The story of Jayde
From being a young kid, i always knew i was weird. I always seemed to be sick, and my parents were beside themselves. Urinary tract infections became second nature to me. Feeling like i needed to pee acid 24/7 became the norm for me. I had tests after tests carried out but everything came back normal every time.
When I was 15, I was with this guy who I thought was the best thing on this earth. We had been best friends for a long time, and hr had been my boyfriend for just over a year.
Everyone hears about these awesome ‘first time’ stories, well mine was far from awesome. I wasn’t ready, but I did it anyway. All I remember was this blinding pain and then me sobbing on the bed for hours. By poor boyfriend felt terrible, this wasn’t meant to happen!!
That pain didn’t subside, and I ended up being rushed to the hospital after I started bleeding really bad. But what was strange was that I was bleeding from my urethra (where you pee) rather than vaginally. In the hospital I had more tests done to see if she could see what was going on. They put me to sleep and put a camera up into my bladder. When I woke up and my urologist came to see me, he didn’t look very happy and I automatically assumed the worst. What he actually told me was that on close inspection, my bladder was full of ulcers, and it was also bleeding. More importantly, he told me that all of the water infections I had been suffering with, and this episode were linked! I finally had a diagnosis, Interstitial Cystitis or IC as it’s more commonly known. Interstitial cystitis is a chronic bladder condition of unknown cause characterised by pelvic pain, dysuria, urinary frequency, urgency of micturition, and pressure in the bladder and pelvis. Interstitial cystitis has been defined as a disease of the urinary bladder and in severe cases, the pain of IC has been compared to the pain experienced by a cancer patient!
I felt so relieved to finally have a name to this disease I has been living with for most of my life!
After I had my diagnosis, things started to go downhill. The condition of my bladder continued to deteriorate, and it got harder and harder for me to be able to pee by myself!
One day when I was 19, I woke up and I was suddenly unable to pee at all. Not even a drop. I tried everything I physically think of a nothing worked. So again, it was a trip to the hospital. First and foremost, they put in a catheter. The n proceeded to do so many tests that I lost count!! I had electrical impulses passed through my bladder to see if my nerves were contracting, to tell my bladder when to contract and relax (allowing me to pee). Again, the resists weren’t good. I was told that my bladder seemed to have just packed up. It had shrunk, and was no longer sending the nerve signals that tell you when to pee. I was also told that it was highly likely that I wouldn’t pee by myself again.
Imagine being told at just 19 years old, that you’re never gonna be able to pee naturally again. I was distraught, but I was also in denial. I would spend hours at a time sitting on the toilet to try to force myself to pee even a drop, but nothing ever came.
Then came the scary thought of catheters. I didn’t want a catheter in my urethra for the rest of my life!!! So I tried intermittent self catheterisation, which was disastrous! I wasn’t winning with this and was becoming more frustrated and depressed. I tried again with the urethral catheter, but that only lasted for around 8 days, before intense bladder spasms forced the catheter to expell, with the belloon fully inflated!! If that doesn’t mean much to you…imagine something the size of a golf ball, being forced through the tube the size of a straw!! It caused a lot of damage and caused some internal bleeding OUCH!!!
That happened on Christmas eve 2012, and as there was no other way for me to pee, i had to have urine extracted using the biggest needle I have ever seen!!! They basically stuck this huge needle through my abdomen, and into my bladder to let the urine drain out.
On Christmas day 2012 I had surgery to site a supra pubic catheter. This catheter bypasses the urethra completely (thank goodness)
Even with this new catheter, things haven’t been easy. I’m in and out of the hospital on almost a weekly basis. I’m having to deal with infection, blackages, pain and most importantly, blood poisoning!!!
I cannot carry on like this, so this year I have made the very huge, very permanent and very drastic decision to have my bladder removed.
I am only 21,years old, but I cannot continue to live with this horrible dead organ inside of my body!
To some people IC is a diagnosis, but to me, it has been a life sentence, and once this think is out of my body…I’m keeping my fingers crossed that it will truly give me my life back!!
Thank you for taking the time to read this (very very long) look into what it is like for me to live(survive) with IC!!
Jayde Wilde xxx