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. 

All I Want for Christmas is a Dr. Who Doesn't Give Up on Me

All most little kids want for Christmas is their two front teeth. All I want for Christmas is a doctor who doesn't give up on me. I had to stop doing DMSO installations. I was scheduled to do 6 and had to stop after 4, I was not finding much relief. I decided it is my body and it was not worth the extreme pain and hours of my life I was losing each week recovering from the installation that was not really helping. I feel like it helped in a VERY VERY minor way with nighttime frequency, but it was making sharp, pelvic pain worse, which has always been my worst symptom. I am not sure if it was the DMSO itself or if being catheterized each week was just too invasive for me, but it was not pleasant, it was rather hell-ish actually.

About two weeks into December I have my next appointment with the Uro (a NP does the installations). I am a little nervous he will yell at me for stopping or be angry that the installations were not helping. I have had such bad experiences with doctors in the past who have given up on me b/c their one or two ideas didn't work. They didn't throw me out of the practice or anything, but I ended up leaving b/c I was getting no help with my pain and they were treating me poorly.

One thing I will say about this doctor is that he was SOMEWHAT more open minded than the past ones. When I told him about my failed journey with Elavil, he didn't make me go back on it even though it is his favorite IC med. I just really want him to suggest something else now that I have decided DMSO is not my cup of tea, something that works.

I feel sometimes like I am screaming and no one hears me. A doctor maybe able to help one or two of my symptoms, but no one seems to deal with this one painful symptom that bothers me the most. I have come to terms with my IC in the fact that I know there is no cure right now and I am okay with that, I am just looking for some more support and compassion from a doctor along my journey. I want someone who is my cheerleader so to speak. Does such a doctor exist??

It would also not hurt to find a proper pain management specialist as part of my Christmas wish. I greatly lack proper pain management care and it is really difficult some days. It seems really wrong to me to tell patients that there is no cure for a medical condition, but then refuse to provide proper pain relief. I am definitely asking Santa for good pain management specialists for all my IC sisters and me. 

The Christmas season is a special time and I am grateful for my family, my friends and all that I have, but I can't help but have that one wish for that magical doctor. I don't expect anyone to cure me, I just expect someone to say "I understand and let's help you live the most comfortable and normal life possible despite this horrid condition".

So Santa...if you have some time after dropping off puppies, kittens and hippopotamuses to all the kids out there, if you could give me a map to the most awesome IC doctor on earth, Id' be forever grateful. 
 

From V.I.P. to V.I.P.

I am 27, nearing in on 28 years old. If you asked me what V.I.P. meant when I was 21, I would have told you it stood for very important person. If you ask me what V.I.P. means now, just 7 years later, I will tell you it means vulvodynia, IC, pelvic floor dysfunction.

Growing up I always had friends, but I would say I was somewhat introverted at times. I enjoyed my alone time. I like to stay up late writing screenplays, chatting on Compuserve or AOL or watching Lifetime. I am the kind of person who has always been able to find ways to entertain myself even when I was alone. I enjoyed hanging out with friends and doing typical young people things like going to the mall or calling boys and hanging up...but even if just once a week I liked to be totally alone.

Fast forward to college and everything changed. Life was on the go. I got a taste of the traditional version of V.I.P. (very important person). I became very outgoing and from about 18 to 22 my friends and I used to go to nightclubs every Thursday, Friday and Saturday night. We lived for it. We loved the music, we loved cocktails, we loved being social, we loved guys. 

We were kind of like the younger, Jersey version of the show Cheers. We went to all the same places all of the time. Everyone knew our names, we never waited on line, we got lots of free drinks, we partied with DJs, we made out with hot strangers and the list goes on. We were straight A college students by day and party girls by night. When I look back at it, we had no real responsibilities. Now knowing what real hardship is, it is nice to think about it sometimes.

I remember I had this "rule". I didn't like to sit in clubs. I loved my high heel shoes and always liked to be on the go. Sometimes I would go out at 9 pm and not come home until 4 am and I would stand or dance the entire time. Now this thought is laughable. Chronic pain is so hard on the body. I don't go to bars much anymore, but when I do, I always wanna know the sitting situation. I still like fabulous shoes, but I like to wear them in a chair. 

