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A presentation given by the AIS Support Group UK to a symposium Intersex in the New Millennium, held at the Institute of Child Health, London, 28th Jan 2002.
Introduce ourselves: S_____ with PAIS, T_____ with CAIS.
Between us we have 50 years experience of taking HRT. We both have stories we could relate concerning our own experiences but have decided to read out a selection of comments published in the AISSG Newsletter (ALIAS) which cover a number of topics and represent a broader experience of HRT.
[S_____ reads the quotes in plain text and T_____ reads the quotes in italics]
ALIAS No 3: Rebellion.
"My mother took me to a reproductive endocrinologist. He wrote a prescription for Premarin, told me I would have to take it for the rest of my life, that I would never have babies and never have a menstrual cycle. After weeks of poring over medical texts (in a medical school library) and comparing the appearance of my body with the clinical photographs I reached a firm diagnosis - testicular feminisation.
At age 17 I had decided to stop taking Premarin and stop going to doctors. I stopped taking the hormone because no-one had ever given any reason why I needed it other than the absence of ovaries. At age 35 I resumed medical care because I decided that I needed to start dealing with all of this. I learned that years of hormone depletion had caused my bones to lose mass. My bone density is now so low that I am at immediate risk of spontaneous spine and hip fractures. I had been completely unaware of the connection between oestrogen and osteoporosis."
ALIAS No 4: Jumps
Dr Joan Bassey of Nottingham University has recently conducted a study which shows that 50 jumps on the spot per day can significantly increase bone density if done in conjunction with a calcium-rich diet (and HRT if no functional ovaries).
ALIAS No 6: Uphill Struggles
Aged 20 I had what I thought was a hysterectomy. Eventually (seven years later) I saw a lady doctor for the first time ever. She tracked down my notes from the women's hospital and phoned me at work one day and asked me and my husband to come and see her - she explained that my body didn't make oestrogen and started me on my first HRT aged 27. I suddenly felt "normal" - overnight.
ALIAS No 7: HRT in AIS
Dr Charmian Quigley has recently stressed to our US representative the importance of AIS women taking their HRT consistently. Some women seem to be casual about taking the therapy, possibly because it is a somewhat unpleasant and constant reminder that they are 'different'. Some women were never told to take HRT.
ALIAS No 7: HRT for Free?
I meant to say at the [group] meeting that my consultant told me that UK women with AIS should be eligible for free NHS prescriptions. I spoke to my GP who added another box marked 'hypogonadism' to the form (FP92A). I received the exemption certificate without delay and now do not have to pay for HRT treatment which is good news.
ALIAS No 8: 5th UK meeting
Dr Conway stated that there is no knowledge of the risks/benefits of long-term HRT use in younger women. A quarter of a million UK women under 40 require HRT, yet all the information is on post-menopausal women who take HRT for a relatively short time.
Dr Stanhope recommended starting oestrogen replacement from the age of about 8 years if the gonads have been removed in infancy/childhood. This is when XX girls start to produce small quantities of oestrogen.
ALIAS No 9: 1993 Letter
HRT specialist Mr Malcolm Whitehead wrote in a letter: as far as I am aware there are no data whatsoever on testicular feminisation syndrome and HRT. My approach to patients with this condition is to treat them as though they had undergone a premature menopause.
ALIAS No 9: HRT questionnaire
I've just filled out a questionnaire to take part in an HRT clinical trial. I decided to answer the questions as if I was a regular post-menopausal woman and answered "No" to "Have you had a hysterectomy?" and to "Do you have any medical problems/conditions?" and I made up a fictitious date for when my periods stopped. I decided that if doctors can keep telling me I'm "just a normal infertile woman" then I can claim the same when they are seeking important information from me.
ALIAS No 10: Dr Quigley update
Dr Quigley gave us an update on the latest HRT knowledge/advancements. The possibility of an inherent tendency towards low bone density in CAIS was discussed. There are other situations in which there can be a low oestrogen level but normal bones (e.g. polycystic ovaries, Klinefelter's syndrome and normal males) so could it be that male hormone action is protecting the bones in such situations?
