Today I’ll be talking about the part of Turner Syndrome that has probably affected me, at least emotionally, the most: Premature Ovarian Failure, subsequent HRT (Hormone Replacement Therapy), and its impact on Psychosocial Development in girls with Turner Syndrome.
As I said in my last post, Turner Syndrome results in either the complete or partial deletion of all or part of the second sex chromosome and this often leads to Premature Ovarian Failure depending on the person’s karyotype. Because I have the classic karyotype, 45X0, Premature Ovarian Failure was kind of a given and I was started on estrogen replacement at the age of 11 as well as progesterone later on in order to promote proper development of my secondary sex characteristics and prevent complications of early menopause. Unfortunately I don’t think my endocrinologist was as diligent as he should have been at making sure my hormones were being balanced properly and therefore I didn’t see as much development as I maybe should have physically but also emotionally. Part of what happens when we go through puberty is the development of certain parts of our brain. Because girls with TS don’t go through puberty on their own, this can cause a variety of psychosocial issues such as problems reading/interpreting facial expressions/cues and heightened emotional sensitivity. HRT can help lessen the severity of these issues but not every girl is going to respond the same way. In fact, a wrong dosage or type of HRT can make the emotional sensitivity worse. These issues really came to light for me when I went away to Bible School. This was my first time living away from home with a group of people other than my family, let alone girls my own age. I was very self-conscious of my under developed body and the social “quirks” that caused people to treat me differently. I was not good at emotionally handling the feeling of being different or left out, often over reacting and misinterpreting peoples actions, and I regret the fact that this pushed people away. I’ve matured in the years since and learned ways to deal with these challenges but it’s definitely still a work in progress and I often wonder if better monitoring of my hormones at the time of puberty would have helped.
In more recent years, the way that HRT has affected my self-image has changed. Although I knew that I would have to take HRT to go through puberty and that TS meant I was infertile, I don’t think the reality of this fully hit me until I saw my peers start to get married and have children. Knowing that these things haven’t happened for me yet and that one isn’t even possible for me, as well as the fact that I have to take pills to even experience normal female functions, I’ve often questioned whether I am enough of a woman and hence as valued as other women. I’m sure that many other girls with TS can relate and I wish that there was more understanding and discussion around this with our doctors. This is also why I am so grateful to have grown up in a Christian home where I was raised to find my worth in who God says I am rather than the world.
Another side of HRT that I have personally been affected by is the risk of gut issues, cancer and other health complications that it presents. It is now known that a higher rate of certain autoimmune conditions such as IBD exists among girls with TS due to problems with immunomodulation and long term use of oral contraception. During the years when I started HRT, there were not a lot of options given to me or my parents and the risks of long-term oral contraception were never discussed. In fact, we never knew there was a link between oral contraception use and Crohn’s or a connection between Turner Syndrome and Crohn’s until after I was diagnosed. When I was growing up the only GI issue I was ever checked for in regards to Turner Syndrome was Celiac. Even after I started having stomach issues and brought it up with my endocrinologist at the time, once Celiac was ruled out, she never did any further testing despite the fact that I had been consistently losing weight and my bloodwork showed signs of malnutrition. Needless to say, I switched endocrinologists shortly after my Crohn’s diagnosis.
The idea of being on long term birth control has never sat right with me, especially after learning about the risks of cancer and the impact that it can have on the gut microbiome. Right now, my Crohn’s is in remission and I am hoping to keep it that way. After doing more research on the subject of HRT and Turner Syndrome, I am hoping, with the consent of my endocrinologist, to move to a more bioidentical, natural form such as an estrogen patch and progesterone supplements. If there is anything that my journey with Crohn’s has taught me, it is that advocating for yourself as a patient is so important. To other women and girls with TS who are reading this, my parting piece of advice is this: Don’t be afraid to speak up for yourself if you feel something isn’t right with your current treatment plan and don’t settle until you find something that gives you the best quality of life because you are worth fighting for.