Ask MetaFilter questions tagged with endometriosis

How do I prevent or pre-treat various pregnancy issues?

kthxbi — Tue, 17 Nov 2009 18:51:03 -0800

I'm-going-to-want-a-baby-someday-filter: My mother had a ridiculous number of issues getting pregnant (inside). I'd like to do my best to prevent these issues, but realize most are inevitably genetic. I'm looking for various pieces of advice ... To preface - I'm not planning to try for children for at least 5-7 years.

Here is my mother's story in her own words (for the tl;dr skip past the quote):

"Tried to get pregnant for a year. Sent to University hospital fertility clinic. Spent 4 years of taking my basal temperature every day. My periods were so painful I used to rock back in forth bed trying to get some relief. Endometriosis was burnt out 3 times via laparoscopy - on bladder, ovaries, uterus, and I can’t remember where else. I had 2-Hysterosalpingographies in 3 years. Took Danazol for 6 months (chemical menopause). Finally got pregnant with you 6 months later. Nursed you for a year with the hopes of keeping the endometriosis at bay. We hoped I could get pregnant easier. Ended up at University Hospital again, this time they decided to put me on a Clomid, a fertility drug. After 2 years of that nasty drug I gave up. Dr decided to burn out the endometriosis again. When he got in with the laparoscope he found a 5 week old ectopic pregnancy, almost ready to burst. I had no indications to that fact. He had to open me up, to clean out my fallopian tube, but saved it. Dr kept monitoring the endometriosis, and in 1997 I developed fibroids. In a little over 6 months one of the fibroids was the size of a 6-month pregnancy. Dr said it needed to come out, so I had a complete hysterectomy and ophrectomy. The fertility drug I had taken had been studied and found to cause ovarian cancer if taken longer than a year. Combined with the fact my Aunt died of ovarian cancer sealed the case for an ophrectomy."

My questions:

YANMD, but from personal experience, which of these issues am I going to have a possibility of having problems with? Looking for either scientific or anecdotal evidence here.

YANMD, but is there anything I can do now to make getting pregnant later easier? I was on Depo Provera for about 6 months almost a year ago and it completely screwed up my menstrual cycle (I was spotting daily for months, even after dropping off of all forms of bc). I'm now on Portia and things seem to be finally back to normal. I'm slightly overweight but in shape and active. I eat well.

hurts so good...wait, not good

teragram — Wed, 11 Nov 2009 06:20:24 -0800

Sex, ouch. Endometriosis? What kind of pain? I know, I know, I should ask my doctor. I have asked my doctor, and I will ask again. Maybe I should have asked anonymously (do any real life people know teragram? show yourselves!)...but, here goes.

24 year old female here. Been on the pill/the ring for about 5 years, with two or three short breaks. I have been having minor but interfering pain during sex, probably for a month or so. Inside my vagina, but closer to the outside than deep inside, if that makes sense. We tried more lube and more wine, we tried no sex for 10 days, but it still hurts. Not terrible pain, but enough that we have to stop. I am having my period now, and it is uncomfortable to remove a tampon, never had that trouble before. It's sort of an "ooo this hurts, better remove quickly like a bandaid" kind of thing. It also hurts when I remove or insert the NuvaRing, which is new pain.

Unfortunately, the timing is such that it seems to be coinciding with a general need for slower sex anyway: been with my (wonderful) boyfriend for about 8 months, which is around the time when arousal requires more than a kiss or a look. So, we have to slightly change the way we are having sex anyway, complicating the issue. Could be that's all it is.

The problem with pain during sex, other than the fact that SEX HURTS, is that it is a very stressful pain. And you wonder if it's in your head, and you think that maybe the boyfriend or doctor thinks it's in your head. But, the tampon/NuvaRing pain has convinced me that I'm not making this up.

I knew that I was conceived on fertility drugs, but I just found out today that the cause for my mother's infertility was caused by endometriosis and polycystic ovarian syndrome. I did go to the doctor, she had a look and said she didn't see anything that looked strange. I didn't mention my family history of endometriosis, because I didn't know about it at the time. She said if the pain persisted, she would have me see a GYN.

My plan is to monitor this for a few more weeks, and then ask for are referral to a GYN. I know there are a lot of questions about pain during sex and about endometriosis in particular. I have perused them, but as always I feel my question is a special special snowflake. Please point me to other questions if you feel I missed something that would be helpful.

My question is, for those of you who have endometriosis or perhaps have a partner with it, what sort of pain during sex do you have? How does it hurt? I definitely welcome any suggestions, either on the pain front, or the endometriosis/pain front? I guess I am just stressed out and want some information sooner than I can get a doctor appointment. Thanks!

Laparoscopy Surgery

octomato — Sat, 18 Oct 2008 20:12:35 -0800

What to expect from a laparoscopy? I have been diagnosed with endometriosis and on Tuesday I have my first and hopefully last laparoscopy. My doctor is sort of erratic lately, though an expert in the field. He believes he can cure stage 1 and 2. In his patients there is only a 3% chance of it coming back in these stages. He does not believe in hormone therapy, but in extracting the disease.

They pushed my appointment to this Tuesday and my mom can't come up, so my can't-see-blood-or-i-puke dad is. I think she's trying t make it on Wednesday.

OK, here's my question. What should I expect? Should I have someone stay over the first night (i live by myself)? I am in my early 20's.

