An Open Letter to An Endo Sufferer: Don't Give Up - Guest Post on Wellbeing of Women
Recently I was approached by Wellbeing of Women to write a guest post for their website, An Open Letter to An Endo Sufferer: Don't Give Up. Wellbeing of Women are a charity funding medical research into women's health, pregnancy and childbirth - including endometriosis. It's charities like these guys that we need to rally round and support, as these are the ones looking, pushing for a cure and striving to understand how and why this disease continues to grow and take over so many lives.
Wellbeing of women funded Professor Horne, who made the discovery that endometriosis behaves in a similar way to cancer cells. The researcher is now investigating whether endometriosis cells can be treated in a similar way to cancer, with much smaller levels of medication.
The lovely people at the charity asked me to share my story in an open letter, in hope that it may empower women to not give up. Whilst I'm not sure my story can do that for everyone, I have written words that I hope will reach into the core and inspire you to find the strength to keep going a little further. I have been in blacker days than I ever could have imagined, I have called up suicide help lines because I was scared of what I would do, but I'm still here, and I am so glad I am. Every day we are inching closer to an answer, every day more people are becoming aware and every day we are learning better ways to manage it. I know change is coming, and I want to be around for that.
You can read some of my story below...
When I was diagnosed with endometriosis, it wasn’t really conveyed to me as a big deal. I had zero interest in female ‘stuff’ and quite frankly wanted as little to do with my body as possible. I got on with the operation, recovered, and essentially pretended it never happened and wouldn’t happen again.
Society seemed to favour this.
There was little information, the doctors didn’t seem concerned and no one around me thought much more of it other than ‘women’s issues’ that you didn’t talk about.
my life begun to revolve around these complaints, and the world seemed very dark to me
Fast forward a couple of years later, and my pain came back in one sudden, cripplingly blow. At that point, I was older and wiser, and was more aware of the injustices and prejudices that were circulating our society. I visited my GP and was told to come back when it was ‘excruciating’.
Excruciating came about quickly, there was no slow build up with the return of my endometriosis symptoms. One day they weren’t there and the next, they affected every moment of my waking day. From fatigue and depression, to stomach issues and bloating, to extreme PMS and agonising pain, my life had begun to revolve around these complaints, and the world seemed very dark to me.
Depression had a steel grip around my heart
A long story including various gynaecologists, scans and a mistake in the admin system resulted in me having to wait over two years to have my second operation. During this time, I was spiralling into a very deep hole. Depression had a steel grip around my heart, my mind was clouded with fatigue and I felt helpless. I couldn’t believe how limited the support was out there. Very few people and organisations seemed to care. I was falling through the gaps, and there was really no safety net to catch me. I hunted online, and found excellent charities, but they were swamped and overworked, and as young ambitious woman who wanted to a better quality of life (rather than fertility being my main concern), I couldn’t fully resonate with them either. I occasionally found a blog that had been started years ago and forgotten about, and there were one or two more established figures who I got most of my information from. But still – it wasn’t enough.
Finally I was signed off from work.
That was when I started This EndoLife – over two years ago and it’s been a whirlwind of highs and lows. It’s not always easy sharing my story, sometimes I have to remind myself that I need support too. But when I get emails or direct messages from women letting them know that This EndoLife is helping them, it lights me up and it makes every low worth it.
To continue reading the letter, click here.
Needing help to manage endometriosis? Have a look at The Endo Toolkit Online Programme.