vagina, rectum, and any other pelvic site come from the same nerve root as it exits the spinal canal. They also interconnect like an LA freeway, joining and separating often on their way to the end-organ. This allows for 2 things to happen - the first is that a painful stimulus can start anywhere in the pelvis and cause the neurogenic inflammation in another pelvic location (this is also the proposed etiology for vulvar vestibulitis, but we won't get into that today). The second is that "neural cross-talk", or this sharing of nerve fibers between various organs in the pelvis, is probably why there are patients with IC, irritable bowel syndrome, and fibromyalgia all at the same time.
IC can be treated in a variety of ways, but none are "curative". Hydrodistention (blowing up the bladder with water under anesthesia) is both diagnostic and therapeutic. When either ulcers (only seen in 10-15% of pts) or glomerulations (small areas of bleeding from surface blood vessels) are seen after hydrodistention, then IC is present. Hydrodistention also is known to give some relief for a few months afterwards. Bladder instillations are my favorite treatment because they work quickly and pretty effectively. For people with significant pain, instilling lidocaine (a local anesthetic) and heparin (rebuilds the mucous lining) can give them immediate pain relief that can last for several days. Initially the instillations are 3 times a week, but with time the interval can be stretched out to a week or 2. Elmiron is a drug designed specifically for IC. It also rebuilds the lining like heparin does, but it takes 3-6 months to see a benefit, which is why I like to start with both oral Elmiron and bladder instillations. Tricyclic antidepressants work well to depress the pain fiber activation, essentially putting a damper on the hypersensitive pain nerves. Since chronic pain does cause depression, having a side effects of a little mood elevation and improved sleep doesn't hurt, either. Some people advocate antihistamines, specifically atarax, because it stabilizes the mast cells so they don't release their nasty inflammatory mediators, but I find that most people can't tolerate the sleepiness it causes.
I think there's a lot we don't yet know about pain, why some patients have minimal disease and a lot of pain, why some patients have a ton of disease and a little pain, and why some people develop new pain after their old pain was fixed. The good news is that a lot of research is being done to identify places in the inflammation cascade as well as the nervous system where interventions can be made. Right now we have some drugs that definitely can help women with IC and those with chronic pelvic pain (non-endo related), but I think that within the next 5-10 years some significant advances will be made. (for those of you that missed the previous articles on excision, that's the cure for endo). Just think, it was only 20 yrs ago or so when they called IC a "disease of hysterical women" and told them to see a shrink!
There is hope on the horizon, and if we're lucky it will come soon.
Take care and have a great week. Don't forget, send me your questions and ideas for next week's blog. My record review are free until further notice, and you get two for the price of one!
Dr. Mos
Sorry I didn't write last week but we were in the OR until 10 pm one night and 8pm the other. Nobody ever said this kind of surgery was easy, but it sure is challenging.
I thought I'd write about interstitial cystitis today. IC as we call it, is the second leading cause of pelvic pain in women, behind (you guessed it) endo. Some studies show as high as 80% of women with chronic pelvic pain (CPP) had evidence of bladder involvement as a cause of pain, sometimes by itself and sometimes accompanying other pain generators such as endo or levator muscle spasm. IC causes pain in the central pelvis that can radiate out towards the groin or back to the sacrum. Some people feel it deeper, like at the top of the vagina. Typically the pain is worse with a full bladder, so these patients tend to void often, and they usually have some degree of urgency and frequency because the bladder wall doesn't like being stretched out. As you can imagine, intercourse can be miserable, although sometimes changing positions so the bladder is out of the way can make it tolerable.
One of the biggest problems with IC is that it can take years for patients to get a diagnosis. IC falls in the gap between gynecology and urology, with both specialties trying to pawn the patients off on the other. This is partially because of a lack of training about IC that hopefully is being rectified, and partially because many docs don't like taking care of chronic pain patients. It is true that patients with chronic pain can be difficult to care for, some requiring a lot of time and hand-holding and some with narcotic abuse issues, but I'll tell you what, there is nothing as satisfying as helping someone who's been in pain for a long time. Most patients don't want drugs, they want pain relief, and when you help them accomplish that, they are so grateful that for me anyway, that's all I need to keep me going. The other thing about pelvic pain is that it usually doesn't show up on ultrasounds, CT scans, or lab tests. Doctors that are good at diagnosing pelvic pain have to rely on listening to the patient and doing a focused, methodical exam, then use their powers of deductive reasoning and gut intuition to come up with an idea of what's causing the pain, and what to do about it. Doctors aren't used to making diagnoses this way these days, without confirmatory imaging studies, so it takes a special person with an interest in pelvic pain and compassion and empathy for the patients to be good at it.
Nobody is quite sure yet just what causes IC, but the leading idea is that of "neurogenic inflammation". What happens is that a painful stimulus that continues over time, (whether from endo or levator spasm or essentially anything in the pelvis) eventually can cause reverse transmission of nerve impulses from the spinal cord on down to the pelvis. When these stimuli reach the end of the nerve (for IC the bladder nerves) certain substances (like histamine, cytokines, and prostaglandins) are released from mast cells that cause swelling and nerve irritation. These inflammatory mediators that the mast cells release then cause more nerve irritation via other mediators that upregulate the pain fibers (nerve growth factor and substance P), eventually causing a vicious circle of pain. Another theory is that there are breaks in the mucousy lining of the bladder that protects the cells from all the irritants that the kidneys are excreting. These two theories are not mutually exclusive and likely the neurogenic inflammation causes the breaks in the lining (the technical term is the "gag layer" because it is composed of glycosamino glycan, or gag, which is a big huge sugar molecule).
It is logical based on the above theory of neurogenic inflammation why there is a significant overlap between those with endo and those with IC, but this doesn't explain why women without endo (or men, for that matter) get IC. Going back to the painful stimuli part of the theory, it is possible that any pain generator in the pelvis can induce the backwards nerve transmission and thereby neurogenic inflammation. It is a well-known fact that we are in an epidemic of abuse in this country. Whether by parents, partners, or strangers, nearly one third of all US women admit to having been abused at some point in their life. Women with IC have a higher percentage of abuse than those without - nearly half of IC patients admit to being the victim of abuse. The reason this is significant is that any abuse, but especially sexual abuse can cause a prolonged spasm of the levators, the muscles of the pelvic floor (the muscles used in Kegel exercises). Prolonged muscle spasm eventually causes increased firing of the pain sensing nerves in the muscles, which starts the vicious cycle. There is a lot of cross-innervation in the pelvis, which means that nerves to the bladder, pelvic floor, upper vagina, rectum, and any other pelvic site come from the same nerve root as it exits the spinal canal. They also interconnect like an LA freeway, joining and separating often on their way to the end-organ. This allows for 2 things to happen - the first is that a painful stimulus can start anywhere in the pelvis and cause the neurogenic inflammation in another pelvic location (this is also the proposed etiology for vulvar vestibulitis, but we won't get into that today). The second is that "neural cross-talk", or this sharing of nerve fibers between various organs in the pelvis, is probably why there are patients with IC, irritable bowel syndrome, and fibromyalgia all at the same time.
IC can be treated in a variety of ways, but none are "curative". Hydrodistention (blowing up the bladder with water under anesthesia) is both diagnostic and therapeutic. When either ulcers (only seen in 10-15% of pts) or glomerulations (small areas of bleeding from surface blood vessels) are seen after hydrodistention, then IC is present. Hydrodistention also is known to give some relief for a few months afterwards. Bladder instillations are my favorite treatment because they work quickly and pretty effectively. For people with significant pain, instilling lidocaine (a local anesthetic) and heparin (rebuilds the mucous lining) can give them immediate pain relief that can last for several days. Initially the instillations are 3 times a week, but with time the interval can be stretched out to a week or 2. Elmiron is a drug designed specifically for IC. It also rebuilds the lining like heparin does, but it takes 3-6 months to see a benefit, which is why I like to start with both oral Elmiron and bladder instillations. Tricyclic antidepressants work well to depress the pain fiber activation, essentially putting a damper on the hypersensitive pain nerves. Since chronic pain does cause depression, having a side effects of a little mood elevation and improved sleep doesn't hurt, either. Some people advocate antihistamines, specifically atarax, because it stabilizes the mast cells so they don't release their nasty inflammatory mediators, but I find that most people can't tolerate the sleepiness it causes.
I think there's a lot we don't yet know about pain, why some patients have minimal disease and a lot of pain, why some patients have a ton of disease and a little pain, and why some people develop new pain after their old pain was fixed. The good news is that a lot of research is being done to identify places in the inflammation cascade as well as the nervous system where interventions can be made. Right now we have some drugs that definitely can help women with IC and those with chronic pelvic pain (non-endo related), but I think that within the next 5-10 years some significant advances will be made. (for those of you that missed the previous articles on excision, that's the cure for endo). Just think, it was only 20 yrs ago or so when they called IC a "disease of hysterical women" and told them to see a shrink!