Being in college for me and being this V.I.P. nightclub goer was surreal. I was living in a fake world. Nothing seemed to matter besides my friends, house music, new clothes and parties. It was in no way reality, but it was fun.

I lived a "normal" transition into adulthood after that...working full-time for the first time, making a decent salary and still going out on Friday and Saturday nights whenever I felt like it. Then right before my 25th birthday the life changing pain hit for the first time.

Sometimes, I will admit I get slightly envious of some people I meet who didn't get hit with IC and such until 35, 45, 55 and beyond. I wonder, why me? Why so young? What would I be doing differently if I was given an extra 10 or 20 years without IC? Then I realize, it is not easy at any age no matter if it be 18 or 60. IC sucks. 

IC has made me change really fast. It has made me realize that health is the absolute most important thing in life for yourself and your loved ones. IC has made me love a one on one meal with my mom, or my husband or my best friend more than I could ever love any night out partying.

IC has really brought me back to some of my isolating ways. Sometimes it is hard to be in pain and be with all the shiny, happy people. I spend more time writing, watching movies and doing other things that were a bigger part of me during childhood, but that I put on the back burner in my early 20s. I do still like to socialize, but I don't do it nearly as much as I used to. I usually try to do something social at least once a week b/c I love my family and friends and don't want to be a complete hermit. But gone are the days of going out three nights in a row. I would collapse from pain and exhaustion if I did that.

I really enjoy gatherings in people's homes now more. They feel safe. There is always access to comfy seating and a bathroom. The nightclub world is no place for a person in chronic pain. I do get thankful for the times that I do get to go dancing or do something of that nature, even if those times are more few and far between. It has become a treat.

I actually don't mind my hermit ways so much as long as I am choosing them. I really do love to write and create things and watch movies.  But now and then there may be something I am invited to and I can't make it to because of the pain. Those are the times I resent IC. Going out all night or staying home and being a hermit are both okay, as long as they are my own choices. I don't like when I have to let IC choose for me, but sometimes I have to if my IC gets out of control. 

So here I am, a woman of almost 28. I have known what it is like to be a very important person...and now I know what it is like to be a person with vulvodynia, IC and PFD. Now that V.I.P. means vulvodynia, IC and PFD to me, it doesn't mean my life is over, it just means it is different. I am finding new ways everyday to educate, to love, to make changes and to do better. Sometimes I stumble, sometimes I succeed, sometimes I cry and sometimes I love my life. 

You know you suffer from chronic female pain when...

Pain is no fun.  When you suffer from chronic female pain, you have to adapt your lifestyle to deal with many unfortunate issues.  I hope that other ladies can find some familiarity, comfort and a little humor in this list.

You know you suffer from chronic female pain when...

-It no longer phases you to bring a seating cushion to restaurants.

-You have no sympathy for those women who think they understand what it feels like to have IC because they had a UTI once during their freshman year of college.

-You have put ice packs and heating packs in places that other women wouldn't dream of.

-You have had to give up a favorite food or drink for the sake of your health.

-You are under 50, but have an "old lady pill box", potentially with more medications than your 75 year old relative.

-You have contemplated submitting your story to Mystery Diagnosis.

-You are the reason that your family or group of friends has to take a ton of potty breaks on a road trip.

-If there are less than four rolls of toilet paper left in your linen closet you will have an anxiety attack. 

-You have been the person to explain to strangers that their body does indeed have a pelvic floor.

-You have had a conversation with your bladder.

-You have been laughed out of the ER.

-You have left a doctor's office crying because someone told you "the pain was in your head".

-You're too nice of a person to wish this kind of pain on your worst enemy.

-You are thankful for any loved ones who believe in you and support every step you take in life.

-You have peed neon orange or blue before and you are pretty sure you are not an alien.

-You feel like smacking people who think you have a UTI or a back problem.

-You get frustrated when people ask you if you are "better yet", even though you have explained to them 10 times that your problem has no cure.

-You consider the phrase "but you look so good" an insult.

-You are glad I posted this list, because you thought you were the only one who had to deal with these things.