Endometriosis and Treatment

In the General Question’s thread, Why Is Human Birthing So Painful, we got off on a discussion of endometriosis cramps. I said:

To which **Posted by mmm… forbidden doughnut ** replied:

So, here’s the story:

It wasn’t until I was twenty-two that I finally found a doctor who understood what the problem was. Sadly, many doctors either don’t understand endometriosis, or dismiss it, saying, “It’s all in your head.”

The first time I had an attack, I was still in school. They rushed me to the emergency room, where I was diagnosed as having a stomach flu. By the time a doctor finally saw me, the cramps had subsided to a “weakly-weeping” stage. Due to the vomiting, he guessed flu. He guessed wrong.

The second time, I immediately recognized it was happening again, much like you’d never forget the face of a person who walked up and kicked you in the stomach. I went to a doctor as soon as I could get an appointment, and told him what the symptoms were. He told me that he’d seen this before, and it would clear up right after I had a baby. I tried to explain that they were different from normal cramps the way that a migraine is different from a headache, but he just gave me an irritated look and said that it was all in my head, and I should learn to deal with a “little discomfort” which was, after all, just part of being a woman.

Every woman in my family suffers from this ailment, but never knew what it was. My family is generally more stoic about pain than I am, and they would all “stick it out” until their problems became so bad that a hysterectomy was required. Three aunts, my grandmother, and my mother have all had to go through this, and now only one aunt still hasn’t gotten a hysterectomy.

I wasn’t about to sit around and suffer because a doctor told me there was nothing that could be done. I went to another, who gave me Naproxen Sodium for the pain. It helped, he explained by trying to prevent the inflamation of the endometrial cysts in the first place. It did help me somewhat, but I still having bad cramps.

Two doctors later, I found a nice gynecologist who understood the disease. She drew diagrams and explained everything to me, and I finally understood what I suffered from, and how it worked. She outlined several options for me, and we decided to go with the least invasive, which is the Depo-Prevera shot. She said that if Depo didn’t work, we’d move on to trying to burn the cysts out with a laser. Should that fail, we would move on the chemical menopause, and as a last resort, consider more radical surgery.

Rejoice and be exceedingly glad!! I have never been happier in my life! The Depo worked for me. My periods have nearly ceased, and I only occasionally have cramping, but it’s the kind which can be controlled with OTC medications-- what I imagine the rest of the world’s “normal” women have. No longer do I dread a certain date of the month, knowing that it will be spent sobbing, vomiting, and writhing in agony.

Endometriosis is not curable. In my case, it could get worse, but right now, the treatments do seem to be controlling the cramping. I’ve been on it for almost three years, and my worst side effect, so far, was a temporary two-pound weight gain.

And the icing on the cake? Depo’s covered by my insurance policy, because in my case, it’s “treatment” not birth-control. It’s the only positive thing I ever got out of endometriosis.

My advice for any sufferer: keep looking until you find a doctor who understands and knows how to treat this illness. * You do not have to suffer!!! *

This thread is for all of my fellow Dopers with endometriosis. What treatments have you gone through? How have they worked for you? What suggestions do you have for other women who may be suffering? Share your stories!

Glad you started this thread, Lissa.

I first went to a doctor about my endometriosis when I was 15. She told me that she’d give me a prescription from some naproxen sodium also. When that didn’t work, she gave me some ibuprofen. When that didn’t work, she told me that if I’d pop out a few kids, that’d make things a lot better.

Thanks for that great medical advice to a fifteen year old. Just have some babies! And the ibuprofen–glad you went to med school for that. Gee, all along taking Advil had never occured to me while I was writhing around in pain. :rolleyes:

Anyway, seven years and five doctors later, I finally met a doctor that actually believed me when I said that on a scale from one to ten, the pain was indeed a nine, and that I spent four days out of every month lying in my bed, wishing for a quick death.

Treatment so far has been to take a low dosage levonorgestrel and ethinyl estradiol pill for four months straight, thus (TMI alert) having only three periods a year. I use valdecoxib tablets (most commonly used to treat arthritis) for the pain and they work wonders. This is mostly covered by insurance (I pay less than $10 a month).

My advice to others would be similar to your own: keep looking for a doctor that you’re comfortable with, do lots of reading, and for crying out loud, don’t let anyone ever tell you it’s all in your head.

