I suffer from IC

[MShutt]

I have been dealing with bladder pain since 2003. That’s when I remember it starting. I am 26 yrs old, married and have one son. It wasn’t until 2009 that I was diagnosed with IC. Before that I went through many other predictions; Endometriosis, IBS, Ovarian Cysts, and even one doctor told me it was just “anxiety” that was causing my pain. IC has greatly impacted my life. My symptoms are: Severe aching, burning, cramping, pulling pain in my bladder, urgency, headaches daily, fatigue daily, insomnia, irregular periods, “IC Belly”, body aches and mild scoliosis. I have pain practically every day and thank god I have the opportunity to be a stay at home mom for now because working with IC is pure hell. I am kind of convinced that I have Fibromyalgia now. The same doc that told me all is anxiety also told me that I’m too young to have Fibro. (Yeah I don’t see him anymore.) I think one of the biggest problems I face is actually going to the doctor to talk about my symptoms. I feel ashamed and embarrassed. I basically can’t live without Tramadol and I feel like the doctor thinks that’s all I’m after. I hate going and discussing another symptom with the doctors but I CAN’T DEAL WITH THIS ANYMORE! This pain is just unbearable daily.

I have a wonderful husband who does care but he just doesn’t understand. It’s hard not to talk about something that’s on your mind ALL day long and I just think he gets annoyed by me complaining so much. I’m really looking forward to some support. It’s just nice to talk to someone else who suffers from the same problems. I am going for Surgery one week from now to have the hydro/cysto procedure done. As awful as it sounds I’m looking forward to it. But I’m nervous about the pain afterwards. I’ve been on Elmiron in the past and at the time it made me very sleepy and it was hard to work through. It’s also very expensive. After a year of being on it; it did very little to release my pain. I have changed my diet but it’s also hard to really stick too when you have a husband and young child to cook for. But I miss chocolate; I miss WINE, spaghetti, coffee, taking vitamins, going out dancing, wearing tight jeans, and just being ME. Thanks for listening I know I typed a whole story here!

[ginaaa22]

I have been dealing with bladder pain since 2003. That’s when I remember it starting. I am 26 yrs old, married and have one son. It wasn’t until 2009 that I was diagnosed with IC. Before that I went through many other predictions; Endometriosis, IBS, Ovarian Cysts, and even one doctor told me it was just “anxiety” that was causing my pain. IC has greatly impacted my life. My symptoms are: Severe aching, burning, cramping, pulling pain in my bladder, urgency, headaches daily, fatigue daily, insomnia, irregular periods, “IC Belly”, body aches and mild scoliosis. I have pain practically every day and thank god I have the opportunity to be a stay at home mom for now because working with IC is pure hell. I am kind of convinced that I have Fibromyalgia now. The same doc that told me all is anxiety also told me that I’m too young to have Fibro. (Yeah I don’t see him anymore.) I think one of the biggest problems I face is actually going to the doctor to talk about my symptoms. I feel ashamed and embarrassed. I basically can’t live without Tramadol and I feel like the doctor thinks that’s all I’m after. I hate going and discussing another symptom with the doctors but I CAN’T DEAL WITH THIS ANYMORE! This pain is just unbearable daily.

I have a wonderful husband who does care but he just doesn’t understand. It’s hard not to talk about something that’s on your mind ALL day long and I just think he gets annoyed by me complaining so much. I’m really looking forward to some support. It’s just nice to talk to someone else who suffers from the same problems. I am going for Surgery one week from now to have the hydro/cysto procedure done. As awful as it sounds I’m looking forward to it. But I’m nervous about the pain afterwards. I’ve been on Elmiron in the past and at the time it made me very sleepy and it was hard to work through. It’s also very expensive. After a year of being on it; it did very little to release my pain. I have changed my diet but it’s also hard to really stick too when you have a husband and young child to cook for. But I miss chocolate; I miss WINE, spaghetti, coffee, taking vitamins, going out dancing, wearing tight jeans, and just being ME. Thanks for listening I know I typed a whole story here!

You are NOT to old to have fibro. I am 20 and was diagnosed at 18 with it. I was once told that I was too young to have IC also. Usually before a dr will give a diagnosis of fibro they have to do testing to make sure you dont have any autoimmune diseases like RA, MS and other things. All my tests came back neg. Have you tried cystoprotek? it works great for me and is cheaper than elmiron.

Have you tried to see a pain management dr who treats IC patients. Do you live by a university or big hospital? If you do you can get on their website and look up dr's by conditions and find ones who treat IC. Have you tried PT? This has helped my pain a lot. Oh and dont feel like your alone. I think about my issues all the time--its so hard not to. Its also hard to talk to people who dont understand because they are healthy. We dont look sick because we have an invisible illness.

[VickiB]

Welcome to the ICN Mshutt!

I think one of the biggest problems I face is actually going to the doctor to talk about my symptoms. I feel ashamed and embarrassed.

I think that's probably pretty common, at least it the beginning. Eventually I came to realize that doctors are immersed in this sort of stuff all day and I'm just another one of many. I think they just see it all as data necessary to solve a puzzle.

It can be tough trying to express your symptoms, how they make you feel, etc, with those who don't understand. I find I try to 'spare' my husband, and now do most of my IC sharing here. He's a good man and all, but if I say something he seems to think he's required to do something to fix it. He can't fix it. It's a dilemma for him. Anyway, you'll find lots of support here at the ICN.

I hope you have good results from your cysto/hydro next week. Some here use that quite successfully as their treatment of choice for IC.

Vicki

[MShutt]

Thank you both for the added support! I am going to start new meds as soon as the procedure is over with. I have just been informed about Cysto Protek and another called Atarax that I am def. going to check out. P.T is also an idea. Just right now I stay home with my boy and would have to drag him with me. Not really a big deal but I'll try the meds first. I am fortunate to live within miles of a wonderful university (Penn State University.) There are a lot of good doctors in this area, I just need to keep searching for the perfect one! Oh and just a question off the topic....How do you all add all your info after each time you post? Take care ~ Michelle S.

[VickiB]

a question off the topic....How do you all add all your info after each time you post?

On the top of ICN pages there is a blue bar with links, the first on the left being "User CP". Click on that. This page will have your User Control Panel on the left hand side with various link options. Click on "Edit Signature", -there you can write in anything you wish to come up with all of your posts.

I know this is a rather brief description so if it wasn't enough (or clear), feel free to ask for clarification!

Vicki