September is Interstitial cystitis awareness month

A word to encourage those suffering with IC that it can get better over time and may not always get worse.

I’ve had IC since about 1990 , I don’t expect to be cured of it. I want to manage it and not let it manage me.

I was lucky to be a nurse with access to the medical library and realized early what my diagnosis was, when I told a MD friend I thought I had IC he said “no you don’t want that.” He was right, I didn’t want that, but here we are years later and I still have IC. Many suffer for years before they get a diagnosis.

Initially it was pretty awful if you are reading this you know what I mean. So I won’t get into the many ways we suffer with this bladderbitch.
I have found that stress reduction and medication has made a difference in my symptoms, I can eat what I could not and even drink coffee if I am cautious . I know that if I wake up in the morning in pain, which happens less and less, I need to be careful and avoid my triggers. I drink ensure every morning instead of having coffee.

I’ve seen several urologist over these years, some good and one really terrible, who thought I was drug seeking and told me there is no such thing as bladder spasms and I didn’t have IC.

I never went back to see her.

The next urologist I saw insisted I had to have a cysto but agreed I couldn’t have it done in the office because the last one I’d had the MD punctured my bladder and it was horrible. So in the OR he found I had profound damage and ulcers in my bladder, he was convinced I had severe IC and gave me what I needed for pain started me on what for me is the miracle drug elavil (amitriptyline) 10 mg at bedtime, I currently take 100 mg and even more if in a flare, but it works for me and I don’t expect I’ll ever stop needing it, I’ve tried to decrease the dose when feeling good but always need to go back to 100 mg. So yes, I’m much better than I’ve ever been and I remain cautiously optimistic and hope that reading this might give hope to someone just starting on this rocky road that it can get better.

Elavil is an old drug, super cheap and has of course some side effects that include weight gain, dry mouth, & constipation and for some an increased heart rate all easily managed if you hang in there. If your uro hasn’t suggested this medication for you, you should ask about it. Cheap, effective is an antidepressant and helps with nerve pain and sleep. I think this outweighs the tolerable side effects.

I have a urine cytology test yearly because chronic inflammation anywhere can cause a change in cells (and no matter what you are told, it can initiate cancer growth). I have inflammatory cells in my urine even though I feel better, it’s still a damaged bladder.

Not everyone can take the steps I’ve taken to manage life, nor would they want to, I wonder if I’ve made the right choices. Then I remember last year I still lost several days in pain every month and since I’ve moved I’ve only had a few hours in pain and haven’t needed pain medications more than 4 or 5 times for comfort. It can be lonely but now I have Charley to take care of and that helps us both. This works for me right now.

I really hope that some one reads this message with hope and if I can help anyone understand interstitial cystitis you will only have to ask.

We need a cure.