Christine's Story

[Received Jan 2004]

I have the condition and need to make some further 'progress' with it and am looking into what support there is and whether I think it might benefit me. I've borne this heavy weight largely on my own; but I think it might now be a help to me to contact others with similar experiences.

I was always told I had Testicular Feminisation - a term which I found deeply offensive from the first time it was mentioned to me. The 'AIS' terminology is acceptable and is an accurate description. In recent years I have been told I was CAIS, but in the last 18 months I have identified myself as a Grade 4 PAIS. I'm now in my mid 40s, although I probably present a younger attitude to life.

I was under the care of the Queen Elizabeth Hospital as a child and St.Thomas's thereafter and should say that I have probably had very good care (in the main) although I have had some very difficult and infuriating times. My condition was diagnosed as a baby - 10 days old.

I can tell you that there have been times with this condtion that have seemed like a living death, and still seem like this - and now I want to 'finalise', if possible, outstanding issues. The psychological stress at times has been overwhelming and consequently I feel I've had to be twice as strong in order to protect myself and my parents from my suffering. I do hope that greater attention to the emotional and psychological side of this condition is now part of the treatment.

Although I have had relationships, I have never had a successful one - where my partner understood or wanted to make a commitment to me once they knew of my condition; this has been very traumatic. This may be partly due to my attitude - I realise now that I should have had counselling - which I've never had or been offered (?). That seems extraordinary doesn't it? I now realise that I've buried myself in my career and other goals to try to avoid the other areas of my life that everyone else takes for granted. I'm very annoyed at neglecting myself!

A light seems to have gone on in my brain recently that it is time for me and my consultants to go the extra mile to make sure that everything has been done that can be done to make the rest of my life as normal as possible. I now feel that I should make a concerted effort to find a partner and make sure I have the confidence to do this. However this means that I still have issues concerning the extent of my female development, and whether 'improvements' can be made in this regard, to meet what I believe are reasonable goals.

What my parents and I are telling ourselves now is that it's not too late to bring resolution to physical issues that we may still be grappling with. The psychological scars I guess will remain just that; but they should not be allowed to get in the way of making progress on the physical front. Suddenly it seems to me that the strides that have obviously been made over the last 10(?) years, especially in surgery, which are undoubtedly currently benefitting young people with this condition, should now be made available to adults; if we aren't satisfied with our current situations. I'm tackling this in a couple of weeks with my consultants at St. Thomas's.

I found you via the Internet - thank God for this new technology: encylopaedic information at one's fingertips.