I found some other people with FX-POI

IBackBevo · March 2013

I joined a Fragile x group on facebook that had over a thousand members from around the world and asked about FX-POI. I think I got the best "picture" of my situation yet from talking to these laides, albeit still not altogether clear because every situation was different. However, soooo many of these ladies "experiences" with their hormonal issues/symptoms were alot like mine. The number one complaint by all of them were the night sweats and mood swings. And that has been my main complaint since I was in my early 20's...long before I ever knew I had a premutation. Alot of them had symptoms alot like what I have.

A couple had their menses stop in their 20's and another in her mid-30's. Others reported it was like an on-off menopause that seemed to drag on and on. Most women had their menses stop in their late 30's/early 40's.

Unfortunately, the one thing I did not get a clear picture on was fertility. I can draw the conclusion that the reason that no one was concerned about their fertility was that that these ladies did not find out they had "FX-POI" until after they had a child with Fragile X Syndrome. And, obviously, I didn't want to ask a large group of women with disabled children who were disabled by virtue of an inherited/genetic condition if they had tried to have more children.

Still, all-in-all, it gave me a little more insight into the situation. Unfortunately, it still tells me that there really isn't anyway to know when my biological clock will run out.