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Kate Dyson


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Endometriosis and Me: "I'm incontinent at 28"

Endometriosis grows across organs outside of the uterus, and one area that is commonly affected is the bladder. Whether from lesions and nodules of endometrial tissue growing on the organ, or related to localised or connected surgeries, bladder or urinary issues are some of the most common complications arising from the disease and yet often, from shame or taboo they are the least discussed when we talk about the impact of endometriosis.

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 Laura Packer

Meet Laura, who is a volunteer for The Endometriosis Foundation and professional advocate. She was first diagnosed at 21. Here’s her story:

Laura's Story

“I started my period when I was 12, and for as long as I can remember, I’ve had endometriosis symptoms.” By the time Laura was 15, the symptoms had got to a point she needed help and so she went to see her GP. “I was told it must be STDs, or repeat urine infections, which it never was.” 

At 19, and after multiple trips to her GP, Laura was finally referred to a gynaecologist, but it took another two years for her to have a diagnostic laparoscopy to check if she had endometriosis. “During the laparoscopy they found endometriosis, and they also removed cervical erosion. I was relieved at first, it felt like something had been done to fix it; but only three months later I found myself fighting for surgery again because the disease had come back. I couldn’t believe it.”

Unfortunately, at this point Laura started to experience bladder issues - namely urgency and frequency with occasional leaking. “I had a lot of pain even with minimal urine in my bladder. I had ultrasounds and urodynamics, but they told me it was due to anxiety. I was put on strong painkillers like tramadol, and put into temporary artificial menopause with GnRH analogues which was awful.”

With treatment failing and the temporary menopause not relieving the symptoms, Laura begged for a second laparoscopy with gynaecology and urology. Finally, the lap was agreed, but after eight hours in recovery, Laura woke up from the anaesthetic in agony, hooked up to machines and wires and someone over her saying ‘she’s stable’. The doctors told her that ‘as expected’, they hadn’t found anything, her bladder was normal and there was no endometriosis. 

“A few months later, I had a follow-up appointment and they told me that I had adenomyosis, and that was pushing onto my bladder. They offered me more bladder medication, but I had tried so many already and they all made my symptoms worse.”

Eventually, Laura was referred to London to see a neuromodulation specialist. “At this point, I was in my mid-twenties and wetting myself more regularly.” As a last resort, she discussed with the specialist neuromodulation and bladder Botox. The specialist ordered more tests, but when the results came back, they were surprising. 

“The bladder tests and urodynamics showed that the issue wasn’t with bladder after all - it was with my sphincter, not my bladder.” There was some relief in the diagnosis though; neuromodulation would likely help. But the end wasn’t in sight, just yet. 

“I’ve been waiting so long for help and about five years just for surgery. I turned 28 last summer, and I am now doubly incontinent, with a damaged anal sphincter too. Even during the rectal tests, the doctor performing the examination was dismissive and told me it would be anxiety related - until of course, she found something after all.”

After internal ultrasounds, and an MRI at the beginning of 2023, Laura is still awaiting results to see if she requires more surgery to detach her ovary from the uterus prior to the neuromodulation surgery. “I’m hopeful that by summer, I will finally get the surgery to help. It has an 85% success rate, and while the pain will remain, I’m hopeful it will improve things. I’m also awaiting a course of Percutaneous Tibial Nerve Stimulation after two sigmoidoscopies and a colonoscopy. It’s a lot!”

Laura feels passionate about sharing her experience and talking about taboo subjects to help others in similar situations to her. “I started talking on social media about my incontinence about a year ago when it became really unavoidable. The ‘Endo-Community’ is amazing, but we are still disregarded by the medical profession, especially when you don’t have bladder endometriosis but endometriosis AND bladder problems.

“I’ve had bladder issues for my entire twenties, and I’ve missed out on so much. I’ve given up jobs, holidays, plans and education. Enough is enough.”

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

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

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