I dont see Endometriosis maybe you should ask to have a lap done to rule that out. You could have Stage Iv and not even know or even a lower grade. Even a low grade endo can cause a great deal of pain with some people.
Has Endometriosis ever been mentioned to you?
Thanks for your reply.
Unfortunately the things listed there have already been ruled out.
The doctors ruled out the more common causes first-
PCOS
Ovarian cysts
Anovulation
Early menopause
Scarring or any physical abnormality
Thyroid disease
Diabetes
Then they looked at rarer stuff, but it was all ruled out-
Growths inside the brain (adrenal glands, pituitary etc.)
Various blood disorders
Various auto-immune disorders
They don't even seem to know what other tests to do. The most frustrating thing is that I can't find anyone else like me who has years amenorrhoea AND normal hormone levels.
Most people I know (and who I've talked to online) have at least one hormone level that's off, or if their sex hormones are normal they'll have abnormal thyroid levels.
At my most recent appointment I was told they'll just keep testing my hormone levels every year until one shows up abnormal and told me to expect to develop brittle bones and that I'm at higher risk of developing (but they won't give me extra screening).
I feel like they've given up on me.
It could be anything. I found this maybe read it and see what might fit with you
http://www.gynaeonline.com/amenorr.htm