Beverley's Story

[Received Oct 2001]

"Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself." Harvey Fierstein

I was blessed with a wonderful memory! Even now I can remember being about eight years old and bent over in pain with agonizing stomach pains, I remember the trips to doctors that wound up in me taking pain killers and antibiotics, I even remember a trip to a doctor (around 5 years old) with swollen labia. The doctor told my mother to make me wear 'pure cotton underwear' (I can't help laughing when I think about it). I was always very tall for my age, with great skin., the envy of my friends and especially my brother who hit puberty 'full force'.

At 13 I developed the famous 'double hernia' and was admitted to my local hospital for investigative surgery. How exciting I thought, a month or so off school, my friends would be so jealous. I would get my hernias repaired and would go back to school refreshed and 'well'. Little did I know that at 28 years old I would still be battling with hormone problems and menopausal symptoms which have lead to pituitary gland dysfunction, osteoporosis and thyroid gland nightmares!

The doctor who was doing the surgery on my double hernia discovered shortly after incision that in place of ovaries I had testes and was without womb, ovaries or any of the female reproductive organs. He quickly stitched up the incision, told my parents a little about the condition and told them not to tell me the facts until we had seen the specialist, then I was referred to a gynaecology specialist surgeon at the Royal Victoria Infirmary in Newcastle Upon Tyne. Because of the NHS waiting lists at the time I had to wait six months or so, which became six months of sheer agony. The new surgeon consciously told me that I had ovaries that had not developed properly and I would need to have a hysterectomy to prevent cancer. I could see how upset my parents were at the time and so, me being me, put on a smile and shrugged it off (or at least did a great impression of shrugging it off). Little did I know that they were upset at the fact that my doctor had just told them to lie to their little girl. No wonder there is such a stigmatism attached to intersex conditions when doctors are telling people to lie to their own children about it. My parents did as they were told, being protective as parents are.

Before I knew it I was undergoing surgery again to have a 'hysterectomy'. I felt ill and recovery was slow and painful. I tried to get on my feet as soon as possible but once your only form of hormones have been taken away you slowly begin to go downhill. Shortly after surgery I was followed up with at an out patients clinic. One milligram of oestrogen a day (how generous) this went on for many years and it is only now that I am discovering through tests that for the last 15 years I have been taking only 25 percent of the HRT that is the recommended dosage for me. I think that if I was given appropriate follow up checks for hormone levels, bone density levels etc I would not have half of the symptoms I now do. It was during this follow up that once again another internal examination took place, again with 10 or so students glaring at my private parts, while my so called professional told me that I was perfectly formed and coitus would not be a problem!!!

(It was at around 16 years old that my parents told me about AIS and that I was affected. I could see how worried they were about my reaction so I think, as far as I can remember, I just shrugged it off and carried on with life as though nothing had ever happened.)

I wish my surgeon was there a year later when I tried to have intercourse for the first time and embarrassingly discovered that what he told me was my hymen was actually the end of my vagina. I have never known such excruciating pain in all my life not to mention the utter shame and embarrassment. I returned once more to the surgeon and explained my new predicament. "Not everybody needs to have sex you know!" "You don't need to have intercourse!" This is what he told me as he was refusing my request for a vaginoplasty. So, I requested a second opinion with a new surgeon. Needless to say more painful surgery followed with a colovaginoplasty (Baldwin Method). The operation was successful and I began to try and live as normal a life as was possible......

.....Hey, if you are okay physically everything is alright! Right? Wrong! I know I was never offered any form of counselling, I may have even turned it down if I was offered it but at this point in my life I wish I had some and I wish that I had been given some whether I needed it or not. I feel alone. Even though I found a wonderful support group for ladies with my condition, I still feel alone. Some nights I get into bed and just cry, confusion, embarrassment and a little shame all rolled together.

I am 28 years old, I have lied to all my friends over the years and lost contact with most of them, it's easier that way. I avoid making new friends because I am just tired of lying to people and at this point in time I don't know how to tell them the truth. I have had one failed marriage, which lasted five years and I never had the courage to tell him the truth. In the last ten years I have lived in three different countries and have now returned to the UK to settle down into a permanent home and job. Because of the shoddy 'after-care' I had been given my body is falling apart with one problem after another therefore I am living with my parents again, trying to understand what went wrong.

Do I feel sorry for myself? No! I am happy to be alive. I recently found AISSG, I have found others like me, people who truly understand, people who care! For the last 14 years I have felt like I don't belong, but since finding the AISSG I feel like I have wings.