Feel This Pain: S2E4 Interstitial Cystitis

Author: Ken McKim

(deep bass music) (crash) - Hello and welcome to another edition of Feel This Pain. I'm Ken McKim and tonight we're going to be talking a little bit about Interstitial Cystitis. (deep bass) Okay, so interstitial cystitis is an incurable condition that results in you feeling like you have to urinate frequently throughout the day and night. And will cause you great pain at random intervals. Sometimes when you're urinating and other times when you're just walking somewhere. It's disease full of contradictions. Some people have visible signs of something going on in their bladder, and other people have all the symptoms and no visible signs of anything going wrong inside their body. Currently it's estimated that up to 3.3 million women and 1.6 million men in the United States suffer from some form of this disease.

So what do I mean when I say urinating frequently? Well, the normal amount of urination for most people tends to be around seven times a day, give or take. Someone suffering from IC can feel like they just got to go right now, up to 60 times in a day. Now, think about that for a second. We're not even talking about the pain yet. Think about how disruptive IC is, just because of that. How do you hold down a job? How do you sleep? I mean, these people aren't well rested because their sleep is not what you would call uninterrupted.

It would be bad enough if it were just that part of it. But, no. You also get pain. What kind of pain? Well, that can vary. I guess the best way to imagine it would be a pain roulette wheel.

Where every space on that wheel that the ball can drop into as it goes around, is a varying degree of pain intensity. And it can go from sort of mild burning to a severe burning feeling like you would get with a urinary tract infection. All the way up to like you're going to pass three kidney stones at once. We're talking pain that will just drop you to your knees in the middle of the supermarket. And it can come out of nowhere like I said. You don't just get this pain while you're actively urinating.

Feel This Pain: S2E4 Interstitial Cystitis

This pain can come and go throughout the day whenever it wants. And I need to point this out, the pain that we're talking about isn't just confined to the bladder. Pain like that doesn't just stay in one place.

It radiates, if you will. It kind of spreads out. So the pain we're talking about, the burning, the stabbing, the cramping, isn't just in your bladder. It radiates out throughout the pelvic region, if you will. You know the pelvic region, where all your sensitive parts for men and women are located. If you're catching what I'm trying to say here gently. Things hurt. So, the other question you might be wondering about now that we're on this sort of topic is that sex is not exactly a favorite activity of those who have IC because, come on, did you feel like wanting to have lots of sex when you had a urinary tract infection? Probably not.

Did you feel like engaging in wild acrobatics in the bedroom while trying to pass a kidney stone? No. Not only do you not get a good nights sleep, not only is it hard to hold down jobs or have any kind of normal social life, sex is pretty much out of the question when you're in the middle of one of these flares. Now again I told you that some people have visible signs of the disease inside their body. There's the healthy bladder which looks like this. And some people who have IC, their bladders will look perfectly normal like this one. And then other people who have IC will have bladders that look more like this.

So treatment options. There are a variety of medicines that you can try. A lot of people before they go that route though will try what's called an elimination diet. Because some people have found a little bit of relief by eliminating certain foods and beverages from their diet. And the only way to know what works and what doesn't is to slowly kind of take things out of your diet and then add them back in. That's a long and tedious process.

It can take weeks or months before you finally figure out what works best for you. Now there are like I said medication options like for example, there's something called pentosan poly sulfate. That's a fun name isn't it? There's another option where you can inject something called dimethyl sulfoxide directly into the bladder using a catheter. Now if these sound rather expensive, you'd be right. And if you don't have great insurance then these kinds of therapies might not even be an option for you. Definitely want to look into that and talk to your doctor and see what's covered and what's not before you even go down this road. You're already in enough physical pain, you probably don't want to add financial pain to the story as well.

If you know someone who has IC, reach out to them, be a good friend, be compassionate cause they're living through a nightmare that they cannot wake up from. So, that's all the time we have for tonight. If you have any questions for me, please don't hesitate. Send them to me at ken@dontpunishpain.com You can also follow me over on twitter @dontpunishpain So that's it. Thank you for watching as always. I'm Ken McKim and until next time you take care.

(bright synthesizer and piano music).

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