Dot's Story

[Received Mar 2004]

Our dear Helen was horn in 1952 and as far as we knew perfect. It took 46 years to get to the truth when, about six years ago, she asked to see her medical records. She has a much loved brother, six years younger.

All seemed well throughout her childhood. At Secondary School she still had not menstruated and when, at about the age of fifteen I attended her medical at school, the doctor was mildly surprised at this but advised me to give things another year and then get advice. This, it seems stupid now, did not concern me unduly at the time.

I must say in my defence here, I had absolutely no inkling of what this could mean, in my experience of school and the workplace with literally hundreds of females. I had never heard any hints of what, I have since been trying to understand, can happen. I was completely ignorant of AIS in all its various forms.

When Helen was 17 we were referred to Oldchurch Hospital in Romford and first saw an endocrinologist. His words to me were, "Do not worry Mrs McPherson, you have a normal, healthy, lovely, daughter." Very nice and reassuring but why wouldn't she be? More ignorance on my part. Of course then he referred her to a gynaecologist. Then it all began, not a very good start to womanhood, 17 and under a general anaesthetic for investigation. The upshot was that her uterus "had not properly developed and resembled a small deflated balloon". If she felt she needed to come back in the future they could do a laparoscopy and could perhaps find out more. "

Helen went into nursing at Guy's Hospital and at about 21 said she would like to find out more about herself. Our husband and wife G.P.s were less than helpful. Both Helen and myself went to them to ask for a referral and at one point were told (wait for it) "not to ask for trouble." This must be the favorite doctors' catch phrase and one that you still hear people say they are told for many different problems.

I tried phoning the original consultant's secretary and asking for an appointment, to even pay privately, but "No, you must have your doctor's referral."

So to my everlasting regret, we let it drift on.

By now she was working very hard at Guy's and enjoying life generally, but at times not always feeling 100 per cent. Then unaccountable stomach-aches getting worse and waking up at nights and really feeling unwell. This was going on for about four years. Going to another G.P. in London, where she was now living, being given various tablets, investigations for an ulcer etc, etc. Phoning me and saying "I think I must be a hypochondriac" and trying to joke about it and saying that the doctor must be thinking the same way about her.

Then the bombshell. Just before her 25th birthday, on one of her increasing visits to her G.P. he suggested to be on the safe side she hop on the couch for an internal examination. He told me afterwards (her Dad and I were now living in Scotland and I came straight down after her 'op') that he immediately knew something was very wrong and she was taken into Chelsea Hospital for Women very shortly afterwards having her 'ovaries' removed, both badly infected and attaching to her bowel. The consultant told us over the phone that she was very ill. Her consultant also told me that as her "reproductions organs" had been removed she would be able to have heavy treatments of radiotherapy which was commenced at the Royal Marsden situated almost next door.

No doubt the treatment saved her life. She was very ill for some months.

When I gave the consultant a brief resume of her history, he said that if he had seen her at 17 he would have removed her "ovaries" there and then. It was still "ovaries" [being talked about] you will have noticed!

So months of radiotherapy every day, for the first few times struggling by bus until she went and queued up herself at the ambulance desk to arrange for transport. What a blessing some good kind people volunteered to do that job. She went through it! I sometimes wonder how she survived it.

I stayed in London all the time with her at her flat.

So that's how it went from late July until she was able to travel back to Scotland with me in late October. She has had several 'ops' since then, it went on ( hopefully no more of these now.) For about a year before all this happened ,Helen had been a nursing officer in the Marks & Spencer store at Marble Arch. One of the bright spots of this time was the wonderful way they looked after her with flowers, fruit (the best of course). The manager took her champagne, personally, which cheered her up no end. The store invited me to tea which was lovely and I took the opportunity to speak to the store personnel manager about rumours (there were several hundred young woman and girls working there) that Helen had heard after she went into hospital, namely that she had left suddenly because she had become pregnant and had an abortion ! How ironic, chance would have been a fine thing !!

We have gradually tried to come to terms with all this.

Through all these intervening years, not one of the medies, and there have been a few, talked to her about the real reason for all this, and until she found the support group, no emotional or psychological support. She had to find out her true history by reading it herself so late, what a blow! They say, according to many pieces in the UK support group's newsletter, ALIAS, that medics are worried that openness could result in worse traumas ! They cannot have any conception of the distress and turmoil that such unanswered problems can cause all these years, knowing that things are not right, remembering all the sidelong looks and subterfuge, particularly by medical staff when she had her "ovarian " cancer and subsequent operations. What right has anyone to withhold such knowledge about your own body from you ?

There are many sad moments I have left out, as all group members will know.

Since this was first written, Helen has been trying very hard to come to terms with all that has happened (as you all are, in this wonderfully supportive group), even though there seems to be many different permutations of this condition. It's a hard ongoing struggle for so many of you and your various supports. I have to say, the medical support has been magnificent since meeting up with the [?University College London Hospital] team. Particular thanks must be given to the psychological help Helen has received. Her Dad and I have seen a great improvement in her general well being.

Thank you all so much.