Tuesday, May 1, 2012

What It Feels Like to Have Interstitial Cystitis

This post is not pretty. This post is not sugar coated. This post is scary, this post is raw, this post is real. That's what IC is, it's scary, raw and real. That's also what life is at times. 

So what does it feel like to have IC? 

It hurts, it hurts like effin hell. Imagine someone taking a tub of battery acid and throwing it over your bladder when you least expect it, that's how it feels. When you have IC there can be so much pressure weighing on your bladder that it feels you are going to throw up and now and then, you do.

IC can feel like someone is taking a knife or a hot poker and stabbing you in your genitals over and over and over again. Some other days it may feel like a million pins are stabbing your genitals. Don't forget about the electric shock type nerve pain that can come with IC. Sometimes you may jump out of your chair or make a noise as that painful, electric pulse sears through your genitals, pernieum, spine and bladder.

Sometimes IC can make you feel like your pee or your genitals are truly on fire. There are very few ways to put out this fire. Medicines, creams, gels etc. Sometimes they work, sometimes they don't. IC can make it hard to sit for a long period of time because sitting causes pressure on the pelvic and bladder region making symptoms worsen.

If you have IC sometimes you will get the overwhelming urge that you have to pee maybe one, two or three times an hour (or more for some). You will stop whatever you are doing and RUN to the bathroom. If you ignore this urge b/c there is no bathroom available you will be in intense pain. Once you get to the bathroom you sit there miserable. Even though your body is saying that you MUST go, sometimes retention gets in the way and it can take ten minutes for the urine to come out. Finally, you have relief (maybe a lot of urine came out, maybe only a few drops) but not for long as you may be doing this same activity again in an hour if not sooner.

This illness can make you itch and have spasms in places you never imagined. These spasms can make it hard to walk from one room to another. Concentrating as your bladder spasms can be near impossible at times.

IC an make you fatigued all the time. Living in pain is hard. Living in pain can make getting up or taking a shower a challenge. Chronic pain wears the body down. You may see many people with IC doing normal things: shopping, working, driving, dining out. It doesn't mean they don't hurt. When an illness has no cure, you do what you have to do and smile to mask the pain. 


Having IC can lead to depression and anxiety. IC can cause you to need more time to rest and it can prevent you from being able to participate in certain activities. Friends and family may not understand. The lack of understanding can make you feel isolated leading to more depression and anxiety, it's a vicious cycle. Also, not knowing where bathrooms are when you leave the house can be a big trigger of IC anxiety.

These are the main symptoms, there can be many others. This disease is ugly. This illness is a monster. This illness wants to dominate and win, but you must refuse to let it win.

This post was not pretty. This post was not sugar coated. If you didn't like it b/c you thought it was too blunt, too honest or too gross then maybe you can't handle life. Not all parts of life are rainbows and sunshine. 

IC hurts. IC is depressing. IC is not pretty, but IC is real. 

8 comments:

mccollum1022 said...

I thought this was right to the point. No beating around the bush. You did leave out about how horrible sex is. This illness causes alot of relationship issues.

Rubens Beef said...

Thank you SO much for writing this! I posted this on my Facebook wall so that people could understand what it's REALLY like for us IC patients!

Anonymous said...

Beautifully said and completely true! Great blog!!

Jennifer said...

Excellent descriptions of how IC affects one's life!

Cheryl said...

Wow! You did a great job describing this illness/hell. I wish everyone in our lives would take the time to read it.

ciinderellaa said...

EXCELLENT!!! Thank you for putting this into words that I can share!!! Printing this to share w/ my doctors and friends/family. :)

Anonymous said...

You don't know how many times I've had people tell me "but you look so healthy!" IC is truly a hidden disease and it can be exhausting to keep pretending you're not in pain. Thanks for writing this.

Samantha said...

Even though this post isn't "pretty" I think it's necessary. Hope you're having a pain-free day!

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