Hi There...
You probably thought I fell off the face of the earth because I haven't written in so long.
First, I went on vacation to the north end of Vancouver Island. We went fishing for a few days and caught some great fish. The one above is a 24 lb King salmon. Mmmmm.
We had a great time away, then came home and 4 days later my dog Boogie died. She was 17 and had a great life, and a quick death, so I can't complain. But it's still hard. She was a very smart dog, and almost seemed like she knew what you were thinking sometimes. Emotional rollercoaster is a cliche that in my case was a very real thing - from a super high to a pit of a low in less than a week. The amazing thing is that as humans we can bounce back from such things, or at least most of us can. Some people get stuck in the "victim" role, and whether they like the attention they get when they're ill, or whether they're addicted to pain meds, or whether they just don't know any other way to live, there are some women (and probably plenty of men, I just don't see them as patients) who continue to feel subject to the whims of their disease.
I had the great pleasure to spend a night with the Seattle Endo Group at one of their meetings last month. About 15 women, all with different stories and different variations of the same disease, came together to support each other, and to learn about the disease that was affecting them and making their lives less productive, less pleasurable, and all in all less tolerable than they should be. I was proud to be able to be a part of this, a yearning to understand and conquer endo, not continue to be victimized by it. I was also proud of them, because they were doing something, both for themselves (educating ) and for others (supporting, caring, loving). Medicine is not a one-way dictum anymore, where the patient is a supplicant at the feet of the great physician, humbly requesting healing, and the physician gives the patient his treatment plan. No questions, no options, just do this and come back in a month. No, medicine today requires a commitment by both parties. A commitment by the physician to educate the patient about their disease, give them options, and help them understand why it's important to treat the disease in one way or another. The commitment from the patient is different but just as necessary. Patients must be an active participant in their healing - they must ask questions, keep track of how they feel and what things make them better or worse, they should be willing to try certain things that have been recommended to them, and most of all they need to be motivated to get better. Some of you will read this and think "what a jerk, to think that some patients don't want to get any better." I'm not suggesting that a majority of patients fall into this category (most of our patients don't, that's why it's so gratifying to help them get better), but there are a few that do. Patients who are motivated and engaged will come in to see me with a list of questions, they'll consider things I tell them so that we can come to an agreement about the plan of attack to get them better. That's what life is all about - working together to help people understand their disease and feel that they have some control over it, rather than feeling helpless and hopeless.
Thanks for reading my ramblings - sometimes I get philosophical and I apologize if it gets to be too much. But, the emotional side of healing is an important thing to tap into, both for me, and for my patients. I want them to know that I care about them, not just to be able to whack disease out of their body (of course I like that - I'm a surgeon), but what really makes me happy is seeing them being able to return to a normal life, going back to college, starting a family, going to cooking school, pursuing their dreams. That's what keeps us going when the cases are long, when our backs get tired, and our feet are sore. That's what real medicine is all about.
Just to remind you, Dr. Redwine and I are starting a series of "Webinars" this fall. Starting on 10/25, we'll give live presentations over the internet, with time for questions and answers afterwards. You will be able to send in your questions over instant messaging type software, and we'll answer as many as we can. We'll do 3 Webinars this fall, then start up again in January. There will be a place to leave your suggestions for what we can do better, so please feel free to leave constructive comments that will help us tailor future talks to what people are interested in. Our goal is education, and we want women with endo to be knowledgeable about their disease and treatment options so they don't have to suffer through useless surgeries and miserable hormone treatments.
We're trying to help you, so we hope you'll join us. There's a link to sign up on the front page of our website.
Take care, and have a great week.
Dr. Mos
20 comments:
Nice to have you back Dr. Mos. I'm so sorry about your dog....thanks for the update!