There is hope on the horizon, and if we're lucky it will come soon.
Take care and have a great week. Don't forget, send me your questions and ideas for next week's blog. My record review are free until further notice, and you get two for the price of one!
Dr. Mos
Tuesday, April 24, 2007
Fatigue and Endo
Hi there yet again,
It's a beautiful day here in Bend Overagain (that's what my friend Brad calls Bend), plus, I just figured out how to stream jazz over the internet into my little speakers on my desk. Cool.
Well, in my quest for new and interesting things to write about, I was asked to enlighten you all about endo and fatigue. Now this is a difficult topic, because there is not much in the literature about these 2 entities. One paper was written by some people at NIH and Mary Lou Ballweg, the founder of the Endo Assn. They sent out a survey to over 3000 women with endo, and asked about their pain, and any other diagnoses they'd been given. As you can imagine, these types of papers are not the most reliable, because they're based completely on the responses of individuals, which are truthful most of the time, but sometimes there can be some bias interjected. Regardless, this paper does give us some idea of the prevalence of various other diseases in women with endo compared to the general population. "Chronic fatigue syndrome" was much more common in women with endo than in the general population, but was still a very small percentage (4.6% vs 0.03%). Chronic fatigue syndrome is a nebulous diagnosis in the way that fibromyalgia is, where there are symptoms present but no known cause for them, and the authors did not comment on why the incidence was so much higher in women with endo. Just looking at fatigue in general, chronic pain can induce fatigue, depression, and anxiety. This may happen because of how pain limits activity, and with decreased physical cardiovascular activity, there usually follows a sense of tiredness.
It may be due to chemical mediators of inflammation that are produced by the endo and get absorbed systemically and act on the brain to cause fatigue. Or, it may be due to changes in the part of the brain where pain and emotions are processed. Chronic pain has been shown to cause atrophy in certain areas of the brain (thalamus and dorso-lateral prefrontal cortex). This increases the emotional component of pain, and decreases one's emotional reasoning powers. There is much that is yet unknown about the way the brain processes pain, but suffice it to say that it is very complicated, with interactions between chemical mediators, receptors for natural chemicals like seratonin and dopamine, opioids, and various other modulators of nerve cell function. I'm fascinated by why some women (not too many, thankfully) continue to have pain after their endo is excised. We all know that endo is only one of many sources of pelvic pain, but it is the only one with a defined cure. There is research into why there is such an overlap between patients with Interstitial Cystitis (IC), Irritable Bowel syndrome (IBS), and Vulvodynia (inflammation of the vaginal opening). The current thoughts are that there is cross-innervation of all the pelvic organs, and when one is inflamed, it causes inflammation in the other organs via nerve mediation (neurogenic inflammation). Why are some women lucky enough to have their pain resolve after their endo is excised, but a few have the persistent "chronic pelvic pain" syndrome with this cross-innervation and cross-inflammation? Probably it goes back to what makes us individual - our genes.
I don't want to make you discouraged by this - by far the majority of women with endometriosis have a dramatic reduction of pain after excisional surgery, but there are a few (ironically with typically very little endo) that don't, and those are the puzzling ones I was referring to above.
I am confident that the research into nerve and brain function specific to pain processing will continue, and continue with the focus on pelvic pain, so that a few years from now we'll look back and laugh at how uninformed we were back in 2007, like looking back at the days before penicillin. I want to encourage all of you to persist in finding solutions to your pain. Everyone has a slightly different journey, but my hope is that you can find a way to live happy, productive, pain-free (or at least pain-controlled) lives. I heard someone say that the key to being happy at work is to feel like you have a purpose, and that you're pursuing that. I know that my purpose in life is to help women with pain, (and incontinence), and in so doing to swim upstream against the current of Lupron, Lasers, and ineffective management of endo.
I wish you all well, and again, I will be happy to review any of your records to see what we can do for you here in Bend. Let me know what topics you're interested in reading about.
Have a great week.
Dr. Mos
It's a beautiful day here in Bend Overagain (that's what my friend Brad calls Bend), plus, I just figured out how to stream jazz over the internet into my little speakers on my desk. Cool.
Well, in my quest for new and interesting things to write about, I was asked to enlighten you all about endo and fatigue. Now this is a difficult topic, because there is not much in the literature about these 2 entities. One paper was written by some people at NIH and Mary Lou Ballweg, the founder of the Endo Assn. They sent out a survey to over 3000 women with endo, and asked about their pain, and any other diagnoses they'd been given. As you can imagine, these types of papers are not the most reliable, because they're based completely on the responses of individuals, which are truthful most of the time, but sometimes there can be some bias interjected. Regardless, this paper does give us some idea of the prevalence of various other diseases in women with endo compared to the general population. "Chronic fatigue syndrome" was much more common in women with endo than in the general population, but was still a very small percentage (4.6% vs 0.03%). Chronic fatigue syndrome is a nebulous diagnosis in the way that fibromyalgia is, where there are symptoms present but no known cause for them, and the authors did not comment on why the incidence was so much higher in women with endo. Just looking at fatigue in general, chronic pain can induce fatigue, depression, and anxiety. This may happen because of how pain limits activity, and with decreased physical cardiovascular activity, there usually follows a sense of tiredness.
It may be due to chemical mediators of inflammation that are produced by the endo and get absorbed systemically and act on the brain to cause fatigue. Or, it may be due to changes in the part of the brain where pain and emotions are processed. Chronic pain has been shown to cause atrophy in certain areas of the brain (thalamus and dorso-lateral prefrontal cortex). This increases the emotional component of pain, and decreases one's emotional reasoning powers. There is much that is yet unknown about the way the brain processes pain, but suffice it to say that it is very complicated, with interactions between chemical mediators, receptors for natural chemicals like seratonin and dopamine, opioids, and various other modulators of nerve cell function. I'm fascinated by why some women (not too many, thankfully) continue to have pain after their endo is excised. We all know that endo is only one of many sources of pelvic pain, but it is the only one with a defined cure. There is research into why there is such an overlap between patients with Interstitial Cystitis (IC), Irritable Bowel syndrome (IBS), and Vulvodynia (inflammation of the vaginal opening). The current thoughts are that there is cross-innervation of all the pelvic organs, and when one is inflamed, it causes inflammation in the other organs via nerve mediation (neurogenic inflammation). Why are some women lucky enough to have their pain resolve after their endo is excised, but a few have the persistent "chronic pelvic pain" syndrome with this cross-innervation and cross-inflammation? Probably it goes back to what makes us individual - our genes.
I don't want to make you discouraged by this - by far the majority of women with endometriosis have a dramatic reduction of pain after excisional surgery, but there are a few (ironically with typically very little endo) that don't, and those are the puzzling ones I was referring to above.
I am confident that the research into nerve and brain function specific to pain processing will continue, and continue with the focus on pelvic pain, so that a few years from now we'll look back and laugh at how uninformed we were back in 2007, like looking back at the days before penicillin. I want to encourage all of you to persist in finding solutions to your pain. Everyone has a slightly different journey, but my hope is that you can find a way to live happy, productive, pain-free (or at least pain-controlled) lives. I heard someone say that the key to being happy at work is to feel like you have a purpose, and that you're pursuing that. I know that my purpose in life is to help women with pain, (and incontinence), and in so doing to swim upstream against the current of Lupron, Lasers, and ineffective management of endo.
I wish you all well, and again, I will be happy to review any of your records to see what we can do for you here in Bend. Let me know what topics you're interested in reading about.
Have a great week.
Dr. Mos
Thursday, April 12, 2007
Hi there,
I got a request to talk about excision, why what we do is different than other docs, and why it's different than using a laser or other ablative techniques. I will do that. Yesterday my nurse Deena told me to look at some chat rooms about endo and as I read them, it really blew my mind how many women are not getting appropriate treatment that will bring them relief. I'll comment on that later as well.
