My bladder journey

Posted September 3, 2020

“Hi, I’m @uniquely_jeantique and for Urology Awareness Month I’m going to tell you a bit about my bladder journey! I have hEDS and bladder complications are one of the many comorbidities I struggle with, but for years I was told I “just” had interstitial cystitis and was dismissed by doctors who didn’t take any of my symptoms seriously.

“My cystitis symptoms got worse over time and I was also having to strain to be able to pee and started getting horrific bladder pain and spasms. Finally I found Professor Vikram Khullar, an amazing urogynaecologist in London who specialises in hEDS. He explained that dipsticks have a 90% false negative rate in EDS patients which was why my doctors never believed I had a UTI, and that my samples needed to be sent off for prolonged culturing. The first one showed that I had not one but three strains of infection – it wasn’t in my head!

“I then had a cystoscopy to look inside my bladder which revealed severe inflammation and infection in my bladder wall. The biopsy showed a very elevated mast cell count so I was diagnosed with MCAS, and a diamine oxidase blood test showed I am also histamine intolerant. These results suggest that my body over produces histamine and is unable to destroy it, which leads to inflammation in response to bladder infections. I was therefore put on a range of mast cell stabilisers, H1 and H2 antihistamines, long term rotational antibiotics, and I also have to stick to a strict low histamine diet!

“After a few episodes of full retention landing me in A&E with a catheter, I also underwent urodynamics testing. This looks at the bladder’s ability to hold and empty urine, and showed that my urethra doesn’t relax properly, which is why I can’t fully empty my bladder (I retained 600mls in the study). I was taught to self catheterise – using single-use catheters at regular intervals throughout the day – to fully empty my bladder in order to reduce the painful spasms, and minimise the chances of the chronic infections recurring. I was also referred for Botox injections to relax my pelvic floor!

“I hope this summary has helped spread some awareness and I’m here at instagram.com/uniquely_jeantique if you have any questions about it.” ☺

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