Jessie
P.S. I'm finally coming to Bend in January!
nice picture; i'm happy to see the bill of your cap has been contoured and not straight across, that drives me crazy!
i'm sorry about your dog, really. it's been 18 months since putting my miss katie down. i took my shepherd from a rescue at 8 yrs old, had her only 3 1/2 years before her back legs went out. miss katie taught me kindness and patience can heal a wounded soul. i put her down one week before my surgery in maine and i was devastated. my favorite cap is my "save a dog" cap, always wear it, and have her name written on the underside of the bill.
i like the way you write. i think that some people are afraid of "getting better", because they are then responsible to change their lives should they feel better. i continue to be grateful and thankful for my newfound health. and i realize i need to forgive others for being annoyed with me while not feeling well, and to forgive myself as well. my relationship has ended recently, with one reason because of the way i felt (and behaved) when not feeling well. i cannot change the past, BUT i did find my way to feeling better. i will mourn the loss of this relationship and hopefully learn from it.
i'm looking forward to your webinars, i have signed up for all of them so far.
Sorry to hear about your dog. :(
Isnt North Vancouver Island great?? I love Pacific Rim National Park on the west side of the island. Whenever I am in yoga class and we are relaxing at the end and doing visualization my mind goes back there.
I belong to several support groups for endo and found that most are intolerable because everyone feels like a victims. The other thing that irks me about them is that everyone feels like they are an expert on how to treat one anothers endo. I learned long ago that only I can make things better and learn how to deal with the pain of infertility of endo and the physical pain. I took charge of my life and didnt allow endo to rob me of having a family. Yes, I did use extraordinary means to have kids but I did it.
Keep on blogging!!
Madam Yak Attak,
Even I know that only total nerds wear hats with a flat bill.....
Dear 3 good eggs,
If you'd like me to come speak at your endo groups, let me know. I'm trying to spread the word that there are successful treatments available that really do work.
Good for you for taking your life back!
Dr. Mos
Dr. Mos,
Thank you for the offer. I live in the midwest and dont really see you coming just to talk to us whiney girls! :) Actually I dont really do much with the endo community anymore. I am always on the lookout for new treatments that dont involve Lupron or Depo Provera so I keep in contact but dont get involved. I have lived with this so long that I know what works for me and I do it. I have a wonderful doc who listens when I find some new research and want to try it she supports me.
Come by my blog and see my three good eggs. Well they werent my good eggs but they are now. That is all thanks to a wonderful woman who I will never know who made me the Mom I always wanted to be!
Christine
Dear Dr. Mos -
Just a note for you, it is not necessary to post. First, I want to thank you for the webinars you guys are doing. Even tho there were audio problems I did listen to the Q&A and it was great getting to see you guys. Endo medicine being what it is, I will admit I am a groupie. My hope is that not only will patients be able to use the information you both have offered but doctors too. I made a point of letting my doctor know of the webinar, as he is a professor as well. Unfortunately I have had the bad luck of being examined by doctors that find it easier to label me as anxiety ridden then to actually treat me, so not much of what I say is taken seriously anymore. Once I lost my uterus I also lost my sanity in one fell swoop and pretty much any medical complaint that I have is ignored. This has been as a result of good doctors not knowing what they are doing for the most part.
Anyway, the point of this is, I probably will not be able to afford your services but just getting to watch you all in the webinar was a HUGE delight and validation. Just by listening to you all I start to feel like a real human again, and know that the pain and other issues I experience are real as am I.
It is also a pleasure to see two professionals who are truly committed to their work as you both are. Regardless of the endometriosis theme, it is wonderful to see people who love to be masters of their work. I am an artist and can appreciate when one seeks mastery over their craft as you both do. You also both seem like wonderful people to be honest and the world shouldn't take that for granted either.
So I just wanted to say thanks again for the webinar, I for one really appreciated it and am looking forward to the next.
Best wishes to you both,
Excision Specialists for President! :)
Nicola
"The charm of fishing is that it is the pursuit of that which is elusive but attainable, a perpetual series of occasions for hope" - anonymous
How 'bout them Red Sox... Jacoby Ellsbury - yea, baby, rookie of the year? Bahstun loves Ellsbury. Another parade! Then there's the Patriots, and the Celtics have Ray Allen and Kevin Garnett...
