May 05, 2005

Curious Georgette: Endometriosis not for easily grossed-out monkey-men

The Endometriosis Association was the first organization in the world created for those with endometriosis. As an independent self-help organization of women with endometriosis, doctors, and others interested in the disease, it is a recognized authority in its field whose goal is to work toward finding a cure for the disease as well as providing education, support, and research. Any of you girly-monkeys have endo? What treatments have you found work best? Normally ibuprofen, T3's and regular exercise work for me, but I'm thinking a third surgery may be likely in the forseeable future. So what are your experiences? Specifically I'd like to know if anyone's gone as far as hysterectomy (a pretty brutal solution, but it would take care of it once and for all). So come on, lay those sticky ovaries on the table!

posted by Koko 18 years ago
  • i was diagnosed with a mild case years ago, and the doc advised 6 ibuprofen tabs every four hours when i felt the pain coming on... yikes! in my case, though, it wasn't any big deal as i wasn't having kids. (which is probably what contributed to it in the first place.) sorry you've had so many problems! do you have or want kids?
  • Don't have kids, don't want 'em (one cat and one husband are enough children for me, thanks), and couldn't have 'em if I did. So it's a good thing I don't! Most days it's not a big deal. My case has been fairly moderate since the first surgery. I actually enjoy being hopped-up on codeine. Perhaps a little too much ...
  • but it sucks that you had to have surgery. yeah, i think if i were in your situation i'd consider the hysterectomy. frankly, between you and me (and the 3,390 other monkeys!) i've always felt it's really useless to have a period EVERY SINGLE MONTH FOR DECADES ON END considering i ain't gonna use my womb. my mom had a hysterectomy after my youngest sister was born and never regretted it. her back pain disappeared. and she went on Premarin so she didn't go through the hot flashes, etc. i've often been tempted. but it IS major surgery, so i figure, well, if it ain't broke don't fix it. but it sounds like yours is broke enough to consider it!
  • One of my good friends had an extremely severe case of endo and had a hysterectomy on her 30th birthday. This was, I beleieve, 5 years ago. She's never felt or looked better. Before the operation, she would miss work due to the pain of her period, couldn't have sex without excruciating pain (so she just didn't have sex), and she was a snarky bitch all the time because she didn't feel well. Her hysterectomy was done vaginally, rather than through the abdominal wall, and was an outpatient procedure. She couldn't lift anything over 5 pound for a few weeks, but she healed up wonderfully. When I met her 15 years ago, she was able to keep the endo under control somewhat with exercise and diet (she found wheat and wheat gluten to be a major agitator), but the condition kept getting worse, to the point where the surgery seemed like a minor thing in comparison. Not wanting kids helped validate her decision. I'm not sure what kink of hormone therapy, if any, she is/was on, but I'm fairly certain it's not premarin-based. And she did not turn manly. She looks and feels great. Good luck!
  • My stepmom has pretty bad endometriosis. Doesn't have kids and doesn't want them, but the doctors haven't let her have a hysterectomy (which is a rather attractive choice with as bad as hers is) because she's too young and might change her mind about having kids. Even though it's probably not possible. Currently she's been put through false menopause twice and is on continuous birth control kind of stuff... She seems to be alright now. The doctors really need to quit being stupid though...
  • My understanding (albeit from a few years ago) of it was that there were a significant % of women who have this and it's never diagnosed - other than having above the 'norm' in terms of discomfort each month. Because often it can just be a teeny weeny bit of endometrial tissue in the abdomen, often on the outside of the uterus. Meaning that it's got a wide range of presentation of symptoms. I've seen ladies with brain and lung symptoms. Imagine getting monthly headaches and eventually they correlate it with periods. Or coughing up blood with similar regularity (admittedly that one is usually more quickly identified). Astounding. That uterine tissue sure does love to flourish. IRL, last time this subject came up and I said to a couple of coworkers that it was one of my 'favourite' diseases, I nearly got beaten over the head. I had to do some quick explaining. But I have studied it and have worked with some afflictees. As usual in the field of gyn. problems I have a great deal of empathy and just like to help - either in a hospital or with SO. [Some things in medical science just really draw my interst.] *spits on floor, scratches crotch & returns to tv sports*
  • What I find interesting is the possible link to dioxin. It seems a plausible explanation to me. Something else to blame those chemical company fat cats for. It's true that a large percentage of women may have it and never know. The only way to accurately diagnose it is through surgery.
  • I had a friend who had endometriosis that was bad enough to require surgery, then eventually the hysterectomy option. If that is what is required to live a full and happy life, and she *was* much happier afterwards, I say go for it. Life is to short to be lived in the grip of pain. Just my two cents worth (male monkey)
  • My wife had endo surgery 16 years ago. I recall uterine and intestinal adhesions. This was the bellybutton incision treatment with scope and laser. There was significant discomfort afterwards due to the CO2 in the abdomen with nowhere to go. In the following years there have been no recurrances, and we have had two children. Benefit to me was that there were no more complaints if I "poked" her too hard.
  • i had a laparoscopy to help eliminate some of my adhesions and endometrial growth. unfortunately, the pain came back shortly after the procedure. my gyn put me on year round birth control pills. now i don't have a period or pain. (i have noticed some minor pain but it is so sporadic that i don't really count it) this method isn't recommended if you are planning to utilize your reproductive system.
  • not for easily grossed-out monkey-men Ahem- not for easily grossed-out *monkeys*.
  • True enough. I just figured it was more likely to give males the heebie-jeebies.
  • Yep- I was worried about quonsar getting queasy.
  • I have a picture from my first surgery, wanna see?
  • Wanna hear about the time I had an affair with laser? Love that bbq aroma!
  • Been there. Had one. Never looked back. Stupid f*ckin' male doctors that just HAVE to control a woman's reproductive organs. One of them pulled that shit on me to when I was younger. Took several years and another kid to finally get things done the way they should have been. If I could find the bastard I'd reach in and pull his testicles out his left ear. Slowly.
  • Thanks for the comments and advice, everyone! I now open the floor to crude jokes and poetry.