Part of the debate – in the Senedd at 3:59 pm on 14 October 2020.
Thank you very much, Jenny, for bringing this forward. I think it's one of those debates where people will be called 'brave' for speaking out. I think 'spilling your guts' is actually going to have a little bit more of a literal meaning in the rest of this debate than others may be comfortable with.
Joyce talked about the economic effect on women, but I think it's worth bearing in mind as well that our health and social care systems are primary employers of women in Wales, and by far the majority of unpaid carers are women, and if one in 10 of those disappeared on a rolling monthly basis to care for themselves whilst in the throes of an endometriosis episode, there'd be a pretty big gap in the number of people available to look after our cancer patients and other dementia patients and our mental health patients, let alone our own families.
When I was a young woman, I'd never heard of endometriosis. My closest friend knew what it was, because she'd had it pretty much from puberty—diagnosed much later, of course, as you might imagine—and I now think what a terrible friend I was, because I never really asked her what was happening to her. I never asked her about how much she lived in dread of her period, how she coped with the indignity of flooding, how she stayed awake when she would have been anaemic and exhausted from that excruciating pain we've already heard about, how she even managed to put one foot in front of the other, and what it was like, some months, to bleed for longer than you didn't.
Roll forward some decades, and let's think of my former member of staff; I have her permission to mention her. She has a degree, she has a Master's, and was only ever able to work part time because of the effects of endometriosis and its treatment. She had all the above symptoms. She was told she would have difficulties conceiving. Early menopause was introduced as an attempt to treat this, a sort of chemical castration for women, with all those delightful symptoms exaggerated for being artificial. Mercifully, that was stopped, but now she has frequent migraines and anxiety to add to everything else. Like all chronic conditions, there is a spectrum of intensity in how it is experienced. However, the level of ignorance about endometriosis is staggering, considering its prevalence, which is why I draw your attention to parts 4 and 6 of this motion.
During the last Assembly, we had a debate on whether page 3 girls should be banned, and I was speaking in it. In the morning, I had to visit a newsagent to do a media piece, taking two young work-experience people with me. And not for the first time, I was having a bad period. 'My age', I thought. 'Perimenopause', I thought. 'I'm into my late 40s; this is how it's going to be for a while.' So, I didn't really think about why I needed sanitary protection the size of sofa cushions changed several times an hour. I didn't ask why the toilet bowl looked like a butcher's bucket. When my heart was going like the clappers and I nearly fainted in the lift, I put it down to not having time to eat and running around with these teenagers; not acute anaemia. And it wasn't the first time: 'Maybe I should go to the doctor, but when and why? Surely this is something that all women go through it a certain age.' But the time did come on that day to do something, because when I was standing here in this Chamber, talking about women being treated as sex objects, the contents of my womb and God knows what else were flooding down my legs and pooling around my shoes.
The doctor asked me if I had a history of ovarian cancer in the family. That didn't really make me feel much better. And several months later, after a completely unrelated minor operation, the surgeon casually mentioned to me that I had stage 4 endometriosis, and I quote: 'This is a mess, and because of your age, it's probably not worth operating.' Nicely put, but confirmation, at least, of the source my pain. Members, this condition is nasty, and apart from coping with these symptoms, my own experience is still common. Women will tell you that this disease makes them feel dirty, secretive, anxious about where the nearest loo is—toilet closures really are a feminist issue—it crushes their libido and wrecks intimacy, as Angela pointed out. And women will also tell you that despite describing all the symptoms I've just horrified you with, GPs don't think endometriosis when they hear them, and that's the point in our motion; point 2.
I would also say without criticism that specialists don't always have many tools to combat this disease. There's still too much they don't know, and as we've heard, there's no pathway for treatment. Now, women want to be well. One in 10 of us push through this stuff, as Vikki said, month after month, feeling like hell, meeting social expectations because talking about this wrecking ball is just too embarrassing. Minister, I want you to understand that this is not a cinderella disease; it is a real ugly sister of a disease—a real ugly sister—and I hope this debate captures your attention.