Four and a half years ago I was diagnosed with IC (Interstitial Cystitis) This condition often goes misdiagnosed with GP’s suspecting Cystitis then prescribing antibiotics. Cystitis is of course treated with antibiotics but Interstitial Cystitis is not bacterial its actual damage to the lining of the bladder. This lining protects the bladder from acidity in the urine so when its damaged the unrine inrritates the wall of the bladder inducing pain, frequency and urgencey to empty the bladder.
Urologists do not know what triggers the damaged bladder lining, they basically don’t know why some women and men, have this condition. IC is not a fatal therefore funding for research is limited however in the US where the health system is a billion dollar industry there does appear to be more information available. But still no cure.
After my diagnoses I recieved weekly instilations of Cystistat for 8 weeks. This is a procedure where the Cystistat is instilled into the bladder via catheter, its purpose is to repair the damaged areas. But unfortunately, like so many other, this was unsuccessful. Next option was Atarax (Hydroxine Hydrochloride) 50mg at night. This helped me sleep at night but has done very little to eased the daily pain. Four years on I am still staking this drug.
IC is a complicated and a very individual condition. Every sufferer has different symptoms and triggers. Some have pain only, or frequency only etc.. what drug or treatments that work for some won’t work for others. For me the pain has been the most difficult to cope with. Every morning for over four years I have woken up in pain and you’d think that by emptying the bladder the pain would eas but this is not the case. The pain and irritation can continue all day some days worse than others.
Tiggers, well I could write a whole book on this subject. Again everyone is a little different with triggers. But generally speaking anthing citrus, acidic, caffinated, carbonated, alcoholic and high in potassium. When you think about those catagories it actually covers a wide range of food and drinks. I mainly drink bottled water with a neutral Ph. Occaisionally I will have a decaf coffee with lots of milk but thats about it. Milk is fine to drink but not one of my favourites. Sticking to natural sugars is important too, no artificial sweetners. One other major trigger for me is hormones. Flucuating hormones around ovulation and menstruation are what I can only describe as horrendous.
Even though I follow and IC diet I still have daily pain it can vary from day to day but every morning without fail I will wake up in pain. This has a huge effect on mental health and when having a bad flare (of IC) can make one question how long this can be tolerated. Many IC sufferes are also taking anti depressants.
IC also effects physical activites which for me, as someone who has alsway been very active has a huge effect on my life. Most strenuous exercise will cause a flare and for me that includes swimming. The pressure of the water around my body seems to increase my pain levels. I have however always ridden horses and thankfully never really had too many problems, up until recently but more about that later. So jogging cycling aerobic and gym exercises are very challenging for IC sufferes.
Ive only touch the surface of this subject, IC is life long condition. There is no cure, only management. Life’s a bit of a pain, but life goes on.