Awareness needed for Interstitial Cystitis

There’s still so much awareness needed around Interstitial Cystitis.

Three years ago, Niki Wells shared her story with the Bladder and Bowel Community on how she copes living with the debilitating bladder condition interstitial cystitis (IC). Niki is back to tell us all she is still struggling to manage the extreme pain caused by her condition and that now, more than ever, awareness of this condition is needed – not just by the public but by medics too.

“It’s been nearly three years since I first wrote my story on interstitial cystitis for the Bladder and Bowel Community. I have lived with this condition for 12 years now but most of the information I have found out about treatments and advice has been through my own research and having to dig deep to find out what I can do to help with this condition.

I feel that it is still a challenge to be heard by my doctors with just how much the pain is both physically and mentally draining. 

Here’s what Niki has tried over the years:

• “I have tried all the medications that are known to help with IC that both my GP and consultant are aware of. Unfortunately none of the medications have helped as a long term solution and I have now become sensitive to all these medications meaning I can no longer tolerate them. 
• “I also tried taking a mixture of painkillers that were prescribed by my doctor but these cause my IC to flare so I have now stopped all medications. This means I am still in pain but not as in much pain as a flare causes. 
• “I have had three bladder distentions and two urethral dilations. These have helped to lessen the urgency symptoms and have created extra capacity in my bladder but I still experience pain. My next line of treatment is possible bladder instillations, which I am currently discussing with my consultant. 
• “I have also worked out that my symptoms are very reactive to my diet so I am following an IC diet, which does feel very restrictive but helps to control the flares. An IC diet is essentially an alkaline diet and avoiding foods that are high in acid including tomatoes, leeks, onions, fizzy drinks, processed foods. I have learnt a lot from my research in how to manage my condition including how certain herbal supplements can be helpful* such as D-Mannose, and marshmallow root. 

In literal terms Interstitial means “recurring or interval” and Cystitis is “bladder inflammation” and that’s why it’s so hard to treat. Cranberry doesn’t help in this situation as it is highly acidic so can cause a flare in this instance.

“I have spoken to many IC sufferers through social media groups who feel this complex condition isn’t understood enough in the medical field. If you feel that you are experiencing painful bladder symptoms that aren’t being resolved then I would recommend keeping a record of what you eat and drink and get a referral to a urologist. 

What we do know is that IC is such a personal condition and how someone suffers can vary from patient to patient.

“By sharing my story, I want to help other sufferers to keep pushing for answers, others should insist on a referral to a urologist or a specialist consultant. It’s also important that medical professionals recognise the severity of our condition as we are often made to feel that our symptoms are simply in our head. I want others to also know that they are not alone and that there is support out there. There are private support groups on Facebook where you can connect with others with IC.”

If you are looking for support and to chat with others with a bladder or bowel condition, the Bladder and Bowel Community have a dedicated support group on Facebook, click here to join. We have over 15K members and growing!

*It is important that you consult with your doctor before trying any herbal supplements or dietary changes to make sure that it is safe for you to do so.