Guidance Issued to Doctors on Endometriosis (NICE, UK)

NICE (National Institute for Health and Care Excellence) https://www.nice.org.uk/ in the UK has issued guidance to doctors to help them understand more about endometriosis and advised not to ignore women who present with chronic pelvic pain.

You can read the article in the Guardian newspaper here.

The main thrust of this is not to ignore / dismiss women who present with chronic pelvic pain. This is great news. I truly hope women will be listened to properly & trusted to know their own bodies. This is a far cry from my own experience until I found a female doctor who listened, cared and left no stone unturned.

Honestly when I think back to sitting with GP explaining I’d passed out again with pain & be told to take an ibuprofen. I’d be saying, by way of explanation, that the pain is worse than childbirth, which was no exaggeration. And anyway, labour pains are good pains because you know it’s your body contracting to push out your baby, and will be over when baby is born, unlike endometriosis which goes on and on, twisting your organs viciously around your body and making you fall to the floor doubled over with the most horrendous cramps.

I’d be crawling on the floor, begging my eldest child to run to the cupboard and fetch me the strongest painkillers possible which I would hope would take effect before I’d pass out. I’d get on the floor so as to not do myself serious damage in case the worst happened and I lost consciousness.

There would be mornings when I’d wonder whether I’d actually make the school run or not. I’d have to have a coffee first thing and take Lucozade in the car with me just to keep going. I’d be on Naproxen and co-codamol day and night just to survive.

Still, it took 5 years to get a diagnosis from the first time I passed out with pain and heavy bleeding. It didn’t help that my body reacted badly to being on the contraceptive pill which was most doctors’ answer to my symptoms, and I was worried for a long time about trying the mirena coil due to the hormonal effect. In the end, the mirena did work out well for me in stopping the heavy bleeding. It didn’t however stop the pain from the endo but it did rule out heavy bleeding as the only cause of the pain and fainting.

In my case, the endo (womb lining growing outside the womb) had grown in many places. I had a few endometrioma, which are cysts filled with endo tissue, growing on my ovaries. The left one was medium sized and had stuck to the back wall of my womb, dragging my ovary around the back of my womb.

My bowel was stuck to my womb and the surgeon described my womb as ‘locked and frozen into the wrong place’.  There was also a lot of endo lining at the back of my womb in the PoD (Pouch of Douglas – seriously, this unattractive sounding thing is an anatomical feature of women’s bodies – look it up!) and can produce horrendous back ache to accompany all the other delightful symptoms of pain.

Post surgery I feel like someone pressed reset on my body 😀 I’ve gone back in time 5 years – in a good way. I have more energy and just getting up on a morning and functioning normally without taking painkillers is like a miracle.  Knowing that I’ll be able to drive my kids to school without panicking about passing out at the wheel is an understandable weight off my mind.

Still, the other day, my daughter come out with a classic because you didn’t think my ex could stop himself from having an opinion on this, do you?

I can’t believe that I was surprised and that I let it get to me.  She said: “Daddy says your pain wasn’t really that bad. Your operation wasn’t really that serious either”.

Aarrrrrgh. Perhaps he sees himself as a GP?

I have no words to describe how I feel about him saying this to our daughter. I did, however, put her straight. I prefer straight talking, openness and honesty in all communications, including with my 7 year old daughter. She knows what she saw with her own eyes every month for all those years. And she knows that Mummy is now thankfully well and much better. She’s a smart cookie.

Yes it’s a sad state of affairs that she has to know that her dad tells lies, but isn’t it better that she knows the truth than lives in a permanent state of confusion? I think so.

Back to the guidelines and what they will mean for women going forward. It’s bad enough living in that kind of pain but asking for help and not being heard is unacceptable.

I hope that these guidelines will truly makes a difference for the very many women suffering with the hideous and very real pain of endometriosis and that it will enable them to get an early diagnosis & effective treatment. 💛💛

Much love to anyone suffering with hidden pain. Keep talking. Keep telling people how you feel. The right people will listen, care and help.

 

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