Helen's Story

[Received Oct 2003]

A 32 year-old woman wrote (end May 2003):

I read an article in Now magazine^{Ref 1} in connection with the condition AIS [and] it was after I visited the AIS web site that I got this address. I was diagnosed in 1986 with testicular formation [feminisation] syndrome [and] up on till I read that article I never seen or heard of any one else who had this condition. I would be very pleassed if you could send me a subscription application form. I would be very pleased if I could meet people who know and understand this condition.

Ref 1: We're Proud to be Intersex by Beverly Kemp in Now magazine (30 April 2003). Features the stories of two AISSG UK members.

She wrote again (end Oct 2003) after joining the UK group:

I am sorry it has taken me so long to write and thank you for the newsletters (nos. 21 and 22) and book^{Ref 2} which I found very interesting. It has taken me a long time to accept this condition and in reading the newsletter and book it has helped me in many ways to really understand the condition. I find it very difficult to talk about this condition [and] in writing this letter it will be the first time I have ever spoke about this to anybody other than to my sister, as I thought no one would understand.

Ref 2: Caroline Hawkridge's HRT book that covers long-term HRT in young women with conditions like AIS - see Literature/Subscriptions page on this site.

When I was diagnosed in 1986 at the age of 17 it was my mother who spoke to the doctors [and] to this day I have never spoke to my mother about this condition. To be honest I feel she still feels very guilty but I have never blamed her in any way, nor would I. I was told that my ovaries didn't develop properly and I need to have them removed and I would not be able to have children. I was in total shock. But when I turned 18, I was told that I had testicular formation [feminisation] syndrome and the ovaries I thought I had, were testes, and I would need to have surgery to create a vagina as it didn't develop properly. The only way I can explain how I felt was that I was numb and I didn't go out for weeks. I could not believe this had happened to me and I cried until I could not cry anymore. Even writing this letter I have cried many times, as all those feelings and emotions I had years ago came back, but this time I felt I was not on my own.

The doctor was really kind and explained everything to me and I always knew what was going to happen, as before an operation I would be taken to a room and everything would be explained. After the operations I was told how everything went and any questions I had were always answered. I attended the hospital for a couple of years just for check-ups and I always asked if they had seen any other women in the clinic with AIS and I was always told "No", so up on till I read the article in the magazine, I had never seen or heard of any one with AIS, then when I read the newsletter [ALIAS] it was really great to know that there are many other women with this condition. I can never thank you enough for writing the newsletter, it has really helped me in many ways to understand my condition. I am sorry I don't have access to my own e-mail address so I would be grateful if you could send me any new information. Also I would like to meet other women with AIS and I hope to be able to attend one of the meetings one day. Thank you again for your help.

PS: I hope this letter makes sense as I am very nervous writing it. Please excuse any of the mistakes.

We asked if we could publish her letter  and she replied (end Nov 2003):

Thank you for your letter, which I received today. In connection with using the contents of the letter which I sent you, I would have no problem with it being used in the newsletter or on the personal stories page. I will have time off from work over Christmas and I will send you more information about myself for the personal stories page. Thank you again.