ALIAS No 10: Hormones on the Brain?
In a letter to Prof. George Fink, Director MRC Brain Metabolism Unit, Edinburgh we asked about the effects of sex hormones on mood, libido, etc. in AIS women. A participant with CAIS reported a significant increase in mood on first taking Livial (Tibolone) HRT which is a synthetic steroid with oestrogenic, progestational and androgenic properties.
He responded: there are quite a number of data, most of which suggest that oestrogen is the most likely contender for 'Nature's antidepressant'. Progesterone is more likely to be 'Nature's sedative'. Testosteron,. by way of its conversion to oestrogen in the brain, has in our experiments the same actions as oestrogen per se. This may explain why testosterone too may have antidepressant actions.
We also asked whether there were any testosterone receptors in the brain apart from the 'androgen receptor'. He replied that present knowledge suggests that there is only one androgen receptor and that if it is defective in reproductive tissues, it will be equally defective in the brain and in bone. So the brain in CAIS does not recognise, and is therefore unresponsive to androgens.
ALIAS No 10: Wig Whammy
The member who first alerted us to free prescriptions tells us she was shocked to find that the certificate does not cover her for "wigs and fabric supports" which means she'll still have to pay for her own merkin!
ALIAS No 11: Gender ID -v- Quality of Life
Is there anyone doing research in AIS that focuses on depression, which many of us have spoken of? What portion could be a chemical thing or perhaps related to the absence of androgen receptors, or the use of long-term HRT, or possibly even clinical depression inherited down the paternal line?
ALIAS No 12: HRT/Alzheimer's
HRT expert Dr Rees said that in additon to its protective effects on bone and the cardiovascular system, HRT reduces the risk of Alzheimer's disease, improved balance and protects against tooth loss.
ALIAS No 13: Testosterone HRT
I am a bit confused because my AIS sister has just been to see an endocrinologist who has prescribed testosterone as well as her oestrogen implant.
Another correspondent on the same subject said: He (endocrinologist) said skin patches give excellent blood levels and a lot of the testosterone is converted to oestradiol in the body - hope I don't go on a libidinous rampage, grabbing men in the street. On the other hand
He (endocrinologist) said that another AIS patient who uses testosterone HRT tells him it substantially improves her golf performance!
ALIAS No 13: Not taking HRT
A CAIS woman in her mid 30's who had an orchidectomy aged 10 or 11 said "I need to find out why my physician sees no need to prescribe HRT. Even if I decide to see another physician I would like this physician to be educated about the condition in the event some other patient with AIS should seek him out.
ALIAS No 13: The Pills .. The Pills
Many members of the support group have told me that they did not take their HRT pills when they were younger because they were a daily reminder of 'being different'. By ignoring taking the pills they could hide from the disorder. The decision not to take the pills may be the only element of control they feel they have over a situation in which they largely feel a complete lack of control.
In my own case the only thing my mother would ever mention about AIS was to ask me if I was taking the pills. I rebelled by not taking them - in an odd way the pills became the embodiment of all my hurt, anger, frustration, etc. as though the pills were the cause of the problem and without the pills the problem would just go away.
As I got older and understood that 'old' ladies took Premarin as hormone replacement I felt equally embarrassed that I as a teenager had a prescription for the same drug. I have spent a good deal of time in therapy discussing and crying over the trauma of being on HRT at an early age. I cry over the fact that at a time of life when all of my friends got their periods, I instead got a pill. I desperately wanted to cross over the threshold to womanhood in the same way as my friends did - by having a menstrual cycle.
ALIAS No 13: Breast Size
A few years ago I complained to a specialist that an increase in breast size due to HRT made it too uncomfortable to take bone-loading exercise for my osteoporosis and he said something like: "But breasts are an important sexual signal; you should count yourself lucky". I had to explain that they hadn't been a lot of use to me in that respect without a vagina to go with them.