To begin with, endometriosis is a disease that forms when cells in the pelvis that have the genetic propensity to turn into cells of the reproductive tract are stimulated by hormones. The stimulation by estrogen makes normal peritoneal cells turn into cells that resemble the endometrial lining of the uterus. As the stimulation continues, the disease continues to grow but only in the original locations where it started. This means that endo can grow deeper, but not have lateral spread as a rule. When the cells are metabolically active, they make inflammatory mediators that cause fibrosis (scarring), adhesions (different type of scarring), and pain. As a woman ages, the endo gets deeper and can cause scarring around other organs like the ureters, bowel, nerves, and just about anything else that is nearby. Suppressing estrogen levels, either by birth control, lupron, or aromatase inhibitors, can lessen the metabolic activity of the endo and thereby lessen the pain, but the disease continues in the body and will reactivate itself after the suppressive medicine is stopped. The amount that the endo is suppressed is variable from patient to patient, and this is why some women have no pain on medical therapy, and others have essentially no relief whatsoever. Looking at surgical treatments, some docs just look in the belly and say "yep, that looks like endo", take out the scope, close the incisions and prescribe lupron. This is not surgical management of anything, and it is WRONG. The most common surgery for endo consists of burning the surface of the lesions with either a laser (light energy) or cautery (plain old electrons). If the disease is superficial, then these treatments can work, but more often than not, it works for a while, and then the "roots", or the deeper part of the lesion that didn't get killed by the electricity start becoming active again, and the pain returns. This doesn't mean that the endo comes back, (because it was never gone), but the pain comes back. The other problem with simple burning is that when endo is overlying the ureters or the big blood vessels that feed the legs, or is on the bowel, it doesn't get treated at all for fear of injuring the underlying important structure.
What Dr. Redwine and I (and 3 or 4 other docs in the US) do is to carefully dissect the entire lesion of endo, whether it's superficial or deep. When the lesions are superficial, then removing them is easy, like taking the skin off of a chicken breast without nicking the meat. When the lesions are deep, then it's a lot more difficult and takes a lot of time and skill. We use plain old-fashioned cautery to do this dissection, because Dr. Redwine feels that this technique allows us to get a better feel for where the bottom of the lesion is. Excision can be done with a laser, but it can be harder to identify the base of the lesion so you don't cut through it leaving some endo in place. Whatever tools are used really doesn't matter, but what does matter is that all of the endo is removed with the least amount of bleeding and injury to the surrounding tissues and organs. Once endometriosis is removed, it doesn't come back. The only way it comes back is when it wasn't all removed to begin with. We have removed endo the size of chicken eggs in the rectovaginal septum that other "specialists" in endo said couldn't be removed because it was too low. We have removed endo that has encased the ureter, actually removing a part of the ureter, then sewing it back together again. Wherever endo is, we have removed it, and 99% of the time it can be done through the laparoscope (so the patient has little band-aid incisions and heals up faster). The quality of an endometriosis surgeon should be judged by these 3 things: How often do they remove 100% of the endometriosis; what is their complication rate, and how often do they open up the patient ( make a big incision). If you ask your doctor about these issues and they get defensive, run the other way. If they say they never have any complications, run the other way because that is impossible (either that or they never do any surgery). Any doc worth anything should be able to have a friendly, informative conversation about exactly what they are planning on doing, what their experience is with that procedure, alternatives to the procedure, and what complications can happen. This is called "informed consent", the dialogue that happens between the surgeon and the patient, not the form you sign, like a permission slip in kindergarten. If they say they're too busy to talk to you preop, then they'll be too busy to take care of you postop.
Some pelvic pain is indeed caused by the uterus and won't go away by removing the endo. In these cases , there are 2 options. One is to remove the uterus, if the patient is done using it (done with childbearing). The other option is something called a "presacral neurectomy". We do these very commonly in younger women who have a lot of uterine pain - midline cramping during the period, pain that radiates into the anterior thighs and back during menses. The "PSN", as we call it, works 75% of the time, and takes about 2 minutes to do at the time of a laparoscopy for endo with very little risk.
I don't know of any studies that have looked specifically at pain relief after excision alone vs excision with hysterectomy, but this brings up an important point. When a gynecologist evaluates a patient with pelvic pain, the goal should be to identify all possible sources of the pain. Some women have pain from endo with a perfectly normal uterus. Some will have a tender uterus with or without endo. Some will have a tender bladder, or interstitial cystitis. Some have tenderness of their levator muscles, the muscles of the pelvic floor that are most famous by being contracted with "Kegel exercises." All too often there is a "one size fits all" answer that consists of "hysterectomy" or "oophorectomy" (take out an ovary), because that's the only surgery some docs think will help. Sad, but true. Certainly there are plenty of great GYNs that understand pain, and understand how to diagnose what's actually causing the pain, but unfortunately listening to patients and making a diagnosis based on what they tell you and what the exam is like is becoming a lost art. It's faster to order a Cat scan or an ultrasound, but those tests won't help ferret out the multiple causes of pelvic pain. The short answer is that if your pain is from endo, then remove the endo. If your pain is likely to be from the uterus, then either do a PSN or, if you're done having kids, then have a hyst. If your pain is from the bladder, then you need to be checked for interstitial cystitis. Anything that is likely to be causing pain needs to be addressed in order to have the best chance of relieving the pain.
Well, I think this is an epic, long-winded blog, but I wanted to give some facts for those of you trying to figure out what's true and what's not. Remember, let me know what you want to know about, and I'll do my best. Also, I'm doing FREE record reviews, so check with our website for instructions on how to submit your records to get a free personalized recommendation made just for you. (Do I sound like Bob Barker???? sorry...)
Until next week,
Dr. Mos, signing off.
I got a request to talk about excision, why what we do is different than other docs, and why it's different than using a laser or other ablative techniques. I will do that. Yesterday my nurse Deena told me to look at some chat rooms about endo and as I read them, it really blew my mind how many women are not getting appropriate treatment that will bring them relief. I'll comment on that later as well.
To begin with, endometriosis is a disease that forms when cells in the pelvis that have the genetic propensity to turn into cells of the reproductive tract are stimulated by hormones. The stimulation by estrogen makes normal peritoneal cells turn into cells that resemble the endometrial lining of the uterus. As the stimulation continues, the disease continues to grow but only in the original locations where it started. This means that endo can grow deeper, but not have lateral spread as a rule. When the cells are metabolically active, they make inflammatory mediators that cause fibrosis (scarring), adhesions (different type of scarring), and pain. As a woman ages, the endo gets deeper and can cause scarring around other organs like the ureters, bowel, nerves, and just about anything else that is nearby. Suppressing estrogen levels, either by birth control, lupron, or aromatase inhibitors, can lessen the metabolic activity of the endo and thereby lessen the pain, but the disease continues in the body and will reactivate itself after the suppressive medicine is stopped. The amount that the endo is suppressed is variable from patient to patient, and this is why some women have no pain on medical therapy, and others have essentially no relief whatsoever. Looking at surgical treatments, some docs just look in the belly and say "yep, that looks like endo", take out the scope, close the incisions and prescribe lupron. This is not surgical management of anything, and it is WRONG. The most common surgery for endo consists of burning the surface of the lesions with either a laser (light energy) or cautery (plain old electrons). If the disease is superficial, then these treatments can work, but more often than not, it works for a while, and then the "roots", or the deeper part of the lesion that didn't get killed by the electricity start becoming active again, and the pain returns. This doesn't mean that the endo comes back, (because it was never gone), but the pain comes back. The other problem with simple burning is that when endo is overlying the ureters or the big blood vessels that feed the legs, or is on the bowel, it doesn't get treated at all for fear of injuring the underlying important structure.
What Dr. Redwine and I (and 3 or 4 other docs in the US) do is to carefully dissect the entire lesion of endo, whether it's superficial or deep. When the lesions are superficial, then removing them is easy, like taking the skin off of a chicken breast without nicking the meat. When the lesions are deep, then it's a lot more difficult and takes a lot of time and skill. We use plain old-fashioned cautery to do this dissection, because Dr. Redwine feels that this technique allows us to get a better feel for where the bottom of the lesion is. Excision can be done with a laser, but it can be harder to identify the base of the lesion so you don't cut through it leaving some endo in place. Whatever tools are used really doesn't matter, but what does matter is that all of the endo is removed with the least amount of bleeding and injury to the surrounding tissues and organs. Once endometriosis is removed, it doesn't come back. The only way it comes back is when it wasn't all removed to begin with. We have removed endo the size of chicken eggs in the rectovaginal septum that other "specialists" in endo said couldn't be removed because it was too low. We have removed endo that has encased the ureter, actually removing a part of the ureter, then sewing it back together again. Wherever endo is, we have removed it, and 99% of the time it can be done through the laparoscope (so the patient has little band-aid incisions and heals up faster). The quality of an endometriosis surgeon should be judged by these 3 things: How often do they remove 100% of the endometriosis; what is their complication rate, and how often do they open up the patient ( make a big incision). If you ask your doctor about these issues and they get defensive, run the other way. If they say they never have any complications, run the other way because that is impossible (either that or they never do any surgery). Any doc worth anything should be able to have a friendly, informative conversation about exactly what they are planning on doing, what their experience is with that procedure, alternatives to the procedure, and what complications can happen. This is called "informed consent", the dialogue that happens between the surgeon and the patient, not the form you sign, like a permission slip in kindergarten. If they say they're too busy to talk to you preop, then they'll be too busy to take care of you postop.
