The other night I was looking at some of the searches people had done that landed them on my little site here. I came across a question and I immediately felt my heart drop and knew I had to answer.
The question was, "i have turners syndrome and i got my period with hormone replacement will i be able to get pregnant"
I know how this girl feels. I know, because I was her a number of years ago.
I was a young girl around the age of 8 when I was diagnosed with Turner's Syndrome. I was told I would be abnormally short, and that I would most likely be unable to have children. I would need hormone replacement in my teenage years in order to "develop secondary sexual characteristics". How well do you think an 8 year old girl can process that? Yeah, let me tell you, that does not make much sense to such a young girl.
After that day, not one doctor I had talked to had ever really talked to me about fertility. In fact, nobody at all really talked to me about fertility, not even my family. I consider myself a fairly intelligent woman. I was in the Honor Society in High School, did quite well in college, and always aced any biology or genetics classes. Yet, I still questioned. I wanted it so bad I convinced myself that maybe it was still possible for me to have children. Maybe IVF? I already knew the answer, yet I sought out a reproductive endocrinologist to tell me the answer to the question above out loud. THEN it would be real.
If you get your period with hormone replacement, that is good. That's what's supposed to happen, anyway. I no longer take the hormones and therefore no longer get my period (yay!). Unfortunately, most women with Turner's Syndrome are infertile because they have severly underdeveloped ovaries. They don't function properly and do not produce viable eggs. You get your period which sheds the uteran lining (and helps prevent cancer?) but, sadly, it does not mean you are able to conceive. :( From one Turner Syndrome woman to another... I am truly sorry. I also encourage you to contact a reproductive endocrinologist to get a professional medical opinion, and to talk about possible options for you.
Also, please feel free to contact me if you have more questions or just want to talk with someone who at least has some idea of what you are going through. I wish you all the best.
I know where you're coming from. I'm in the perhaps unique position of being a resident in Internal Medicine as well as a 28 y/o girl with Turners Syndrome. Even as someone in the medical field, I couldn't help but hope. I hoped so much I went off my OCP for six weeks and had innumerable hot flushes each day and underwent a transvaginal ultrasound to document my lack of functional ovaries. Well, actually also the complete lack of one ovary. (Whoever stole it could kindly return it at any time.)
My wonderful husband and I have been in the baby-seeking process for two years. It turns out many reproductive endocrinologists no longer offer IVF to women with Turners Syndrome due to the risk of aortic dissection. This risk is significant, and unpredictable. It can even affect women with completely normal pre-conception evaluations. Thus the new guidelines advise against Turners Syndrome girls carrying a pregnancy at all.
Our personal story is about gestational surrogacy as my husband isn't ready to turn to adoption yet. We're currently preparing for our second attempt. The first was happiness turned disaster as we got "pregnant" with twins but lost both, one at a time. We are trying to stay positive -- there are four frozen embryos left and we are not giving up yet!
My advice to any readers out there with Turners Syndrome: If you are contemplating pregnancy, PLEASE speak to a physician and consider doing some research. Surrogacy is very complex, expensive and illegal in some states. Adoption is also complex. Please, do NOT even think about pregnancy without getting a detailed cardiac workup, including imaging studies. And remember it doesn't matter how you reach motherhood -- it's about raising the child.
Hi Mim. Man, the internet is an amazing place. One day I write up a post and the next I'm connected to someone else who is close to my age (I'm 33) and has the same genetic disorder and some of the same struggles that I do. I am very glad you found my site and decided to leave a comment!
I got pretty much the same information you just mentioned in your post from my reproductive endocrinologist. I was actually somewhat surprised when she told me that I was extremely high risk to carry a child (she didn't come right out and say that she wouldn't do it, but it was highly discouraged). She didn't even ask about any possible heart conditions that are common with Turner's. I luckily have no major structural abnormalities. I didn't realize before that even if your heart appears fine and you are otherwise healthy, you are still at high risk. To be honest I didn't fully understand it until you posted your comment. She never told me the specific risk of aortic dissection. At the time I wasn't immediately planning to start a family so I didn't press the issue.
I actually have both of my ovaries but neither one functions and one is so small it's often hard to find via ultrasound.
I am very sorry to hear about your loss. I am sure some people might not understand how much of a loss it is, but I think I can understand more than some/most. I wish you tons and tons of luck in your future attempts and I hope you keep me posted on how you make out!
If you care to share more details (height, when you were diagnosed, struggles, successes, basically your personal story/experience with Turner's) feel free to email me. I've posted mine on a separate page linked to on the bar on the right but would love to chat if you are interested.
Hi Erin! I emailed you at your turnerssyndrome email. Feel free to be in touch! - Mim
I got it! Your story is very interesting, and it seems we have quite a bit in common. I'll be writing you back soon!