This is hard for me to write. It dredges up all kinds of emotions, many of which I have subconsciously buried in the dark corners of my mind. I tell myself maybe just leave them there, then I realise nothing would ever change if I did…
My endometriosis diagnosis took 26 years and came when I was 38 years old. That’s a bloody long time in any scenario. So, imagine one where you bleed like a horror film, not all the time, but often enough. Have pain so fierce that you struggle to communicate exactly how it feels, but it’s rarely believed by others. Your mental health is constantly balancing between ‘can cope’ and ‘I just don’t want to be here anymore’. But you smile, laugh, turn up and carry on as much as possible, because outwardly, you look no different to anyone else.
I was a firefighter for 20 years and my diagnosis came right in the middle of my service. I had become an expert at masking. Masking the pain, masking the depression and masking the despair that turned my life upside down every month.
“I was told by a male Fire Service GP that my imagined pain was just one of those things that we think we feel, but there’s nothing causing it. My pelvic organs were fused together by endometriosis. And I’d still been saving lives and putting fires out.”
Seeking diagnosis
Relief didn’t even come with a diagnosis. I’d figured out I had endometriosis a year prior to my first surgery. So, when it was confirmed to me that I had endo in six areas of my pelvis/pelvic organs, it was an eye rolling ‘eventually!’ moment. But there was still no cure and no adequate treatment for it. Oh, and it’ll probably come back. So great, I’m just going to have multiple surgeries. That won’t impact my life at all, will it.
I mention the 26 years for a diagnosis, but the word endometriosis wasn’t even said to me in a medical setting for 25 years. It would be scary to find out just how many times I visited my GP surgery for my painful/heavy/hideous yet ‘normal’ periods. I do know that I was given almost 20 different prescriptions from these visits. Nothing worked. A female GP even suggested that I have a child. I was single, worked shifts on the other side of the country and had no plans to have children. I was horrified. I was also told I was just constipated by another GP. I wasn’t. I was even told by a male Fire Service GP that my imagined pain was just one of those things that we think we feel, but there’s nothing causing it. My pelvic organs were fused together by endometriosis. And I’d still been saving lives and putting fires out.
I also realised, in time, that if you are a woman who does not want to have children, you kind of don’t matter in the medical world. The desire for a pain free life simply wasn’t enough to merit investigation and support.
The menopause would just be dangled in front of you like some predictable old carrot that you should be grateful for. You just had to get there. Whenever it might turn up, and it might halt your endo. Probably. Maybe. Nobody knows because no research has ever been carried out. Those scientists have been too busy making a little pill so men can have sex any time they want.
Warrior
I ended up having four surgeries in total, the last one being a total hysterectomy and removal of what was left of my internal reproductive organs. This put me into surgical menopause at 45 years old. For me, this meant my endo symptoms were finally over. But, early surgical menopause was something else I now had to navigate via the inadequate women’s health system. And that is a whole other chapter!
I probably sound quite bitter, and to be honest, when I think of all I’ve been through, I am. But, I also thank my endo battle for making me the resilient, no nonsense, warrior that I am today! Nothing phases me, because endo has kicked my arse for nearly 30 years and I’m still here.
It is said that Ginger Rogers did everything Fred Astaire did, but backwards in high heels.
Imagine if she was an endo sister too…
Adele Gorman lives in North East England and runs The Canny Lass Company, a dedicated companion and transport service for the elderly and those with disabilities.