Some pelvic pain is indeed caused by the uterus and won't go away by removing the endo. In these cases , there are 2 options. One is to remove the uterus, if the patient is done using it (done with childbearing). The other option is something called a "presacral neurectomy". We do these very commonly in younger women who have a lot of uterine pain - midline cramping during the period, pain that radiates into the anterior thighs and back during menses. The "PSN", as we call it, works 75% of the time, and takes about 2 minutes to do at the time of a laparoscopy for endo with very little risk.
I don't know of any studies that have looked specifically at pain relief after excision alone vs excision with hysterectomy, but this brings up an important point. When a gynecologist evaluates a patient with pelvic pain, the goal should be to identify all possible sources of the pain. Some women have pain from endo with a perfectly normal uterus. Some will have a tender uterus with or without endo. Some will have a tender bladder, or interstitial cystitis. Some have tenderness of their levator muscles, the muscles of the pelvic floor that are most famous by being contracted with "Kegel exercises." All too often there is a "one size fits all" answer that consists of "hysterectomy" or "oophorectomy" (take out an ovary), because that's the only surgery some docs think will help. Sad, but true. Certainly there are plenty of great GYNs that understand pain, and understand how to diagnose what's actually causing the pain, but unfortunately listening to patients and making a diagnosis based on what they tell you and what the exam is like is becoming a lost art. It's faster to order a Cat scan or an ultrasound, but those tests won't help ferret out the multiple causes of pelvic pain. The short answer is that if your pain is from endo, then remove the endo. If your pain is likely to be from the uterus, then either do a PSN or, if you're done having kids, then have a hyst. If your pain is from the bladder, then you need to be checked for interstitial cystitis. Anything that is likely to be causing pain needs to be addressed in order to have the best chance of relieving the pain.
Well, I think this is an epic, long-winded blog, but I wanted to give some facts for those of you trying to figure out what's true and what's not. Remember, let me know what you want to know about, and I'll do my best. Also, I'm doing FREE record reviews, so check with our website for instructions on how to submit your records to get a free personalized recommendation made just for you. (Do I sound like Bob Barker???? sorry...)
Until next week,
Dr. Mos, signing off.
Thursday, March 29, 2007
Well aloha once again,
Last week I took a vacation and went back to my old stomping grounds in Hawaii. (don't tell anybody or they'll think I'm slacking!) It was great to see my house there, and my old friends. The highlight of the trip was seeing all the whales! It was truly whale season, and we must have seen 100 whales, more than I've ever seen. We were fishing one day on a boat, and this huge humpback breached right in front of the boat, then rested at the surface just off the bow for several minutes before diving back into the deep. That was cool.
So what's new in the realm of Endo???
Well, there was a new paper published this month that identified genes in the peritoneum of women with endometriosis that are not active in women without endometriosis. These genes are thought to promote the development of endometriosis lesions via the same pathways that were used during embryogenesis (the formation of organ systems in the first 10 weeks after conception). The genes were found in highest concentration within endometriosis lesions, then slightly less in normal appearing peritoneal cells of women with endometriosis, and almost none in the peritoneal cells of women without endometriosis. These same genes are important in the formation of a normal uterus and normal endometrial tissue. Their conclusion was the same as Dr. Redwine has spent his life trying to prove: that endometriosis forms by a metaplastic (change) process where normal peritoneal cells (cells lining the abdominal cavity) change tissue types such that they become cells that resemble the endometrium (endometriosis). This means that it is NOT formed by retrograde menstruation (Sampson's theory) and does NOT continue to repopulate the pelvis and regrow after excision, therefore it is NOT futile to remove endometriosis instead of giving Lupron. Gee, sounds familiar, eh????
When I was in Hawaii last week I told my old neighbors about what I was doing here in Bend, and about what endometriosis surgery was like. I told him that endo was like a weed that had really deep roots that wrapped around all the important structures in the pelvis like the ureters, bowel, blood vessels, etc. He said, "why not use Roundup?" I just laughed, because the analogy of Roundup to Lupron was so obvious. The endo weeds are resistant to Lupron roundup, so we have to be able to get in there and dig it out. I think it's a great analogy, so I thought I'd share it with you all.
So, I'm still taking suggestions for topics to write on. Let me know what you're interested in, if I'm answering your questions, if you think I should take a different tack, or whatever. I'm like the genie in the bottle - your wish is my command.
A Hui Ho (Hawaiian for "Until next time"),
Dr. Mos
Last week I took a vacation and went back to my old stomping grounds in Hawaii. (don't tell anybody or they'll think I'm slacking!) It was great to see my house there, and my old friends. The highlight of the trip was seeing all the whales! It was truly whale season, and we must have seen 100 whales, more than I've ever seen. We were fishing one day on a boat, and this huge humpback breached right in front of the boat, then rested at the surface just off the bow for several minutes before diving back into the deep. That was cool.
So what's new in the realm of Endo???
Well, there was a new paper published this month that identified genes in the peritoneum of women with endometriosis that are not active in women without endometriosis. These genes are thought to promote the development of endometriosis lesions via the same pathways that were used during embryogenesis (the formation of organ systems in the first 10 weeks after conception). The genes were found in highest concentration within endometriosis lesions, then slightly less in normal appearing peritoneal cells of women with endometriosis, and almost none in the peritoneal cells of women without endometriosis. These same genes are important in the formation of a normal uterus and normal endometrial tissue. Their conclusion was the same as Dr. Redwine has spent his life trying to prove: that endometriosis forms by a metaplastic (change) process where normal peritoneal cells (cells lining the abdominal cavity) change tissue types such that they become cells that resemble the endometrium (endometriosis). This means that it is NOT formed by retrograde menstruation (Sampson's theory) and does NOT continue to repopulate the pelvis and regrow after excision, therefore it is NOT futile to remove endometriosis instead of giving Lupron. Gee, sounds familiar, eh????
When I was in Hawaii last week I told my old neighbors about what I was doing here in Bend, and about what endometriosis surgery was like. I told him that endo was like a weed that had really deep roots that wrapped around all the important structures in the pelvis like the ureters, bowel, blood vessels, etc. He said, "why not use Roundup?" I just laughed, because the analogy of Roundup to Lupron was so obvious. The endo weeds are resistant to Lupron roundup, so we have to be able to get in there and dig it out. I think it's a great analogy, so I thought I'd share it with you all.
So, I'm still taking suggestions for topics to write on. Let me know what you're interested in, if I'm answering your questions, if you think I should take a different tack, or whatever. I'm like the genie in the bottle - your wish is my command.
A Hui Ho (Hawaiian for "Until next time"),
Dr. Mos
Tuesday, March 06, 2007
Endo of the bowel
Hi there once again.
Well, I had a request to do a little review of endometriosis of the bowel. Bowel endo is actually more common than one might think, with over 25% of our patients here in Bend having intestinal endometriosis. That number is most likely higher than the general population, as our patients typically have more severe disease than what the average gynecologist sees. Most doctors aren't familiar with the treatment for bowel endo, so these patients tend to float around from doctor to doctor looking for someone who can help them. Unfortunately, usually nobody has until they get to us.
The most common site of intestinal endometriosis is the sigmoid colon, the portion just above the rectum that lies on the left side just beneath the left hip bone. Following that, the rectum (behind the vagina and cervix) is next, then the last part of the small bowel, appendix, and cecum (beginning of the large intestine). Some patients have bowel disease in more than one location, and it is often associated with ovarian endometriomas (also called "chocolate cysts"). (as we said in Med school, "there goes another food group....")
If the lesion is of sufficient depth, endo of the sigmoid and rectum will cause pain with bowel movements (sigmoid - left lower quadrant pain, rectum - midline pain right where the lesion is). Most of the time these will hurt all month but can get worse during the menses, and rarely (if the lining or mucosa is involved) they can cause rectal bleeding during menses. Some women have diarrhea, constipation, or both in an alternating fashion, but these symptoms alone do not necessarily indicate bowel involvement as they can be seen in those with pelvic (non-bowel) endo as well. Endometriosis of the appendix, cecum, and ileum tend not to cause pain, but in rare cases if the lesion is large enough obstructive symptoms (nausea, vomiting, intermittent crampy pain) can occur.
