Everyone who subscribes to this website is now a contributor. So that means you can go and add to this page to share your story, or help someone with something that has helped you. I want to ask all of you to please just share on this page, because I have all the other pages set up certain ways. If you need help or have questions, or something isn’t working please e-mail me at ihaveic.com@gmail.com. Thank you so much. Without all of you this page would not be so successful! OK! I have been busy learning a thing or two about being a contributor and I apologize for not knowing this before. But if you want to share your story you have to go into the site admin area right above the button to log in. And you have to do your story as a post and there’s no option to put it under this page. So I have made a category on the right hand side of the post page that says share your story. So before you publish, check the share your story category and it will go into that section. I am going to keep this page up so there are directions on how to share your story. After you join, you won’t be able to share right away, I get an e-mail saying you joined and then I make you a contributor so that you can add your story. So I’ll send you an e-mail and let you know I’ve changed that. Thank you for the people that have shared their story already, and thank you to everyone who visits this page. I appreciate it so much! I have been looking through the site and trying to start making updates, and I realized, I have never really shared my story. That is one of the things that is the main reason I started this site, to get my story out. So you have heard bits and pieces of my story but have never really heard the whole story. Our stories are important to us. It’s what we have to tell everyone about our journey through this condition. So we need to hold on to our stories, share them, and leave a part of us with people every time we tell it. Every person we tell, and every part we leave with that person is just helping each of us educate more people, and hopefully educating enough that someone will come up with a cure. So here is my story. It’s not fancy, it’s not pretty, it’s the truth, and how I feel.

My name is Cathy and I have Interstitial Cystitis. That’s how I feel, that my disability is who I am. It controls how I feel, what I can do on a daily basis, and pretty much every aspect of my life. I have been thinking a lot and trying to figure out how exactly to write my story so it would make an impact, the kind of impact that would show someone just how horrible this condition is. So I’m going to try my best to show you what exactly I go through. Some people I’ve talked to are worse than I am some are better. I’ve been labeled with Chronic Interstitial Cystitis. I looked up a definition of chronic just for this story, so I could really explain what it means to have a chronic condition and this was the best part of the definition I could find. A chronic condition can refer to a persistent and lasting condition. This is exactly how I would describe what Interstitial Cystitis is, persistent and lasting.

I was diagnosed with Interstitial Cystitis in March of 2006, when my gynecologist told me that I was in too much pain for it only to be my endometriosis and that it was possible that I had Interstitial Cystitis. I went home and did the research on what Interstitial Cystitis actually was. What I saw horrified me and I prayed I didn’t have it. Shortly after the initial meeting I had a cystoscopy with hydro distention and it was found that I did indeed have Interstitial Cystitis. The only thing I remember was feeling very depressed, wondering why me, and just the feeling of my life would never be the same again. I did indeed go through the 5 stages of grief for myself, for the life I would never be able to have. The acceptance didn’t come until 2009 when I finally decided that this was my life and it had to be ok. My gynecologist also put me into menopause, because my Interstitial Cystitis was enough to deal with, with out having to have my endometriosis coming back on top of that. I have been in menopause ever since. So dealing with both of those things was extremely difficult.

My gynecologist suggested I go to an urologist, after the Elmiron and the bladder instillations I was going through were not helping with my pain or frequency. I was urinating 30-40 times a day, a lot of times, about 1-2 minutes after I had just gone. The feeling of having to urinate again, right after I had just gone, was extremely frustrating. The feeling of having to urinate was so bad, that I would go to the bathroom and try to push the urine out. Obviously there was no urine there, if there was it was very little. This of course increased my pain. The worst time for me would be right before bedtime, and I would go 10-15 times just before I went to sleep. It took me almost 2 hours to get to sleep every night because I would feel I had to urinate so badly. It was frustrating and painful. I went to see the urologist in January of 2007; he did another cystoscopy with hydro distention to see how bad the Interstitial Cystitis was, and to see if the filling of my bladder with the fluid (the hydro distention part) would help my bladder like it does with some people. He made an assessment about how bad the Interstitial Cystitis was so that he could figure out a plan of action to help me. Right away I was started on a regime of medications. I was taking about 20-30 pills a day, including many controlled substances, such as vicodin and methadone. The amount of pills I have been on for the past four years have been well, insane is the only word I can think of. I have had so many reactions to them. I have been so tired that I can’t stay awake during the day, I have gained way too much weight, I don’t realize I haven’t done something I was supposed to (like lock the door or turn off a light or what I was saying mid sentence, I had a very hard time carrying on a conversation), it has caused many changes in my life, ones that I’ve had to deal with because if I stopped the medications my pain would be worse.

So after meeting my urologist, starting the medications and the bladder instillations, and finding that these methods weren’t exactly working, the surgeries started. After the initial hydro distensions, I went to a pain clinic in the same hospital my doctors worked out of. They tried a short-term nerve block to see if it would work. It was supposed to last from two days to a week. Mine lasted two days, after they found it had worked they performed a radio frequency ablation. Two days later, I was walking around Disney World, which was amazing considering the pain I had been in. The ablation did not last long; I had a really hard time with my pain after that. It started up again; I was living at a pain level of nine out of ten. The doctor wanted to change my meds again, and I wanted to as well, because of the way they were making me feel and I didn’t feel like they were helping me.

