seeking data from people with uteruses (uteri?)

[truepenny]

Dear Internets,

Please tell me about your experiences with endometrial ablation. My gynecologist has suggested it as a possible way to deal with my menstrual cramps (still awful--we're at 800 mg ibuprofen, and that still only downgrades from OW to ow (with spikes of OW). She says her experience has been that it is quite successful. My acupuncturist, on the other hand, said immediately, "Oh, that never works." Her experience has been that women who get ablations almost always end up getting hysterectomies.

Because I'm on a lot of different drugs currently, and it looks like that's going to be a long term thing, I'm reluctant to go back on the Pill (also, there's the endless uterine drama of trying to find the one that works, but doesn't give me horrific side effects, and then there's the long-term effects of the Pill itself, and, and, and ...), but I'm a little skeeved by the whole idea of ablation, and there's also the fact that as a woman who started menstruating before the age of twelve, who has never been and never intends to be pregnant, and thus also has never lactated, I hit several of the risk factors for endometrial cancer--which ablation makes much more difficult to detect.

Basically, I don't like any of the options I can see, and I think I need more data. All comments, from the anecdotal to the clinical, will be gratefully welcomed.

And, as an apology for a very self-centered and overly share-y post, let me point out that "Blue Lace Agate" is available as a podcast at Lightspeed, as are many other fine stories, including one by mrissa. (I would link, but Lightspeed's site is currently down.)

Comments

[resolute.livejournal.com]

My partner *just* had this done. The following 48 hours were full of nausea-inducing cramps, but ... but she said they weren't as bad as actually having her period, prior to the procedure. So I expect it has a lot to do with where one's personal pain bar is currently set. She also reported that the narcotics did absolutely nothing for the cramping, but the massive doses of ibuprofen worked somewhat. Basically she lay in bed, grey-faced, for 36 hours after the hospital, and then was mostly fine.

She did have an ovarian cyst and an ovary removed at the same time. This is her second (or third?) endomitrial ablation in her life, and she consistently has problems with endomitriosis. But menopause is looming, and she's rather hoping it just hurries up and gets here before she needs a fourth.

[papersky.livejournal.com]

My anecdotal experience of lots of friends matches that of your acupuncturist.

And my personal experience is that cramps got worse after pregnancy, so everyone who says you'd be fine if you had a baby can be ignored. However, my personal experience is also that the Mirena IUD helped no end and didn't have the same kinds of side effects of being on the pill. We all have different bodies. I hope yours stops tormenting you this way.

[joycemocha.livejournal.com]

What papersky said, especially about pregnancy. I was told that pregnancy would make my periods regular. Hah! Worst. Variations. Ever. Ignore those who'd claim having a baby helps. It doesn't.

No help on the cramping front; at the time I was only on the Pill and I'm one of those for whom the Pill worked. Lasted until menopause and I'm now in the second year of "damn it, don't go on an eight-month cycle!"

[lightgetsin.livejournal.com]

Plus 1 for the Mirena. I am not exaggerating by much when I say that sucker saved my sanity.

Pros: Insertion is somewhat uncomfortable, but recovery is just a day or two; it's about 1/7 the dose of progestin you get with the pill, and most of it never makes it into general circulation because it is absorbed directly by the endometrium, so that may negate your concerns over medication mixing; most women stop having cycles at all on it; it lasts five years; it theoretically reduces your chances of endometrial and breast cancer because you do not have the big hormone surges every month, though the reliable data is not back on this yet; it also thins your lining over time so there is less substrate for cancer to grow in; it is basically the best birth control you can get these days short of surgery.

Cons: Can be pricey if insurance isn't playing ball; it may take several months to figure out if it's working for you; you may have several months post-insertion of occasional heavy bleeding as your uterus empties out (I didn't, but I was warned about it by multiple women); if it's a bust you'll have gone through the uncomfortable insertion for nothing (though removal is a snap).

