Caroline's Story

I was born nearly 21 years ago and from as far back as I can remember I have visited the doctor every six months, my parents told me that my ovaries had 'gone funny' and that the hospital needed to keep an eye on me to make sure that they would not become cancerous. I just accepted this. Then when I was nine years old I was told I was going into hospital to have the ovaries removed, I didn't like the idea of going into surgery but again I just accepted it, I was kept in for around 6 days, eventually I had my ovaries removed. I saw my doctor about 6 weeks after the operation and he put me on HRT, he told me that this would help me through puberty. I was on the same medication for a very long time, and I couldn't remember how or why but I was transferred to another medication. I had no problem in telling my friends about what I went through in hospital, I told everyone that I didn't have any ovaries and that I was special, after all that's what my parents kept telling me!

When I was about 14, I went into hospital for a second time for and "exploratory examination" again this was done under anaesthetic, I was in hospital for about 4 days. When I was 16 I went into hospital for vaginoplasty to lengthen my vagina because I was told it was only about 2-3 cm long. I did not like the idea of being poked around again I was fed up with doctors and I didn't want to go, my parents informed me that it was in my best interests to go, I did and I was in for about 4-5 days and when I woke up I was so sore. I came out of hospital and I led my life as normal. All was fine until just after my 18th birthday, my mum found an article in "Good Housekeeping" magazine about a woman with AIS, her story was remarkably like mine and on the Monday she telephoned my specialist and asked him if I had AIS, his answer was yes. Until then my parents knew nothing about AIS or really why I had all of the operations when I was younger, they were told as much as I was, that my ovaries had gone funny and they needed to be removed. I can still remember the night my mum came into my bedroom and told me all about it.

I had so many questions about AIS, 'was I supposed to be a boy', cried for two days straight, I was so confused until I contacted _____ ____, the founder of the AIS Support Group, I was so relieved to find that there were people like me and that there was a meeting about two months away, I decided that I would go, I walked nervously into the meeting room and was met by _____, she introduced me to ______, another member who writes the newsletter, and ______, the US representative. They were all so nice and friendly. I sat through a talk by two doctors, we talked about AIS, and finally we talked amongst ourselves about anything and everything, I met some really great people. I attended the second day, which was for affected adults only. There was probably about 11 of us in total, we sat in a circle and I noticed that someone put tissues in the middle, "these will be needed" I was told, and we sat around and talked about how we found out, and other issues that we wanted to ask about, throughout the day I think the tissues were used up, there were tears of joy and sadness. I will honestly say I will never forget that day as long as I live, it was the first time I ever felt that I fitted in with a group of people. I walked away from that day emotionally exhausted.

I have been to two other meeting since and met some more great people. I am 20 years old now and I have just started university, I am only now totally comfortable with myself, I have even told a few of my new friends of my condition.

I am so happy and grateful to the support group; I can never forget the feeling of joy when I found out about the group.

You are my second family; you will never know how much you mean to me.