Ahead of our sold-out panel discussion on When will women’s health be taken seriously?, Rachel Brooke, National Campaigns & Events Manager, Heart Research UK as she talks through a very personal experience.
I can only speak from personal experience and certainly don’t want to bash the NHS –that’s not my place – but if it helps here’s a bit of my ‘story’
I have suffered from endometriosis from a very young age, with horrible ‘accidents’ occurring through the years – not long after I first started my period, I remember bleeding through my clothes, on the chair and floor during a lesson at middle school. My teacher sent the other kids home to avoid embarrassment, then kindly helped me clear it up, literally had to wring my skirt out there was so much blood. My mum took me to the doctor and he said it would settle down as I got older, but didn’t give any advice or choice of referral to a specialist. It never did. I struggled all through my school life, every month in such a mess and absolute agony. I used to spend the first day of every period rocking in pain in my bedroom with a hot water bottle, or once, passing out in the middle of the city centre on my way to buy painkillers on my lunch break from my Saturday job in a shoe shop because the pain was that bad. I regularly used to pass out in church on a Sunday as that was often the day my period started, although there wasn’t much regularity to them.
As a young woman, I used to suffer terrible mood swings, and when my period came it was torture and I often used to have to cancel plans and collapse at work, until I moved into a house in Manchester with a group of people. It wasn’t until they saw what I was going through and told me that it wasn’t normal that I decided to seek help. I had a laparoscopy at Withington Hospital and was told I had endometriosis.
I was prescribed Buscopan (something to treat stomach cramps) and Ponstan (to treat the heavy bleeding), neither of which really worked. I went to the doctor many times over the years, but they never seemed to know anything about the condition, nor how to help, so just kept sending me away prescribing a variety of contraceptives. In fact, like many other women I know in similar positions, I simply wasn’t ‘listened to’ and felt that they thought I was exaggerating or being dramatic. Eventually, it seemed like I was being a nuisance, so in the end I decided just to ‘put up and shut up’.
“When I was diagnosed with endometriosis I was told I would have problems conceiving, so I was really surprised when I was 28 I became pregnant with my first child – the relief of those nine months of being pregnant and not having periods was immense.”Rachel Brooke
When I was diagnosed with endometriosis I was told I would have problems conceiving, so I was really surprised when I was 28 I became pregnant with my first child – the relief of those nine months of being pregnant and not having periods was immense. I went on to have two more children, and to be honest, my periods were more manageable – I still had a lot of pain and they were heavy, but not like before. I still had the mood swings and was diagnosed with depression and prescribed medication (anything to shut me up eh?)
Little did I know that less than a decade later, I would start with perimenopause – this threw my periods back into chaos, heavier than ever, sometimes being unable to leave the house, spending a fortune in sanitary wear. My mood swings and sweats were through the roof, but because I was a single parent, working full time and caring for my elderly mum and because of my previous experiences, I didn’t seek medical help as I just simply didn’t have the time, knowing that I would just be fobbed off anyway.
Then a few years ago, I had to go to an important meeting at Scottish Parliament, as soon as I arrived, there was a ‘whoosh’ which ended up flooding all my clothes, even in my shoes – it was so embarrassing, I had to try clean up in the toilets and continue the meeting, speeding off straight afterwards to purchase a new set of clothes to travel back in. For some reason I decided this was the last straw and went with indignation to my GP, demanding a hysterectomy. My child bearing years were over, but the doctor still didn’t recommend it unless it was absolutely essential – I had to beg that it was and I couldn’t live my life like this anymore.
Eventually, I was granted a full hysterectomy, which apart from lunging me into medical menopause was the best thing ever after suffering for 35 years of my life.
My three daughters also suffer in varying degrees and I have urged two of them to seek medical help, so as not to spend their lives the way I have, always having to think about when the next period is coming and what it will ruin, dreading how much pain I’ll be in, making sure I’ve got strong painkillers and a hot water bottle to hand. I’m really hoping that the landscape is changing (especially with charities like Endometriosis UK contributing to parliamentary debates) and that they won’t have such a hard time getting help. I also encourage them to talk about their menstrual cycle openly, especially with their male friends and boyfriends – why should women be embarrassed about something that is a normal part of physicality?
It’s unbelievable to me that we’ve built spaceships, but still, so many women can’t live their full lives because of issues with women’s reproductive health which aren’t being researched or talked about.