Funny you should mention kicking people in the stomach. I cannot fathom a physician telling their patients these things. Thinking them, maybe, but saying out loud? How terrible.

My former colleague had endometriosis, and for months she was either on medication and/or went from class to class with a heating pad on her lap. Occasionally she was forced to take days off, and, being a graduate student, this was not conducive to getting work done. Last time I heard from her, she was possibly facing surgery. Life wasn’t much fun for her.

My sympathies to any woman with this condition. It’s a shame you have to worry about finding a caring doctor on top of everything else.

I’ve had problems since I was a teenager (actually, I remember my very first period at the age of twelve being agonizingly painful), but haven’t had a doctor willing to do anything about it until a couple of years ago. Most doctors give the advice of “Use a heating pad and take Aleve”. Thanks, genius. If that worked, I wouldn’t be in your office begging for painkillers to help me function three days out of the month, would I? I typically throw up on the first day of my period, and can barely stand. The pain decreases throughout the next several days, although days 2 and 3 are usually still pretty bad. I’ve gone on ortho-cyclen for mine, which has at least reduced some of the pain and made my cycles a lot shorter. I also take Percocet or Vicodin if necessary - much of the time, it’s necessary. Prior to going on the BC pills, though, I was pretty much in pain all month to some degree, and ovulation was even hell. I could always tell exactly when I was ovulating because it was a different kind of pain.

If it weren’t for the fact that I couldn’t afford the procedure at the time, I would have had a laparoscopy done two years ago. However, once my new insurance begins here, I will probably have it done. I’m scared to death about it - I’ve had major surgery before, so it’s not the pain I’m worried about…I just don’t like invasive procedures. And I’ve heard conflicting stories about how it affects fertillity - since I do want to have kids in a couple of years, this is a big deal to me.

Lisssa, I’ve thought about Depo, but the side effects have freaked me out. Glad to hear that it’s worked for you, though. I may have to re-examine this as an option.


I can’t believe that a doctor would tell you that it’s all in your head! I grew up with an OB nurse for a mother, so I’ve always known about the disease. My best friend has it so bad that she may indeed die from it some day when it strangles her intestines. Right now she taking Luprin(?) and is much happier 3 weeks out of the month. Unfortunately, it wears off early on her and her insurance will only pay for the shot once a month. She doesn’t want kids and won’t have the surgery. I feel for her.

Thanks, Lissa and everyone, for sharing painful (literally painful) stories. I kind of have a double-whammy: PCOS and endometriosis. here’s my story…

I didn’t “become a woman” until I was 17 but wasn’t regular so my mom had the dr. put me on birth control. I think that’s why I didn’t know I had the endo until much later in life. Anyway, when I was 19 and in college with no money, I went off the pill. The dr. I was seeing was at the free women’s health clinic at the public health department. I told him I’d stopped taking the pill but my periods had stopped. After some talking, he told me he believed I probably had pcos and that the only thing I had to worry about was that it might be difficult to get pg when I wanted to (dangerously untrue). Whatever. When you’re 19 all you care about is not getting pg. So, I got back on the pill and didn’t worry. Still, I do have to give the guy credit for pin-pointing that.

So, fast-forward about 10 years and I’m happily married and we decide it’s time for a critter. I go off the pill expecting (naively) that I would get pg right away (I had forgotten about the pcos “thingie” by this time). Well, I was actually shocked when I didn’t get pg that first month despite out very rabbit-like behavior. And I didn’t get pg the next month or the next (I was the one person in Health class that believed all those stupid films.) Finally, I got pg but at the first ob appointment, he told us that something was wrong. We did a D&C but turns out, it was a tubal pg’cy and my tube ruptured about a month later. Emergency surgery ensued. Tube is completely shot now, useless because of scar tissue.

After about 6 more months of trying, I finally went to a specialist. All this time, my periods were getting fewer (because of the PCOS) and more painful (because of the endo). The specialist said he wanted to do some surgery to get in there and look around and he found the endo (removed it) and the cysts on my ovaries (can’t be removed just drained). The follow-up treatment? Six months of Lupron therapy! It was living hell. I will never do it again. My periods are better but the effects of the lupron were so horrible.

