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Real story: Living with Interstitial Cystitis (IC)

Interstitial Cystitis (IC), or painful bladder syndrome, is a chronic condition that can have a long-lasting impact on people’s quality of life. Here, our customer Deesha shares her story of living with IC.

“I have suffered from IC for the last 2 years and 1 month. Let me start by explaining what IC is for those who may not be aware. This is my first ever blog post so please be kind when reading this post!

IC is a chronic, incurable, painful and debilitating bladder disease. Those with IC experience a wearing of bladder lining due to excessive production of acid in the kidney and in the way that urine is formed and passed from the kidneys to the bladder. Whilst symptoms can vary in severity, only half of all IC sufferers can work full time! It is a poorly understood condition and it can take several years just to get a diagnosis. Moreover, it is VERY, and I say VERY difficult to treat!

Lucky enough, for me, I was fortunate enough to afford private treatment and was able to get diagnosed after 6 weeks of debilitating pains.

Living with IC

IC causes me to experience severe menstrual pains during my period and on a daily basis. My bladder pains can be triggered by certain foods and beverages as well as my emotions. My diagnosis was 2 years ago and I’m still trying to figure out what I can eat, drink and how I can release my emotions without triggering pain.

For the first year and half of being diagnosed, I shut myself off from the world. I started getting anxiety and having moments of panic over what food and drink I could consume without triggering pains. I went into hiding and refused to go out. For me, I constantly had this feeling that I couldn’t do ‘normal’ things like everyone else. Then came a turning point when I released that I was wrong. I decided to pick myself up and use my experience to raise awareness of the condition. I started talking about IC, telling people why I’m unable to eat certain foods (biggest trigger for me is citric/acidic foods such as lemon, tomato, oranges and onions).

This is when I realised that there was such a lack of awareness and understanding of this condition. This is also sadly the case with many menstrual or reproductive health conditions. I have been disappointed by the number of doctors who are unaware of IC. On multiple occasions doctors have dismissed me on the basis of it being a psychological condition, stating that it’s just my brain signalling pain when there is nothing wrong! This, of course, makes me angry and makes me feel as though I do not matter. This is the reason why I am passionate about raising more awareness.

Battling the condition and raising awareness

I have battled with myself on trying to be stronger and less sensitive. Every tear, every little bit of stress or anxiety triggers my pain which means having to run to the ladies every hour or two. Mind you, this is a significant improvement from going to the ladies roughly 16-20 times a day before being diagnosed. IC can shrink the bladder capacity due to the pain and nerve signals. This makes you want to pass urine more frequently to help ease the pain.

IC can affect BOTH men and women. My key advice is to not ignore any pain or unknown feeling in your body!

IC symptoms

A few symptoms include:

  • Incontinence
  • Increased frequency of passing urine
  • Debilitating pelvic pain
  • Feeling of your bladder being twisted from within

Symptoms vary from person to person. If these symptoms sound familiar, I’d advise taking action as soon as possible and consulting with your GP.

Road to recovery

After going through a cystoscopy procedure (hydrodistention of the bladder) and changing my diet, I am on a much better path to recovery. A few of the things I have cut out of my diet are alcohol, caffeine, citric/acidic foods and flavoured/store bought yoghurts.

I continue to take care of myself (absolutely nothing wrong in putting yourself first, you should!) and continue to learn about my body every single day. I’d be more than happy to share more details and be an ear to listen to for anyone suffering from IC/PBS.

Thanks to Deesha for sharing her story! For more real stories, check out Suz’s story of living with Endometriosis.

*If you have any concerns over the symptoms of IC please always seek advice from a GP or medical professional. This story has been shared as a real account of this condition. It is not intended to diagnose any conditions. All opinions and experiences belong to Deesha and do not reflect TOTM as a brand.

Illustration credit: Nia Beynon.

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