I realise that I haven’t featured Interstitial Cystitis (I.C.) in the September awareness months as much as I have with chronic pain. It’s not deliberate, it’s just that pain is a lot more relevant at the moment.
If you want to know more detail about what Interstitial Cystitis is, then you can follow this link to my feature on it. Otherwise, in a nutshell it is a complex bladder condition where the lining of the bladder becomes deficient, leading to holes forming in the lining and letting irritants and chemicals leak through it. There is no known cause, but there are a number of theories and it is likely that it is combination of them. It is also quite a common disease in patients who already have Endometriosis.
For me, I had bladder problems since a very young child, which presented in repeated urine infections, pain and soreness “down below” and a real sense of frequency. Despite my mum taking me to the doctors, all we were given were antibiotics and no known cause for what was going on. Maybe it was because I was young that they didn’t want to really investigate – I can just imagine how traumatic all the test I have been through now would have been if I’d had to have done them really young.
The symptoms persisted into my teenage years, where I would get fevers and terrible back ache associated with them, and it became a running joke among my friends that I was the one who “always needed the loo”. Still, I was just prescribed more antibiotics and often told that it was “quite normal in girls of my age”.
It was until I was towards the end of school that I realised a big chunk of my urine infections coincided with my menstrual cycle, and it was often towards the end of my monthly bleed that I would get one. Again, the doctors put this down to the fact I was using sanitary items which didn’t create the best environment to be UTI-free or that because my pelvic organs were already irritated during my period that it affected my bladder.
They still persisted into university and then got a lot worse after I graduated. They became kidney infections and I had a particularly nasty one that didn’t seem to shift for weeks. It eventually became so bad that my infections became weekly and I was permanently on antibiotics to try and stop them. Of course, it was around this time I was in the hurricane of severe menstrual symptoms, so things were definitely overlapping.
I did finally get referred to a urologist by it took time for me to be taken seriously, and I underwent several cystoscopies (a procedure done under general anaesthetic where they look at and stretch the bladder – both a diagnostic and therapeutic procedure), with each one become more and more complicated and longer in length, as well as me being poorly afterwards.
During my time with I.C. I have had to trial many invasive treatments to get some relief. The first being bladder installations, where an outpatient procedure where a specialist urology nurse catheterises me and fills my bladder with a fluid medication. I’d then have to hold the substance in my bladder for a couple of hours to get the most beneift, and it was repeated weekly, then bi-weekly, then monthly. Unfortunately, the most basic and weakness cocktail didn’t work after a couple of goes, so I have been boosted up to stronger and stronger version, with the stronger containing anti-coagulants, steroids and anaesthetic. However, I had a reaction to it which left me in retention for over 24 hours and I was hospitalised, so my consultant decided it was time to stop those.
The second invasive treatment has been self-catheterising, which I was prescribed to do hand-in-hand with my oral medication and installations. Just as the name suggests, I was catheterising up to several times a day in a bid to empty my bladder completely and prevent further infections, but they were also used as a mechanism to stretch my urethra, as I had narrowing and scar tissue along it. They were tolerable, as I found catheterising very VERY painful and it led to numerous infections, two of which led to very severe kidney infections and me very nearly being hospitalised and one of those led to me developing sepsis where I was definitely hospitalised. So we had to stop those too – I don’t think I’ve ever seen my consultant so worried when he saw me with sepsis!
The third being the newest development – the Sacral Nerve Stimulator (or Neuromodulator – commonly known as SNS). After being referred to a very specialist team, I underwent a trial phase of this expensive device in February. It involved having a local anaesthetic in my back and bum, and the consultant trying to shove a knitting needle through a foramen in my vertebrae. It was very uncomfortable, but delivered amazing results. I went from peeing something like 40-50 times a day and several in the night, to peeing just 7 times a day and none at night, as well as emptying my bladder completely. My bladder pain was a lot better also, and because of the improvement, I was given full funding to have the permanent device fitted. This is something I am waiting for.
At the moment, my I.C. is under control, and I think this is a combination of new medication and diet modification. I do have intermittent flare ups that lead me stuck on the toilet needing to pee all the time (basically like a UTI but with no actual bacteria causing the infection). I still get infections, but not as frequent – my last one was a few weeks ago and it was a kidney one, but was easily managed at home.
For many though, I.C. can severely limit their lives, and I can totally see this – before everything was under control a couple of years ago, I struggled to work because the symptoms got so bad or I was constantly unwell with infections.
Hopefully, through the awareness that I.C. awareness month is trying to raise, there will be less and less stigma surrounding this bladder condition, and people can see what it’s really like to live with. You never know, it might make treatments and surgery more accessible.