Thanks for handing over to me, my name is Jo and I have Complete Androgen Insensitivity Syndrome (CAIS) – and because of my early experiences, I really value the importance of good support & information for families & it is therefore great to work with dsdfamilies.
I was diagnosed shortly after I was born in the early 70s. I was found to have hernias & when they operated, these were found to have been caused by internal testes. At this time, there were no groups like dsdfamilies & my parents were left both isolated & vulnerable.
I have a lovely memory of my parents telling me that they would lay me on a rug at home & marvel that they had made me & I always felt loved by them. However, they were told that they had to keep the secret about my different body, both from me & from everyone else in their life.
This had a huge impact on all our lives, my parents had no support network &
were left without the vital information they needed to advocate for my best
interests. They had nobody to talk to or to advise them on what questions they needed to ask.
were left without the vital information they needed to advocate for my best
interests. They had nobody to talk to or to advise them on what questions they needed to ask.
They consented to my gonadal surgery when I was in my teens in 1987, as they were never told that there were any other options. They agreed that I should be told that I had damaged ‘pre-cancerous’ ovaries that needed to be removed, as they were told this was ‘kinder’.
As this was all pre-internet, it took almost another ten years for me to get the
full truth about having CAIS. It was only in 1997 that I was finally given all the information I needed and access to my full medical history - & for me this was life changing.
full truth about having CAIS. It was only in 1997 that I was finally given all the information I needed and access to my full medical history - & for me this was life changing.
I was able to get the psychological & medical care that I needed to feel happy & accept that it is OK to have a different body – and I was able to know what questions I needed to ask, to ensure that I was fully informed about any choice I made about my body.
This also helped me to meet other people with similar histories & stories - & my parents were able to meet other parents. This was hugely helpful for them & they no longer felt as guilty & isolated. A group like dsdfamilies would have been incredibly helpful for all of us.
My life is now good; I have a family through adoption & retrained as a doctor, but for me this has been a long journey. Any support that can be offered to dsdfamilies could be life changing for the next generation of children born with differences in their sex development.
I’m happy to answer any questions that anyone has and really looking forward to working with dsdfamilies in the future. And thanks for listening x
