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Life with Interstitial Cystitis

Hi, My name is Meg and I’m 22 years old. I first started suffering from Interstitial Cystitis when I was 13. It was around the same time that my periods began. I had urodynamics via the NHS alongside various medications to treat an ‘overactive bladder’ but nothing seemed to work for me. I decided to see a private consultant and was misdiagnosed with Ehlers-Danlos Syndrome, as I also suffer from hypermobility. As much as the flares were painful, they didn’t impact me that much as I was only having them every few months.

I finally came across Interstitial Cystitis in December 2020. I had installations through the NHS but they discharged me due to their diagnosis of there being “nothing wrong with my bladder.”

I was immediately positive that this was Interstitial Cystitis. My symptoms had become unbearable, so I decided to get a second opinion from a urogynaecologist in May 2022. He performed a cystoscopy and I was finally appropriately diagnosed with Interstitial Cystitis and Urethritis. I have recently changed consultants and have had another cystoscopy. I am now waiting for the results of this so we can explore treatment options which I am feeling very positive about!

The flare-ups have become so frequent and painful to the point where I had to quit my job. It has taken full control of my life in a way I never thought it would. This consequently has taken its toll on my mental health & and has stopped me from being able to live my life like a normal 22-year-old. But I keep fighting through it as best I can and keep the hope that one-day things may change.

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Life with Interstitial Cystitis

Hi My name is Meg and I’m 22 years old. I first started suffering with Interstitial Cystitis when I was 13. It was around the same time that