Endometriosis?

November 14, 2006 7:47 AM

What kind of treatment have you had for endometriosis, and how were the side effects?

I have just been given a tentative diagnosis of endometriosis, pending surgery I have scheduled for late December. I am not that anxious about the surgery. But my doctor is reccomending Lupron for six months afterward, which freaks me out. I don't take the birth control pill because it exacerbates my anxiety/depression, and I am concerned that the Lupron will do so too, if I take the add-back drugs to prevent hot flashes and bone density loss.


I'd also love to hear other women's experiences, about Lupron specifically and endometriosis in general. Although I am happy to have something explain my horrific cramps, I am also very bummed to now have a chronic condition.

posted by miss tea to health (7 comments total)

i had a close friend that had this and had terrible problems trying to conceive...eventually (after a couple surgeries, and all kinds of treatments) she tried a radical therapy from some doctor at cornell. essentially his idea is that endometriosis is caused by a bacteria, so this guy's treatment is to pump the patient with antibiotics. my friend had to wear this contraption on her that flushed her system with antibiotics for days at a time.
But it worked! she's 6 months pregnant.
Anyway. Sorry about your condition, hopefully this anecdote will give you some hope. I think there's a yahoo group just for this one doctor and his theory...sorry i don't know his name, but if you email me, my username at hotmail.com, i'll try and track it down.
posted by alkupe at 8:03 AM on November 14, 2006

miss tea, sorry to hear you've joined our ranks. I had surgery a little over a year ago, and have recently discovered I have two new cysts :(

Before I tell you about me or my cousin, or point you to any resources, I want to say that you can live well with endo. When researching the side effects and the effectiveness of the treatments, it's possible to become deeply depressed, and for good reason.

But remember that people who go online or to groups to discuss their conditions, or people who put a lot of time and energy into an organization like the Endometriosis organization are most likely in the throes of suffering, or at the beginning (like you) looking for answers, or are the less common cases where nothing is working for them. This is not to say that there is anything wrong with listening to these people, or with them being involved in these things, but to say that you might not hear from the people who got surgery, or Lupron, or something, got relief, and stopped talking about it. You're going to hear about the rare cases where the implants moved to the nose, or from the exhausted and unhappy woman facing her 28th surgery. Don't let this make you feel like there is no hope. There is.

My doctor doesn't think too highly of Lupron (that's my impression anyway) and from my research I've decided to never go on it. To me, the side effects seem worse than the disease. My cousin was on it for six months, and that stands out in her mind as probably the worst time of her life. It also didn't have any appreciable long term affects. So essentially, she replaced one kind of pain for another, and then had an eventual return of symptoms (along with some fun new symptoms).

For me, surgery has made a drastic difference in the amount of pain and swelling that I experience (even with the new cysts). I still get minor cramps, but nothing that keeps me from leaving bed or the house. But it did take a lot longer to recover than they suggested. This is probably because I had a *lot* to be removed. I recommend that you take more than the 3 days they recommend if you can (although, my cousin took only a Friday off, and went back to work on Monday--I couldn't have, but it's not unheard of). Here's a little timeline of my experience:

3 days - began to be able to use bathroom / get meals and water without too much pain

1 week - could have done some desk job at reduced hours if I had to, but really didn't want to

2 weeks - was almost okay, but couldn't do a lot of heavy lifting (which I discovered after babysitting a toddler for the day left me exhausted with a low grade fever)

3 weeks - everything normal except sex (which was very painful), blissfully painless period

4 months (yes months) - sex finally back to normal (normal by pre-endo standard, so worth the wait)

I put this timeline up not to scare you, but because I really wish I'd had someone say that it might take a long time to be really fully functional again. You'll be mostly better pretty quickly (quite possibly faster than me) but the last little stretch to full health might actually take a while. This doesn't mean that it will never happen (as you can imagine I was a little worried about at month 3).

Some useful resources:

The Endometriosis Association has published some really helpful books, which I was able to check out from the library. They also run support groups and have conferences, but I haven't been involved in these.

The Endometriosis Zone has a lot of references. You have to sign up, but I've found it worth it.

Since I'm not trying to get pregnant, I've been pretty frustrated with the help groups and a lot of the material out there. For instance, I didn't find the endo group on yahoo particularly helpful, and the focus seemed to be a lot on pregnancy. But there are a lot of useful books if that is your goal. Most of them do have stuff on pain relief as well, so you can pick through if pregnancy is not your main goal. Both of the sites I listed suggest a variety of books. I found that the best thing was to go to the library and see what appealed to me.
posted by carmen at 9:13 AM on November 14, 2006 [1 favorite]

I had surgery to remove the lumpy bits about 10 years ago. I never took any weird drugs subsequent to the surgery. I thought the cysts were coming back, but after I got pregnant, I haven't really had any issues at all. (Crosses fingers, prays to the giant uterus goddess.)

I tell a lie, I still get cramps that *I* think are ungodly, but only about once a quarter am I so disabled that I miss a day of functionality. But, so far, cyst free, it appears.
posted by dejah420 at 9:18 AM on November 14, 2006

Thanks, carmen, that's helpful. I am having the surgery over New Years' weekend, so I will be able to take tthe extra days.

