Living with Interstitial Cystitis

The story of Samantha

When I was in my teens I ALWAYS seemed to have a Urinary Tract Infection, or at least the symptom of one. I would be given antibiotics anyway and sent off. For a few days the symptoms would subside but they would be back with a passion straight away. I must have been at the doctors once or twice a week every week. I got to the point of feeling suicidal and alone because no one believed I was in the pain I was in. I stopped telling people, dealt with it by self harming and attempting suicide, and spent 9 years in total with no answers, feeling angry at myself that I could be ‘imagining’ these symptoms. I moved to another city, and finally into a house with my other half. I knew he had a super understanding Doctor so I booked in to see him. He was really cool about it all and promised to get to the bottom of it. I waited, went through lots of tests that brought back nothing until he finally came up with an idea. He referred me to a Uro/Gynaecologist and in November 2014 I was finally given a diagnosis of Chronic Interstitial Cystitis. I had a Cystoscopy to confirm the diagnosis which showed pin prick bleeding, ulcers and weaknesses in my bladder and urethra. These were the cause of my intense lower back, pelvic and abdominal pain. I began treatments in the form of oral medication and bladder instillations which are a treatment applied directly into your bladder through a catheter. Recently I have had to have some indwelling catheters due to being unable to urinate and now have to use Intermittent Self Catheterisation at home to help me use my bladder. This is something that will be with me for the rest of my life now, but knowing what it is and how it can be supported and controlled has changed my life and my outlook on life!