My youngest son was born on the 6th of March 2008, the day after my 39th birthday. Four months later was the start of the daily pain of IC.
In the July of 2008 I woke one morning with some abdominal discomfort, thinking it was a UTI (urinary tract infection) I called my GP for an appointment. Id had UTI’s or Cystitis a few times in the past so I knew the symptoms. I handed in a sample and my GP prescribed antibiotics. When over a week later my symptoms remained the same I spoke to my GP again, she arranged for me to see a continience nurse. Her thinking was that maybe my bladder was out of postion after pregnancy (four and a half years later I actually believe she was correct) But time passed and nothing changed.
In the September she refferred me to the Urology departemt at the local hospital. Well when I say local I mean, on the mainalnd. I lived on an Island off the west coast of Scotland at the time.
December 2008 I saw my consultant and he immediately booked me in for a Rigid Cystoscopy. This procedure is basically a small camera inserted into the bladder to aid diagnosis. By mid January my results were back and to my horror I was diagnosed with Interstitial Cystitis. I was really upset as I knew what this ment. With information at our finger tips these days it very easy to research symptoms and Id read extensively about IC.
My consultant was optimistic and advised a 6 week course of Cystistat instilations to be done once a week at the hospital. This drug is supposed to calm the lining of the bladder and aid repair of the damaged area and for some sufferers it is successful. However for me it made very little difference.
IC is notoriously difficult to treat. Patients have different symptoms, triggers and react differently to treatments. So its a case to try it and see! The next step for me was Atarax (hyrodxine hydrochloride) 50mg at night. This drug was to help me sleep as it has sedatory effects and also ease the pain. The pain is always worse at night as the bladder fills and expands the pain increases often causing sleepless nights.
Through all of this I had a young baby at home and a partner who was unsympathetic. My relationship had been difficult for some time I knew he was lying and decieving me but I didnt have the strength to end it. But by june 2009 Id had enough.
So there it was… my life! I was 40 a single parent with one son at Uni the other only 15 months old, with an incurable painful condition living very far away from any family or support.
My ex tried to come back a few times (this was his pattern in life) but by January 2010 my house was on the market and 11 months later I moved back to where I call home. Im still in pain everyday, some worse than others and after a recent treatment ( 28th Dec 12) that was supposed to give me relief, I now find myself actually worse off than I was before. As I write this my pain level, which I gauge from 1-10 is at level 6.
I strongly advise anyone reading this who may have IC, if offered Botox into the bladder to seriously discuss the possible outcomes with your Consultant. Ive lost faith in my Doctor now, he didnt fully explain the possibilities and now I have to use catheters to empty my bladder 4-6 times a day…. and the pain is still there.
Life’s a bit of a pain, but life goes on.