My Story so Far

I woke up one day in June 2016 feeling like I had an UTI (Urinary Tract Infection). I had pelvic pain and was urinating way more than usual. I left work early and headed for a walk in clinic. The GP did a dipstick test, said I had an infection and handed me a prescription for antibiotics. Sadly, she didn’t send that urine sample off so I will never know if I actually did have a UTI that day.

I deteriorated over the next couple of days. The pain was horrendous. I felt like I had an elephant sitting on my bladder whilst also kicking me between the legs. Naturally, I turned to Google for some answers and very quickly came across something called Interstitial Cystitis (IC). Call it intuition or madness but I knew right there and then, that’s what I had.

I was prescribed another course of antibiotics and my urine was sent away. No infection found. I dreaded hearing those words. I prayed that I would have an infection because then I wouldn’t have IC. My blood test was normal, another urine sample was normal, I was being told everything was normal but I was far from it. I couldn’t go to work and sat at home in pain, researching what I could to get better.

The pain eased and I went back to work. I ordered some Prelief and to my surprise, I felt better. A few tablets before every meal to take the acid away and I was almost back to my old self. I was still having intermittent pain every day but it was bearable and I was having lots of time with no pain at all. I was back at the gym and had a smile on my face.

I was extremely fortunate to have private healthcare so I got to see an Urologist very quickly.

My Urologist mentioned IC within five minutes of meeting him. Fuck. Why couldn’t he have said it was something else. Something with a cure! He scheduled me for a cystoscopy with hydrodistention. He told me “not to listen to all the horror stories” about how this procedure had made people worse and assured me everything would be okay. I didn’t doubt him.

I had the cystoscopy on 1st August 2016. I woke up from the anesthetic in agony but I assured myself that was to be expected. My Urologist came to see me and said “Everything went really well”. Thank God I thought, it’s not IC. He continued, “You have Interstitial Cystitis but it’s mild, you’ll be okay, I’ll see you in a month”. He gave me some pictures of my inflamed and bleeding bladder and left. I would have cried but I was too sedated. Why did he say it went really well? My worst nightmare had come true.

 

My symptoms have been a lot worse since the cystoscopy, something I was not prepared for. Should I have listened to the horror stories? Yes, probably but hindsight is a wonderful thing.

I have adopted the IC diet. Everyday is like groundhog day as I just eat the same things over and over. I’m still in pain so unsure how much success I am having. It was hard at first but I am getting used to it. I have forgotten what the good stuff tastes like. I am sure I still sneak things into my diet that I shouldn’t but on the whole, I try to eat as bladder friendly as possible.

I spend each day in varying degrees of pain. Bladder pain, pelvic pain, feeling like I have been kicked between the legs, a burning urethra, pain down the insides of my legs and I am sure there’s more. I am fortunate not to have frequency or urgency as too much of an issue.