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My story
I am currently a college student diagnosed with IC. My symptoms started when I was 18 and I am now 25. I was misdiagnosed for the first four years with UTI's until finally my OBGYN suggested that I may have interstitial cystitis. I went to a urologist and they tested me for cancer first. Luckily, it was not cancer. 
I was fortunate enough to go to a urologist who was quick to identify that I had IC and I started taking two Elmiron twice a day. I was very frustrated as the medicine did not take away my symptoms until months later, but I was warned that that may happen. Once the medicine started to work, some hope was restored. Unfortunately my urologist is NOT very knowledgeable, and all I got was a pamphlet about IC. I did a LOT of research on my own.
During this time I also drank water like crazy, and I gave up soda altogether. I started to exercise and lost 20lbs. I also limited my intake of tomato products and juice as they gave me the worst reactions. I watched my diet to see what I could eat in moderation and what needed to be added to my black list. Please take charge of your life and do as much as you can to make your symptoms better! When I visited my urologist again to see what else I could be doing he said, "You're already doing more than all my patients combined" but honestly that was no thanks to my urologist!
It got to the point where I felt like I was getting MUCH better so I lowered my dose of Elmiron to one pill twice a day. A few months ago I would have posted that I may not need Elmiron at all!
I am not sure what factors came into play; if it was my decreased dose of Elmiron, changes in my diet, etc... but my IC symptoms are the worse they've ever been. I'm sure you can all relate to not being able to put a finger on what exactly causes your symptoms, especially when your symptoms change all the time!
As of today, I am currently going to my PT twice a week to try and see if that helps the problem. My PT told me that my muscles in my stomach and pelvic area are hypotonic which means they are always contracted when they shouldn't be. This will put extra stress on the bladder and cause IC symptoms to get worse.
I have started to do exercises to help stretch these muscles out. It got to the point where muscle spasms were making me unable to go to work, so I started muscle relaxers 3 times a day. I've talked with my doctor about anti-depressants, but to be honest my depression stems from my inability to go to work or do things I enjoy as a result of my IC.
So far the muscle relaxers allow me to get through a whole shift without having to leave.
I'm very happy about this, as doctor appointments are expensive! It also helps me gain my confidence back, which is crucial for me. I'm the worrying type and stress causes your muscles to tighten... it's a vicious cycle I need to learn how to break.
Breathing exercises and just learning to control my thoughts help a lot. Still, it's a process. I try not to think about the long term too much, as it overwhelmes me easily. My PT told me to think, "That's the last muscle spasm I'm ever going to have." Sounds silly, but if I don't think that, I'm going to think, "Oh my gosh can I get through work today?" Not the best mindset.
It's also difficult because I moved away to go to school. I only moved 2 hours away, but car drives make it SO much worse! Drinking water, sitting on a pillow and having correct posture make a lot of difference. Before I was on muscle relaxers I would take some tylenol before getting on the road as well.
I'm happy I found this site because I've kept my IC diagnosis hidden from my friends. They know I've been having health issues, but not why. It's the same at work (only my boss knows since it's started to effect work). I wonder if that is a mistake. The reason I've kept it hidden was because I didn't want them to worry about me or treat me differently, but the more I learn about IC the more I see that people have no idea what it is. Do you think it's better to become an advocate?
How do you support finding a cause/cure without letting IC become your identity?
I was fortunate enough to go to a urologist who was quick to identify that I had IC and I started taking two Elmiron twice a day. I was very frustrated as the medicine did not take away my symptoms until months later, but I was warned that that may happen. Once the medicine started to work, some hope was restored. Unfortunately my urologist is NOT very knowledgeable, and all I got was a pamphlet about IC. I did a LOT of research on my own.
During this time I also drank water like crazy, and I gave up soda altogether. I started to exercise and lost 20lbs. I also limited my intake of tomato products and juice as they gave me the worst reactions. I watched my diet to see what I could eat in moderation and what needed to be added to my black list. Please take charge of your life and do as much as you can to make your symptoms better! When I visited my urologist again to see what else I could be doing he said, "You're already doing more than all my patients combined" but honestly that was no thanks to my urologist!
It got to the point where I felt like I was getting MUCH better so I lowered my dose of Elmiron to one pill twice a day. A few months ago I would have posted that I may not need Elmiron at all!
I am not sure what factors came into play; if it was my decreased dose of Elmiron, changes in my diet, etc... but my IC symptoms are the worse they've ever been. I'm sure you can all relate to not being able to put a finger on what exactly causes your symptoms, especially when your symptoms change all the time!
As of today, I am currently going to my PT twice a week to try and see if that helps the problem. My PT told me that my muscles in my stomach and pelvic area are hypotonic which means they are always contracted when they shouldn't be. This will put extra stress on the bladder and cause IC symptoms to get worse.
I have started to do exercises to help stretch these muscles out. It got to the point where muscle spasms were making me unable to go to work, so I started muscle relaxers 3 times a day. I've talked with my doctor about anti-depressants, but to be honest my depression stems from my inability to go to work or do things I enjoy as a result of my IC.
So far the muscle relaxers allow me to get through a whole shift without having to leave.
I'm very happy about this, as doctor appointments are expensive! It also helps me gain my confidence back, which is crucial for me. I'm the worrying type and stress causes your muscles to tighten... it's a vicious cycle I need to learn how to break. Breathing exercises and just learning to control my thoughts help a lot. Still, it's a process. I try not to think about the long term too much, as it overwhelmes me easily. My PT told me to think, "That's the last muscle spasm I'm ever going to have." Sounds silly, but if I don't think that, I'm going to think, "Oh my gosh can I get through work today?" Not the best mindset.
It's also difficult because I moved away to go to school. I only moved 2 hours away, but car drives make it SO much worse! Drinking water, sitting on a pillow and having correct posture make a lot of difference. Before I was on muscle relaxers I would take some tylenol before getting on the road as well.
I'm happy I found this site because I've kept my IC diagnosis hidden from my friends. They know I've been having health issues, but not why. It's the same at work (only my boss knows since it's started to effect work). I wonder if that is a mistake. The reason I've kept it hidden was because I didn't want them to worry about me or treat me differently, but the more I learn about IC the more I see that people have no idea what it is. Do you think it's better to become an advocate?
How do you support finding a cause/cure without letting IC become your identity?
PM me if you need anything!
Trying to stop my muscles from tensing up through breathing and stretching has made it possible for me to work again. 
I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC. 
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