After another 6 months, we tried fertility drugs. Which didn’t work. Finally, the dr. told us that, short of IVF, we would never get pg. Since IVF is very expensive, we decided to adopt instead. So, we started the process. About 3 months into it, I got pg. Out of the blue! (please don’t say, "When you relax, that’s when it happens. That’s very insulting to people with diagnosed fertility problems. And it’s just inaccurate. It only happens about 5% of the time. You just hear about it alot when it does.)

So, now, after 4 long years of waiting, we have a beautiful, happy, perfect son and we will hopefully try for another one soon. I have an appointment with a new dr. this summer to check out my insides. Also, if you have endo or pcos, it’s a good idea to stay on top of them even if you never want to have children. The endo becasue of the obvious pain but also the pcos because it can lead to major health problems if left untreated. Get it checked out.

This is my longest post ever on the SDMB!

mmm… forbidden doughnut

Avabeth, laparoscopy is minimally invasive, and is available to most women. 3 little holes, and then the surgeon looks around inside using a camera. They can also treat this way, by removing some scar tissue or cysts. You will be sore, but recovery is typically a couple of days. It can usually be done as outpatient surgery.

I had a laparotomy - Huge incision, open abdomen. they had to go in and move parts out of the way - basically a C-section but they left the uterus intact. 6 weeks to heal. Not fun, but I also had a 10 lb cyst. There was only 1 way to get that out, and thank God they got it out.

Ava, don’t be scared. It’s an easy surgery. I’ve had two: one to remove a tubal pg’cy and the other to remove endo. Two days after the second one, I cooked Christmas dinner for my whole family. It’s a tiny incision (1/2 inch) in your belly button and another tiny one about 6 inches south. And the relief is worth it. My period before my surgery was wretched. I was vomitting, diarrhea, cold sweat, very nearly passed out on the toilet. Afterwards, I felt so much better. And it doesn’t affect fertility in a negative way. It’s supposed to help it. Of course, IANAD and all standard discaimers apply. :smiley:

It’s funny, I was just discussing this with someone else from the board in email and she told me the same thing. And I swear, I’m not a baby about these things. I have a high tolerance for pain (I think everyone with this condition has to have that) and I’ve had surgery before - but the thought of them going in through my belly button freaks the crap out of me. I know once I get in there, I’ll be fine - it’s just the worrying beforehand that scares me.


I wasn’t dianosed with Endometriosis until it caused a chocolate cyst on my ovary at 28 (Which they didn’t know that was what it was until they went in there. All we knew was there was a solid mass on my ovary on teh ultrasound). I had laparoscopic surgery and they removed all the endo lesions they could see. I had been trying to get pregnant for 3 years at that time, and got pregnant about 6 months after the surgery. It helped my fertility tremendously. I couldn’t have gotten pregnant without it. The surgery really wasn’t bad, especially if you have had major surgery. That was my second lap, and they were both about the same. The weirdest part is that they use some kind of gas to fill your abdominal cavity. They do their best to get it all back out, but they can’t get it all. Your tummy is a bit puffy at first, but then the gas rises and your chest feels a bit sore for a day or two. But it isn’t bad, just weird.

I guess I had it easier than some. After the pain hit me the first time, (I was 27), the doctor did all kinds of tests and exams, and by the time it his a second time his diagnosis was endometriosis. I was scheduled for a laparoscopy as soon as possible, and the pain hit one final time before surgery. The doctor explained everything, and told me possible side effects. I had one tube and ovary removed, and a heavy course of antibiotics for several weeks afterwards. It’s been over twenty years with no recurrences. Except for the kidney stones I’ve had the pain of endo was the worst I’d ever felt.

Like ** Baker, ** my endometriosis didn’t start until I had been having periods for about three years. When the pains first hit, I thought I had toxic shock syndrome, and that’s why I agreed to be taken to the hospital. Like I had read in the instruction leaflet, I told the doctors and nurses that I had been using tampons, but they just nodded, but never even took my temperature. So, when it hit the next time, I had suspicions that’s what it was, and that they had missed it.

avabeth, I couldn’t take oral contraceptives. That’s what they tried first-- one of the pervious unsympathetic doctors. They pooh-poohed my complaints that the pills made me sick. Honestly, though, I had so much nausea while I was on the Pill that I couldn’t eat, and didn’t affect the pain I had. The doctor, however, insisted that it was “best” for me, and dismissed my requests to try a different brand. That’s how I finally met my current doctor.

