Written by Cassidy Hooper, TSF volunteer Twitter Chat Facilitator
In anticipation of Women’s Health Month this month, we had a wonderful Twitter discussion in April about Turner Syndrome and women’s health. We talked about different women’s experiences with Turner Syndrome and their health. It is important that we highlight the special needs of girls and women with Turner Syndrome to ensure they receive the unique care they need.
Make sure to join us for our next Twitter chat on May 27th at 8 p.m. EDT, in which we will focus on relationships and Turner Syndrome.
What a wonderful chat about Turner Syndrome and women’s health! It is so nice learning about the perspectives and experiences of girls and women with Turner Syndrome. Every experience is different when it comes Turner Syndrome and overall health; every girl’s and woman’s journey is unique. Here are some of the highlights:
Q1: Did You Experience Spontaneous Puberty? Premature Menopause?
“I think the fact that I wasn’t starting puberty or growing taller on my own was what led (to my) being tested for Turner Syndrome…I started menopause at like 30 or 35, I guess.”
“I personally did not experience that. I had to take medication to go through puberty.”
Q2: Did you take estrogen replacement therapy (ERT)? From what age?
“Yes, and I am currently. I began (ERT) at age 13 or so. When I first started on the medication, I had a bit of trouble…I was on the same medication for a long time but recently changed (it) due to cardiovascular side effects.”
“I think I took a combination of estrogen and progesterone from 12/15 until about 34, when I had my hysterectomy.”
Q3: What was ERT like? Did you see any results or experience any side effects?
“I imagine it wasn’t much different than puberty was. The only time I had a bad side effect was the bad cramps I got the first couple of months when I changed HRT meds. Once I was older, I probably dealt better with it than (when I was) younger.”
“When I first started, I did have extremely heavy periods. Recently, I had a medication change due to cardiovascular side effects of (the) birth control pill.”
Q4: What has been the most difficult part about the common reality of infertility in women with Turner Syndrome?
“Just knowing that I can’t have children. It’s tough at times to know that I can’t give my husband children, but we’re both fine with it!”
“I would say being a newlywed, it’s dealing with that reality and trying to manage my husband’s expectations. We do hope to adopt eventually. I feel very fortunate with how supportive (he) is.”
Q5: Have you explored family planning options like adoption, IVF, or surrogacy?
“Adoption has been an option for a LONG time. My parents had foster children when I was little. We’ve been supportive ever since then. My sister and her husband adopted two children, so I’ve paid attention and taken notes!”
“Yes, my husband and I plan to adopt in the future. My doctor explained all the options to me, and given my health, adoption is the best option for us.”
Q6: How have you coped with infertility? Have you opened up to others about it?
“I think the more people I told and talked to about my (Turner Syndrome) and how it meant infertility for me, the easier it got, and the more I got used to the thought. This was mostly once I started dating. It has only been recently that I have begun to open up about my (Turner Syndrome) and infertility. I think opening up has definitely helped me cope.”
Q7: What would tell others who experience infertility?
“I would say to other other women who experience infertility that they are not alone…and would encourage them to speak to their doctor and find out what the options could be. I know it’s hard, but it’s best to address these things in a straightforward way.”
“Don’t let it define you. Don’t let it consume you. There are ways to beat it. Find your way!”
Q8: What should more people know about women’s health and infertility as they relate to Turner Syndrome?
“A misconception about birth control is that it is only taken to prevent pregnancy; however, it can also be taken for…medical reasons. I wouldn’t have gone through puberty with(out) (hormone replacement therapy). People should know that everyone has to make the best healthcare choices for themselves.”
As you can tell from the comments above, each girl or woman with Turner Syndrome has a different experience when it comes to health issues and infertility. We all have different experiences and different perspectives. It was so great to get to know these women’s stories, how they have coped with infertility, and their advice for others struggling with infertility. Join us for a Twitter chat on the foutth Wednesday of every month. Don’t forget to use the hashtag #turnersyndromechat.
We also have many resources available to help you learn about family planning options: