My IC History

When I was first diagnosed with IC, I was so scared. I didn't know what I had and I was told that there was no cure and that I would have it for the rest of my life. I felt like a helpless and hopeless victim. I was 21 years old! I had my whole life in front of me. And it shattered to a million little pieces. My life turned into a fiery hell, filled with constant pain and countless doctors visits. When you google Interstitial Cystitis, it tells you that it is a painful condition due to inflammation of the bladder wall. It says that the cause is unknown. The cure? Unknown. The truth is, they don't know. It is such a mysterious disease and the medical world does not fully understand it yet. Google describes the symptoms as pain during intercourse, pelvic pain, urinary discomfort, frequency, urgency. Yes, I had all of those symptoms, but IC is much more than that. Google fails to mention depression, loneliness, isolation, anger, fear, anxiety, insomnia. IC changes your entire life. My main symptom was pelvic pain. I was in constant pain, all day every day, no matter what. The pain felt like a burning sensation in my bladder, like it was on fire, like there was acid boiling away my insides. There was also shooting, stabbing pain that would go up and down my urethra. Not only this, but my pain will radiate to other parts of the body. My whole torso would be in pain. Mostly it would spread to the left side of my body and into my back. It felt like pin-pricks of pain all over. The only time I would not be in pain was when I was asleep. But attempting to fall asleep while in that much pain is a challenge in itself.

My pain level was usually at a 7-9 every day. I would notice that it would get worse if I ate something my bladder did not like, if I was stressed or tired, if I tried to have sex, or sometimes for reasons I couldn't quite pinpoint. I also experienced frequency and urgency. Sometimes I would have to pee every 5 minutes. Other times, I would only have to pee every hour. Sometimes, I would feel like I had to pee, and nothing would come out. I would spend hours crying on the toilet or laying in bed. I was scared. I didn't know what was happening to me. No one did.

I visited many doctors. I researched many ways to "manage" IC. I learned about the IC Diet. I attempted to follow it the best that I could. I realized that I could no longer eat the foods that I loved. Just a few bites of a pizza, hummus with spices and lemon juice, or some chocolate would cause such immense pain that I learned never to touch those things again. I had to read every single ingredient list of every item I bought. I realized that I could no longer shop at the typical grocery store because almost every single product had something in it that would cause me pain. I was lucky that I was never a big coffee or soda drinker, so I didn't have to worry about the difficulty of cutting those things out of my diet. It took me a long time to cut out alcohol. I believe I was partly in denial. I didn't want to change the way that I lived my life. I loved drinking, partying, and going out with my friends. But I learned quickly that a few sips would cause me intense pain. The type of pain where I would lay in bed for a week, crying and cuddling with my heating pad. Just the memories of it makes me nauseous. Eventually, I accepted that I would have to change my diet and cut out the things that I loved. If I wanted to feel better, I had to do it. I tried to view it as a temporary adjustment, rather than permanent, because maybe, one day, if I feel better, I will be able to enjoy it again. But not now. Now was a time for healing. It took me a long time to realize this. But once I did, and once I altered my mindset, things got a bit easier. That was one of the most difficult humps though - understanding and getting past my addiction to food and beverages. Making positive lifestyle changes to achieve better health.

When I was first diagnosed, I tried every drug, procedure and treatment my doctors recommended. I saw three different doctors, including a urologist that specialized in IC treatment. I tried Elmiron for 4 months with no positive results and decided to discontinue use. I didn't like the side effects (hair loss?!), I didn't like that it only worked for some patients, I didn't like that the medical world didn't fully understand why it worked in the first place. I didn't like that it was a new drug, so the long-term side effects are unknown. And I didn't like the idea of taking such a new, misunderstood drug for the rest of my life. I didn't like feeling like a guinea pig in an experiment, testing out new drugs. Plus, I experienced stomach aches and a spacey, out-of-it feeling when taking it, so I decided it was not for me.

I tried Elavil for a couple weeks. I really did not like this drug. It is an anti-depressant and it made my mood swings extremely terrible. I felt like I wanted to cry all the time. And it made me super drowsy. I felt like a dead robot. I discontinued using it.

