Two weeks ago my body started doing things it isn't meant to. My endometriosis is raising its head again and unfortunately, two weeks down the line, it's still not right.
I am in Belgium at the moment to spend time with Mum around the time that Dad died 6 years ago. Dad wasn't one to be embarrassed about 'women's problems'. He didn't necessarily know how to deal with the howling teenager and young adult who would cry, collapse, kick, roll around on the floor and scream with the pain. But he'd be down the shops buying me all the stocks I ever needed. It didn't bother him to go up and down the aisles in the supermarket looking for the 'super-absorbent', or 'nighttime' or the ones with 'wings'. He'd say 'it's the purple ones, isn't it'. He'd be down the chemists getting me painkillers. Mum would be holding my hand and calming me down. Explaining to me that it was 'only pain' and it wasn't going to kill me. They'd have the sleepless nights when I had the sleepless nights. And with every month that passed, and with every year that passed, the pain got worse and worse to the point where I wouldn't be able to work and I'd often wake up collapsed on the floor in the bathroom. My PhD colleagues knew when it was 'the time of the month' because there was only one dress I could wear that would be large enough to go around my stomach that would swell up so much, I felt my skin hurt. I was also happy with codeine! royal blue cocktail dresses
Eventually, ten years down the line, I was diagnosed with endometriosis stage four during an investigative operation. It was a Monday in May 2003. The endometriosis was everywhere. They removed everything they could but they hadn't 'prepared' my bowel so they couldn't operate there.
I was writing up my PhD at the time and thinking about it now, I realise how lucky I was to have a very understanding PhD supervisor, Robin who I'm pleased to say is in my friends' list! I specifically remember calling him from my hospital bed on the Wednesday (I think!) to apologize that I wouldn't be back at work that week after all and had to take at least two weeks off work.
I can't help but think that if we'd spoken about things more at the time, that me, and all the others I know, would be diagnosed sooner than 10 years. I believe this has now moved down to 8 years which is great progress, but it's still not good enough. When we had all those health visitors at school, could we not have had 10 minutes on period pain and what's 'normal'.
There's no cure, and we don't know what causes it. But there are things we can do to slow it down and prevent its damage. Damage that can ravage your insides and while you can have surgery to remove the 'growths', it will leave scar tissue. Physical and mental scars. It's also one of the causes of infertility.
So why am I saying it again? Because today, I was thinking how sad it was that Dad had died (obviously) and will never meet my children. Then I was even sadder because I'm 40 with endometriosis stage four and I might never be able to have children. Could an earlier diagnosis have changed things? Well, it wouldn't have changed my previous relationships, but it could help the physical damage to my body.
I am lucky. I have an excellent consultant. I have the money to go and see him privately quickly if I have to. I will still have to wait for my turn in the NHS and it usually takes me 9 months for an appointment (the irony!!!). But I can go and see him privately for a quick chat to reassure me that nothing horrendous is happening. Well I hope anyway.
But please, whatever your condition. Whatever your symptoms. Talk about it. Seek help. Don't suffer in silence. Be it physical or mental. Talk to your mates. Talk to your parents. Talk to your children. Talk to your siblings. Talk.
Just in case you hadn't looked up the symptoms of endo yet, here they are again: