So that you all know this post contains medical information about me. Its kind of girly and might be a bit too personal for some. So if womanly topics make you uncomfortable then you can leave now and I won't blame you at all. Also, please know now that I am not writing this to gain sympathy or pity. I simply want to get out in writing my experiences so that I can remember them and explain why I might be a little more emotional than some but if you are interested in knowing some of my history then please read on and enjoy.
The story begins about 5 years ago when I was 17. At this age most girls have gone through puberty and have been experiencing their cycle for a few years. I however had not gone through puberty and had not started my period or had any signs or indications that I was going to any time soon. I had expressed my concerns to my parents who had expressed them to my pediatrician who felt that I was just a late bloomer. However, in November of 2007 my doctor finally agreed that something might be wrong (you know maybe although he didn't really think so) and gave us the name of a pediatric endocrinologist at MUSC.
I will never forget that first doctor's visit. I was so scared and nervous. You know that feeling when you know something bad is going to happen and you almost know what is going to happen but you think that if you don't deal with it then maybe it'll just go away? That's how I felt on the way to the hospital. I knew what the doctor was going to say and I really didn't want to hear it. I felt like if someone else confirmed what I already felt then that would make it true and I didn't know if I could handle that. Basically, if no one else said it then I could just tell myself that I was wrong.
Anyway, my mom and I met with the endocrinologist. I explained that I hadn't experienced puberty or any of the signs of it. She was very concerned and started naming all of the possible things that could be wrong with me. A few of the things she mentioned were: brain tumor (always fun to hear before any tests of any kind are done), Turner syndrome, hypothyroidism and some other things. Remember, at this point no tests have been done but she is making it sound like it has to be something that she has just named. At this point I was freaking out so much that I had to excuse myself to go cry in the bathroom.
The doctor finally ordered blood tests to check my hormone levels, thyroid and pituitary problems as well as any chromosome issues that I might have. She also had me go see an X-ray technician to find out my bone age to see if my bones were maturing normally. When the results came back we found out that my bone growth was close to that of a 13 year old and that my hormone levels were extremely low (almost to the point of not being there). The tests also showed that my thyroid was normal, their were no chromosomal problems that they could find and I didn't have Turner Syndrome (YAY). However all of that meant that they didn't know what was wrong....always comforting to hear. So I started freaking out again! So many questions went through my mind....Am I broken? Can this be fixed and if it can then how? If I can't go through puberty then can I ever have children or is this the end of that?
We went back to the doctor to discuss what they knew for a fact and what they were guessing the problem was. Since I didn't have hypothyroidism, a tumor, turner sydrome or anything life threatening the only thing left was central hypogonadism aka delayed puberty. (At this point I'm thinking...yeah I knew that much now tell me how to fix it...so happy my parents paid to find out that little gem of information). What I wanted to know was why and the doctor really only had one theory. She said that something was wrong with my pituitary gland that was causing it not to function properly. Your pituitary gland is what sends the signal to your ovaries to release estrogen into your body. For some reason this signal was not being sent so my body wasn't making estrogen.
I had an MRI done on my pituitary gland. People told me before I went in that it was going to be terrible, loud, and uncomfortable experience. Honestly, I had earplugs for the noise, a blindfold so I wouldn't feel claustrophobic in the tube, and a blanket to keep me warm. With the earplugs I found the low grumble to be soothing and I was warm so I basically just about fell asleep. The results showed that my pituitary gland was slightly smaller than it should be which meant it was most likely the problem.
I was started on Premarin right away. This was a straight estrogen pill. They started me out on the lowest dose (.3) and gradually raised it over the next couple of years. They said that they would increase the dose every few months until my period started. Once my cycle began I would stop taking the Premarin and start taking Provera/birth control to regulate the period.
So over the next year and a half or so I went through puberty and experienced all of the lovely things that come with that. I have to say though the worst part of this experience was that I was going to BYU-Idaho. Not only was I going through all of these changes but I would be going through most of them by myself. The majority of girls have a mother, sister or at least friends to go through puberty with and I wasn't going to have any of that with me in Idaho (at least not right away and I wasn't comfortable telling anyone).
Fast forward to October 2009. Its been almost 2 years since my first doctor's appt. I had since been to see Dr. R who was an adult endocrinologist. She had come to the same conclusion as the previous doctor so I was still on the highest dose of Premarin. My estrogen and other hormone levels were increasing like they should be. Then towards the end of October 2009 I finally started my period (YAY?). I started the provera immediately and I stayed on the provera until February 2011.
In Feb. 2011 I went to my first gynecologist appt. I had been feeling sick from the provera for a while. I was tired a lot, nauseous, and just kind of a general yucky feeling. I explained my problems to her and she suggested that I go off the provera and see if my period continued without help. Honestly, I know that I shouldn't have done it. I knew she was wrong and that going off would be a bad decision but I was so tired of how I'd been feeling and I figured if I can't get pregnant and start my family on the birth control or off of it then why put myself through it? She did write me a prescription for the provera so I could get back on but their were some issues with getting it refilled and since I was no longer a patient at MUSC I wasn't able to refill it.
After about 3 months of seeing if anything was going to happen and then nothing changing, I started getting more and more frustrated and depressed. I wanted to go see a reproductive endocrinologist to discuss our options for having a family but the closest one was in Salt Lake City which was too far away so we decided to wait til we moved which was only a year away. Even though I was busy, I was also living in Rexburg- pregnant capital of the world. People were constantly asking Mike and I when we were going to have children. We politely responded "we will have children whenever the Lord is ready to send them to us". Not everyone was nice and understanding though. A lot of people assumed that since it was easy for them to get pregnant and have healthy children that it must be easy for everyone so if we didn't have children it must be because we didn't want them. Some people accused me of not wanting to lose my figure and of course there was the occasional reminder that "having children is a commandment from God so you better get on it". That last one made me want to scream and tear their hair out. I had a pretty rough time for most of 2011 with unfortunately the holidays being the most difficult. I was starting to become frustrated with myself and the situation. It wasn't that I wanted to be pregnant right then, I just wanted to know what was wrong with me so that I could work on fixing it. I am a believer that patience does not mean sitting and waiting for something to happen. You need to be actively working towards a goal. I felt like Mike and I needed answers and we weren't getting any.
Luckily, since moving Mike and I have gone to get some answers and some have been unexpected and some were exactly what I thought they would be. I'm grateful for those people who weren't judgmental of us and for those who listened to me rant when I needed it. So that's the back story, to know whats happening currently please read the next post.
Come on you guys know the suspense is killing you :)
No comments:
Post a Comment