This week is Endometrosis Awareness week in the UK (and March is Endometriosis Awareness month in the USA). I posted this old my old blog, Musings of a Koala, a couple of years ago.
Raising the Profile on Endo – Oct 2nd 2007
The topic for the day is endometriosis…what’s that? I hear you ask…well exactly.
2,000,000 women in the UK suffer from endometriosis – but that’s likely to be an underestimate. Why? Because most people don’t know anything about it’s existence, and it’s difficult to diagnose. There is not yet a cure for endometriosis and although there are several theories, no one knows what exactly causes endometriosis in the first place.
Endometriosis is a disease where cells which are similar to those in endometrial tissue are found in places outside of the uterus. The cells respond to the hormones during a woman’s menstrual cycle, causing them to grow, break down and bleed. The internal bleeding has nowhere to go, causing pain, inflammation, lesions, scar tissue (adhesions) and cysts. The only way of diagnosing endometriosis is through a laparoscopy (an operation which basically involves a small incision in the abdomen, to snake a camera about inside you!)
The only way of treating endometriosis is to treat the symptoms, and with pretty much all the treatments women will get side effects from them. And did I mention that surveys have shown that the average time to taken to diagnose endometriosis from the onset of the symptoms is 8 years???!
What’s the impact?
30-40% of women with endometriosis are infertile.
• 73% have had their relationships affected by endometriosis.
• 6% claim benefits due to endometriosis, which is now recognised as a disability in some countries.
• 82% of women are at times unable to carry out day-to-day activities due to endometriosis.
• 38% have had their job affected with:
-42% having lost their job
-39% having to reduce their working hours
-19% having to change their job
(Statistics taken from Endometriosis UK website)
I’ve taken a real interest in endometriosis after being told by my GP that there was a good chance I had endometriosis early last year. I still don’t have a diagnosis, and gave up on seeing the consultant in Aberdeen shortly before deciding to leave the city this year. However, my symptoms and the side effects to the treatments they have given me have had a huge impact on my relationships with friends and family, on my education and on my working life. It really sucks. There is also the factor of trying to weigh up the treatments with my values and beliefs – some of the treatment options I have been offered I have refused from the moral standpoint I chose to take. What really infuriated me was that I was only able to make those informed choices because of the medical knowledge I had from my university studies (I did a lot of focused study in the areas of reproductive health) and pregnancy crisis support training.
Whether or not I have endometriosis, I hope that I’ll be able to raise more awareness and support for women who have this horrible disease and their partners (because I know that it is really tough on the partners too).