Can you notice I'm a bit nervous! And did I tell you I have a severe belly button phobia....

help me strengthen my core

Koko — Mon, 17 Dec 2007 11:51:35 -0800

I need some very gentle core exercises. I've been unable to properly exercise for about a year and a half, due to late stage endometriosis and surgeries. I have been on Lupron Depot for the past 6 months following my most recent surgery; my last shot was a month ago and the pain is back almost as bad as before. I'm thinking it either didn't work, or this is a side effect, or that there's something else wrong. In any case, I want to try to build up my core muscles. In my more physically fit days, I was able to weather the pain a lot better, and I feel its because my core muscles were stronger. I feel that now, since they're so weak, bad posture and lifting and moving wrong makes things worse. I can't do crunches because my lower back and neck muscles are tensed up. I can't get a massage or physio because the last time I did, it made things a million times worse because of adhesions (endo causes things to stick together inside). I'll be seeing my doctor in 2 weeks, and there will probably be an ultrasound in a month or two, but in the meantime I'm going to have to assume that my insides are stuck together again, and be as gentle with them as possible.

Are there other, very gentle core exercises I can do (besides crunches) to build a little strength, so I'm not having to pop so many pills? Excercises I can do without equipment on my living room floor would be ideal, but I could probably get a physio ball if that was the best thing. Anything that doesn't actually involve putting pressure on the lower abdomen or lower back would be best.

Also, if anyone's had experience with Lupron where it didn't work, or caused pain in the pelvic region, I'd like to hear from you as well.

Thanks in advance!

Why do I look pregnant when I get my period?

Anonymous — Thu, 28 Jun 2007 11:06:24 -0800

Why do I look pregnant when I get my period? I get the following symptoms with my period:

severe bloating
(to the point my clothes don't fit)
constipation
(sometimes accompanied by the kinds of cramps that one gets with diarrhea but when I go, I'm too constipated for anything to happen)
back pain
(the day before and on the first day of my period, so bad I have to take a day off work)
sharp pains during bowel movements
(but only when I get my period)

I'm in my 30s and symptoms have gotten worse over the years. My period used to take up one week of my life. Now it takes me three weeks to work through all the horrible symptoms and I am tired all the time. Recently I've been cheating by taking a low dose estrogen pill, I skip the placebo because even with the pill my periods are still bad. So I go without them and have been generally fine and able to lead a normal life again.

(I got caught out this month because I missed a pill and now my period is here oh joy and its back to pain and misery)

I went to an ob/gyn a year ago and he thought the likelihood I had endometriosis was very low. I'm beginning to think about getting a second opinion.

Anyone else have these symptoms? Are these just in the normal realm of menstruation and I am just very unlucky in having them all? Can I keep going with this placebo skipping jive for much longer?

Oh please NO suggestions about getting pregnant/having kids. That is not in my life plan.

Cheers.

Where, oh where has my bits pain gone?

mostlymartha — Tue, 09 Jan 2007 22:22:12 -0800

After years and years of intense menstrual pain due to endometriosis, it has suddenly eased. Frankly, this is so marvelous, but strange, I'm becoming worried. Could something (else) be wrong with my ladybits? I started having wildly, shockingly, in bed drinking kahlua and milk, popping Advil like candy, and waiting to die menstrual pain by the time I was 13 or 14. At 19, I had the laproscopic surgery to diagnose and laser, followed by six months of temporary menopause-inducing Lupron, a year of depo-provera, and finally Yasmin birth control pills, cycled to avoid my period whenever I can afford to. All of these things had little or no effect on my pain. At that time, my endo was at a fairly early stage, a fair amount of "chocolate blisters" but little or no scar tissue or adhesion.

Now I'm 25. About four months ago, I had a really terrible period. It was worse than normal, even for me. Ever since then, they've been sort of easy. Uncomfortable, sure, but I haven't prayed for a bold of lightening to strike me down to safe the suffering in months. It's quite nice, I'm enjoying the break, but after ten years of feeling one way to suddenly feel a different way is disconcerting.

I've always read that that not all phases of endo are equally painful. Later stages with lots of adhesions can hurt less than earlier stages. I know I should go the the gyno and see what's up, but frankly, I've never had a truly helpful doctor in regards to this issue. Plus, I'm not insured right now and am relying on Planned Parenthood for my birth control, so I haven't really got a primary caretaker to consult. How worried should I be by this change of symptoms?

How Do You Handle Ovarian Problems On No Insurance?

scaryblackdeath — Sat, 23 Dec 2006 19:34:01 -0800

Girlfriend has been told by doctor to have a vaginal ultrasound. He suspects either an ovarian cyst or endometriosis. We live in Seattle; she has no health insurance. Options & advice? She's had pain for over a year. We went to a public clinic several months ago, where the doctor thought it was either an STD (that came back negative)... later we thought it was radiating back pain or something.

On a trip back east, her mom took her to her doctor for a pap smear & such... doctor came up with this guidance.

So. She's scared to death (family history of cancer), but everything I've read on this & known from other people says this is generally treatable stuff. We just have to figure out how to do it.

Is there genuine low-cost health insurance that'll help? She's had it this long... I figure we need to diagnose & treat right away. But I'm low on cash reserves, she's not working. There's gotta be a way, though.

What do we do? Is there someone we can sign up with? Who do I call?

Endometriosis?

miss tea — Tue, 14 Nov 2006 07:47:18 -0800

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.