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13 years of "suspected" endometriosis.

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Old 01-10-2012, 05:04 AM   #1
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13 years of "suspected" endometriosis.

I've had quite bad periods since I started at 12 ( 25 now ). My family isn't exactly rich, and can't afford insurance or surgery of any kind. I've had 3 ultrasounds, blood tests, x-rays, pelvic exams, everything but a laparoscopy. My family has a long history of female reproductive issues, ranging from endo to cysts ( my mother ) to cancer. I'm 5'3", 104~lb, very petite bone structure.

I've tried basically all types of oral birth control, and now I've started Seasonale ( 2 weeks ago ) to see if that helps. My last BC was Errin ( norethindrone ), and it did not help. My main goals are to shorten the length and severity, and the intensity of my cramps. My periods got gradually longer until about 8 months ago, and then they somewhat changed. I had pretty regular periods that lasted 7~10 days, and now they're 9~12. I have 'old blood' for 3~5 days, then a normal period, then more 'old blood'. I told my doctor about it and she didn't seem that concerned. I'm worried that this means that it's "building up" in my uterus, and could cause more problems if it goes on. Is this normal at all?

Typically, I have cramps for 1~2 days before my period ( before the old blood ), then all the way through until 1~2 days after it's all done. I got a prescription for hydrocodone 5mg at 19 because of the severity of my cramps. I usually take 1~4 each day of my period, and use things like a heat pad to help. I thankfully have only a small amount of bloating / water retention, migraines are under control ( chronic, Lamictal ), though my breasts are very tender and go up a cup size ( sure, I'd love a B cup, but not when they hurt like all hell ).

I had extremely bad pain during and after intercourse, and any time I have an orgasm. I just about feel like a virgin every time, that's how intense it was - and when I was, it was so painful that I blacked out. My partner wasn't abnormally large or anything ( 5.5~ ), but even 2 fingers would cause pain. I haven't had a UTI, but I've had pain and trouble urinating after sex ( I always void afterwards ), and a couple times I had a bit of incontinence.

A couple other symptoms that I'm sure are related - I get sick very often, whenever anyone around me has caught anything or is carrying anything. I recently started having upper abdominal pain, in addition to the lower. Before, everything from my navel to my knees was in agony ( problems standing, blacking out from the pain, sleep is screwed because I sleep when I can ), and now I have increasingly frequent pain up around the general area of my stomach level. Could this be endo spreading that far, or just wrecking havoc on my body? I'm on omeprazole for 2 weeks to see if it helps, but so far there's been no luck.

I was worried about pregnancy, and still somewhat am. I last had sex on December 7, 3 days after the end of a period, then had a very unusually short and light period starting December 29 ( right on time ). I had a serum ( blood ) pregnancy test on January 3 which was negative, but I've had some breast tenderness, what feels like bloating, and nausea - I have not ever had nausea during my periods. My doctor thinks it's connected to the upper abdominal pain ( that started in October ). Should I still be worried about pregnancy? I've never been pregnant, so I don't know what my own body's signs are.

Not sure if it's related, but I was low on vitamin D said the blood test. I've never been low on any vitamins or anything else, especially iron ( anemia was an early possible diagnosis before endometriosis ).

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Old 01-13-2012, 10:49 PM   #2
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Re: 13 years of "suspected" endometriosis.

Anyone have any suggestions?

Old 02-18-2012, 10:45 PM   #3
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Re: 13 years of "suspected" endometriosis.


Don't know that I can help, but your situation sounds exactly like my wife's. She is forty and we have three kids. She also has very painful periods and "Mittelschmerz". Due to the fact that for years her NP would not prescribe pain pills, she finally developed a non H-Pylori ulcer from ibuprofen use. The ulcer just ruptured, and she had to have emergancy surgery. Then, because the hospital gave her a narcotic scrip for post-op pain, her PC said it "violated" the contract she had for a small amount of vicodin that she had to take. Now, she is left with no pain relief and is in tears. I don't know what to do for her. I have started wondering about "alternative" pain treatments (fill in the blank) but I don't know if that works for that kind of pain, as neither of us has any experience with lava lamps....if you get my meaning...:-)

Regards, Brenden.

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