Women's Health: It's Time to Validate Women's Bodies
My lungs aren’t great - I’ve been on medication for asthma since I was a child. As soon as my parents were concerned about my ability to breathe (always a challenge) they took me to the doctor who recognised the problem and gave me the correct treatment to relieve the symptoms, stop me wheezing, and let me go on about my business normally.
When I developed a cough that didn’t go away which started causing chest pain and made me sound like an ageing Victorian chimney sweep, the doctors considered my symptoms, diagnosed me with whooping cough, and gave me medicine to relieve the pain.
When it comes to my uterus, my womb, and my pesky ovaries, compassionate treatment based on tried and tested medical evidence and understanding was not the response. This is my experience as a cis, AFAB woman, and by using “woman” throughout, I certainly do not mean to dismiss the validity of trans women being women, nor imply that the defining feature of the ~female experience~ is bleeding into your knickers every month. I sympathise deeply with every cis, trans, and non-binary person who lives with the monthly menstruation cycle (and, conversely, the ones who wish they did).
Back before I started puberty (the B.P.E, Before Puberty Era, if you will) I was told to expect pain. Pain was part of “being a woman”, and there wasn’t going to be much in the way of sympathy for you when half the population could carry on with a couple of painkillers and a hot water bottle.
I was told to expect mood swings. That was just part of puberty and I’d learn how to deal with them and be “normal”. If not, people could justifiably dismiss me by calling me hysterical or hormonal. It would be my own fault if no one took me seriously for a few years, and then once every month till my 50s.
I was told to expect some acne but that if I kept my face clean and didn’t eat too much chocolate it would go away by the time I hit my late teens (spoiler - it did not).
I was told these things despite having monthly migraines that left me bedbound, despite having periods so heavy I bled through tampons and pads together, despite feeling like this couldn’t possibly be right. I believed every adult and doctor who told me that how I felt was normal right up until I came round from emergency surgery, and then I stopped believing them and started asking questions. It turns out there weren’t that many answers.
Question 1 - so was it appendicitis?
No, your appendix was fine, your left ovary was not. You had a 10cm cyst on it that had caused torsion (twisted the fallopian tube), cut off the blood supply to the ovary and left it dead and gangrenous. We had to remove it. By the way, your surgery was 4 hours long, not 20 minutes, you might be pretty woozy for a while.
Question 2 - what the f?
We had a look at your right ovary and it looks ok, but it does have scarring that suggests multiple cysts. We think you have Polycystic Ovary Syndrome (PCOS), there’s no cure. Just stay on the combined pill and you’ll be fine. Probably. We think.
Question 3 - am I going to be ok?
Well you don’t have anything gangrenous anymore. You might, however, develop diabetes, be infertile, be plagued by this condition for the rest of your life, it’s hard to tell. Come back if you try to conceive and can’t.
And that was basically that.
Not for the first time (and, unfortunately, not for the last time either), I was very unhappy to have a uterus. This ~mysterious~ organ, along with its accompanying ovaries (well, ovary now) seemed to do little other than make me ill.
It’s a bit of a vicious cycle - most women diagnosed with PCOS only reach the diagnosis when they fail to conceive and they’re determined to have a real medical problem, not just painful periods. In a strange way, I lucked out by needing emergency surgery, but having found out the name for the problem, I’ve struggled to find anything in the way of cure.
The NHS website itself says “the exact cause of PCOS is unknown” (NHS Choices). There’s also no reliable data on how many people suffer from it - estimates range from just 1 in every 5 women to 1 in every 3. Again, because most women only get a diagnosis when they’re trying to get pregnant, there is very little support for women asking for help for themselves, not for a currently non-existent foetus.
Every ultrasound scan (check-up and emergency) requires waiting in the maternity ward. Every medication or treatment that gets funded enough to make it to the market comes covered in pink and storks, promising that, by taking this diligently, you too will be able to get pregnant*
(*unless there’s another problem with you that we haven’t found yet of course).
There’s something very undermining about discovering the only way in which you can be treated for life-threatening chronic pain is by fixing you enough to make babies. Never mind the anxiety of abdominal pain - is it trapped wind? Is it period cramps? Is it another cyst they need to operate on? Never mind the days (weeks) every year lost to migraines, nausea and recovery from surgery. It is a failure of modern medicine that I count myself lucky because I had to have emergency surgery aged 18. I count myself lucky because, when I went to get an IUD, I happened to be seen by a doctor who had attended a sales pitch for a new PCOS fertility treatment to help with insulin absorption in the body (which is actually what PCOS is, it just manifests as ovarian cysts for those of us with ovaries) and she had a sample course that I could try for free. I count myself lucky to have a family and partner who are supportive of me, my health, and my ongoing lack of desire to have children.
People with periods have been called unclean (Leviticus 20:18, the Quran 2:222), imbalanced (Sun Simao’s Bèi Jí Qiān Jīn Yào Fāng c651, China, and Sushruta Samhita c.600BC-100AD, India), and of course, hysterical (among many others, Dr Althaus, 1848). Periods are something unique to those of us who bear uteruses and ovaries, and the (mostly white) men who developed western medicine tried their hardest to brush over the fact that their wives and daughters, and half their patients, bled from the vagina every month or so, and that might be something that should be addressed. (All references from the excellent A Curious History of Sex, Kate Lister, Unbound Publishing 2020, pp295-301.)
There has been, and remains, a systemic failure of western medicine to treat the pain of women with respect and dignity. Our pain is dismissed and the workings of our vital organs are only taken seriously when we want to reproduce. Even then, for too many BIPOC women pain isn’t taken seriously throughout pregnancy, during labour, and in the aftermath, with five times the number of Black women dying as white women in the UK (MBRRACE-UK Maternal Report 2019).
There continues to be a failure to treat women’s pain seriously, a perpetuation of the medical myth that women’s bodies are men’s but with “boobs and tubes” (The Guardian, 2020), and a perpetuation of the medical myth that Black women don’t feel pain in the same way as white women, (NY Times, 2019). Frankly, I’m tired. It’s past time that we have our pain treated properly. It’s past time that our bodies aren’t only medically valid when we can’t conceive. It’s past time that we are given the basic human dignity that we deserve.
