WRITING|| Endometriosis.

I’ve been hesitant to write about this topic for months now. Partially because I’ve been feeling shy about tackling a subject that is so important to me. Yet mostly because I didn’t know how to do it justice in one simple blog post. But here goes.

I am 22 years old, and I have recently been diagnosed with endometriosis; a condition which affects 175 million women across the world and is the second most common gynaecological issue in the UK. And for those of you reading this who may not know anything about it – there’s sadly still a certain stigma attached to reproductive issues – the Endometriosis UK describes it as a ‘condition where cells like the ones in the lining of the womb are found elsewhere in the body.’

We still don’t know why it happens, if its hereditary, and how to stop it from occurring. The only thing we do know for certain is that it is a deliberating condition with pain so severe that it can knock you out for days on end. The other difficulty is that everyone’s experience is different. Some women who have severe endometriosis have little pain and vice versa. I fall into the latter but remember being reduced to tears in my university library, trying to write a final year essay and being in excruciating pain and frightened because I didn’t know what was wrong.

I didn’t want to write the play-by-play about how I was diagnosed – it’s a familiar story for most sufferers involving several GP visits before being taken seriously – but it resulted in eventually seeing a consultant and having a laparoscopy (key-hole surgery) to get a diagnosis.

As anyone who has the condition will know, being diagnosed with a chronic illness is tough. Knowing that this thing will continue to affect you for years to come, potentially forever, is tricky to get your head around. 

Like with anything in life, people handle diagnoses differently. Some will go out and run a marathon for a charity supporting their illness. Some will educate themselves extensively on natural remedies. Apparently one plant-based diet can help sufferers manage their pain; I’m currently researching alternatives that don’t see my diet resemble a #glutenfree, #tastefree, #funfree food blogger Instagram feed. There's no way in hell I'm cutting out coffee but I should realistically use the excuse to reduce my sugar intake!

Instead, my way of coping is to scour the internet high and low to read about other people’s experiences in the hope that it will make me feel less alone.

Because I am most certainly not alone. But, at times, it definitely feels it. Sufferers are hesitant to talk openly about the condition because we spent years being told that cramps are just a part of life. On average, it takes a woman eight years to be diagnosed and in that period, has to visit her GP ten times before being taken seriously. While it has now been acknowledged that the NHS has to do more to help endometriosis sufferers, it’s not a surprise that we aren’t talking about it openly. Fighting for a diagnosis doesn’t exactly inspire sufferers to speak about life with the disease. But, as someone on the other side, I can’t help but feel the absence of a community of fellow sufferers. There are millions of us worldwide, after all.

No one is talking about endometriosis and its driving me mad. That’s not to say that the charity, Endometriosis UK, don’t do amazing work to help sufferers. I’m new to this community after all. But when I say ‘talking’, I mean really talking. Engaging, sympathising, understanding, listening. For this condition to become more widely understood.  

Sure, there’s been plenty in the news recently. In hindsight, 2017 is a good time to be diagnosed with the condition. There’s more exposure in the media now more than ever. Some better than others, of course. Never have I experienced rage like when I read about this study exploring how endometriosis affects the sex lives of men whose partners suffer from the condition. Somehow this was certified by the University of Sydney. There’s a long way still to go to say the least. But Lena Dunham - my feminist girl crush - is great for using her public platform to raise awareness of the disease and there's a strong presence of 'endo sisters' on Instagram as I've recently discovered.

I suppose I just want to be part of the discussion – to help raise awareness of this condition and eradicate the infuriating stigma attached to ‘women’s issues’. I can’t help but wonder if we’d know comparatively little about a disease that causes men pain and affected their reproductive health. My inner cynic says not.

Which leads me to the present. Now that I have the diagnosis I so desperately wanted – there were times when I questioned if I’d made this whole thing up in my head – I feel kind of stumped. It’s almost anti-climactic, as if I’ve finished reading a novel with lots of twists and turns and am left unsatisfied. I guess I’m just trying to figure out the next chapter.