Why can't some cases of bowel endo get diagnosed? Doctors of old had very few "tests" to do (x-rays, lab studies), so they had to rely on their ability to ask the right questions, listen to what the patient was telling them, and gather the data they needed by their 5 senses. Nowadays, since the advent of CT scans, MRIs, Nuclear medicine scans and the like, plus the atmosphere of "defensive medicine", most docs have lost at least some of the old-fashioned ability to make a diagnosis with their brain, eyes, ears, and their own 2 hands. Imaging studies are notoriously poor at finding endometriosis (with the exception of endometriomas), so in order to diagnose it, one must have a strong suspicion from the history and the physical exam. Rectal nodules can usually be felt on exam and are exquisitely tender, reproducing the defecatory pain, but nodules of the sigmoid colon or higher oftentimes cannot be palpated. Disease is then confirmed by surgery where the surgeon sees the lesions, then by biopsy where the pathologist verifies the lesion to actually be endo and not an imposter. If the surgeon doesn't routinely look at or think about the bowel as many GYNs do (or don't), even at surgery lesions on the bowel can be missed. For those docs who don't trust their own suspicions as much as they trust a CT scan, bowel endo will be missed because it usually doesn't show up on ultrasound, CT, MRI, or most other imaging study. Once in a while if the lesion is large and the radiologist knows what to look for these lesions can be seen, but not commonly. Colonoscopy and flexible sigmoidoscopy (a "mini-colonoscopy" where only the rectum and sigmoid are inspected) typically do not reveal endometriosis either, so unless one is both familiar with and suspicious of bowel endo, it likely will go undiagnosed.
What can be done for bowel endo? The good news is that most patients who undergo surgery to remove the lesion have excellent, long-lasting pain relief. The bad news is that these lesions (even when they are diagnosed) are typically not removed by gynecologists because most don't operate on the bowel. Some patients are referred to general surgeons for treatment, but most are placed on Lupron for suppression, even though it has never been proven to work for this type of lesion. When Dr. Redwine and I remove bowel lesions, most of the time the lesion can be removed by either a partial thickness or full thickness resection of a disc-shaped area, then the hole is sutured closed in layers. This is almost always done laparoscopically, and most patients go home within 24 hours of surgery. Sometimes if the lesion is very large or more circumferential, a segmental resection must be done. This involves removing a whole segment of bowel, sometimes up to a foot in length, then reattaching it using a stapling device. Because of the larger dissection involved and the longer operating time, these types of procedures will usually require a 3-4 day stay in the hospital to allow for normal bowel function to return, marked by the passage of gas (flatus is the $10 medical term). The irony is that these patients very often have immediate pain relief, and when they wake up from anesthesia they can tell that that deep, burning, agonizing pain they've been living with for years is gone. Their postop pain is usually nothing compared to what they've been dealing with preop, and it has been my experience that these ladies are the happiest patients of all. In fact, for both Dr. Redwine and myself, seeing these women pain free for the first time in years is our reward for the physical challenge of a long, demanding surgery. Long-term results of these surgeries are excellent with about 80% cured at 5 years, and fertility rates above 40% (not perfect, but much better than preop).
Our experience thus far has been to operate on almost 800 cases of bowel endometriosis, and to be honest, it is my favorite type of patient to take care of. The surgery is challenging, fun, and satisfying because these women do so well, both in terms of their immediate postop course and their long-term pain relief.
I hope this helps those of you who see a little of yourselves in the above descriptions, and I wish you the best in dealing with your disease. Remember, I'm doing free record reviews through the end of March, so if you think this might be you but you're not sure, don't hesitate to contact us. I'm really not typically into self-promotion, but in this case, I have to because not very many other docs in this country do this well, and I have to say, David's the best. And I'm getting there. Let me know what other topics you're interested in.
Take care, and have a great week.
Dr. Mos
Well, I had a request to do a little review of endometriosis of the bowel. Bowel endo is actually more common than one might think, with over 25% of our patients here in Bend having intestinal endometriosis. That number is most likely higher than the general population, as our patients typically have more severe disease than what the average gynecologist sees. Most doctors aren't familiar with the treatment for bowel endo, so these patients tend to float around from doctor to doctor looking for someone who can help them. Unfortunately, usually nobody has until they get to us.
The most common site of intestinal endometriosis is the sigmoid colon, the portion just above the rectum that lies on the left side just beneath the left hip bone. Following that, the rectum (behind the vagina and cervix) is next, then the last part of the small bowel, appendix, and cecum (beginning of the large intestine). Some patients have bowel disease in more than one location, and it is often associated with ovarian endometriomas (also called "chocolate cysts"). (as we said in Med school, "there goes another food group....")
If the lesion is of sufficient depth, endo of the sigmoid and rectum will cause pain with bowel movements (sigmoid - left lower quadrant pain, rectum - midline pain right where the lesion is). Most of the time these will hurt all month but can get worse during the menses, and rarely (if the lining or mucosa is involved) they can cause rectal bleeding during menses. Some women have diarrhea, constipation, or both in an alternating fashion, but these symptoms alone do not necessarily indicate bowel involvement as they can be seen in those with pelvic (non-bowel) endo as well. Endometriosis of the appendix, cecum, and ileum tend not to cause pain, but in rare cases if the lesion is large enough obstructive symptoms (nausea, vomiting, intermittent crampy pain) can occur.
Why can't some cases of bowel endo get diagnosed? Doctors of old had very few "tests" to do (x-rays, lab studies), so they had to rely on their ability to ask the right questions, listen to what the patient was telling them, and gather the data they needed by their 5 senses. Nowadays, since the advent of CT scans, MRIs, Nuclear medicine scans and the like, plus the atmosphere of "defensive medicine", most docs have lost at least some of the old-fashioned ability to make a diagnosis with their brain, eyes, ears, and their own 2 hands. Imaging studies are notoriously poor at finding endometriosis (with the exception of endometriomas), so in order to diagnose it, one must have a strong suspicion from the history and the physical exam. Rectal nodules can usually be felt on exam and are exquisitely tender, reproducing the defecatory pain, but nodules of the sigmoid colon or higher oftentimes cannot be palpated. Disease is then confirmed by surgery where the surgeon sees the lesions, then by biopsy where the pathologist verifies the lesion to actually be endo and not an imposter. If the surgeon doesn't routinely look at or think about the bowel as many GYNs do (or don't), even at surgery lesions on the bowel can be missed. For those docs who don't trust their own suspicions as much as they trust a CT scan, bowel endo will be missed because it usually doesn't show up on ultrasound, CT, MRI, or most other imaging study. Once in a while if the lesion is large and the radiologist knows what to look for these lesions can be seen, but not commonly. Colonoscopy and flexible sigmoidoscopy (a "mini-colonoscopy" where only the rectum and sigmoid are inspected) typically do not reveal endometriosis either, so unless one is both familiar with and suspicious of bowel endo, it likely will go undiagnosed.
What can be done for bowel endo? The good news is that most patients who undergo surgery to remove the lesion have excellent, long-lasting pain relief. The bad news is that these lesions (even when they are diagnosed) are typically not removed by gynecologists because most don't operate on the bowel. Some patients are referred to general surgeons for treatment, but most are placed on Lupron for suppression, even though it has never been proven to work for this type of lesion. When Dr. Redwine and I remove bowel lesions, most of the time the lesion can be removed by either a partial thickness or full thickness resection of a disc-shaped area, then the hole is sutured closed in layers. This is almost always done laparoscopically, and most patients go home within 24 hours of surgery. Sometimes if the lesion is very large or more circumferential, a segmental resection must be done. This involves removing a whole segment of bowel, sometimes up to a foot in length, then reattaching it using a stapling device. Because of the larger dissection involved and the longer operating time, these types of procedures will usually require a 3-4 day stay in the hospital to allow for normal bowel function to return, marked by the passage of gas (flatus is the $10 medical term). The irony is that these patients very often have immediate pain relief, and when they wake up from anesthesia they can tell that that deep, burning, agonizing pain they've been living with for years is gone. Their postop pain is usually nothing compared to what they've been dealing with preop, and it has been my experience that these ladies are the happiest patients of all. In fact, for both Dr. Redwine and myself, seeing these women pain free for the first time in years is our reward for the physical challenge of a long, demanding surgery. Long-term results of these surgeries are excellent with about 80% cured at 5 years, and fertility rates above 40% (not perfect, but much better than preop).
Our experience thus far has been to operate on almost 800 cases of bowel endometriosis, and to be honest, it is my favorite type of patient to take care of. The surgery is challenging, fun, and satisfying because these women do so well, both in terms of their immediate postop course and their long-term pain relief.
I hope this helps those of you who see a little of yourselves in the above descriptions, and I wish you the best in dealing with your disease. Remember, I'm doing free record reviews through the end of March, so if you think this might be you but you're not sure, don't hesitate to contact us. I'm really not typically into self-promotion, but in this case, I have to because not very many other docs in this country do this well, and I have to say, David's the best. And I'm getting there. Let me know what other topics you're interested in.
Take care, and have a great week.
Dr. Mos
Thursday, March 01, 2007
Hi there and Happy March!