I also tried Nuerotin and Hydroxyzine for about 2 months. I did not experience any relief, so I stopped taking these as well.

I tried bladder instillations, where a solution of Elmiron and other "good" things are put inside your bladder via catheter to help it heal. I got about 5 until I stopped doing them. Every time afterwards, I would leave the doctors office crying in pain. I hurt so much worse after getting this "treatment"! I felt so stupid for "following the doctor's orders", when the doctor did not really know what they were doing. In my opinion, they were hurting me, not helping me. I don't blame them. They're trying their best. There are few treatment options available and this seemed like the best option. And I was desperate to try anything.

I also got a cystoscopy with hydrodistention so that my urologist could confirm that I did, in fact, have IC. I was very scared to get this procedure done and I am very glad it is over. I will never do it again, but I suppose I am somewhat glad that I got it done. At least there is physical proof that I have IC, and I'm not some crazy woman claiming I have pain to get some Oxycontin. I was put asleep during the procedure, the doctor filled my bladder with fluid, looked around and took pictures. Afterwards, she showed me the little white dots on my bladder that are characteristic of IC. (But we don't know what causes those little white dots.) I went home with pain medication and I was in bed for a week. I peed blood the first day. I could barely walk. My bladder, my torso, and my lower back were in extreme pain. It hurt to move. It felt like razor blades were inside of me. It hurt to exist. This is another memory I try not to think about too often.

After this, I took Oxycontin every day. I couldn't go without it. The funny thing about pain meds is that even though it does make you feel good for a little bit, it does not take away the pain. The pain is still there, it's always there. You just forget about it for a little bit. I also took Xanax to control stress and anxiety to keep my pain levels down. I took Pyridium to help with the burning sensation I would get every time I would pee. There was one point where I was taking all of these drugs. And still, no relief really.

Testing out all these drugs made me very uneasy... I feel like it added to my problems instead of helping them. All the chemicals and toxins were just adding more stress to my already weak and sick body. It's hard to tell what kind of side-effects were caused by which drugs, since I was taking so many at different times. My wake-up call happened when I got intense, sharp pain out of no where and thought that I was having a heart attack. It hurt so bad, I couldn't breathe, I couldn't move, and I started having a panic attack. My boyfriend at the time called 911 because he was so scared. I was scared. These things shouldn't be happening to a "healthy" and "normal" 21 year old girl.

You can imagine what all of these things did to my social life. Constant pain doesn't really make you the happiest person in the world. I was not a pleasant person to be around. I used to be the most positive, friendliest, upbeat person you would ever meet. She disappeared when I got IC. I was almost always in a bad mood. I lost a lot of "friends". No one could really understand that I did not want to go out anymore. I was in constant pain. All of my friends were young and going out to clubs and bars. It's really hard to get motivated to go out when you're in so much pain that you can't even dance, you can't drink, but you can watch your friends drink! I felt like I couldn't do anything anymore. I couldn't drink, so going to parties and social gathering with alcohol was difficult. I couldn't eat, so going to restaurants and potluck parties was devastating. I was afraid to eat things because it may cause me pain. All my dreams of traveling and seeing the world were gone. Just getting through a day was a struggle. I felt like a young girl trapped inside an old woman's body. I was extremely sick at the age of 21. This should not be happening to me!! Where did my good health go?!

After I got IC, I also developed other issues as well. Lactose intolerance, extreme GERD (acid reflux), extreme allergies, eosinophilic esophagitis, and sensitivity to chemicals, weather, etc., to name a few. My whole body was breaking down. This is so common with IC.

IC stole my life. It robbed me of my happiness, it crushed my dreams, and it ruined my body. It killed my physical, mental, and spirituality body completely. I hit an ultimate low. I was allowing IC to slowly kill every part of me. After constantly getting let down by the doctors, I decided I would attempt to take my health into my own hands. I began a quest to figure out what was causing my IC and what I could do to make it go away. This is when I turned to alternative treatments and stumbled upon the raw food diet.