Published: 03/09/2020

My bladder journey

“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 if you have any questions about it.” ☺

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