I saw Bob Woodruff on TV last night, (he's the anchorman who nearly had his head blown off in Iraq last year), and he was in amazing shape. I couldn't believe how well he had recovered, especially when I saw a picture of him without part of his skull. I just wanted to take a minute and give out a big Oo Rah to all of the phenomenal military surgeons, nurses, corpsmen, and the entire group that is keeping our fighting soldiers and sailors alive and well over there. Most people may not know this, but most of the major advances in trauma care and surgical intensive care medicine have come from the battlefields. So, I'm proud to come from a military background (my dad was a cook in the Navy in WWII), and proud to have served in the Navy, and to have trained at Bethesda Naval Hospital. Stateside and peacetime military medicine may have some flaws, but if I was in Bob Woodruff's shoes with a major head injury, there's nobody in the world I'd rather see than the Navy or Army docs and crews.
Now to endometriosis.....
I'm having fun doing all these bowel cases. It's really true that endometriosis follows repetetive patterns, hanging out in nearly the same spots in most people. Once you get the hang of looking for important structures like ureters (the tubes that bring the urine from the kidneys down to the bladder), and you learn how to separate them from the fibrous web of scar tissue woven by the endometriosis-driven silk worms (just kidding - no worms, just scar tissue), and you figure out how to do all this without injuring the large vessels carrying blood to and from your legs that live just beneath all the endometriosis/fibrosis/scarred in junk, then the only thing left to do is to take the endo off the bowel wall, sew it up, and be done. That's a little like saying, "just give the space shuttle a little tune-up". Easier said than done. But, with practice and a great teacher (Dr. Redwine), it truly is getting easier.
The hard part is convincing the scientific establishment that endometriosis can be cured by removing it from the body. They all want to cover it up by giving Lupron, and now aromatase inhibitors. All that does is suppresses the activity of the endometriosis cells for a while, and lessens their ability to produce all those little biologically active molecules that cause pain, then when your menopause (induced by the Lupron) gets better, your pain gets worse again. I really think they don't want to admit that if endometriosis can be cured by surgical excision, then we need better surgeons than we have in general gynecology, and that 4 years of residency for learning all of obstetrics, office gynecology, surgical gynecology, and primary care (thrust on our specialty about 10 years ago for dubvious reasons) is just Not Long Enough to train excellent surgeons. I can truly understand the frustration of many of our patients who have been told "there's nothing we can do for you" by doctor after doctor.
Well, time to get off my soap box.
If you have issues related to endo, pelvic pain, incontinence, or women's health in general that you would like me to address, please let us know.
Take care, and have a great week.
Dr. Mos
I saw Bob Woodruff on TV last night, (he's the anchorman who nearly had his head blown off in Iraq last year), and he was in amazing shape. I couldn't believe how well he had recovered, especially when I saw a picture of him without part of his skull. I just wanted to take a minute and give out a big Oo Rah to all of the phenomenal military surgeons, nurses, corpsmen, and the entire group that is keeping our fighting soldiers and sailors alive and well over there. Most people may not know this, but most of the major advances in trauma care and surgical intensive care medicine have come from the battlefields. So, I'm proud to come from a military background (my dad was a cook in the Navy in WWII), and proud to have served in the Navy, and to have trained at Bethesda Naval Hospital. Stateside and peacetime military medicine may have some flaws, but if I was in Bob Woodruff's shoes with a major head injury, there's nobody in the world I'd rather see than the Navy or Army docs and crews.
Now to endometriosis.....
I'm having fun doing all these bowel cases. It's really true that endometriosis follows repetetive patterns, hanging out in nearly the same spots in most people. Once you get the hang of looking for important structures like ureters (the tubes that bring the urine from the kidneys down to the bladder), and you learn how to separate them from the fibrous web of scar tissue woven by the endometriosis-driven silk worms (just kidding - no worms, just scar tissue), and you figure out how to do all this without injuring the large vessels carrying blood to and from your legs that live just beneath all the endometriosis/fibrosis/scarred in junk, then the only thing left to do is to take the endo off the bowel wall, sew it up, and be done. That's a little like saying, "just give the space shuttle a little tune-up". Easier said than done. But, with practice and a great teacher (Dr. Redwine), it truly is getting easier.
The hard part is convincing the scientific establishment that endometriosis can be cured by removing it from the body. They all want to cover it up by giving Lupron, and now aromatase inhibitors. All that does is suppresses the activity of the endometriosis cells for a while, and lessens their ability to produce all those little biologically active molecules that cause pain, then when your menopause (induced by the Lupron) gets better, your pain gets worse again. I really think they don't want to admit that if endometriosis can be cured by surgical excision, then we need better surgeons than we have in general gynecology, and that 4 years of residency for learning all of obstetrics, office gynecology, surgical gynecology, and primary care (thrust on our specialty about 10 years ago for dubvious reasons) is just Not Long Enough to train excellent surgeons. I can truly understand the frustration of many of our patients who have been told "there's nothing we can do for you" by doctor after doctor.
Well, time to get off my soap box.
If you have issues related to endo, pelvic pain, incontinence, or women's health in general that you would like me to address, please let us know.
Take care, and have a great week.
Dr. Mos
Thursday, February 22, 2007
ALOHA!
It's a beautiful snowy day here in Bend. This picture was taken this morning, and although I only had a couple inches of snow at my house, it's still so peaceful and serene to sit and watch the snow falls. It's almost like time stands still and nothing else matters much (except, of course, freeing the world from the tyranny of Endometriosis). I'm getting excited because my brother is coming out in a couple weeks for a ski vacation, and what kind of hostess would I be if I didn't keep him company on the slopes?
The other exciting thing these days is the research that's coming out about the origins of endo. As many of you know, there's a great debate over the mechanisms by which endo forms. The most common explanation is that endometrial cells flow backwards into the abdomen through the fallopian tubes each month during the menses and implant onto surfaces in the pelvis (known as Reflux menstruation, or Sampson's Theory). There are some big problems with this theory, not the least of which it means that endo can never be cured. It also can't explain why endo occurs outside of the peritoneal cavity (such as in the lung, brain, deep in the rectovaginal septum, and even in the prostate gland in men!), why it has been found in girls who haven't yet had a period, or why it follow reliable patterns of distribution regarding its locations in the pelvis. The famous and beautiful Dr. David Redwine has spent his life trying to disprove Sampson's theory in favor of the "celomic metaplasia" theory of formation of endo. Celome is a fancy ten dollar word for the inside of the abdomen, and the theory of metaplasia promotes the idea that certain sites in the abdomen are predisposed to change into endometriosis upon stimulation by certain substances such as hormones (estrogen) or other biologically active molecules. Whether these areas are susceptible because during embryogenesis (formation of organ systems during early gestation before birth) cells of the reproductive tract fall off along the path of migration (everything migrates somewhere in an embryo), or whether they are just naturally susceptible to hormonal stimulation is still unknown. This difference, however, doesn't have as significant an impact on clinical treatment issues as the broader question of metaplasia vs reflux menstruation, because if endometriosis forms every month by falling out of the tubes and into the pelvis, then no surgical treatment short of hysterectomy or tubal ligation will cure endo. On the flip side, if metaplasia is the way endo forms, then once the susceptible tissue has changed into endometriosis (which usually happens by the early 20s), removing it should produce a cure. In fact, when we reoperate on patients who have previously had excision of endo, there is almost never endo on the specific spots in the pelvis that had been previously excised.
So what's the exciting part of this? There's new research showing the earliest transformation of normal ovarian tissue into endometriosis. They actually have pictures showing areas of transition between normal and endometriosis, which substantiates the metaplasia theory. OK, so you're not as excited as I am, but for us humble folk trying to prove to the world that endo can be cured, this is about as exciting as a beautiful snowy day when you're expecting a ski day soon.
Remember, tell your friends ENDO CAN BE CURED! And if they have doctors that tell them, "sorry, there's nothing we can do, just live with your pain", tell them to run the other way and then contact us. It's now not just Dr. Redwine's mission in life, but mine too, to tell the world about what we do, and let them know there's hope for a pain-free life.
Take care, and have a great week.
Dr. Mos
Tuesday, February 13, 2007
Cocky or Confident?
