I dedicated a series of images of a floral paintings some years ago that I thought represented the cycle of interstitial cystitis. Kind of silly perhaps but if you look at the first flower it looks like then the mood begins to worry and then there’s pain and worst pain then slowly improves but one is always watchful until the cycle starts again. These are all images of the same painting digitally modified to produce the changes that to me represent pain.
It’s a Bear, it sEeps your life awayConstant pAin it changes your liFeyour mOod your futureInviSible to the outside but you look Fine nEed toUrinateconstantlycan’t slEEep can’t have seXwithout feArofpain Afraid to eEatafraid afraid afraid
All this and more is the face of interstitial cystitis.
I have had interstitial cystitis for more than 20 years. I am one of the lucky ones, most are not so fortunate, my disease has not progressed and I’m stable on the medication I take daily, would I be if I didn’t take the medication? I don’t think so, I have tried to decrease my meds but when I do i have a flare so from 10 mg of amitriptyline I have gradually had to increase to 100 mg over the years. It hasn’t been an easy burden to live with, the first 5-8 years were the worst with frequent flares now much less if I’m cautious about what I eat, avoid stress (which is difficult to manage in our busy lives, but for many they don’t have busy lives because this has changed lives)
I am writing this now because a reader wrote that he has IC and it has progressed. He thought that a note from someone whose condition has not gotten worse but has improved with less frequent flares would be encouraging to other IC’ers, I hope this helps and if anyone would like to talk to me about it please contact me here and I’ll be happy to share what I know about IC.