Interstitial Cystitis (IC) Support Group

I'm very sorry for everything that you are going through. I am with you... everyday with IC can be an absolute nightmare but I always remember that I am strong enough to fight this. Regarding your questions...I did not have success with the bladder distention. My symptoms got worse after this. But, I've heard that some people's symptoms got better after this procedure. I believe TENS is like electrical stimulation. If that's what it is, it actually worked for me. I had this done while I was going through acupuncture. It wasn't covered by insurance so I had to stop but I had a lot of success with this and acunpuncture for a few months. I use Amitriptyline (Elavil) at night 50MG and I've noticed that I sleep better and the pain is also better during the following day. But when I have my period, for example, the Elavil isn't enough. I also take Vicodin when the pain is very extreme and it helps me. Blood and cystals in your urine is not normal. I would get that checked out as soon as you can because it could be something more serious. I also have pain in my urethra and down to the opening of my vaginal area. I know others who have the same kind of pain. I believe the pain is linked to IC. I've had IC for 5 years and I was lucky to have 2 months of remission with no pain. Each person varies, some people have longer periods of remission, others have pain every day. As of right now, there are things that help the pain of IC but not cure it. Some people go through physical therapy (pelvic floor therapy) and have good results and some don't. The thing that has been working the best for me is staying very busy. I have a very physical job. When I start my shift, the pain can be bad but the more I focus on my job, the more the pain seems to go away. But... I can't seem to run anymore. I think the bouncing up and down irritates my bladder. I also use ice everyday because I believe it helps with the swelling of the area. I hope this helps you. I also haven't had sex with my husband in a very long time because it seems like whenever anything enters the area, including a tampon, I have horrible pain. As far as not sleeping well, I think the best medication is Amitriptyline because it helps your bladder sleep. Please keep us posted. I hope you start to feel better soon. You are not alone. Take care. :)

Laura

I haven't tried very many therapies. But when I am in a bad flare I take Ultram(Tramadol) for the discomfort and a Xanax to sleep. Works very well.

1. I've had two bladder distentions. One when I was about 18, one at 22. Immediately after the distention and for a few weeks after that the pain was really bad and I used Vicodin and Pyridium extensively for the pain. But shortly after that my bladder seemed to calm down. i don't know if it is because the reduction in pain after the intense pain was the relief or because the pain really was less than before.

2. As for pain killers, I've only used Ibuprofen, Vicodin, and Norco. Ibuprofen doesn't do the job, Vicodin and Norco do most of the time.

3. I've haven't used a TENS unit...yet. I'm going to talk to my doctor at the end of the month about using one. I have insurance for a couple weeks and am trying to get everything I can done while I do so that I can have a year's supply of medication and therapeutic assistance.

4. There is always blood in my urine. Usually not a noticeable amount. I wouldn't even know it was there if it weren't for home urinalysis kits and UAs at doctor's offices. But occasionally there is a large amount of blood. Those days are extremely painful. I've never had crystals in my urine except for when I had kidney stones 4 years ago.

5. Most of my pain is from my bladder, but urethral pain is also a problem. I know it is for others too.

6. Diagnosed 5 years ago. Still now under control :-( Hope you have better luck then me.

Cyn
www.livetotalwellness.com/cyn

Sorry you have IC. It is a nasty condition. My wife has had it since 1994. I'll tell you something...everyone responds differently to medications & therapy. My wife has the Hunner's ulcers & has moderate to severe pain. She has been to numerous doctor's in several states. She has tried everything available for IC from the elavil to nerve blocks & distentions. Even in combinations, nothing seems to work for her. She tried all the anti-depressants, & the heparin concoctions. She even went as far as trying fentanyl which is for terminal cancer patients. It worked but she was a zombie & finally gave it up after several years.

She now takes 120mg kadian 2x/day, a morphine sulphate drug, which controls some of the pain. Then she takes vicodin for the break-thru pain. Nothing else seems to work. TENS is short term at best, but didn't work for her. Ultram is a mild pain killer so it might work depending on the severity of your pain. Didn't for her.

I recommend going to the IC-Network & check out their site. They were the first & it has great info from the newest research to dietary ideas. Sign up for the free monthly newletter & on-line chats with distinguished doctors in the IC field. Just so you know, its no easier to deal with this from the husband's side either. I have to live with her pain every day. I wish you the best.

I tried the bladder distention also and had absolutely no improvement probably worsened the problem. The only thing that works for me is taking Vicodin during the day with bad pain just so that I can continue to work and have a somewhat normal life. I also take Elavil at night to help with pain and sleep.I've tried several distillations but had no luck at all. I have pain every day but am managing my disease with the pain medications. Good luck. I hope you find what is right for you. Just like everyone says everyone is different and you have to find what works for you. I would highly recommend going to a pain specialist. That is when I began to see a light at the end of the tunnel.If you need to talk you can always find lots of good help on this website. There are lots of informed, caring people who can commiserate with you and give you suggestions.

Kelly