Endometriosis. The lack of support continues.
Something happened today that brought back loads of memories.
From time to time an email turns up in my account from change.org. I always look at the latest petition and see what I think. I don’t support them all because I would spend my life signing them but today…today was different. It was concerning endometriosis and the fact that Endometriosis UK want to get a faster diagnosis for women and better education amongst medical professionals.
I was diagnosed with this condition over 20 years ago but it took them a good 4 years to find out what was wrong. The doctors had no clue of what to do about the pain I was in. At one stage I was told I may have an ectopic pregnancy despite the fact that I told them there was no way this could be the case.
If you haven’t heard of endometriosis, it is a condition that affects women where the endometrial cells which line the womb migrate to other parts of the body. Each month these cells react the same way to those in the womb, building up and then breaking down in line with a woman’s cycle and, because they are not enclosed in the womb, the blood has no way of escaping.
It can be debilitating causing heavy and painful periods and, in some cases that I know of, women are consigned to wheelchairs. It can cause infertility, fatigue and bowel and bladder issues as some of the cells can stick the internal organs together.
I remember distinctly the first time I found out about endometriosis. I was sitting in the gynaecological waiting room of the Royal Surrey Hospital in Guildford. There was a leaflet that caught my eye and I started to read it. It sounded just like me. When I went in to see the consultant, I took the leaflet with me and showed it to him, explaining how I felt.
As a result, I was booked in for a laparoscopy. This involves a camera being inserted through the belly button under general anaesthetic. When I came round, the nurse explained to me that I had endometriosis on the ligament supporting the left hand side of my womb.
I was given Danazol at the time but it caused me so many problems that I reverted to taking the pill without a break to prevent any periods. This seemed to help. It also helped that I knew what I had and, as a result, found it easier to manage the pain.
The thing is that I would have thought that after 20 years, the awareness and understanding of endometriosis would have improved but sadly this does not seem to be the case. When I shared the petition on my Facebook timeline I had a number of ladies comment on the post. Those that I hadn’t even realised were fellow sufferers. The majority of them all informed me that it had taken them years to receive a diagnosis – one of them, a fellow blogger, went left untreated for 20 years.
The other thing that beggars belief is the fact that 1.5 million women in the UK suffer from endometriosis. That is one in ten. An astounding figure. Surely by now the medical profession should be far more advanced than they were 20 years ago but it would appear that they are not.
You may recall that I supported the launch of the Medical Innovation Bill by Maurice Saatchi back in September 2013. Finally, on Friday last week, it got passed through to the House of Commons and is on the verge of becoming law. I am hoping that endometriosis will be something that can be part of the medical investigations that this will allow.
In the meantime, Endometriosis UK need your support. They need 100,000 signatures on a petition to call on MPs to debate this matter in parliament.
A bloody brilliant post Vicky x
Thanks Emma xx
Great post, have shared and signed petition. I don’t have endo but do have other things going on which affect fertility – there should definitely be more awareness and experience from GPs, not just specialists. #pocolo
I totally agree Yvette – and thank you x
Gosh what a horrible condition. I had a colleague who had this and monthly she was in so much agony that she would have to go home…if she could make it. If not she would collapse on a sofa at work. Well done for raising awareness of it and for encouraging people to sign the petition. Let’s hope they get lots of signatures. Thanks as always for hosing #pocolo too.
It really is awful – thank you Vicki x
I also get those change.org emails and I wish I could sign them all and spread the word for them all too. Good for you for picking one that’s close to home and sharing your experience. I have heard of it before in passing but never knew what it was. I am sorry you have to battle with it as it sounds so very painful bless you. You are so strong for pushing through it and helping others by raising awareness too. Thank you ever so much for linking up to Share With Me. #sharewithme
Thanks Jenny – I am much better off than many women who have this x
A good cause we women should push for. Will sign the petition =) #sharewithme
Thanks Merlinda 🙂 x
Thanks for sharing this, i think more people should know about it. I’ve signed the petition x x
Thank you Suzanne xx
This is definitely a taboo subject and one people very rarely talk about! Will head on over and sign x
Thank you x
I have it. Found out as part of my infertility investigations, but only because the head of the department at the hospital took pity on me and agreed to a laparoscopy. I had no idea up until that point why my periods were so heavy and debilitating that I used to pass out every month.
I still have it now because the only treatments they offer involve long periods of not getting pregnant, which I never wanted to encourage when I was trying to conceive.
Thanks for raising the issue.
No problem – and thank you for sharing your experience x
Gosh, I didn’t realise the rate was so high. I’ll be signing, thank you Vic for sharing this. Hopefully this is pushed further up the research agenda and we will see progress x
Thanks Kiran – it really does need much more recognition x
Definitely surprised it’s not higher up the research agenda. It’s not something that any of my friends have mentioned, compared with other female problems that crop up.
Me too Emma – thanks for commenting x
Signed. I thought it was fairly common, but it’s true I can’t remember seeing many people talk or blog about it x
Thanks Steph – I know! You would think there would be more x