Rosemary's Story

Dear AISSG,

Regarding truth disclosure by the medical profession, I thought you might like to hear about my recent experience.

I was about 14 when I concluded, with the aid of a hand mirror, that I was neither male nor female, but more female than male. In those days (early 1960's) there was a social taboo about knowing about one's body so I kept this knowledge to myself and it was not until I was 17 that medical examination and subsequent surgery took place. My parents were told that my internal organs had not developed properly and that two hernias had been discovered and removed. Also, I was prescribed tablets (oestradiol). There were regular checks but after vaginoplasty at 21, these became less and for some 30 years my condition has not been monitored. During this time, the HRT was dispensed direct by the gynaecologist and I believe my GP's over the years did not read the letters in my files, even though I have had a problem with raised blood pressure.

Having discovered the AIS Support Group two years ago, I was (and still am!) grateful for the information available within ALIAS. From this publication I concluded that I had PAIS, Grade 4/5 and felt that I was sufficiently knowledgeable about my condition but needed confirmation from my GP's file. During the appointment, although my specific questions were answered, and certain passages were read to me, I did not actually get the files in my hands. The GP did however confirm that my original diagnosis was "testicular feminisation". Since then I have attended several SG gatherings and met some wonderful people. Most people (especially those in the US) have copies of their medical records relating to their diagnosis and treatment, and I resolved this year to obtain a copy of the letters from my medical file.

My GP was wary about this and consulted with his Medical Defence Association, and some days later telephoned me to say that there was nothing in the files that would be against my interests in knowing, and that as I was "all grown up" he would arrange to have a copy made for my collection, but pointed out that the records are in fact the property of the Secretary of State. On payment of a small administration fee (five pounds) I collected the package.

I knew that it would be difficult to read what was written about me over 30 years ago and kept the package unopened until I felt ready. Two and a half weeks later, I felt the time was ripe and took the package to an atmospheric location on the coast. A gale was blowing, the sea was crashing over the reef a mile out, the beam from the lighthouse was sweeping the whole area, and the fog horn started up for good measure. My husband was with me but had forgotten his reading glasses (good job really).

The package contained photo-copies of my clinical records (the little brown cards) going right back to when I was a baby, with all visits to the doctor's surgery and ailments logged. The handwriting was terrible! The summary record card contains a 1965 entry "AIS", but in 1990 a note "removed from cervical smear target on medical grounds (hysterectomy)". Then came the copies of the letters from the gynaecologist to the GP explaining my condition. I read some of this out loud, but I suppose was in a mild state of shock at the tone and the contents, and read them again several times over that evening at home. That night was virtually sleepless - despite being 51 with a reasonable experience of life, I was 17 again, with all the shame and confusion just as raw.

The next day at work, I was feeling very sorry for myself, so rather than suffer the embarrassment of letting my emotions show in the office, I took half a day holiday. On arriving home I was greeted by my husband, who was very understanding - but who at first thought (in his words) that I had been "unceremoniously dumped" from work. (These things do happen!). He left me in my "den" for the rest of the afternoon where I set about rearranging the clinical notes in chronological order. But, I felt somewhat disturbed for a number of days.

What made me feel so upset was the terminology used in the letters (although I appreciate that medical conditions need to be described accurately) and the fact that the gynaecologist (now deceased) kept in contact with me until fairly recently but never in that time - when medical knowledge and attitudes to intersex conditions changed considerably - attempted to introduce me to the true nature of my condition.

In case you are wondering, I will repeat some of the passages which to me sound contradictory within the body of the same letter, were lifted straight out of textbooks, or seriously compromised by the attitudes of the professionals in the 1960's.

The first letter, following my initial hospital visit, thanks my GP of the day "for sending this most interesting ? girl to see us. I think she is a case of adreno-genital syndrome." (I understand this is the old term for CAH.)

Following a further examination, the second letter states that "the x-ray of the skull was normal as was the IVP". "On rectal examination I could detect no uterus and on palpation of the groins I could feel on each side a gonad which could be felt in each labium majus. I think therefore that this case may be one of testicular feminisation." This is the last reference to a name for my condition.

Then I was admitted for an exploratory operation and here follows a selection of the comments which appeared in a report on the findings. "Biopsy of the glands present in each groin …. these were found to be testes ….. there was no evidence of spermatogenesis and the tubules contained only sertoli cells." "The small opening in the centre of the vulva was found to be a urethra … the testes were removed …" "The sex chromosomes are X Y - typical male." This, I can handle - but what follows is what really derailed me.

