Urology Awareness Month and why I always need to pee.

September is Urology Awareness Month, as organised by The Urology Foundation, so I thought I'd take the opportunity to raise awareness of my own chronic bladder condition. 

Anyone that spends a significant amount of time with me will testify that I always need to pee. I get so anxious if I don't know where the nearest available toilet is at all times. Why? Interstitial Cystitis - also known as Painful Bladder Syndrome or the ugly twin sister of Endometriosis. It is pretty common to suffer from both Interstitial Cystitis and Endometriosis and, for me at least, they often interact with other.

Interstitial Cystitis is a complicated and poorly understood condition, but if I had to sum up how it affects me in simple terms, I'd say it's like having a Urinary Tract Infection. FOREVER. Frequent urination, pain when urinating, pelvic pain, etc. 

I'm not exaggerating, though that would be how I describe it on my more moderate/severe days. On these days my whole bladder area feels tender and sore, and holding in my urine is very painful. I do also have good days, but even then I still need to empty my bladder more frequently than most people. 

It can make days out or long journeys really tricky as I always need to be near an available toilet. On bad days my 45 minute work commute could be torture. 

For a more technical definition, here's what The Urology Foundation says: 

"Interstitial cystitis is caused by inflammation of the bladder lining. It is also known as painful bladder syndrome, chronic pelvic pain syndrome and frequency-urgency-dysuria syndrome.

Normally, the bladder wall has a lining that protects it from toxins in the urine. In people with interstitial cystitis, this protective layer breaks down, allowing toxins to irritate the bladder wall. The bladder then becomes inflamed and tender and does not store urine properly."

For many years I suffered with the symptoms of this condition, without realising it was a medical issue. Much like my endometriosis, I was just made to feel like I was 'unlucky' to suffer these symptoms. 

An issue was finally recognised whilst I was in hospital recovering from my endometriosis surgery. I couldn't empty my bladder - it was like it just stopped working altogether. I was kept in hospital for four days for monitoring, and was finally taught to self-catheterise so I could get home to my then two year old son. This was an utterly miserable time, as it was so painful due to my bladder sensitivities. Finally I managed to empty my own bladder, but was sent to a specialist to investigate further. 

After two consultant appointments and an unpleasant cystoscopy, the specialist diagnosed me with interstitial cystitis. Again, similar to getting my endometriosis diagnosis, this result was bittersweet. Whilst it was good to have a diagnosis, I learned that it was another incurable, chronic condition to add to my repertoire. Treatment options are pretty limited, involving mostly lifestyle changes and pain relief. 

To throw in a feminist sidenote here, it is interesting to learn that 90% of interstitial cystitis cases occur in women, or those assigned female at birth. This is yet another example of a (largely) female health problem not getting the research or attention it deserves. Sigh.

For more information on Interstitial Cystitis, visit The Urology Foundation website. If you have any questions about my experience with the condition, feel free to comment below or contact me on social media. 

Sam x