Hayley's Story

[Received Jan 2007]

My name is Hayley and I am 20, and I found out that I had AIS when I was 19.

When I turned 19 and still no signs of a period, I visited the doctors and was soon transferred to the hospital due to some odd blood tests. The doctor there was very keen to put the problem down to slow development due to the lack of pubic hair and small breasts, however he did carry out more tests which took over 6 months and even made me depressed at one stage as I knew something was wrong and I was frightened.

However, during October 2005 the doctor gave me my results whilst reading aloud from the internet. He used the term 'testicular feminisation' which has such a stigma attached to it and I couldn’t speak. He then informed me that I should look up the rest of the diagnosis on the internet using 'Google' which at the time wasn’t the most comforting thing to hear from a doctor.

The next few days were the hardest for me and I can remember feeling sick and heaving every time I thought about it or every time I touched my stomach. On one particular night, my friends had to sit with me as I fell asleep because I felt so broken! The support that they gave me allowed me to find the strength to carry on with my course at university and not take time off or even quit all together.

I wasn’t afraid to tell my family, just like I wasn’t afraid to tell my close friends as it just seemed natural, and that decision to tell them was the best thing that I ever did. My friends both at university and at home were so supportive of me and it made dealing with it all so much easier. I did find it hard still as I’ve always dreamed of having children at some stage in my life, however I do feel blessed that I will get the chance to adopt in the future and give my love and support to a child that needs it.

There was also still the problem about relationships in the future and I decided to go ahead with an Orchidectomy as advised by a different doctor who hadn’t come across the diagnosis before. I had my Orchidectomy last summer during my summer break from university and it has helped me feel more like my old self to a certain extent. However my stay in the hospital wasn’t that pleasant as I was on a urology ward with lots of people much older than myself and in there for reasons so different to mine. That was hard for me as I felt so different and still partly ashamed.

After the surgery, it was over 4 months before I had any access to HRT treatment and I’m still undergoing the side effects at the moment and trying to find the correct dose for me. I am also still undergoing more tests but hey, what’s a few more?

It has been very rocky road over the past 20 months and even though I know there is more to come, I am now at a place where I feel I can live with it all and it won’t play on my mind so much as I feel almost normal again. I am still at university in my final year and looking towards a 2:1 class degree and I feel a sense of achievement having stuck at it through everything!

I guess I just want to say how fantastic friends can be in these situations and I would encourage others in the same position to share what they have gone through with someone else. For me there was one friend in particular and we weren’t even that close, yet she was with me when I got my results and she was there for me from when I went for my tests until today. I owe her my sanity and my sense of achievement and much, much more.

I also want to say what a support the website was to me during the first few months of my diagnosis. It told me more than any doctor has and has helped me to understand my condition. I still don’t pretend to know about it all, as there is so much, but in time I’m sure I will thanks to the support group.

I am now almost 21 and I am Happy. A year ago I didn’t think I could be. Thank you!

---