A significant aspect of my story is my age, and the context of the times. I was born in 1938, a year before the second world war broke out. I belong to a generation brought up in wartime followed by the years of rationing. When sweets came off the ration in 1953 I was fifteen.  Doing without things and its corollary – putting up with things – was a natural way of life. 

Added to this, I was at boarding school from the age of 10.  There, we learnt to be emotionally self-sufficient and never ask for anything for ourselves but to look after other people. The queue outside the Nurse’s dispensary, next door to the big dining hall, was a puzzle to me.  I slowly gathered that it had something to do with “periods” and “sanitary towels”, but the details I never discovered. I didn’t ask my good friends or confide in them, preferring an ostrich-like approach to my lack of menstruation, a word I hadn’t yet learnt.  At home my mother did consult our doctor when I was about 16 and we were reassured that sometimes girls were late.

I gained some knowledge through reading but I was not unduly concerned about my strange state. I’d buried any concerns I might have very deep.  I looked on the bright side of everything. I could enjoy sex without any worries about getting pregnant.  This led me to be what I labelled promiscuous, although in retrospect it was by no means so.  I decided at the age of 21 that the next man I got into bed with I would marry.  Fortunately for me, the right man came along at the right moment.  Our sex life was harmonious and we married in June 1960. I was 22 on honeymoon. 

Peter shared my outlook.  If and when we decided we wanted a family, we would look into my lack of periods.  That moment came when we’d been married five years.  There’d been articles about fertility research being carried out at the Queen Elizabeth hospital in Birmingham.  We were living on a Greek island at the time, but the next time we were back in England, I arranged to see a consultant at the hospital.  He examined me and pronounced me lucky to have a beautiful body. He’d love to open me up, he said, and see what was going on inside, but it was most unlikely that anything could be done.  We could adopt.  I went to the Ladies and shed a tear or two; then a few more with Peter and his mother and mine.  Then it was a matter of getting on with the process of adoption.

We were extremely lucky that we hit the right period for adoption.  It was before the Pill. There were many women who were pregnant and who would not abort their babies, despite not being in a position to bring up a child.  It was easy enough to adopt a newly born and healthy baby that matched our white skin.  Nowadays, adoption is far more fraught with difficulties. Children that have been fostered and with disturbed backgrounds are the ones that are available for adoption.  It has become more of a charitable act that entails a great deal of patience and understanding, rather than simple straightforward parenthood, which can be difficult enough in any case.  So we have a daughter and a son, now in their 50s.  Our daughter Sophie has two children of her own, now in their mid to late 20s.  Her son has a son and a daughter, so we are great-grandparents.  Our son lives in New Zealand, a wonderful place to visit.  Our daughter lives in our nearest village and the others are within a short drive.  We are fortunate to have such a family.

I would have stayed almost as (ostensibly) unconcerned about my state as I was in the 1950s and throughout my life had I not read a novel called Middlesex by Jeffrey Eugenides.  This was in 2016 or so. The novel is woven around people whose gender is uncertain. There was a passage which seemed to describe me, to a horrifying degree.  I came to the conclusion that I was a kind of hermaphrodite.  While I can sympathise and understand anyone who is definitely transgender, or with uncertainties, I was unnerved beyond measure by the thought I myself might not be wholly female.  I needed to find out as much as I could. I went onto the internet and diagnosed myself as having a syndrome with the initials CAIS: Complete Androgen Insensitivity Syndrome.  It shook me to the core.  The thought that I might have male characteristics lurking inside me was actually abhorrent.  I shared my situation with a few good friends who reassured me that I am “the most female woman they know”.  After a while, I felt able to take my queries to my doctor. My experience so far had been that no doctor would be interested, especially as I was by then in my late 70s. My questions seemed irrelevant.  But good for my doctor, she arranged an appointment for me in the genetics department of the local hospital.  At this point I learnt about the MRKH syndrome. I also learnt that I have 46 XX chromosomes, which was the occasion for massive relief and celebration. 

Since then I have occasionally thought of offering a counselling service specifically for people with MRKH.  The time has not yet been right.  It may still not be right from the point of view of my available time.  The article I read in last Sunday’s Observer by Kathryn Bromwich has stirred me into some kind of action. I’ve found MRKH Connect which is doing the kind of job I thought was needed.  I’ve included in our memoir (title: So Far, So Good, sub-title: Sixty Years of Married Life in London, Greece and Devon) a short but frank description of my history of MRKH. The more it’s talked about, the less of a dragon it will be in the minds of those who have the syndrome. 

I’ve written this for Charlie of MRKH Connect.  I’m ready to do whatever may help those just beginning to live with the knowledge I took 70 years to learn. 

Susan