I will head out to the library!
posted by miss tea at 9:58 AM on November 14, 2006

After years of really shocking pain, I had the surgery to diagnose when I was 19. Although I didn't know this at the time, my doctor wasn't particularly expieranced with endo, so she wasn't prepared to remove many of my trickier lesions at the time of the surgery, making it's success as a treatment negligible. Like carmen, my recovery was considerably longer and more painful than I expected. I was basically useless for five days and swollen, bruised, in pain, and very very constipated for about two weeks.

Afterward, my (again, not very credible doctor) gave me six months of lupron. It was a terrible, wretched thing. I cannot believe they give chemicals that powerful out so freely. I had all the symptoms of menopause (hot flashes, night sweats, depression, mood swings, zero sex drive, weight gain) but my period never stopped completely (add-back drugs) and it had to effect whatsoever on my pain. I would really, really do your research before you consent to this stuff.

Next, I used depo-provera for a year. What was good about this is that I didn't have periods and no period meant no pain. However, the side effects were almost as bad as lupron. My skin and hair were extremely oily, I had acne and bruises all over my body, sex drive was still nil, my breasts were sore the whole time, and I still had mood swings (although not as powerfully as with the lupron when I could go from fine to sobbing mess in three seconds or less).

Since then, I've been cycling my birth control pills (like with seasonel) so that I only have four periods a year. This is the most effective way of dealing with my pain because, again, no periods equals no pain. The four I have a year are doozies. I have to take time off work, but it's better to do it four times a year than two days a month.

I'm sorry to hear that bcp mess with your anxiety and depression. I've had major problems with both, but for me, the pain and worry of my periods became a major trigger for my emotional problems, so the birth control was a viable solution. It might be worthwhile to do some research on what pills you've taken and what their relative amounts of estrogen and progesterone were. I had major emotional problems on depo-provera (which is entirely progesterone) so I seek out pills that have the lowest progesterone I can find to avoid that problem.

Sorry this is so long, but I'll just end by saying that, yeah, it is really scary to be told that you have a chronic problem. That you're body is "broken" and that there really isn't anything anyone can do to fix it. Six years after my diagnosis, I still really struggle with that. The best thing you can be is informed. I was young and scared and went along with whatever my (slightly quack) doctor told me. I wasn't in charge of my treatment, and that made me feel powerless. Good luck at the library; that knowledge is the best weapon you can have.
posted by mostlymartha at 10:22 AM on November 14, 2006

I have ovarian cysts (very persistent ones), 2 fibroids, and an endo diagnosis (mostly adhesions rather than new growth). I am a librarian and have researched the fuck out the situation. It is depressing, indeed. My personal plan is to avoid surgery and Lupron in favor of using the NuvaRing to skip periods, as described upthread.

I have heard positive things about endometrial ablation. I am also using certain herbs (yarrow primarily) to see what difference they may make. Chinese medicine suggests that "blood stagnation" is related to the liver, so I do what I can to keep that organ happy, including avoiding ibuprofen.

It is good to share experiences about this.
posted by Riverine at 2:50 PM on November 14, 2006

Late to the thread, but thought I'd add my 2 cents anyway ... I was diagnosed with endo almost 10 years ago at age 28, when I had a laparotomy (big incision, like for a c-section) to remove 2 large cysts (one was basketball-sized). Recovery from this surgery was fairly quick (about 5 weeks). Until then, I'd had fairly normal periods. I continued to have normal periods and only moderate cramping until my second cystectomy about 3 years ago. During this time I was prescribed birth control pills, but had to stop taking them due to menstrual migraines. After my second surgery (laporectomy; smaller incisions, 2 week recovery), my periods still weren't hellacious, but a bit worse than before. Advil could take care of them. I was getting a good bit of exercise during this time (practicing karate - made it as far as yellow belt). About 9 months ago the worst pain started, constant lower back pain, crippling during periods. I moved from popping Advils to Tylenol 3s to Percocet. I missed quite a bit of work. I finally had my third surgery 5 months ago (another laparectomy), to clean up what my doctor called "a huge mess". Lesions and adhesions everywhere. My uterus was stuck to the pelvic floor. My doctor gave me 2 injections of Lupron prior to surgery, to help reduce bleeding. The Lupron was a nightmare; hot flashes, night sweats, anxiety, and for some odd reason, increased sex drive. Like my motor was constantly revving. I was miserable on Lupron, and though I've been off it since then, I still feel its effects. Sudden weight gain in my thighs and belly. My abdomen and lower back are still tender, and I feel "hot spots" of pain from my ovaries from time to time. My doctor has a call in for me to get another ultrasound, but in Canada it takes 3-8 months to get an appointment (but at least it's free). I never wanted children, which is a damn good thing, because my tubes are pretty much shredded.

Good exercise, if you can handle it, is a great way to reduce pain. I also use a heating pad almost every day. I have a friend who's on a special diet to reduce estrogen (since many foods contain estrogen, or estrogen-like substances, like soy) for her endo, but my doc doesn't think a diet like this would be helpful, as the body produces only the estrogen it needs, and gets rid of any excess. The theory that endo might be caused by bacteria is very interesting, but a Google search brings up nothing.

Thanks for posting. Sorry I'm late :)
posted by Koko at 6:03 PM on February 22, 2007