The possible fertility side-effects of Depo Prevera have never bothered me, because I don’t intend to have children. For those who do, I can imagine that this would be a big concern. I’ve heard that it can take years to leave the system fully.

**slice, ** I was around sixteen, myself, when the doctors said that I’d feel better after a baby. I was pretty floored by that “advice,” too.

A friend of mine had severe endometriosis in the 80s. The male emergency room doctor (same doctor - 3 visits in 3 months) told her, at the age of 14, she had pain like this because “you sleep around so much” then told her to stop crying and sent her home.

She was finally able to obtain a hysterectomy in her mid-20s after several different, ineffectual treatments.

**holy crap I didn’t notice this thread was 9 years old. Sorry.

I had a female gyn tell me it was all in my head. I fired her and found Dr David, who treated me like it wasn’t all in my head.

It sounds like that’s very common, and it squares with what I’ve heard about gender bias in how pain is managed in women versus men. Here’s a blog post on the subject.

Moved MPSIMS --> IMHO, which is where medical threads go these days.

My ex-girlfriend’s story. We dated in high school, and I just thought all girls had horrifying cramps for a week out of every month. She says that Planned Parenthood literally saved her life; I believe her. It’s an interesting story, ties into a lot of current political issues.

Depo Provera is magical. I got mine from the local version of Planned Parenthood as a teenager too, and I agree with your ex. It saved my life. I would have slit my wrists by now if I hadn’t had it, and that’s not an exaggeration at all.

So, does having a baby ever help?

When I was fourteen my Mom tried to kill herself because she couldn’t live with the pain any longer. She finally went to the doctor and told them that unless they gave her a hysterectomy, she would not be long for this world. And of course once they finally cut her open they found aaaaaalll sorts of problems. It’s ridiculous how hard it is for a woman to have control over her own reproductive health.
My story. I started my period when I was 9. It wasn’t until I was about 12 when the pain really hit. I was put on ortho tri-cyclen right away and it really worked… until I hit my early twenties.

For the last 8 or so years I have been in and out of gyn’s offices trying to find something to help me. In addition to pain I have also had PMDD where my hormones trigger major mood swings. I tried a Mirena IUD, I tried Yaz, I tried Lo Ogestrel and even tried ortho tri-cyclen again. I had a trans-vaginal utlrasound, which was terrible because I have pain with any kind of penetration and haven’t been able to have intercourse for years.

Early last year I was hit with a sudden attack in the middle of the night, and I thought I was dying. I could barely call for my husband to get an ambulance. Once I realized it was cramps, I laid on the floor by the bathroom until the morning. And that’s when my doc said, “I think you might have endometriosis.” My Mom had it, my Grandmother had it, and both had hysterectomies.
So the doctor had me try Depo.

I was on Depo for 1.5 years and the results were amazing. My cramps were reduced to just one day a month and controllable with OTCs. Not only that, but my severe IBS went away. I hated the weight gain, but it was worth it for the relief.

The only problem is, I plunged into a nightmarish depression. I’ve always had severe chronic depression, but I hadn’t been that bad in years. This March I damn near ended up back into a mental hospital because I made a plan to kill myself.

So a few weeks ago, I went to a new doc, and she diagnosed me, officially, with endometriosis. And she told me the Depo probably was responsible for my depression, and it really sucked and was unfair, but I was basically going to have to choose between pain and depression, and once I tried a new treatment I probably wouldn’t start feeling better for three months. She didn’t want to put me on Lupron because apparently the depression risk is way worse than for Depo.

So she put me on Seasonale as a continuous BC. I’ve been on it three weeks and so far so good. Well, the first week I spent in bed… but now I seem to have adjusted. As the Depo has gone out of my system my spirits have lifted considerably. I had no idea how badly it was making me feel. My doc thinks that once I am hormonally stable, my pain with intercourse will go away. And so far the IBS has not returned.

I imagine there is probably a hysterectomy in my future. I’m 29 and my Mom had hers when she was 36, my grandmother even younger than that. I have not yet broached it with the doctors. But I am open to seeing is this continuous BC method works.