Vicky’s story – leading on self management of endometriosis

"I enjoy supporting others who get what life with endo is like...and want to ensure people know they are not alone in their fight!"

“In March 2017, I began to experience lower back pain daily that wouldn’t go away. After a few trips to different doctors, one suggested checking my cancer markers – turns out these were higher than they should be and so I was referred for scans and to gynaecology urgently. After seeing gynae, I was sent for a MRI scan, which showed up suspected endometriosis – a word I’d never heard before – and suddenly the urgency with which I was being seen stopped! I was simply told I’d have to see a specialist and have surgery to confirm my diagnosis, both of which happened some months later.

After surgery, my Gynae wanted to put me into chemical menopause to “make his job easier”, I refused as he didn’t seem to have the time to tell me what it would do to my body. During this time, my quality of life was low – I lost around 1.5 stone in weight, I was experiencing pain daily and my periods seemed to worsen resulting in me having to take time off work.

In 2018, I made several 100-mile round trips to seek support from my closest support group in Fife and loved how you don’t have to justify yourself at meetings and can simply just be. It was after this that I volunteered to set up a group local to me in Tayside and here I am, almost 3 years later, still doing so. I enjoy supporting others who get what life with endo is like and where no topic of conversation is off limits and want to ensure people know they are not alone in their fight!

As for me, I’ve been on a few different treatments since surgery and whilst my symptoms in general are under control, I still live with the condition and all that comes with it. My advice to others would be you know your own body better than anyone else and don’t feel forced into doing something you don’t want to do.”

Vicky is nominated for the Individual Transformational Story of the Year Award at the ALLIANCE’s annual Self Management Awards taking place during Self Management Week 27 September – 1 October.

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