And because I love rowing, I think all of this is totally oarsome!
First, I know Nicola said I didn't have to post her comment, but because I loved the quote about fishing, I had to post it. Maybe that's what we love so much about fishing, the never-ending chances for hope.
My next comment is that Ellsbury is from a little tiny town 50 mi. north of Bend called Madras. He played for OSU when they won their natl championships, and now was a key player for the Sox in their victories over Denver. Plus, the best thing is that he's eligible for rookie of the year next year, because he didn't have too many at bats this yr.
Thanks for all your support, and I promise we'll fix the audio problems. The recording of the Webinar (sound and all) will be available on our website within the next couple of days.
Dr. Mos
I have been reading through several of your posts, and I am grateful for the education you have provided. Long story short, I have endo, first diagnosed in 2000, and have had fibroids and multiple miscarriages. Consistent with each of my six pregnancies is excrutiating, knife-like pain during the first trimester-if and when the pain ended, it meant that I miscarried-this pattern occurred even with my two last (and only term) pregnancies.
One endo biopsy back in 2002 showed "dyssynchrony" of the lining, and the RE told me I would have less than 5% chance of conceiving and carrying to full term (I got pregnant for the fourth time within a month of his pronouncement, and miscarried about a month later, making his prediction partly true). Your explanation of dyssynchrony was something he never mentioned-I am glad to now get the estrogen/progesterone connection. This may seem off the wall, but in the course of researching why the heck I kept miscarrying, I took part in a "study" on recurrent miscarriages to discover I have a progesterone allergy. The doctor doing the study had me take sublingual progesterone drops-I never could understand the rationale for the dosage, and I couldn't swear they helped, but I went on to conceive and carry to term two daughters after taking the drops with both pregnancies.
Flash forward a few years, and I am forty with pain throughout 75% of my cycle each month, the follicular phase has shortened by 2 days (what causes that-my doc couldn't enlighten me at last visit), and ultrasound showed at the appropriate time that I have very few follicles in either ovary (consistent with a previous failed Clomid challenge test that indicated I would not be a candidate for IVF). The doc said I had adenomyosis, for which he could prescribe BCP's or "take everything out." Any suggestions for the adenomyosis? Is there anything to taking progesterone cream, esp. since I seem to have an allergy to progesterone (interestingly, with my last successful pregnancy, my progesterone level was 9 when I was actually pregnant but not showing positive by blood test) and dropped to 6 (no lie) by the time I tested positive a week later-I was put on supplements and did take the "drops" from the other doc...)? In other words, once you have a build-up of tissue with adenomyosis, do you just never completely efficiently shed the lining that grew that month, or is something else going on that would be resistant to removal except via surgery?
Look forward to your response.
Hi there-
It sounds like you have a deficiency of progesterone rather than a true allergy (otherwise you would have reacted to the "drops" of progesterone).
"Luteal phase deficiency" is where you don't make enough progesterone to sustain the pregnancy until the placenta takes over at about 8-10 wks. It can cause a dyssynchronous endometrium, where the lining of the uterus hasn't matured to where it should be by the time the egg comes in to implant. It's a common cause of recurrent miscarriages and is usually easily treated by progesterone (Sound familiar?).
What's going on now sounds like typical perimenopausal stuff, where the interval between periods shrinks because of decreasing production of progesterone. This can lead to a relative excess of estrogen, which thickens the endometrium, making the menstrual periods heavier, and sometimes can lead to hyperplasia and rarely cancer. This has nothing to do with adenomyosis. Adenomyosis is essentially endometriosis of the muscle of the uterus. Tissue resembling endometrium gets into the muscle layers, and muscle doesn't like blood or other irritants, so it cramps a lot. Adenomyosis can feel a lot like fibroids - heavy, crampy periods, but not typically a lot of pain away from your periods. It's my opinion that if you're done with your childbearing and have adenomyosis, then the best thing to do is have a hysterectomy. This won't cure the endo you may have in the remainder of your pelvis, so that would need to be excised as well. At 40 one could argue both for and against removing the ovaries, but my predisposition is to keep them unless there's a reason to take them out (severe endo involvement of the ovary, family history of CA, etc).
