Living with interstitial cystitis: interview with Laura on IC and exercise

May is pelvic health awareness month and I am supporting initiatives to help raise awareness through a series of interviews with women who are living with interstitial cystitis and other chronic pelvic pain conditions.

This interview is with Laura, who I connected with on my Instagram and has motivated me so much to exercise while living with interstitial cystitis (IC). Laura has lived with IC since childhood but hasn't let the condition prevent her from pursuing exercise, to the extent that she ran a marathon in 2019! I'm sure you will find her story inspiring and very helpful.

Can we begin with you telling us about how you came to be diagnosed with IC/ BPS? Had you lived with symptoms for a long time before your diagnosis?

My symptoms came along quite gradually when I was 15, beginning with me going to the bathroom more frequently, and experiencing pain in my abdomen. I assumed needing to go to the bathroom more frequently was just down to drinking too much water, and the abdomen pains were related to my menstrual cycle, and so I wasn’t worried at first. The symptoms gradually got worse and worse, and I could barely attend school or sleep through the night. I began going to the doctor a lot, and was constantly told it must be a kidney infection and sent home with antibiotics and told to drink cranberry juice.

My symptoms eventually became completely unbearable, with the pain resulting in frequent visits to the emergency room, and constantly being told I had a kidney infection and was being dramatic. I was so fortunate to have a wonderful GP, who didn’t give up on me. After many, many, many doctor/hospital visits, I was finally referred to a urologist who said the abdominal pain suggested a bladder condition, and so I was referred for a cystoscopy (a camera into the bladder). A few months later, I went in for the cystoscopy and was diagnosed with interstitial cystitis straight away. It took several painful months for a diagnosis, but I was fortunate to find a urologist who could diagnose me within a year of my symptoms becoming serious.

How do you manage your condition? Are medications helpful? Are there any lifestyle measures that help you?

I have tried almost every treatment that exists at this stage! I have found weekly bladder instillations very helpful. Unfortunately, these need to be done in a different county to my home town. I went to college in Dublin to be closer to my hospital and urologist, but once I relocated for my postgraduate, travelling for weekly instillations were no longer an option so I can’t receive this treatment at the moment. I also find bladder distension, done under general anaesthetic gives me a huge relief from my symptoms, but only for a short time. For the first few years, I went through this procedure about once a year, but now I usually have this done every 2 years or so.

I suffer very badly with anxiety, and I take daily medication to help with this, which in turn has helped my bladder a huge amount as stress can be a serious trigger for me. Diet management is absolutely crucial for me, and it has taken me a long time and many food diaries to identify my food triggers. My major triggers that I avoid are aspartame, acidic foods, alcohol, and tea (try avoiding tea when you’re Irish, it’s not easy!!!!). I do allow myself to indulge in triggering foods and drinks every now and then, but it takes a lot of preparation to be sure my bladder will be able to cope with a flare.

As someone who has run a marathon, exercise is clearly very important to you! How does living with IC affect how you exercise? Do you have to adapt your training?

Exercise is indeed very important to me, and I feel very passionately about the importance of exercise for our mental and physical health. Living with IC has made exercise a challenge for me, but I never gave up. In school, I could never take part in PE and the only exercise I could manage was some gentle yoga and walking. It took me a long time to get to a position where I could manage my symptoms enough to seriously take up running. If you had have told me at 16 that I would someday run a marathon, I would have laughed in your face (and maybe cried!).

IC affects every aspect of exercise for me. I have to be very in tune with my body and take a lot of unplanned rest days, which makes sticking to a plan very difficult. There have been a lot of runs where I need to stop and walk because of my bladder, and many long runs that have been turned into short runs because I couldn’t go any longer. I have accepted that I will never be a fast runner, because running slowly and taking walk breaks is what has worked for my body, and allowed my bladder to stay relaxed during exercise.

Do you feel that exercise is beneficial for you in terms of symptoms?

It definitely has been beneficial. It has made my body stronger in so many other aspects, which has benefitted my bladder so much more than I could have ever imagined. While my symptoms have held me back a lot, my bladder has been a lot better since I have taken up running. Our physical and mental health are very connected, and the mental health benefits I have experienced from running has also helped with my bladder symptoms. Overall, my biggest benefit in terms of symptoms is that running has allowed me to be a lot more in-tune with my body. I have learned how to listen to my body, identify early signs of a bladder flare up, and know the signs that I need to take a rest day.

What advice would you give to someone who wants to start running, but lives with IC or other chronic illness?

My biggest piece of advice for anyone with IC or chronic illness that wants to start running is to never ever compare yourself to anyone else. Everyone is different, and we all face our own challenges. Taking up running is difficult for anyone, and it will present extra challenges for someone with IC, or any chronic illness. You might find that you can’t follow a training plan, or that you can’t run as fast as someone else, or need to stop and walk after only a few minutes of running – but it’s ok!!! It can be so hard to accept that your progress will be slower than someone who doesn’t have a chronic illness, and it can be really frustrating. So forget what everyone else is doing, they are on their own path. Just do your best, stay positive, listen to your body, and be proud of yourself. 

What are your hopes for the future with your pelvic health condition? Are there any treatments or lifestyle measures you hope to try?

My biggest hopes for my future is that I don’t allow my IC hold me back in life. I spent so many years focussing on what I can’t do, and I want to now focus on what I can do. I know that I will face many challenges because of my IC, and that this is a part of who I am, but I don’t want to be held back by it, or let it define me. I am generally a very positive person, and living with IC has made me a stronger person. I want to continue to face life with a positive attitude and be able to support other people in the community.

Receiving a diagnosis is scary, and I would love to show people that having IC doesn’t mean that you can’t live a very full and happy life! In terms of treatments or lifestyle measures, I would love to be able to get back to receiving bladder instillations, and continue to manage my stress and diet in order to manage my symptoms.

Thank you to Laura for sharing her story of living with interstitial cystitis! I'm sure you found it as interesting and helpful as I did.

For more information on fitness see the Interstitial Cystitis Association's information on living with interstitial cystitis and exercise

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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.