Jordan Bew, 36 from Cornwall spent nearly 2 years suffering from crippling, painful bladder symptoms before being diagnosed with a little known condition called Interstitial Cystitis in October 2022.
Here, Jordan kindly shares his story about getting his journey to getting a diagnosis, his treatment and how he raises awareness of the condition with his Youtube videos.
“I woke up on the 28th February 2021 and little did I know, my life had changed forever. I started with severe urinary urgency and frequency, which initially lasted for 3 days.
After about a month, I experienced another episode of urgency and frequency and then these flares started to happen around once a week and would last for several hours at a time. I could even pin down the day it was going to happen.
I was put on some meds, which helped to control the symptoms for the next 12 months. I then developed symptoms of nocturia, getting up at least twice a night even when I restricted fluids before bed, lower back pain and a feeling of needing to pee just after urination, painful urination, poor urine flow and reduced bladder capacity.
I insisted on being referred to a urologist
“It took a long process of trialling different meds, antibiotics and dietary changes with my GP, and with limited effects I insisted on being referred to a urologist for further investigation.
Initially, I went to see a private urologist whilst I waited for NHS appointments. I underwent urine dipstick blood tests, urine STI checks, bladder and kidney scans, Digital Rectal Exam (some doctors run a prostate scan but I didn’t have one, only an external bladder and kidney scan), urodynamics, flexible cystoscopy, neurological assessments for Multiple Sclerosis.
My symptoms started to deteriorate
I had to wait to have all my tests done via the NHS as I couldn’t afford to have them done privately. In October, my symptoms started to deteriorate so I went back and saw my private urologist and from then, my appointments got fast-tracked.
Finally, I had a rigid cystoscopy with hydrodistention and biopsies taken after the hydrodistention under a general anaesthetic showed a rigid bladder with a reduced capacity. The biopsies showed mild inflammation in the bladder and confirmed I had IC (interstitial cystitis).
My symptoms started to deteriorate
“I’ve tried many treatments to control my IC including various antibiotics, bladder meds, amitriptyline, botox and I’m in talks with a surgeon to have a bladder augmentation or as a final resort, a urostomy.
“At the moment, I do try to follow a bladder-friendly diet, which includes avoiding caffeinated/carbonated beverages, alcohol. I usually only drink decaf tea and squash, although I’m testing out cutting out decaf tea currently to limit flares. I also limit my intake of chocolate and tomatoes and I avoid spicy food all together.
I don’t feel confident travelling further than an hour away from home
“I’m still suffering from flares currently. I had a bad one recently after a hydrodistention procedure and experienced severe pain and bladder retention. I am having botox at present and this means that although it does lessen the daytime urgency symptoms, I now have to use intermittent catheters to pass urine and will do so indefinitely whilst I’m having botox and until a decision on surgery is taken. I’m hoping that my surgeon will agree to a urostomy as I feel this will give me a quality of life back. My bladder symptoms mean I don’t feel confident travelling further than an hour away from home.
Despite all of this, I have good support from my wife, family, friends and customers (I am self employed). I also get support from patient support groups for IC and overactive bladder.
I felt there was something seriously wrong
“My advice to anyone with symptoms of IC would be to certainly try some dietary changes to help alleviate the symptoms but push for all the tests! GPs can only do so much, insist on a referral to a urologist. I felt there was something seriously wrong all along but I struggled to find a doctor who took it seriously, until I met my great urologist. Private consultations can speed things up. There are very few IC specialists in the UK, but it is possible to have video consultations with a London specialist without a referral from your GP.
Going to the doctors felt like my only option
“I think it is always going to be hard to get men to open up about having a bladder condition as most men are too embarrassed to go to their doctor. My symptoms were so severe that going to the doctors felt like my only option! I don’t go out of my way to talk about it but if I’m asked, I’m very open about my condition.
I also have a Youtube chronicling my symptoms, my experiences with various tests and procedures and what to expect when visiting a urologist. I hope that these videos will be of comfort and support to people.”
You can find Jordan’s YouTube channel online here, where his flexi cystoscopy video has had 1300 views so far and his rigid cystoscopy video has had around 1000 views.
If you are experiencing painful bladder symptoms and urgency, it is important to go and visit your GP in the first instance to start the ball rolling towards a diagnosis. Information on interstitial cystitis can be found on our website with information on the condition and available treatments plus other patient stories and news.