What is Interstitial Cystitis?

September is Interstitial Cystitis month and before the month gets away from us completely, I wanted to talk about this little known syndrome that was my constant companion for the last several years. While the mechanisms behind IC aren’t always clear, it is becoming widely considered to be the work of misbehaving mast cells, as IC is frequently a comorbid condition to all known mast cell activation disorders.

IC is also among the conditions that were found to be driven by duplicate tryptase genes in a familial study sponsored by the NIH, now known as hereditary alpha tryptasemia syndrome (HATS). With ever mounting evidence that HATS is a mast cell activation disorder in and of itself, it will be interesting to see what the future classification of this syndrome looks like.

Screenshot_20180919-101746.pngThe current estimate is that 1 to 4 million men and 3 to 8 million women have symptoms of IC. Interstitial Cystitis is marked by bladder pain and irritation, urgency and the need to urinate frequently. Basically, it feels like having a Urinary tract infection 24/7. For most sufferers, it begins with the need to urinate somewhat more frequently, which can lead to feelings of urgency. As this urgency builds, it can become painful. Sometimes this urgency never ceases, and the bladder signals the need to urinate as soon as it is emptied (Urology Care).

I’m not sure when I developed interstitial cystitis, but I know it’s been over a decade since I first noticed that my trips to the bathroom were becoming at first more frequent and then more urgent, interfering with my job and other aspects of my life. Then a few years ago, I developed what I thought was a bladder infection, but when I got tested at the doctor’s office, I was told it was negative. When I asked what I was supposed to do about the burning pain in my bladder, I got the usual shrug which indicated that I should just live with it like I do everything else. The pain never really went away after that. It just got duller or sharper.

I didn’t realize how dangerous it could be to have a bladder in constant distress until I started urinating blood. Apparently my next bladder infection went unnoticed and quickly became a serious kidney infection. After that, the bladder irritation was so severe that it felt like I had to pee as soon as I lifted my bottom from the toilet. I lived in constant agony. When I finally found a new GP, I asked for a referral to a Urogynecologist to get to the bottom of my pee-pee problems.

Since there was some weakness in my pelvic floor, the urogynecologist wanted to start with pelvic floor therapy and prescribed oxybutynin for me to help get the bladder spasms under control during my rehabilitation. In two days, the angry hive of bees in my bladder fell silent. I was in therapy for three months. My pelvic floor showed marked improvement in testing and I was thrilled to see great improvements in the bedroom and the bathroom. As soon as I went off of the medication, however, the pain and burning returned. So did the incontinence in some instances. It was as if I’d changed nothing.

By this time, I had strongly begun to suspect the culprit was MCAS and IC, so I made an appointment with an immunologist and began to read up on these conditions. The low histamine diet is a popular intervention for IC and MCAS, so it was a first line defense for me. I also decided to try quercetin, not only for my IC, but for a multitude of other symptoms I’d begun suffering with since the onset of spring and pollen. Within two weeks of starting quercetin, my IC pain and incontinence were completely resolved, almost as if they had never existed in the first place.

ICMore than likely my interstitial cystitis is here to stay, so I’m incredibly grateful to have found some effective treatments for it so I don’t have to think too much about it anymore. For some, the pain of interstitial cystitis is only part time instead of the constant onslaught I experience. Regardless, it is a disabling syndrome that causes interruptions in sleep, work, relationships, and leading a healthy life. We have to do a better job of getting to a diagnosis earlier and getting relief for patients sooner, even if that means just trying out a mast cell stabilizer to see if it works. I’m sure someone will come tell me why that’s a phenomenally bad idea, but right now, I fail to see why once infection has been ruled out. After all, I’m not sure I would even have this diagnosis yet if we didn’t know what effectively took care of it and what didn’t. That’s my two cents. Take it with all the salt you’d like!

What is Interstitial Cystitis?

9 thoughts on “What is Interstitial Cystitis?

  1. I also just found out 6 months ago that I have IC but it’s been 4 years till I finally got a real from a urologist diagnosis. It definitely affects life, work, and my relationship. I will be starting elmiron this week. I’m really glad that there are others, and it’s nice to read other people’s stories.

    Liked by 1 person

    1. Hi, Jaime. It can be a difficult condition to manage, but I’m glad you have a diagnosis and know what you’re dealing with now. You’re definitely not alone and it can be helpful to find out what works for others. Have you done any research on Elmiron? There appears to be a class action lawsuit for eye damage and vision loss caused by elmiron. You might want to look into it and consider whether it’s worth the risk with your urologist. If you Google it, you’ll find lots of information on it. If I can help please feel free to ask. Best of luck to you with everything.


  2. I’ve had IC for at least 30 years. I’m unable to tolerate acidic drinks, soda or juices. I take Elmiron and am very watchful of what I eat and drink. I’m pretty sure my mother had it as well.
    I always know where the bathroom is though. Lol.


  3. I’ve never had this and so your post has opened my eyes to a condition I didn’t know very much about, and certainly not the potential severity of it and impact on your life. I’m glad to hear you’ve found some treatments that are effective in managing it, and thank you for raising awareness of it.x

    Liked by 1 person

    1. Hi Janeen, I’m sorry to hear you suffer from this, too. I’m glad the article helped you put some of the pieces together. MCAS can be complex and hard to diagnose, but there’s a lot of ways to treat it and some great info out there. I have more articles coming out over the next couple of weeks that talk about treatment and prevention in some detail. Good luck and keep me posted on your progress!


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