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Health & Wellbeing / Claire Blackmore

How To Live With Interstitial Cystitis

Interstitial Cystitis (IC) or “Painful Bladder Syndrome” is a poorly understood long-term bladder condition that mimics the symptoms of cystitis and causes chronic pelvic pain. This is made more complicated by the fact that IC is non-bacterial and therefore antibiotics are ineffective. In fact there are very limited treatment options and at present, there is no cure. With approximately 12% of women suffering from this condition, why has no one heard of it? And more importantly, why aren’t we talking about it?

What is interstitial cystitis?

“Five years ago, I experienced cystitis for the first time. I had no idea what was going on down there, and I was too embarrassed to tell anyone. I put on a brave face for almost two weeks, hoping the pain would just ‘go away’ until I noticed blood in my urine. By the time I saw a doctor, the bladder infection was so severe that it had reached my kidneys. Not fun.

“For the next few years, I continued to experience the symptoms of cystitis more and more frequently, until it eventually became a weekly occurrence. Antibiotics no longer had an effect on treating my symptoms, and I suffered for months in excruciating pain.

Why am I having painful sex?

“I began to notice that the pain always occurred after I had sex with my boyfriend. Within a matter of hours, I would start to feel short, sharp shooting pains in my abdomen and pelvis that steadily increased with intensity. Every wee felt like burning hot lava was trickling from my insides, and in a feeble attempt to distract from the pain, I would dig my fingernails into my thighs until they stung more than the pain in my bladder.

“After this realisation occurred to me, I was then terrified to have sex for fear of the agonising pain that always followed. I had panic attacks when faced with travelling long distances, worried what I would do if I couldn’t quickly access a toilet.

“I was eventually referred to see a specialist consultant. I was poked, prodded, and probed. I had MRI scans, cystoscopies, and ultrasounds that revealed the dire state my poor old bladder was in. It looked like a bomb had exploded and tiny fragments of scar tissue were floating around from the inside of my bladder wall. It took almost three years, but I was finally diagnosed.

Can you cure interstitial cystitis?

“The consultant suggested I try a new fangled treatment called The Whitmore Cocktail (no pink paper parasols in this type of cocktail unfortunately!) A type of bladder installation where you are catheterised and your bladder drained. Then, they insert the cold concoction of anaesthetic, anti-coagulants (blood thinners), hormones and other various chemicals into your bladder. Ouch.

“I learnt that the more anxious I felt, the more painful the procedure was. The wonderful nurses at the hospital were so kind and gentle, and they held my hand every time I panicked. I returned for treatment once a week for six weeks, but this wasn’t enough to completely subdue my symptoms. I was then put on much longer course of bladder installations for just over a year.

“I finished my bladder installations this summer, and can happily report that although I still, and always will, suffer from IC, the symptoms are by no means as bad as they once were. The last time I had a very acute episode was in August so I’m about to break my own personal record and have 3 months with no IC! YAY! When I reach a year free from IC (love that it rhymes), I will have a big party and you’re all invited!

Is interstitial cystitis common?

“I was once very prudish and awkward when it came to talking about vaginas, and would always try to avoid this topic of conversation that gave me the heebie-jeebies. Now I’m older and wiser, I realise that by talking to people about my experience, reassured me that I wasn’t suffering alone. The more I talked about it, the more I’d hear responses such as;  My friend has cystitis every time she has sex too!’ and I had something similar for years. I was referred to a specialist and had treatment in hospital and now I’m so much better’. It was a flippin’ revelation to hear all these amazing stories about badass women who had suffered with something I could relate with. And this only encouraged me to talk about it more!

“I am lucky enough to have a wonderful (and tolerant) boyfriend, a loving family and an amazing network of friends that supported me throughout this ordeal, and I honestly can’t thank them enough.

“If by telling my story, I can inspire at least one person, to talk more openly about suffering from cystitis, IC or any other bladder conditions, then I’ll be happy. Most women will suffer from cystitis at least once in their lives, so why should we feel ashamed to talk about our bladders? So much more research needs to be done, but this can only happen if more people raise awareness, and more people speak up!”

Do you have an experience you’d like to share? Get in touch to tell us your story.

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