I just got home from seeing my Obstetrician/Gynaecologist and I still have his words ringing through my ears: “The endometriosis is everywhere, it even took over your appendix … you’re in trouble.”
Whenever we hear bad news we instantly think ‘Who can I blame?’ and at the moment I can only feel anger for the people who didn’t believe that my condition was real … “What’s ‘Endo-flippin-osis?’” a former colleague joked.
Now I want to say, “Don’t mock it knob, it’s called ‘endometriosis’ and it’s robbing 1 in 10 women of their freedom and their ability to be a mother.”
For people who aren’t aware of endometriosis, it’s endometrial tissue that resides outside the womb.
I’d like to put it in simpler terms though: it’s basically big round balls and small dots that cause a shitload of pain for women, often crippling them. It also causes infertility in some women as well as a horde of other problems.
I am one of those women. I have now been told that I have a 1-5 per cent chance of falling pregnant naturally. To say I’m devastated would be an understatement.
I don’t feel that I’m a real woman. I know I shouldn’t feel this way, but I do. But that’s okay. It doesn’t change the way I will love my children if I manage to have them, or how I will be as a mother.
I’ve recently separated from my husband, so my battle for children just went to a whole new level.
IVF success rates go down quite substantially for women over 35. That gives me a year to work some serious magic.
I have had endometriosis from the age of 17 – it sadly runs in my family. The contraceptive pill has helped me keep the pain under control for the past decade but it hasn’t controlled the endo. Mine has been getting steadily worse during that time period, eventually taking over my bowel and uterus.
In March 2013, I nearly lost part of my bowel and one of my ovaries after they became fused thanks to endometriosis. I had major surgery to detach them and luckily, the doctor managed to save both organs.
The surgery also cleared the endometriosis build-ups, with the doctor giving me six months before it would all grow back.
One year later, I was preparing for more major surgery. The original endo grew back, and brought an army of friends with it.
To make matters worse, I went off the pill to start trying for a baby and so I now get to feel every ounce of pain that endo brings its sufferers every month.
I go into self-lockdown for 24 hours at the start of each cycle. I can’t move. Every step I take I’m in severe pain. Ironically, it feels like I imagine childbirth to be like, which is something endo might mean I never experience. It is horrific.
But often a bigger battle can be finding a partner that understands – someone who is prepared to go to war every month, his helmet on and sword drawn ready for battle.
He must find immediate sources of chocolate, he must be willing to fill and refill my hot water bottle and he must be on his best god damn behaviour to avoid igniting an all-out battle.
To partners, employers and non-sufferers: Endometriosis is a real disease. When a woman with endo complains of period pain, shit is real. If she calls in sick, you better bloody believe she is sick enough not to come in – she can’t walk.
Partners, it hurts like hell to have sexy-time with endometriosis. You need to be gentle and you need to make love to us on our backs. It’s a medical fact and I’m pretty sure we can get a medical certificate advising the best love making is done the way WE want it.
Endometriosis is a horrible disease. There are different levels of pain and damage but all endo sufferers feel the same in the sense that we just want some understanding. It’s real and we need your support. Sound it out with me E-N-D-O-M-E-T-R-I-O-S-I-S. Learn it and remember it.
Mel Grieg is a former radio host and reality TV personality.