Also, and I hope I'm not being that guy, and also also keep in mind that I am a very unusual edge case. I don't have children, never ever want them, would have happily gotten a hysterectomy at 24 if any doctor would let me. Except now it turns out I need that uterus to cook up a kid for someone else who can't do it herself. And I would have been utterly heartbroken if I'd somehow gotten a hysterectomy and now couldn't do this for her.

My point is not that you're going to wake up some day and suddenly convert to the celestial joys of motherhood or whatever. Or that you're going to decide to push out a kid for another reason, as unusual as mine. More that . . . you just never fuckin' know. Nonreversible things are scary, obviously. Even when they're the right thing.

[copperbeech.livejournal.com]

I'm not certain if this is exactly the same, but in 2004 I had a laparoscopy procedure to see exactly what was going on and correct it. I was diagnosed with PCOS and endometriosis, was having 3-weel-long periods, psycho cramps all the time... It was all bad, and frankly always had been from day 1. It just got worse as I got older. I should also preface this with I went on a totally all-natural health regimen to get all of this under control for about a year prior to surgery. The amazing shifts that brought set my surgery up to be a smashing success (optimal hormone balance, etc). Only after the horrific physical symptoms didn't abate was surgery considered.

The procedure was a snap. It was outpatient, went home the same day. She did the uterine ablation, as well as hystosalpingography, and other minor things I don't recall. She did not find active endo, but burned out scar tissue, matting my abdominal wall, intestines, and fallopian tube together. That was what was causing the problems. Because it matted into my intestines she couldn't get it all. I maintained the super strict health regimen after and that has prevented it from growing back.

My GYN is a wonder, and she told me I would be uncomfortable and back to work in 48 hours. She lied through her freaking teeth, and at out post-op a few weeks later I asked WHY the hell she told me that. She said, "I couldn't tell you it was going to hurt like a bitch." I said, "YES, you can, and it's your responsibility to make sure my expectations are realistic. I was thinking something was wrong because I wasn't healing quickly enough." She agreed.

My recovery from this was really painful compared to say appendectomy, and in some ways was worse than naturally delivering twins. I am ever grateful that I did it, because my periods have been like clockwork ever since, and I've had no resurgence of endometriosis. I barely have cramps, now. It's amazing. I really wish I had realized at a younger age that I didn't have to hurt that badly. I'd have done it 20 years ago. I'm 40 now, BTW.

Best wishes to you! And if you want to write me directly to talk I'd be glad to.

[cassandraterra.livejournal.com]

I also stared my period at age 11. I stared on the pill at age 16 due to horrible pain and very heavy bleeding. These have helped but over the years my body adapts to them so I have to change. I was also up to 800 mg of ibuprofen. When I went to my gyno about it she put me on loseasonique full time. I haven't had a period, besides some spotting that can last for weeks, in over a year. I never wanted kids. But having a hysterectomy was never an option since I am not 30 yet.

I am sorry that the pill gives you such bad side effects. Would mirena help? Or something like that?

I wish you all the best. *hugs*

[gwyneira.livejournal.com]

I had an endometrial ablation almost two years ago, on the advice of my gyn, to deal with worsening cramps and super-heavy flow. It was great for about eight months, no flow at all, no cramps -- and then one morning I woke up feeling odd and realized that my period had started again, worse than ever.

I put up with it for a couple of months to see if it would stabilize. When it didn't, I went back to my gynecologist, and we scheduled a hysterectomy. (Which was great, by the way; it was a robot-assisted laparoscopic hysterectomy, and so the recovery time was minimal. I didn't even have to spend the night in the hospital, much to the amazement of the nursing staff.)

So yeah, anecdotally, I'm on the side of your acupuncturist. I don't mind having tried the ablation first, though; it was a relatively easy procedure, and the chance of not having to have the hysterectomy was worth it. (Though again, I now don't mind at all having had the hysterectomy, since I'm done having kids anyway.)

I hope that's not more data than is useful. :)

Way too TMI, but it's my experience

[anderyn.livejournal.com]

I had endometrial ablation to solve my horrible menstrual problems, which consisted of horrible flooding and pain due to fibroids. This was endemic in my family, so my grandmother had a hysterectomy at 21, my mother at 28, her sisters also very early... and I would have KILLED to have had one after discovering that my anemia was so bad that the doctors were suprised I was still walking around. I'd have a ten-day period, bleeding so heavily that I'd once flooded a whole bathroom floor in a gush, stop bleeding for maybe two weeks, and start again. None of my doctors wanted to do a hysterectomy, which I was hoping they'd do, since I had had my two kids, and I was in my early 40s. But noooo. I tried drugs, I tried everything they could think of, and finally, they said I could have an ablation. It was outpatient surgery, and I stayed home over the weekend and rested and was back to work. And it worked. I haven't bled since. It's been over ten years, and no hysterectomy is in the offing. It WORKED and I'm always happy to tell people that it did.

[difrancis.livejournal.com]

I had the novasure procedure about a year or so ago. http://www.novasure.com/ I had it for heavy bleeding and wow, it has almost ended my periods. I used to get a lot of cramps (not totally debilitating, like it sounds like yours are, but significant). Now I don't get any and as I said, my periods are almost non existent (I take Plavix and pre-procedure, I had to change tampons about 2x to 3x an hour--sorry if that's TMI). So between the no more cramping and no more bleeding, I've been very happy with it. It works by cooking the uterous, rather than another method.

Figure I should add this. I have had two kids. Made no difference to my periods. Like you, I am on a lot of medicines and so for me, the pill or Mirena were not good choices. I wanted a permanent solution that didn't have me on drugs. I also was severely anemic and even high doses of iron weren't bringing me up to norm. The ablation has done that. I didn't want the hysterectomy because I was worried about hormonal issues (specifically as relating to some of my health issues). Menopause comes very late in my family, so I couldn't wait.

In the end, it's been very beneficial and I would do it again. HOwever, be aware that once you do it, you can't get pregnant. I know you don't intend to, but it may mean you have to reiterate that to every doc you come across in order for them to really believe you.

[mithriltabby]

obsessivewoman reports that her gynecologist said he has done lots of them and that they usually work.

[shadefell.livejournal.com]

My aunt had a uterine ablation, but wound up having a hysterectomy because of reasons unrelated to the ablation.

A friend of mine looked into it but her insurance doesn't cover it, she's going to look into it again in a year because she doesn't want to deal with the hormonal affects of a hysterectomy.

A friend of the family had an ablation (and an ovary removal) a while ago and has been fine since then.

4 years ago, I would have been interested in getting one (endo and pcos) but unlike every other person in this thread, apparently, I'm a lucky freak who had a kid and then had WAY less cramps and a lighter flow after. I'm still getting used to that. I still bleed more heavily than most people, but it's no longer a shark attack in my pants every 5 weeks.

[d-c-m.livejournal.com]

I would do it again in a heartbeat!! I had a very easy time recovering. I went home cramping, went to sleep and woke-up the next morning feeling find. Yes, I had some healing spotting for a few weeks, but it was worth it! I have very very little bleeding now = like a normal period. Had I known how much this operation would have helped me I wold have done it earlier.

[smills47.livejournal.com]

Jeez. I wish I could be more helpful (I'd actually never heard of endometrial ablation before, so I must thank you for the information). If it were *just* a case of wanting a birth control method that was reliable and non-drug, non-major surgery, I'd suggest looking into tubal ligation. I had mine nearly 30 years ago, the teensy-weensy rubber band method, and never had a problem. But it had no effect on the cramps one way or the other (well, the immediate side effect of the laparoscopy was monster cramps, but after that).

For the short term, I don't know if you've tried/can tolerate it, but as a pain-killer, naproxen worked better for me than ibuprofen. I got it at first by prescription before it was available otc as Aleve. One pill had the dosage of about 1-1/2 Aleve tablets. You're supposed to take it with food, but I always just took it with a glass of milk (if a body was able to tolerate food right then, the body wouldn't need the frickin pill).

I also know four women who had hysterectomies; going that route does require a good bit of recovery time -- the average (before being able to come back to work) was 4 to 6 weeks.

My very best wishes and hope you find a solution that works for you.