ALIAS No 15: Book
We have been helping Caroline Hawkridge with a chapter in her Penguin book, "The Menopause, HRT and You". The book has three chapters for young women including one for women who need HRT from an early age due to genetic conditions. This chapter explains how these conditions come about, looks at the HRT issues and ends with six women's stories.
ALIAS No 15: Bone Scan Operative
1st correspondent: I have to say the encounter with the bone scan technician was more stressful than the one with endocrinologist. She first wanted to know if I'd ever been on birth control pills. My answer (that I'd taken them as HRT but not as contraceptives) seemed to completely phase her. "When did I start my menopause?" she went on. "Well I had an artificially induced one when my .. er .. gonads were whipped out." "Was that at age 24?" "Yes" (OK, so she already had information on that!)
2nd correspondent: I too had difficulty in convincing the young lady that I had been taking HRT for 34 years - she even wanted me to calculate how many months that was! When she asked the stock (monthly) question I replied that as I have AIS I have never had a cycle (except my mountain bike - haha!)
ALIAS No 17: HRT for 27 years
What is amazing to me is that I have been on HRT for over 27 years, and have moved around a lot and had to go to so many doctors to get prescriptions that I've lost count. Yet not one single doctor has ever offered me an explanation of my condition - is this kind of lack of knowledge usual in the medical circles?
ALIAS reply was: In the case of AIS - Yes!
ALIAS No 18: Childhood HRT? (letter from overseas parent of PAIS infant)
"An article in ALIAS No 15, Summer 1999 mentioned two doctors, Dr Conway and Dr Stanhope, who are advocating or trialling low dose oestrogen supplements from age 8 or 9 for AIS children, in order to build up strong bones. When I questioned our endocrinologist about this, his reply was most inadequate, as was the second opinion I obtained.
One of these doctors said something to the effect of "osteoporosis has never been statistically shown to be higher in women with AIS and it is really just a case of being a bit of a fad topic at the moment, so don't worry about it". Both discussed how the current HRT treatment is excellent, adding that there is no evidence of early hormone administration being beneficial and it may even be detrimental. It was also brought up that very small doses of oestrogen are not available in Australia anyway."
The support group contacted Dr Stanhope and he kindly replied to this parent, copying u, as follows: "I firmly believe that it is best to mimic normal physiology. Normal puberty does not start in girls at the age of 11. The endocrine events start many years before this - we know that the ovary develops throughout childhood and by the age of 8 commonly has an enlarged multicystic appearance, at least two years prior to the onset of phenotypic puberty (i.e. breast development). Thus if you were going to replace oestrogen treatment then the most sensible age to start would be from the age of 8-9 years."
ALIAS No 19 - Enquiry from the Dark Continent
I would love to know more about oestrogen treatments for young children and what everybody thinks about this. I would also like to know if many AIS women also suffer from stress incontinence due to low oestrogen levels.
ALIAS No 19 - HRT Effects (CAIS member who feels more Male than Female)
At the age of 40 I was 'done'. I had testes removed and went into full menopausal mode. I was put on HRT - Premarin and then Livial - but both types gave me violent headaches and mood swings. I have taken myself off HRT now and feel a lot better. It may sound silly but I have felt a different person since the operation - a part of me is missing. I often feel depressed and miserable. I have put on weight and developed breasts.
ALIAS No 19 - Final Comment
Dr Conway was asked at the 13th UK meeting whether HRT can have an influence on tiredness. Following an explanation of how brain hormone levels can be assessed his final comment was: "IT'S HOW YOU FEEL THAT IS THE BEST MEASURE".
STOP PRESS NEWS: The Sunday Times 'Style' magazine of Jan.13th 2002 contained an article about HRT nasal spray. Invented 20 years ago, a single dose to each nostril will maintain a constant level of oestrogen in the blood for 24 hrs - and has fewer side effects than other types of HRT. It is currently available at Liverpool Women's Hospital.