For four years, Rhiannon Jenkins has been battling for a diagnosis for her debilitating bladder condition. Today, she’s still searching for answers
Sitting on the patterned floor tiles of my Airbnb in Barcelona, I hugged my knees in agony. What started as a slow-burning pain in my lower abdomen had turned into a raging fire, ripping through my body. Despite feeling an urgent need to urinate, I couldn’t move; the pain shot up my back as if I was being burned alive. The urinary tract infection (UTI) I’d developed a few weeks earlier had come back with a vengeance, only this time, it had spread to my kidneys. And while an emergency course of antibiotics had cleared the infection, the damage to my body and mind was irreparable.
I don’t know what caused this acute attack, back in April 2018, but it triggered what doctors suspect to be interstitial cystitis (IC), or ‘painful bladder syndrome’ – achronic inflammation of the bladder wall and a condition that’s ruled my life ever since. Besides the urgent need to urinate – asymptom that confines me to my house the moment it flares up – the pelvic pain that comes with it is agonising. While some people’s symptoms come and go, mine are always with me and, as there’s no cure for IC, I’ll be living with this condition for the rest of my life. It’s this realisation that’s taken its toll on my mind.
Knowing I’ll never be ‘free’ again makes me feel like my body is out to get me. On the days when I have no choice but to go about my business – such as when I go into the office for work – my thoughts begin to spin, and the anxiety builds in my body. I’ve Rh iannon Jenkins, never not made it to a toilet in time, but it’s a scenario I live in fear of. And yet, I’m too embarrassed to talk about it, even with my friends. People associate incontinence with the elderly. I’m 24. There are things I can do to manage my symptoms. Earlier this year, a study found that an anti-inflammatory diet could lessen the severity of symptoms, and I’ve since reduced known bladder irritants such as alcohol, caffeine, fizzy drinks and citrus. But dietary changes can only do so much; the bigger issue is that stress can exacerbate the problem – and nothing spikes your cortisol quite like being told to lower your stress levels.
It’s a vicious cycle, and I’m not the only one trapped. Around 400,000 people in the UK suffer from IC – 90% of whom are women. Despite this, the condition is frustratingly underresearched – something I suspect wouldn’t be an issue if it were a predominantly male problem. The mystery surrounding it leaves me second-guessing myself, as though it’s not real. It’s also the reason I spent two years in pain, going back and forth to t
