endometriosis - anyone here with knowledge or experiences to share?

[chocolate-chip chooky]

One of my daughters has a few vague symptoms, but nothing quite specific enough or troubling enough to take us to the Dr just yet. Endometriosis is rattling around in my head as a possibility.

I've googled of course, but I'm hoping some of you here can share your symptoms and experiences? 

And what's involved in a diagnosis?

Thank you.

[MercyA]

I've had moderate to severe endo since I was a teen. My first symptom was horrible cramping during my period, bad enough to send me home from school. The cramps weren't bad every month, though, and were manageable with ibuprofen.

As I entered my mid-to late 20's, my cramps were severe enough to incapacitate me for most of one day a month and sometimes make me vomit. It was common for me to take 14 or so ibuprofen a day on the worst day. Sometimes I had a sensation of something being painfully twisted inside me near the area of my ovaries if I'd move certain ways--probably ovarian cysts, later confirmed by ultrasound. I had one the size of a golf ball--it thankfully went away by itself without surgery.

I had the most reduction in pain by adopting an almost-vegan diet. I didn't become an ovo-vegetarian for health reasons, but the improvement was nothing short of miraculous. Red meat and dairy in particular affect both hormones and inflammation.

I discovered I was infertile in my 30's. My gyn suspected endo, but it can only be definitively confirmed with endoscopy. It can't be seen with ultrasound or a pelvic exam. I had endoscopic surgery for diagnosis and treatment after several years of trying for a baby. I didn't notice a huge improvement in symptoms, and I didn't get pregnant in the first couple years following surgery.

Happily, I was later unexpectedly blessed with my daughter. Following pregnancy the endo symptoms were the best they had been in years. They've slowly returned, especially heavy bleeding. The cramping is never as bad as it was before pregnancy.

Best to your daughter! Let me know if you have questions.

Edited January 26, 2019 by MercyA

[Farrar]

I feel like I have a very typical endo story. Severe cramps as a teen, treated with birth control pills but only saw moderate improvement. Got steadily worse. Mine was also uneven, but it was usually every other time it would be really bad. Not long before I wanted to start trying for a kid, I was advised to have laproscopy to diagnose, then I was treated with the injection that makes you basically go into menopause. Not longer after that whole deal, I got pregnant. Since then, I can say my period has been - not always fun, but nothing like it was.

I have extremely mixed feelings about having had the laproscopy. The recovery was much longer than I had been "sold" basically, and it messed up my stomach muscles. I understand they don't do this so much anymore, but if it comes up, I would say look for another way.

[Momto6inIN]

My Dr suspected endo when I was a teen because of severe cramping and heavy irregular periods, so he did a laparoscopy (this was 1990 I believe). Didn't find endo, but did find ovarian cycts which he said would twist and cause the pain I experienced. Put me on bcp and I stayed on those for 7 years til after we got married. After that I didn't have a period for 18 months and new Dr said I would likely need fertility treatments to conceive. But that didn't end up being the case, just heavy and irregular periods for the rest of my adulthood.

[Ellie]

My younger dd's uterus tried to kill her every month from the time she was 16. She saw so many doctors. Took different kinds of bc pills, had to change the brand frequently, spent many days in a fetal position in the bathroom. Almost three years ago she had a hysterectomy, because enough is enough. She has no children. 😞

[mumto2]

As others have said severe cramping from the start.  I had a prescription for alieve (the blue kind, I get them mixed up with Advil) and spent a couple of days curled up with a heating pad.  Really heavy periods from the start.  I went on bc pills and the pain went down to manageable.  I could sit at my desk,  I actually saved brainless work for the days my brain would be foggy from painkillers.  I don’t even know how many laparoscopic surgeries I have had.  They weren’t fun but I wouldn’t say they were dreadful, for me as expected.  I was never willing to do the fake menopause ........ I was advised to Breast Feed for a really long time. 

[chocolate-chip chooky]

Thanks folks. I appreciate your stories and advice. I'll reply in full when I have a bit more time. 

Some of what you're saying has me nodding along, but not everything. 

I really appreciate your help.

[chocolate-chip chooky]

What about ovulation? Pain/discomfort, spotting?

And do you experience pain or discomfort in other areas of your abdomen, other than the uterus?

It's so hard to know what's just rough periods and when it's something more. My daughter's hormones have always been a bit wonky, and her symptoms are vague and inconsistent.

[Lady Florida.]

I had pretty severe endometriosis most of my life and it made my periods almost unbearable. I had some pain during ovulation but it was at its worst during menstruation. Still, I didn't do anything about it until I was trying to conceive. At that point (1996) I had laparoscopic surgery. The doctor said I had quite a bit of scar tissue and she was surprised I endured the pain for so many years. My recovery was pretty quick and uneventful. 

The doctor warned me that it could come back, that surgery isn't always the end of it. If it returned it was so mild that I'm unaware of it.

[mumto2]

Your question prompted me to think about this for awhile.  

Pain during ovulation I think I always had but it was comparatively mild.....I do feel the need to say my pain tolerance is really high (doctors have commented on my lack of pain complaints compared to what they see both with the endo and other injury’s).  One thing that I have always had were shorter cycles....21 to 24 days when not on BC.  For several months around 20 I had my period every 10 to 14 days,  it was a normal period.  The doctor considered it to be stress related and I was given a list of coping strategies,  things did improve????? It was way before the endometriosis diagnosis which wasn’t made until I was 30 and suffering from infertility.  A laparoscopy was done to see if there was a reason....there was. A couple more years went by with a variety of treatments and specialists before my endometriosis was rated a 4 on the 5 point scale ( lucky me I missed the 5 by some odd qualifier for his study) by a then leading researcher.  I do carry the gene he felt was the cause and pray I didn’t pass it on.  I have a whole lot of bowel involvement with significant scar tissue that could not be corrected......this scar tissue means  ovulation hurt a whole lot as I aged.  Pregnancy and breast feeding helped significantly for 8 or 9 years........

[MercyA]

10 hours ago, chocolate-chip chooky said:

What about ovulation? Pain/discomfort, spotting?

And do you experience pain or discomfort in other areas of your abdomen, other than the uterus?

It's so hard to know what's just rough periods and when it's something more. My daughter's hormones have always been a bit wonky, and her symptoms are vague and inconsistent.

Yes, ovulation was almost always very painful for me before I had a child--a very sharp, stabbing, knife-like pain.

Yes, I had other discomfort in my abdomen. Sometimes it felt like an upset stomach or intestinal cramping, I think.