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We Should Be Talking About Endometriosis - Period

13/10/2015 17:25 BST | Updated 13/10/2016 10:12 BST

It's just not good enough to hide behind the taboos - we get the idea from well known advertisements (for example, those that promote periods as a beautiful blue liquid) that it's all, well, just a bit TOO scary. But this attitude, this inability to really look squarely at womanhood and say 'yes, we have PERIODS, we bleed', it comes at a pretty huge cost.

And we don't mean at a financial cost but yes, that does feature. We're talking about the one in 10 women - you can guarantee that the vast majority of people will know at least one - that have this common gynaecological condition. Endometriosis.

There is absolutely nothing about this disease that isn't a bit yucky. We could talk all day about the excruciating, mind-numbing pain - this isn't about a bit of pain when we have our periods. At its worst, we're in pain all the time. Pain with sex, pain when going to the toilet, pain before periods, pain, pain, pain... you get the idea. So when we get on to the range of bowel and bladder symptoms too, you can understand why our pleas for help may be greeted with the odd grimace.

And then, as if to add insult to injury, all too often we are ignored. Yes of course, I can smile and even laugh when I'm in pain - after all, if I hadn't created this façade, how on earth would I have survived? I can't even count the number of people who dismissed my pain - but I can tell you about the gynaecologists who managed to ignore it. Totally missed it.

By the time I found a gynaecologist who actually understood endometriosis (because it's only the second most common gynaecological disease), the disease had grown right through my bowel and bladder walls and so I was bleeding through these too. I practically skipped in to see my GP after having my rectum and part of my bladder removed - after all, the pain relief was almost instant.

I don't find it shocking to tell people I have had 14 endometriosis surgeries in a 10-year period, or even to say I have been a pensioner since my late 30's after bladder complications put an end to my career. I don't find it hard to be left with secondary lymphoedema, or to be left self-catheterising because my bladder has given up working properly after so many surgeries. I have even come to terms with childlessness.

But I will always be shocked how we can ignore such a large problem that blights so many women. That women still face an average diagnosis time of seven to eight years still confounds me. That it's acceptable for us to be taken prematurely out of the workforce because we were left for too long without any help. That so many women miss out on motherhood. And that even with all this, so many women still struggle to access effective treatment.

You might think my story is unusual. It isn't. I could in an instant reel off the names of dozens of women like myself. We're all waiting for a time when someone wakes up to the scandal of our diseased bodies. When it becomes ok to talk about periods. When men and women know what is 'normal', when research yields both a cause and a cure for our disease. When all women have access to the best treatment for them. When a disease that affects 1.6million women and costs the UK economy £8.6billion every year in lost working time and healthcare costs is considered a priority.

That time is not upon us - yet.

Endometriosis UK, a tiny charity dedicated to providing support and information, is determined to shine a spotlight on this life-devastating disease. They are campaigning for earlier diagnosis and to improve the quality of services to women with endometriosis. Endometriosis UK are calling for the government to develop a National Strategy for endometriosis. Their petition is already at just over 17,000 signatures. But they need more support.

If you're a women living with endometriosis, get involved in Endometriosis UK's #TooLong campaign. To take part, take a picture of yourself holding a piece of paper which states how long you waited for your diagnosis. Add the hashtag #TooLong and publish it on Twitter or email it to communications@endometriosis-uk.org.

To support the work that Endometriosis UK do, you can make a donation via their website.