‘The results of the ultrasound and blood test confirm that you have polycystic ovary syndrome’ (PCOS), the voice of my male GP echoes down the phone line. He only confirms what I have known for the last eleven years, but after moving around the country several times between now and then, my records from that time are unlocatable by the NHS and I find myself going through the diagnostic process once more. I ask what the options are and he responds by asking if I am trying to get pregnant? No. Well, then I can go back on the contraceptive pill. I explain that I have been told time and again that I should not be on the pill—as a migraine sufferer this raises my stroke and DVT risk. Have I put on a lot of weight? No, I exercise frequently to control this. That’s lucky. I change tack asking about the long-term health risks. Apparently there is nothing to worry about. But I have done my research and know that this is not the whole picture. Can I see a gynaecologist? He is reluctant to make the recommendation. He implies that I am just wasting time with my concerns. I keep him on the phone and eventually he gives in. The letter will be in the post.
In reporting here on being diagnosed, treated and living with PCOS I intend to offer insights into whose bodies and conditions matter within gynaecological medicine. Simply put, what has become clear to me is that women’s gynaecological health becomes an issue for medical professionals to ‘solve’ when they are trying to become pregnant. Women are made to feel that their bodies only matter when they can reproduce.
A relatively common gynaecological condition, PCOS affects 1 in 5 women in the United Kingdom, that’s 3.5 million women. Women with endometriosis, fibroids, conditions in which menstruation causes considerable pain, have reported attitudes from medical professionals who expect that they should just get on with it; while the recent controversy surrounding vaginal mesh implants and the email correspondence of certain (male) medical professionals, similarly reveals the lack of regard for women’s gynaecological health. In the related field of obstretic medicine, the predominant focus is on foetal health, women simply incubators of future life.
I was first diagnosed with PCOS in 2005. On that occasion, I had visited the GP to investigate why I did not have periods, a condition known as amenorrhea. As a teenager, my periods had been irregular, at first, once a year, then once every year and a half. These were heavy—bleeding through sanitary pads in less than an hour— and uncomfortable, going on for 10-14 days. At one stage a young male GP ‘suggested’ to my 16-year-old self that perhaps I had suffered a miscarriage, a suggestion that was almost flippantly communicated and which went completely untested. I left the surgery frightened and alone to digest this information. But back to 2005 …
By now my periods had stopped completely, the exception being when I was on the combined pill. The irregularity had caused anxiety of unwanted pregnancy and confusion; that women should expect a monthly bleed was something I had learned at school, that my mother had told me. After the standard blood tests, I was referred to the gynaecologist; within the National Health Service. For those unfamiliar with healthcare in the UK, for specialist medicine—which includes gynaecology—a general practitioner is a gatekeeper, adjudicating whose cases are deemed suitable for referral. The same doctor refused to refer my friend who had identical symptoms. Both PhD students at the time, I was in a relationship and she was not. Although I had never been asked if this was the case, I believe there was an innate assumption that I might be trying to get pregnant. Over a series of months, the gynaecologist tried various treatments to see if they could make my reproductive system function as ‘normal’, to bring on a monthly bleed. Treatment was terminated when neither of these had the desired result and I was told to come back when I wanted to get pregnant. In the meantime, I would need to be on the combined contraceptive pill—with all its side effects—to control the weight gain and excessive hair growth often associated with PCOS. I cannot help but consider what would happen if men experiencing erectile dysfunction would be told to just get on with it until such time as they wanted to procreate.
At the time of my initial diagnosis, I was only 24 and focussed on my PhD. In the early days, every time I went to renew the prescription for my pill or for a smear test, some well-meaning doctor or nurse would ‘remind’ me that if I had any hopes of having children that I should start trying soon; the older I got, the more difficult it would be, the female body a ticking clock. I responded to these ‘reminders’ curtly, stressing that nothing could be further from my mind—I was building my academic career and aware of how having a child might impact on this; having children was something I had always been ambivalent about and wasn’t prepared to rush into just in case it was not possible for me to conceive. Indeed, several of my female friends who have been given similar advice—for a variety of gynaecological conditions—have become pregnant almost immediately after taking themselves off contraception, shocked by the speed with which the condition—‘finding it difficult to become pregnant’—has evaporated. As in Margaret Attwood’s ‘A Handmaid’s Tale’, the moral panic around reproductive health is focussed on the female body; behind the closed doors of consultation rooms, such panics are remade as private troubles.
In October 2016 I am back at the gynaecologist. I explain that I am keen to find out about the long-term health risks associated with PCOS and how to better manage these. Alongside the conditions that I was already aware of, she explains that the amenorrhea might be linked to an increased risk of uterine cancer and that a precautionary measure is to stimulate the womb to shed its lining. She understands that I do not want to get pregnant now, but if I change my mind I will be immediately considered for fertility treatment; she also recognises that after many years taking contraception, I want to consider alternatives. She writes down her recommendations, sending them through to me and my GP surgery within a week.
But this is not the end of the story. A month later, I make an appointment at my local medical centre, this time with a female doctor. When I am ushered into her office, I recall the misplaced but well-meaning reminders of medical staff of the continuing deterioration of my reproductive system, my perception that gynaecological health and well-being is prioritised when women want to get pregnant, and the inappropriateness and disregard of her male colleague. She is conciliatory, furnishing me with the prescriptions recommended by the gynaecologist. I am convinced that if it was not for my persistence and insistence on questioning and challenging—itself the product of advanced educational training in the social sciences and my own professional standing—I would have been left to manage my condition myself, left to rely on the Internet as a source of information about the possible long-term health complications of this conditions.
The innate assumptions that guide the way in which medical professionals approach gynaecological health privilege reproduction within this. Admittedly, PCOS is a relatively benign gynaecological condition, but taken alongside the (mis)treatment of other gynaecological conditions, my experience points towards how women experiencing gynaecological issues are expected just to get on with it; many of these issues are only seen as problems to be solved by medical professionals when women are trying to get pregnant. It is almost as though our wombs, our ovaries have no other function within our bodies other than to foster future lives. While this approach neglects the effects of such organs and their functioning on the rest of the body, on our health and well-being, it also speaks to the ways in which women’s pain—physical and emotional—and women’s health is viewed by the medical profession.
It is time to ask the question about why women’s gynaecological health only matters if we are reproductive?
A brief note on my anonymity: I thought long and hard about whether it would be appropriate to remain anonymous or not, but decided in the end that while it is useful to share these experiences and evaluate them, I was not ready to make my identity public.