David said to me last week after reading my blog, "sounds like you're getting a little cocky". I thought about that for a while, and re-read what I had written. I wasn't trying to be cocky or obnoxious or haughty, but to emphasize the point that not a whole lot of people do what we do, and that it is difficult surgery. When I was in the Navy, my last year and a half was spent at Pensacola where the Blue Angels are based. I took care of quite a few of their wives, and while some of the guys were very nice, ordinary guys, a couple were real arrogant, acting like they were some sort of hot shots, quite obnoxious in the way they made everybody feel like they were less important than them, the hot dog fighter pilots. At first I couldn't stand them, but then I realized that being a fighter pilot is a lot like being a surgeon. Both pilots and surgeons have to have a very strong confidence in their own abilities because what we do has life or death consequences. As a surgeon, I have a sacred trust and bond with each patient I operate on. Both of us has to believe and I have to know absolutely that no matter what happens in the operating room I will still be in control. I have to know that regardless of how abnormal the anatomy is, how bad the bleeding is, or what complications I get into, that I will not give up, I will not panic, I will not stop thinking and acting in the best interests of the patient. Because if I do, bad things will happen. This confidence starts small and builds just like it does with anything in life. The more difficult cases I do, the more I build the confidence that, yes, I can do anything I need to; I can remove endometriosis wherever it is. My favorite book when I was a baby was "The Little
Engine That Could". The little train would chug up the mountain and chant "I think I can, I think I can...." until he finally got to the top. Most of the time confidence comes slowly but steadily. Sometimes you back up a few steps when several complications lump together (as they usually do) and you think "what the heck am I doing? Should I be doing this?". Once in a while you figure out something you're doing that's different, but most of the time there's no reason for what happened, and you move on, a little more slowly and carefully for a while until things get back to even keel. Rarely, confidence comes in a big leap, usually after prevailing over a seemingly unconquerable challenge. I remember most of my "giant steps" in confidence, whether in surgery, sports, or relationships. This past two weeks we've done 3 very difficult bowel cases, and I personally did my first laparoscopic bowel resection. I've gotten to be able to see the things that David does, not only the endo lesions, but the anatomy: the small blood vessels hiding beneath the surface, the contours of different structures and their significance. All of a sudden it's all coming together, and what seemed difficult a few months ago is now a whole lot easier (there's still a few more levels to go before it will all be easy, and some surgeries will never be easy, but they will all become possible). I remember the day I learned to trust the edges of my skis. I was at Stevens Pass, WA, on top of this short but really steep outcropping (I think I was 13 or so). I stood there scared to come down because of the steepness, but then I thought about what I knew about how skis worked, and what I had learned in my lessons about weight forward and all that. And all at once I thought "I can do this" and took off down the hill. After about 3 or 4 turns I was down off the steep, and with that one experience I knew that I could ski down anything (maybe not really fast or pretty, but I could make it down). That's how I feel now about my surgical abilities - I may not be as good or as fast as I uptimately will be, but I'm to the point that I can get through anything I face, and I know that (mostly) without a doubt.
Now, having confidence doesn't give you a license to act like you're better than anybody else - actually, it's just the opposite. My confidence in my abilities
hopefully will allow me to act with humility, valuing the relationship I can develop with my patients that allows us to achieve our common goal. What makes me continue this quest to be the best endometriosis surgeon possible isn't the notariety, money or respect. It is the experiences like I had last week, where a scared, traumatized young woman came to us after 3 failed surgeries for endo. She had a difficult lesion that others said couldn't be resected. We took care of her, excising her disease, and when she said good-bye she nearly cried from relief that her 10 year search for resolution of her pain was over, and from joy that she was finally pain free. There is no way to describe the satisfaction, joy, elation, and yes, a little pride, involved in an experience like that. It's like knowing that I'm doing exactly what I was put on earth to do. That's a pretty good feeling.
Take care, and have a great week.
David said to me last week after reading my blog, "sounds like you're getting a little cocky". I thought about that for a while, and re-read what I had written. I wasn't trying to be cocky or obnoxious or haughty, but to emphasize the point that not a whole lot of people do what we do, and that it is difficult surgery. When I was in the Navy, my last year and a half was spent at Pensacola where the Blue Angels are based. I took care of quite a few of their wives, and while some of the guys were very nice, ordinary guys, a couple were real arrogant, acting like they were some sort of hot shots, quite obnoxious in the way they made everybody feel like they were less important than them, the hot dog fighter pilots. At first I couldn't stand them, but then I realized that being a fighter pilot is a lot like being a surgeon. Both pilots and surgeons have to have a very strong confidence in their own abilities because what we do has life or death consequences. As a surgeon, I have a sacred trust and bond with each patient I operate on. Both of us has to believe and I have to know absolutely that no matter what happens in the operating room I will still be in control. I have to know that regardless of how abnormal the anatomy is, how bad the bleeding is, or what complications I get into, that I will not give up, I will not panic, I will not stop thinking and acting in the best interests of the patient. Because if I do, bad things will happen. This confidence starts small and builds just like it does with anything in life. The more difficult cases I do, the more I build the confidence that, yes, I can do anything I need to; I can remove endometriosis wherever it is. My favorite book when I was a baby was "The Little
Engine That Could". The little train would chug up the mountain and chant "I think I can, I think I can...." until he finally got to the top. Most of the time confidence comes slowly but steadily. Sometimes you back up a few steps when several complications lump together (as they usually do) and you think "what the heck am I doing? Should I be doing this?". Once in a while you figure out something you're doing that's different, but most of the time there's no reason for what happened, and you move on, a little more slowly and carefully for a while until things get back to even keel. Rarely, confidence comes in a big leap, usually after prevailing over a seemingly unconquerable challenge. I remember most of my "giant steps" in confidence, whether in surgery, sports, or relationships. This past two weeks we've done 3 very difficult bowel cases, and I personally did my first laparoscopic bowel resection. I've gotten to be able to see the things that David does, not only the endo lesions, but the anatomy: the small blood vessels hiding beneath the surface, the contours of different structures and their significance. All of a sudden it's all coming together, and what seemed difficult a few months ago is now a whole lot easier (there's still a few more levels to go before it will all be easy, and some surgeries will never be easy, but they will all become possible). I remember the day I learned to trust the edges of my skis. I was at Stevens Pass, WA, on top of this short but really steep outcropping (I think I was 13 or so). I stood there scared to come down because of the steepness, but then I thought about what I knew about how skis worked, and what I had learned in my lessons about weight forward and all that. And all at once I thought "I can do this" and took off down the hill. After about 3 or 4 turns I was down off the steep, and with that one experience I knew that I could ski down anything (maybe not really fast or pretty, but I could make it down). That's how I feel now about my surgical abilities - I may not be as good or as fast as I uptimately will be, but I'm to the point that I can get through anything I face, and I know that (mostly) without a doubt.
Now, having confidence doesn't give you a license to act like you're better than anybody else - actually, it's just the opposite. My confidence in my abilities
hopefully will allow me to act with humility, valuing the relationship I can develop with my patients that allows us to achieve our common goal. What makes me continue this quest to be the best endometriosis surgeon possible isn't the notariety, money or respect. It is the experiences like I had last week, where a scared, traumatized young woman came to us after 3 failed surgeries for endo. She had a difficult lesion that others said couldn't be resected. We took care of her, excising her disease, and when she said good-bye she nearly cried from relief that her 10 year search for resolution of her pain was over, and from joy that she was finally pain free. There is no way to describe the satisfaction, joy, elation, and yes, a little pride, involved in an experience like that. It's like knowing that I'm doing exactly what I was put on earth to do. That's a pretty good feeling.
Take care, and have a great week.
Friday, February 02, 2007
Hello again.
I had the exciting privilege of meeting the one and only Nancy Peterson last week. Nancy is the nurse who started the whole "endometriosis treatment program" here in Bend many years ago. She had endo herself, and because of that, she had a passion for the patients, a special understanding of what they're going through, and I think she stimulated Dr Redwine to continue his quest for conquering the evil disease. Nancy still has a passion for curing endometriosis, and answers quite a few emails every day from women who don't know where to turn. I applaud her efforts to educate and encourage those who are in pain and looking for a better way than is often offered them. Speaking of a better way, we operated on a lady last week who had been to "experts" in several locations around the country in search of someone to rid her of her rectal nodule. One told her it "couldn't be done" because it was in the wrong location, one tried but gave up because "it was too low", and others put her on Lupron (which didn't do anything). We went to war against the forces of evil invading her body, and, at the end of the day (literally), we prevailed, with the villainous nodule in the pathologist's bucket. (do I sound too much like George Bush? I apologize...) It was the largest nodule I've removed, and was quite an exciting surgery. I finally have experienced firsthand the difficulty of this type of surgery, because David makes it look so darn easy, and it's not. Endometriosis is not a disease for the faint of heart, neither for the patient nor physician, but it is incredibly rewarding when you can tell an anxious, fearful patient (fearful because so many others have failed at excising her disease) that she will no longer have the one pain that has ruled her life for the last 10 - 15 years. I think I'm making great strides toward where I need to be in order to continue this work after Dr. Redwine retires. It's exciting and exhausting at the same time, but the joy from taking care of people who need you easily overwhelms the difficulty. March is Endometriosis month, and I encourage you to tell your friends with painful periods, painful sex, or painful bowel movements to get treated, and not give up. I will be doing free record reviews, so if anyone would like me to review their files, contact Kate or Deena in our office.
