Interview with Leanne: Her journey with Turners Syndrome
About the Interviewee: My name is Leanne, I am 36 and I live in the south east of the United Kingdom, down on the coast near Brighton. I enjoy cooking, I am a “hincher” (if you know, you know lol), and I am obsessed with Disney. No children but I do have two cats that are treated like children! I was a store manager for 12 years before I started my current role working as team performance lead for health and disability assessments.
Tell us about when you first started trying to get pregnant, what did that feel like?
I have known since I was a teenager that it would be difficult for me to get pregnant, but I also hoped I’d be that lucky one that would just fall naturally. However the older I got the more I realised that was not going to be the case. My now ex-partner and I had started the IVF process but our relationship broke down so obviously the IVF also had to stop. I think that’s partly why I took the breakup so badly.
The older I get (now that I am heading toward my 40s) it’s definitely something that I find harder to deal with, especially as I am still single after 5 years and it also has a massive impact on potential relationships as I want to be honest but also don’t want to scare them off by making it seem like I’m booking IVF next week!
You mentioned knowing it would be hard as a teenager, how did you discover your fertility issues?
When I was 15, I was diagnosed with turners syndrome, which is a chromosome disorder. Basically instead of having 45XX chromosomes I have 44XO chromosomes. It’s quite a rare disorder and only affects one in 2,000 female births (only affects females). Turners syndrome is quite a varied condition, it affects each female differently. Some of us have heart problems, kidney problems, we often are shorter in stature and need growth hormone injections - but pretty much all turner girls are infertile as we basically go through menopause before we are even born so we don’t produce eggs or have immature ovaries but again this varies for each turner girl.
That must have been so hard to learn about. Tell us a little more about how it led to your infertility treatments, what have you undergone?
I have had scans and blood tests to give me an idea of what my fertility journey will look like. I have been told they see no reason why I couldn’t carry a pregnancy as my womb looks average size but I will need egg donation and some sort of IVF to be able to get pregnant. I also learnt it’s bloody expensive!!!!! Paying for fertility treatment is something I really didn’t expect to get angry about as I am incredibly grateful to be in the UK and to have the use of the NHS, but when I saw the price it added a whole other level to my frustration at people that can get pregnant naturally as it was like, not only can you just get get pregnant, but you also don’t have to pay thousands to do it!!!!!!!
Tell us about you decision to do infertility treatments regardless of cost and what were the results.
My ex and I were in the very very early investigation stages of IVF before we split and stopped the process. But, I am very likely to need egg donor and I am considering using a donor embryo and doing IVF on my own, but this is very expensive and I’m not sure I could cope if I was to try it on my own and it was to fail without the support of a partner.
Infertility is very stressful! I can see the worry about going about it alone. How do you manage the stress?
I don’t manage it very well if I’m being honest and as I am getting older the harder it is getting. The last few years it has really taken a toll on my mental health especially now that cousins and people that I know that are a lot lot younger than me are getting pregnant. It’s a lot harder to put a brave face on, especially being single and 36 as well. I saw a quote once that really resonated with me, “What’s infertility like? It’s like going to an amusement park without a ticket and no matter how much you try and plead and beg, you can’t get one. So instead you have to stand at the gates and watch everyone laugh, play and enjoy the rides. You can hear the music, smell the cotton candy on the breeze, and see the joy all around you but you cannot partake in the fun. It’s so frustrating, it’s more than heartbreaking it’s feeling completely left out.”
That for me was it in a nutshell, seeing everyone else’s lives move on and progress and you are just stuck on your own. The conversations you can’t take part in, the events you can’t go to, the stuff you miss out on. It’s isolating and really, really lonely.
Loneliness is such a strong feeling. Who are the greatest supporters to you throughout this journey?
No one really knows how I feel. And that’s not because of them that’s, because of me and me not being honest with anyone, but that’s not because I don’t want too because I do, I really do. It’s just too bloody hard - it’s like I physically can’t talk about it.
If you could share one thing with other people going through similar experiences, what would it be?
Don’t do what I’ve done and shut yourself away - talk, talk to anyone. Friends, family, people on support groups and chat rooms. If you don’t talk it really can have a massive impact on your mental health.
Anything else you would like our readers to know about your experiences?
I have a group on Facebook for turners syndrome called “turners syndrome connections”. It’s one of the biggest turners group in the UK and I am incredibly proud of it. If you happen to have turners syndrome please look us up and join!!