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Kate Dyson

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Kate is a content writer, social media obsessive and community creator. She's also mum to three kids, two dogs and unsurprisingly, a lover of wine.

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Endometriosis and Me: "My hysterectomy wasn't the promised cure"

Affecting 1 in 10 women, it can take on average 6-7 years to get a diagnosis of endometriosis due to poor diagnostic pathways and lack of research into the disease. Endometriosis is as common as Asthma and Diabetes in the population, yet continues to be a much misunderstood condition.

In our series, Endometriosis and Me, we talk to three women - Antoinette, Kate and Laura, who have varying symptoms of the disease. With The Endometriosis Foundation, Jude is developing a research partnership that aims to explore the relationship between Lower Urinary Tract Symptoms (such as incontinence) and Endometriosis to provide grounds for developing education for healthcare professionals and actionable insights for those affected.

Meet Kate Dyson

Meet Kate, mother of three and creator of The Motherload Community, the UK’s largest parenting community for women. Kate’s endometriosis was discovered during subtotal hysterectomy surgery for adenomyosis. She shares her story:

Kate's Story

“Looking back, I think the first indication I had that I had endometriosis was when I was about 19. I had a lot of sensitivity in my tummy area, and bloating, and was told it was IBS. Over the years, I must have spoken to the GP so many times about related symptoms but they were always something else - shingles, a strain, ‘bad’ periods. This went on and on, and I felt such a nuisance in the end.” 

After having her third child, Kate experienced a sharp increase in symptoms with heavy bleeding and pelvic pain amongst other more bizarre symptoms like pins and needles in hands and legs, and pain in the appendix area. Finally, adenomyosis was diagnosed, a similar disease to endometriosis but one that is contained in the uterus. “I saw a consultant and we agreed that I would have a subtotal hysterectomy to deal with the adenomyosis. Unfortunately, during the operation they realised I had Stage 4 endometriosis with significant lesions that were fusing a lot of my organs - bladder, bowel, cervix and rectum were all joined to the uterus.”

While recovering from the hysterectomy, Kate started to experience issues. “The first thing I noticed was that I was having problems going to the loo. I’d had issues with the catheter and retention after the operation, and I thought this would settle down. I was having problems with not knowing when I needed to go to the loo - like the 'signal' had stopped. Then when that eventually came back, the urgency stayed and even now, if I don’t go to the loo the minute I feel that ‘call to wee’, I’ll leak. To be honest, it’s miserable.”

About six weeks after the surgery, Kate’s ovaries surgically ‘failed’ and she started experiencing menopausal symptoms. After taking HRT for six months, bleeding, cramping and pain in her pelvic area started that was so bad at times, she couldn’t walk or and was regularly sick, especially late at night. Kate had complications on her bowel too. “When I have a flare up I am so constipated it’s unreal. The advice is always a bit apathetic - eat small and often meals, take magnesium, use laxatives. How many laxatives can you take?! I feel I was mis-sold the hysterectomy on the basis that it would cure my disease. In fact, things are worse than ever."

After a particularly heavy bleed, an urgent referral was made to Gynaecology. “It was awful - how can you have a period with no uterus? Unfortunately for me, the HRT had seemingly stimulated the endometrial tissue in my cervix and this was causing the bleeding. I’m now in medical menopause, via GnRH analogue injections that I have monthly to try and manage the bleeding and ‘cycle’. I’m hopeful this will manage it without the need for further surgery.”

Kate feels passionate that more research, funding and training into endometriosis is desperately needed. “I’m living with so much pain and I’m in constant confusion about what’s happening inside of me. Every part of my life is affected by the pain of the disease, and I think this kind of chronic condition is something of an invisible illness. The biggest issue is that it feels like you get to this stage and there is no agreed way to treat you further so you go round and round in circles. I’m so hopeful that the work of the Endometriosis Foundation will help women get the answers they need, and deserve."

You can read more from our series, Endometriosis and Me here.

For advice and support, visit https://www.theendometriosisfoundation.org/.

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