I just recently stumbled along this post and was hoping we could open up a discussion. I am really curious as to what age others were when the whole endo thing started.
I was first diagnosed at 23 in 2015 after being in horrible pain half my life. My doctor wanted to avoid a laparoscopy after he was 99% sure I had endometriosis and start Lupron right away. My insurance refused to pay for anything without a “proper diagnosis” and I went through the laparoscopy where it was discovered that I had very advanced endometriosis with leisons spread pretty much everywhere possible. My right ovary is completely blacked with lesions and no longer functioning while my left ovary is still functioning but not in great condition.
I Started 6 months of monthly lupron injections in September 2015 and it has been the worst experience in my life. The hot flashes… oh man. They were TERRIBLE and unfortunately very consistent. I would cry myself to sleep every night due to a combination of pain/depression/hot flashes. I was finishing my last semester in college because I had already postponed it and I didn’t want to keep putting school off. It was incredibly hard just to have a healthy mindset. I was weak all the time. Just weak. And now, exactly a year later I still feel some of those effects. I also had the opposite problem a lot of people have and I ended up losing a lot of weight, but this was mostly due to my lack of apetite and frequent nausea. I started to develop memory problems that have not gone away. I felt weak for unexplainable reasons. For me, the 6 months of Lupron were just incredibly painful.
I just recently turned 24 and am skipping periods with the help of birth control. When I first started my doctor said the whole reason I was going to go through this was to give me more time to be mentally ready to have a baby. The surgery and the treatment would not cure me. It would just buy me some time.
I’ve read a lot of forums and I know that many woman end up having a hysterectomy, which is the reason why I asked for the initial age of diagnosis. Most of the stories I read are about women who have had kids and therefore a hysterectomy is not a huge life changer. I don’t have any kids. I feel like I am still to young at this stage in my life to start a family. But I’m terrified of the fact that unless I get pregnant in the very near future I will be infertile. I don’t want to lose my chance now and deeply regret it 10 years from now.
Is there anyone else in a similar situation? What do I do now? This is a question that just consumes me most of the time. I have a long term boyfriend and we have talked about the possibility that I may never have children if i miss my window of opportunity, but it is just too much pressure for me to handle. it seems like an incredibly huge decision. I went through the diagnosis and the treatment and I’m left wondering… now what?