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
Tuesday, April 24, 2007
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.
Subscribe to:
Posts (Atom)
