Jay's Story

[Received Feb 2000]

I honestly thought I was the only one - I didn't even know there was a medical term for it. I have always felt like a freak, and now at age 37 because of a program on TV that introduced me to the word - I realize that I am not alone. I feel numb with the realization that there are others like me!

I have always been told that I had a double hernia at 4, and have constantly been told that that is very unusual. I don't know if my parents lied to me or if they were kept in the dark too. I spent many years going in and out of hospitals, not the privacy of a one on one consultation, but with groups of interns and interested individuals. I often wish my parents had said NO - but it was the era of the doctor knows best, and they just went with the flow, and I knew no better.

I have moved around from city to city, and have had to endure the shame and the misery of feeling like an oddity every time I have had to go to a new doctor to get more hormone tablets. I am a woman, and feel like a women, but I feel as if the lies and deception throughout the years have marred my joy. Throughout all these years I have never questioned why I am like I am, I just accepted it, and tried to ignore it. Each relationship becomes a burden when I have to explain why I don't have any of the normal womenly signs.

To know that there are others out there is staggering. I am happy, but also extremely scared. I thought that I could ignore it and in my mind at least it would go away, but the website has made me realize that it needs to be embraced and dealt with. Is there anyone I can "talk" to?

We didn't put Jay's story on the site at the time she first sent it because it seemed more of a request for support. We sought her permission in Apr 2002 and asked if, in the meantime, she'd met other women through AISSG US, to whom we'd referred her. She replied:

By all means use my story. Other peoples' stories certainly had a positive impact on me. I haven't joined the US group - even though I've lived in the States for quite a few years, I feel a 100% English, and just feel that the difference between US and UK growing up experiences is too different. I have also found a little peace within myself.

I truly hope that the medical community is more aware of their treatment of patients with this condition. I spent many years attending appts at Gt. Ormond St [London] and Addenbrookes [Cambridge] - surrounded by doctors, interns, students - it seemed like "the more the merrier". That is the most distressing thing to me, now that I look back.