My next surgery was a sacral nerve stimulator, or an interstim. It is like having a tens unit on the inside of you. It started with wires coming out of my back with leads attaching to certain nerves in my body. This was the test part of the surgery. A man from the company that made the batteries would call me everyday or every other day, so we could switch frequencies and move to different leads. This part was difficult because we would find leads that were good, and then leads that would increase my pain and frequency. So we finally found a frequency and side of my body that the lead was on that worked really well. I went in to have surgery to remove the leads on the side of my body that didn’t work, and attach the leads that did work to a battery. Right after I woke up from my surgery, I could feel that the battery wasn’t as effective as the wires were. This was very frustrating, especially having these wires in my back for so long and then going through two different surgeries to have this done. But I kept the battery on and tried it for as long as I could.

Awhile after I had the interstim done, the pain started coming back. We did some more switching of meds, tried different milligrams and different doses. I had a pudendial nerve block done to see if it would help with some of the pain. It helped for a while but after the pain came back I didn’t have many options left for surgeries; I was pretty much looking at getting an Illeal Conduit Urinary Diversion or a Urostomy Bag. I wasn’t looking forward to this, but I did not have very many options left. I had been working during this whole time. I would go back to work about 48 hours after I was done with my surgery. I was working in a home for people with physical and mental disabilities. So I didn’t exactly have an easy job. I went from a house where I was lifting all the time to a house where I didn’t have to right after I had my interstim surgery. So the next time I met with my doctor I was really scared. I didn’t want to have a Urostomy bag. My doctor told me how he had gone to Europe to exchange ideas with urologists over there. He told me that he didn’t want to go and just give me a bag without trying other things first. He wanted the bag to be my very last option. There was an option for me, to see if diverting my urine would help me feel better. It was a surgery they had been practicing in Europe. Out of all of the countries that were represented at this conference, and all of the patients that had had this done, there was only one patient this surgery didn’t work for. This surgery has been used for different reasons, but never for Interstitial Cystitis. He wanted to give me Bilateral Nephrostomy Bags. What this would do, was put tubes in my kidneys, there would be small balloons in my ureters and I would have bags attached to the tubes coming out of my kidneys so that the urine would come into the bags instead of in my bladder. So I agreed to the surgery, and I had wonderful results. I had never felt so good. I had had a very hard time recovering from the surgery, and this is when I finally went out of work. This was April 29, 2008. I had to have the balloons moved every two weeks so that they wouldn’t leave any scar tissue. I had the tubes in for seven weeks. It was really difficult, I had a nurse coming to my apartment about every other day so she could change my bandages, I had the tubes stitched into my skin and of course they needed to be kept clean. However, I could not do it, so I needed a lot of help. So after seven weeks the tubes were taken out. The day they were taken out the pain returned. It came back with a vengeance.

My urologist started me on different medications again, and told me I had to make a decision as to whether or not I wanted a Urostomy bag, or if I wanted to get a neobladder. The difference between the two is that the Urostomy bag would be draining from a stoma (made out of part of my intestine) into a bag. The Neobladder I would have no bag, they would make me a new bladder (still keeping the old one) out of part of my intestine, I would still have a stoma but I would catheterize the stoma to get the urine out. So I was so scared about catheterizing the stoma, that I got the Urostomy bag. It took me a couple of months to recover, and eventually the pain returned. So I have had my medication changed again, and am still in pain. So my next step is to get the neobladder. There really isn’t a lot of hope for change with the neobladder. It is a very difficult surgery to recover from, so we’re trying to get me in the lowest amount of pain that I can be. The other thing I have going against me is that I will also have to get used to having another organ. The reason I would like this surgery is because I have problems with my Urostomy bag. I get blisters, and I have to have a lot of different clothes so that my bag will not show. So I would like to get my skin cleared up, and I want to have some more confidence for myself.

So what is my life like now? I don’t work, I don’t drive often, and I don’t live on my own. I have to live with my parents because there are things I can’t do on my own. I have a hard time with laundry, carrying the hamper, I can’t use a vacuum cleaner, I have a very hard time going up and down stairs and there are days I can’t get out of bed because of the pain and honestly I just don’t feel like getting out of my bed. This condition makes the quality of life not very good. I don’t have much of a social life, because there are days when I can’t get out to see my friends. I mostly stay home in my pajamas because I don’t feel like getting into anything else. I have a few friends and my family who are very supportive. They have gone through hell watching someone they love go through this. I feel horrible because this has happened to me and I have to put them through this. This condition did not happen to them, and it’s not fair for them to have to watch me go through this pain. But it shows me how much they care about me and love me. That means a lot to me, it’s about all I have right now. Depression is an issue, because with everything that is going on with this condition, well all I can say is who wouldn’t be depressed. I live at a pain level of about 8 out of 10 everyday; a good day is about a 4-6 out of 10. I pray for a cure everyday, and pray that we will get some attention to this condition so that we will hopefully find someone who will do something about this. I feel the more people that know about this the more someone is likely to come up with an idea of how to find a cure. I just hope that someday someone will be able to help us by finding a cure.