Take care, and have a great week.
Dr. Mos
I had the exciting privilege of meeting the one and only Nancy Peterson last week. Nancy is the nurse who started the whole "endometriosis treatment program" here in Bend many years ago. She had endo herself, and because of that, she had a passion for the patients, a special understanding of what they're going through, and I think she stimulated Dr Redwine to continue his quest for conquering the evil disease. Nancy still has a passion for curing endometriosis, and answers quite a few emails every day from women who don't know where to turn. I applaud her efforts to educate and encourage those who are in pain and looking for a better way than is often offered them. Speaking of a better way, we operated on a lady last week who had been to "experts" in several locations around the country in search of someone to rid her of her rectal nodule. One told her it "couldn't be done" because it was in the wrong location, one tried but gave up because "it was too low", and others put her on Lupron (which didn't do anything). We went to war against the forces of evil invading her body, and, at the end of the day (literally), we prevailed, with the villainous nodule in the pathologist's bucket. (do I sound too much like George Bush? I apologize...) It was the largest nodule I've removed, and was quite an exciting surgery. I finally have experienced firsthand the difficulty of this type of surgery, because David makes it look so darn easy, and it's not. Endometriosis is not a disease for the faint of heart, neither for the patient nor physician, but it is incredibly rewarding when you can tell an anxious, fearful patient (fearful because so many others have failed at excising her disease) that she will no longer have the one pain that has ruled her life for the last 10 - 15 years. I think I'm making great strides toward where I need to be in order to continue this work after Dr. Redwine retires. It's exciting and exhausting at the same time, but the joy from taking care of people who need you easily overwhelms the difficulty. March is Endometriosis month, and I encourage you to tell your friends with painful periods, painful sex, or painful bowel movements to get treated, and not give up. I will be doing free record reviews, so if anyone would like me to review their files, contact Kate or Deena in our office.
Take care, and have a great week.
Dr. Mos
Monday, January 08, 2007
Happy New Year!
It's been a while since I last wrote, but I haven't forgotten about you all.
In case you're wondering, I had a great Christmas break, the highlights of which were my brother-in-law and his family coming to visit, and taking my dog cross country skiing. Here's a picture of Birdie.
OK, I should be writing about my quest to become the worlds second best endometriosis surgeon (which I will), but my dog's so cute, I couldn't resist.
So, what of the surgery epic? Things are going well. I've been doing more and more cases, and I'm getting faster, which is good because it means less anesthesia time for the patients. I'm still challenged somewhat by the really difficult cases, where everything is stuck to everything, the anatomy is totally skewed, and it's just plain hard. But, some of the tough cases we do are as difficult as any surgery can be, so it stands to reason that those surgeries won't be easy for anyone. My goal is to do as many surgeries as I can with Dr Redwine before he retires so he can coach me through the difficult ones.
One of the things I would like to do is to visit some of the local endometriosis association chapters and give some community talks, so women with endometriosis know what options are available to them. Many women have multiple surgeries by OB/GYNs who don't know how to recognize the subtler forms of endometriosis, and don't know how or have the surgical skills to treat it appropriately, so they have surgeries which don't result in any significant pain relief. I feel compelled to spread the word that endometriosis can be cured, and that most pelvic pain can be improved quite a bit, but unfortunately the number of physicians who can and will help these women no matter what it takes are few and far between. It's so sad to see patients coming to us after 3,4, 6 previous operations that haven't worked. At least they're finally at the place where doctors will both care about them and care for them appropriately. So, if any of you know contacts with community support groups for women with endometriosis or pelvic pain, please forward their contact info to me. I would be greatly indebted to you, and the women who are suffering without hope will be as well. The most important thing people need when they're going through difficult times is hope, and it's just scary how many patients come to us after being told "there's nothing anybody can do for you". No hope, no possiblities, no compassion.
Well, I'm off to change the world, or at least help a few women along the way. Pay it forward, that's my goal. Peace to you in this new year.
Wednesday, November 29, 2006
Good Morning everybody,
Today when I woke up it was 9 degrees here in beautiful Central Oregon, and the sunrise on the mountains was spectacular! My mom calls it "strawberry ice cream" on the mts. We are truly blessed here in the Northwest to have such a beautiful place to live and play.
I've been doing quite a few endometriosis surgeries lately and I'm getting faster and more confident. Dr. Redwine is an excellent teacher, and is patient with me as I take a while to dissect the dense scar tissue underneath the endometriosis lesions which lies directly over all the important structures of the pelvic sidewall (the ureter, big blood vessels going to the legs, nerves, the federal reserve bank). Surgery for endometriosis can be tedious, as the surgeon has to be careful to remove all the scarring (fibrosis) from the endometriosis, but leave the ureters, intestines, and blood vessels intact. Most gynecologic surgeons never operate in these areas, and don't know the anatomy of these spaces very well. We've been into the retroperitoneum on every case, and into the spaces behind the vagina, lateral to the rectum, (basically everywhere most surgeons aren't) routinely since I've been here. I finally feel like the rust is coming off after not operating for a while during my move, and I'm back into the swing of things. The cases I used to do well are now incredibly simple, and the cases I used to struggle with I can do now with a little style. If surgery can be compared to baseball, when I was in Hawaii I was a good player in the minor leagues, as are most doctors. Very few play in the major leagues, and David is like Roger Clemons, the star pitcher of the World Series champs. Now I'm getting used to stiffer competition, and am playing (operating) better because of it.
It is always gratifying to see patients happier, in less pain, and more functional after surgery, and I will never tire of being able to help them with their endometriosis pain or their urinary leakage. Life is too short to be miserable, and as doctors we have an ethical mandate not to throw up our hands when difficult problems come at us. We went through years of training so we would be strong, tough, and smart, and to banish the phrase "I'm not comfortable with that...". Here in Bend we see more patients than I care to think about being treated with useless medications and told "there's nothing anyone can do about your pain". We will not quit on anyone, either in the OR or in the office, we will go the last mile to figure out what needs to be done to improve someone's quality of life, to cure their endometriosis, to ease their pain. OK, I sound like I'm on a soap box, but it gets frustrating seeing patients who've been blown off by the people they trusted to help them. I'm incredibly glad I'm here, learning from the best endometriosis surgeon in the world, a guy that doesn't know the meaning of the word "quit".
Have a great week.
Today when I woke up it was 9 degrees here in beautiful Central Oregon, and the sunrise on the mountains was spectacular! My mom calls it "strawberry ice cream" on the mts. We are truly blessed here in the Northwest to have such a beautiful place to live and play.
I've been doing quite a few endometriosis surgeries lately and I'm getting faster and more confident. Dr. Redwine is an excellent teacher, and is patient with me as I take a while to dissect the dense scar tissue underneath the endometriosis lesions which lies directly over all the important structures of the pelvic sidewall (the ureter, big blood vessels going to the legs, nerves, the federal reserve bank). Surgery for endometriosis can be tedious, as the surgeon has to be careful to remove all the scarring (fibrosis) from the endometriosis, but leave the ureters, intestines, and blood vessels intact. Most gynecologic surgeons never operate in these areas, and don't know the anatomy of these spaces very well. We've been into the retroperitoneum on every case, and into the spaces behind the vagina, lateral to the rectum, (basically everywhere most surgeons aren't) routinely since I've been here. I finally feel like the rust is coming off after not operating for a while during my move, and I'm back into the swing of things. The cases I used to do well are now incredibly simple, and the cases I used to struggle with I can do now with a little style. If surgery can be compared to baseball, when I was in Hawaii I was a good player in the minor leagues, as are most doctors. Very few play in the major leagues, and David is like Roger Clemons, the star pitcher of the World Series champs. Now I'm getting used to stiffer competition, and am playing (operating) better because of it.
It is always gratifying to see patients happier, in less pain, and more functional after surgery, and I will never tire of being able to help them with their endometriosis pain or their urinary leakage. Life is too short to be miserable, and as doctors we have an ethical mandate not to throw up our hands when difficult problems come at us. We went through years of training so we would be strong, tough, and smart, and to banish the phrase "I'm not comfortable with that...". Here in Bend we see more patients than I care to think about being treated with useless medications and told "there's nothing anyone can do about your pain". We will not quit on anyone, either in the OR or in the office, we will go the last mile to figure out what needs to be done to improve someone's quality of life, to cure their endometriosis, to ease their pain. OK, I sound like I'm on a soap box, but it gets frustrating seeing patients who've been blown off by the people they trusted to help them. I'm incredibly glad I'm here, learning from the best endometriosis surgeon in the world, a guy that doesn't know the meaning of the word "quit".
Have a great week.
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