Hannah’s Story – Interstitial Cystitis

Introducing Hannah, who will be contributing as a regular guest blogger for the Bladder and Bowel Community. Hannah has a painful bladder condition called Interstitial Cystitis (IC) and will be telling her story over a series of posts as well as her personal experiences on what helps her manage her chronic condition.

If you have a bladder or bowel story you would like to share, then get in touch with us by emailing [email protected]

I was 22 when I was finally diagnosed with Interstitial Cystitis. After 7 years of pain, hospital trips, unhelpful doctors and recurrent UTIs. I finally got an answer to my mystery pain. 

I suppose this is all a bit dramatic and I should really begin with introducing myself. Hi there! My name’s Hannah and the amazing Bladder and Bowel Community have very kindly allowed me to do a bit of guest blogging for the next few months! I’m a 24-year-old Digital Marketing Assistant who also happens to have Interstitial Cystitis. I live in the North-West of England with my dog walking fiancé and yes, cuddly cute dogs is definitely one of the many reasons why I’m marrying him. I also run my own blog ‘Perfect Imperfect Bladder’, where I attempt to explore and discuss the reality of living with a chronic illness with the emphasis being on Interstitial Cystitis and other bladder conditions. 

Looking at me, you wouldn’t notice I was ill. I mean, I definitely look pale when I’m having a flare-up, but this can be hidden with a bit of makeup and doesn’t necessarily demonstrate that you’re suffering from a chronic illness. In this world of high-pressure jobs and social media, everyone’s tired… most of this time. 

Now, I would love to say that because I look generally ‘well’ this means my bladder condition doesn’t affect my life. As much as I once tried to hide my condition and fight against my body in order to keep up with everyone else, now, I’m much kinder to myself and allow my body to rest when possible during a flare-up. I hope to cover all of this and more in my future blog posts but for now, I thought I would write a quick introduction to Interstitial Cystitis.

Interstitial Cystitis (IC) is a bladder condition that causes severe pelvic pain, pain when urinating and many other symptoms such as fatigue, aches and pain as well as bloating, meaning that it can have a significant impact on the individual’s day- to-day life. The way I describe the pain is a deep, burning, heavy sensation in the bladder and down the urethra. Most of the time, I feel some sort of pain, but thankfully this is manageable. I consider a flare-up to be when this pain intensifies, leaving me unable to carry out normal, day-to-day life. This generally occurs in times of high stress, when my body is running on low. 

There are many suggestions attempting to explain what can cause IC, including trauma to the bladder and problems with the immune system, however, my specialist has suggested that my IC was caused by chronic urinary tract infections that weren’t investigated or treated properly. This has left me with damage and scar tissue in my bladder which causes pain when irritated (annoyingly, urine is classed as an irritant, brilliant).

To aid my chronic UTIs I underwent a urethral dilation, where they increase the size of your urethra, meaning that you can release a larger amount of urine and the infection is flushed out more effectively. Despite a reduction in the number of UTIs my body had to cope with, I was still experiencing pain due to my IC. This is when my specialist decided to perform a bladder distention, which increases the size of your bladder, meaning that I can take more fluid in without irritating the scar tissue. My specialist also performed a cauterisation to remove scar tissue from my bladder. This treatment tends to be temporary with the benefits lasting up to 5 years. 

Another treatment I have found extremely helpful is Pelvic Floor Therapy. Women with IC often experience tight pelvic floor muscles which are constantly tensed. My doctor showed me how to relax these muscles which reduces my pain level. This treatment is effective, easy and has no side effects (VERY uncommon in bladder and bowel conditions), which is why I scream it from the rooftops every time I or someone else discusses treatment for Interstitial Cystitis.

Now, 24 years old, I’ve learnt a lot about the condition that’s probably plagued me since I was 15. I’ve learnt to listen to my body, be kinder to myself and to stand up for my needs. I still experience a tinge of sadness when I drink a little too much and my bladder hates me for it, or when I’m stressed and my bladder pain intensifies but all in all, I actually think experiencing a chronic illness has taught me many lessons people generally don’t learn until much later on in life, and I’ve even found a new hobby in blogging. I suppose it’s about trying to see the good in most situations (trust me, I know it’s difficult) but I genuinely think that I am much stronger now due to my IC, than I ever was before. And that is something to be proud of and focus on to get through the next flare. 

Speak soon,

Hannah