Member Story for Endometriosis Action Month

March 22, 2024 | In the News, WiR Features

Our second Member Story as part of Endometriosis Action Month shows the power of awareness and communication in diagnosing the condition. Read on to understand how stage four endometriosis can affect day-to-day life; work, exercise and even sleep.

If you missed our first Member Story you can catch up here.

Member Story

My endometriosis story starts like that of so many others – fainting from pain in school, being put on birth control as a teenager, and being sick from pain in the toilets at work. I had numerous trips to the GP. And numerous times I was told by doctors that I was just unlucky and cursed with heavy and painful periods. As the years went on, I was increasingly having pain outside of my period too. I was unable to lie in bed on my side as it felt like my ovary was going to burst. I was in my 30’s and in my local park running when I realised how bad it had become. I felt as though a burning hot knife was slicing me from ovary to ovary, my last worry being about what would happen to my dog who was with me as I hit the floor and blacked out. I stopped running and exercising. I was filled with fear about how it would affect my physical and mental health and if the pain got so bad that I couldn’t ride my horse any more.
Over a drink one evening, one of my closest friends revealed to me she had been diagnosed with suspected endometriosis. She was convinced I had it too. As she listed off the symptoms, the pieces of the puzzle came together. I went back to the doctors forearmed to push for a diagnosis and was referred to a gynaecologist. The waiting list for an initial consultation was a year. The thought of not being able to exercise and be healthy for 12 months concerned me. And I was worried about being fobbed off by a general gynecologist rather than an endometriosis specialist as I had read was so often the case. I decided I would pay to have a private consultation, which I had within the week.
“From your symptoms, I am almost certain you have endometriosis. It’s not normal, it’s not just ‘bad periods’ and you don’t have to live like this,” I was told. I was in floods of tears hearing these words in the consulting room as it was the first time in over 20 years I felt heard by a medical professional. I finally had an answer for the pain I’d been living with for so long.
Unfortunately, endometriosis often does not appear on scans and therefore it’s a real battle for official diagnosis which can only be done through laparoscopy (keyhole surgery). More often than not, you have a diagnosis and excision (removal of endometriosis) simultaneously. It also means diagnosis alone is expensive for the NHS and this, alongside a lack of specialists and the woeful lack of funding for women’s health issues, makes the waiting list for surgery ridiculously long.
The consultant put me on his NHS list for the operation and I was told that, despite it affecting nearly every area of my life, the waiting list was six years. Endometriosis grows with every period, so that was another six years of the disease growing inside me. If I was already unable to exercise, being sick and fainting with pain, how badly would the disease progress in a further six years? Would I be able to ride my horse? Work? Walk down the road? Even get out of bed?
I was hugely privileged to be able to borrow the £5,000 needed to have surgery privately within weeks with the endometriosis specialist. Despite it not showing up at all on ultrasound scans, my laparoscopy showed I had stage IV endometriosis which is the most severe category. I had scar tissue over both ovaries, sticking one completely flat. My bowel was covered with scar tissue to the extent that one half had been ‘strung up’ and suspended and the other half was stuck to itself. The disease had spread to numerous other organs. My surgeon told me afterwards that if I had left it any longer to have my endometriosis removed, I would have had to have had my bowel re-sectioned and a possible colostomy and a stoma fitted. If I had to wait six years sitting on the NHS waiting list, this would have been the reality and would have changed the trajectory of my life.
I feel an incredible amount of guilt and shame around having my surgery privately. I also have a very supportive employer and a sick pay package which meant I didn’t have to go into debt while taking time off to recover from the surgery. I struggle to read others’ accounts who aren’t in the position to self-fund private surgery without crying tears of frustration at the injustice of it all. Some women are completely debilitated by this disease. Many are unable to work, lose their independence, and can’t get out of bed. And yet because of their personal financial situation and lack of funding in this area, they are forced to wait for years and years for any hope of relief. Endometriosis is suspected to affect one in 10 women and this lack of provision for sufferers is completely unacceptable.
I had to wait 22 years and spend thousands of pounds to be able to live a life not overshadowed by pain. No woman should be in that position. My hope is that an increase in education, such as the brilliant work Women in Racing are doing by raising awareness this month, will give women who suspect they have endometriosis the confidence to advocate for their health with their GP.
Find out more

March is #EndometriosisActionMonth2024 and this year’s theme is ‘Could it be endometriosis?’ Endometriosis UK is raising vital awareness of #endometriosis this month and beyond. 

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