Monday, 22 May 2017

My Endometriosis Story

I’ve been incredibly quiet on the blogging front this year because I’ve been focused on my health and day job rather than my artwork. Last month I was diagnosed with stage IV endometriosis and although I feel nervous to write about it, what has struck me when talking to friends and family about it this that there seems to be an equal split between people who have never heard of endometriosis (I was in this camp too before last year) and people who have it or have a close friend or relative with it.

Endometriosis is a condition where cells in the lining of the womb (uterus) are found in other places in the body. These cells behave the same way as cells inside the uterus- they build up, break down and bleed monthly just like a period, but with nowhere to leave the body. This can lead to chronic pain, inflammation and the formation of scar tissue. It can affect all women and girls of childbearing age, regardless of race or ethnicity. The causes of endometriosis are not clearly understood. The only definite way of diagnosing the condition is through laparoscopic surgery (a skilled surgeon going in and having a look), there are many different symptoms but the most common include:
    Painful, heavy, or irregular periods
    Pain during or after sex
    Painful bowel movements

Endometriosis is graded in severity from I to IV depending on its location and the amount present in a woman’s body, but symptoms do not necessarily correlate to how much endometriosis there is; a woman could experience all of the above symptoms and more and have stage I endometriosis, just as a woman could feel no symptoms and have stage IV endometriosis, perhaps only discovering fertility problems when trying to have a family.

Endometriosis affects 1 in 10 women in the world. If we all banded together and formed our own country we’d be the 8th largest population in the world yet because it’s a gynaecological condition it’s still a bit of a taboo subject to talk about. I wish I had known about it earlier and think it should be part of our health education as I, like so many others, have unknowingly had it for years. It takes an average of 7.5 years to diagnose. There is no cure for endometriosis but treatment options include surgery, hormone treatment and pain relief medication.

I have always had very painful and heavy periods but thought that was just the norm for me. I remember feeling like I was going to faint during lessons in school because they were so bad but didn’t go to the doctors about this until I was at university. I was put on the pill and prescription painkillers to try to manage them. They were still bad by ‘normal’ standards but did improve so I didn’t think any more of it. I became more symptomatic last summer and after my excellent doctors examined lots of different possibilities, was referred to a specialist relatively quickly. My laparoscopy revealed that I did have stage IV endometriosis and a couple of weeks ago I had excision surgery including having a section of my bowel and an ovary unstuck from my other organs. I feel incredibly lucky that my tubes and ovaries are clear which hopefully shouldn’t affect my fertility, and even though the operation will take a little while to recover from, I’m already starting to feel better. I may need to have additional treatment or surgery in the future but I know that years’ worth of damage is no longer in my body. Unfortunately many women have a negative experience on the road to diagnosis because it’s such a difficult condition to identify but my experience has been nothing short of excellent.

You can find out more about endometriosis via this excellent TED talk or the Endometriosis UK website.

I think the best way of making sure that more girls and women don’t have to wait so long for a diagnosis is by raising awareness and that’s why I’ve written this blog post. If you, or your friends, daughters, partners or sisters are experiencing any of these symptoms and they are interfering with their everyday living, don’t be embarrassed to talk about it and persuade them to visit their doctor and ask about endometriosis.

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