Progesterone can sometimes lessen the symptoms of both fibroids and adenomyosis, and can often lessen the amount of bleeding with your periods, but won't get rid of them, just tame the symptoms.
If you need more personalized info, email me at info@endometriosissurgeon.com.
Dr. Mos
Hello!
I've read through most of your posts, but forgive me if I've missed this topic somewhere. I'm very interested in Polycystic Ovarian Syndrome since I was diagnosed a couple of years ago. I currently take metformin, and exercise as best I can, but the symptoms are still there for the most part.
Have you done much research on the subject? Any better meds out there nowadays? I'd love to hear your opinion on this topic.
Take care!
CL, WA state
i may have missed an opportunity to provide feedback for the 11/29 webinar. it's later in the northeast, i was a little tired from the whole day, and i think i dismissed the window for feedback, not sure.
i enjoyed the webinar. you 2 are great together. you definitely make me laugh. i listen intently to catch the things you say, like the "cartoon" of reflux menstruation.
another thing i think - and i'm sure you won't, don't change your way of communicating. it's refreshing. it's bold. i've taken so many courses on "matching the other person" for effective communication. you have to know that most of your audience is likely sad, frustrated, in pain, etc. this is a case where you 2 should be matched for effective communication. your audience should make the effort to be relaxed, enjoy the banter, to appreciate your spirit. only then can personal changes happen for them.
i am looking forward to the next webinar.
Hi Dr Mos! Love to read your stuff, along with Dr Redwine's...I had surgery a few months ago with an 'expert.' I have several pages of an op report which detail the endo that was removed. However, here I am, still with pain. I do think it's better than pre-op, but really, I am concerned with how deep the pain is. Also, really with how widespread it is.
Earlier today I had strange feelings in the areas of my ovaries. Almost like electrical charges! :( I should say this is about the 3rd day of my period. Can a doctor know from my op report and from my symptoms where I might still have endo? I am quite sure he didn't get it all, although that seems to be what he tells all his patients.
I think enough time has passed for me to have gotten past the recovery stage, so any pain is endo pain, not healing pain. Thank you very kindly. jackie
Hi Jackie,
Thanks for writing.
Yes, we can often tell by reading the operative report, looking at the photos, and comparing these to the patient's current symptoms whether or not endo was left in. Some people after excision have immediate relief of all their pain; some don't, and it takes a while before things settle down and they can tell how successful the surgery was. I'd guess that 3-4 months is long enough to tell whether or not there was significant pain relief. If you want, I'd be happy to review your file (I'm still doing free record reviews) and give you an opinion more specific than I can here. Write to us at info@endometriosissurgeon.com..
Dr. Mos
HI, another question - do you need the photos? I have polaroids (I think that's what they are). Not sure if I can get more copies. Maybe I could scan them or make color copies? I am guessing the photos are important though? thanks again Jackie
HI, one more question that might help others too - how long does it take to get a record review back from you or Dr Redwine, and how long then before a surgery could be scheduled? I've had a week of pain, and it's getting to me! I should be better in a day or two, and then can get my records out. thanks again, Jackie
Does progesterone 'hide' endometriosis? Does its use help or hinder endo docs?
Jackie,
It should take 2 wks for a record review to be done, but if you like I can give you a brief impression by email sooner.
The best way to approach this is to email us at info@endometriosissurgeon.com, then we can reply directly, faster, too.
Yes, the photos are important, and color copies should work ok.
THanks for writing.
I'll answer the progesterone question in the blog.
I had surgery with you and you removed my ovary which was attatched to the back of my uterus. One month later it reattatched to the top of my uterus, why does it do that?
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