Here goes - "It is felt that this person is really genetically and sexually a normal male … in view of the fact that he has been brought up as a female since birth for 18 years and was well known in the athletic world as a female, it was decided to perform castration. The patient and her parents have been told that she will never menstruate and never conceive but that if she wished to get married, an artificial vagina could be created. Neither the patient nor her parents have been told of the wrong diagnosis of sex; they still think that he is still a female and we have done our best in our attitude to the patient not to alter their views about this. It was felt there would be too much undesirable publicity, and also psychological trauma to the patient if they were told." The last two sentences were heavily underlined in ink.

The final letter in this sequence (to a new GP as my previous one retired - my case was probably too much for him!) contains a selection of gems, including "She is an Olympic athlete … this individual had been brought up as a girl since birth and was well-adjusted to leading a female type of existence … biopsy of the gland in each groin revealed that they were in fact testes, and in view of the danger of malignancy and hirsuitism which would result from production of testosterone, they were removed …" "Neither 'she' nor 'her' parents have been told the diagnosis because it was felt that this would cause considerable psychological trauma; it is reported that there is a high incidence of suicide in these inter-sexual conditions." " 'She' is almost certain to be selected to represent Britain next year as a 'female' and as we have removed the testes now, 'she' is more female than male." This sounds very much like the opinion I formed at around age 14! I had also - at age 17 and prior to departing for the Tokyo Olympics - considered withdrawing from the team, but having earlier that year been part of a relay team which set a new World Record, felt this would stir up too much attention, as expectations were high that we would do well.

I would say, however, that following my hospital treatment, I was relieved some progress had been made and felt good on the oestrogen.

I would also say that in the years between my own discovery and surgery, I had given much thought to gender/sexuality and whilst I did not consider myself at all feminine (in the 'girly' sense), there was no way I could function as a male due not only to a lack of desire to be part of a male "culture", but also because I did not possess any 'dangly bits'. Therefore I have adopted an independent way of life.

Back to the present time. Having sorted my clinical notes into chronological order, I set about logging my blood pressure together with the medication I was taking at the time. Bear in mind that the GP was not necessarily aware of the HRT I was receiving annually direct from the gynaecologist. I recall some 21 years ago during a superficial medical for diving club membership that the GP commented that the blood pressure was a little high. During this time I was still on oestradiol tablets. Approximately five years ago, the gynaecologist sent me some new tablets called Premarin, saying that these were a "more natural way of taking oestrogen" and that I should obtain future supplies from my GP as she was retiring. She would also be writing a letter to the GP to explain my situation.

Soon after this, the GP suggested taking my blood pressure as it was part of a national campaign and was somewhat surprised that it was 200+/100+. Several drugs were tried, without much effect. Another GP in the practice had also written on the card "is she taking oestrogen?" Eventually the BP did reduce with the aid of medication but it really started to tumble 18 months or so ago, after I requested to have my HRT via patches after reading about these in ALIAS. (Luckily my bone mineral density is better than average for my age, but even this test took 5 months' pressure to obtain.)

By keeping my diagnosis 'secret' I could have had a serious problem and do not know if this has caused any hidden damage or stored up trouble for the future. As a result, I have requested (and obtained) a referral to Dr Conway's clinic at the Middlesex Hospital in January 1999, and hope to obtain an up to date assessment of my condition in modern-day terminology so I can draw a line under this 34 year charade. How much better it would have been if there had been communication from the outset.

Some people have suggested I should take legal action. To be successful you need to prove that as a result of the decisions that were taken, you have suffered 'injury' and be able to present an argument as to 'how could this have been avoided'. This is a potentially expensive course to embark on, with the added prospect of 'going public' so I'm still considering what to do. (The Law Society on 0171 242 1222 will provide you with names of solicitors in your area of the UK who will consider cases of medical negligence.)

From what younger members and their families say, it appears that medical attitudes HAVE changed - but there still must be a lot of people who have been kept in a state of ignorance and who WILL sooner or later have the shock of reading what was written about them at the outset of the diagnostic process. I feel that it has taken me 2 intense years to catch up with the events of the previous 30, and throughout my adult life might well have made different decisions on relationship and family matters had I been party to the true nature of my condition.

The main purpose of this letter is to acknowledge the role the Support Group and ALIAS have played in educating me about my condition - and to press for better management of our cases.

There is nothing worse than hearing the details of other people's operations, etc, so I hope this letter has not rambled on too much - and that it might prove helpful to someone in a similar situation.

Yours sincerely,

Rosemary