Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
I thought I had finally beat this ugly IC pain when I started using these pain patches. 25M a patch, a new one every 3 days. Then the pain started breaking through......UGH!! The dose was upped to 50M but with no relief. The side affects are horrible so I don't think I'm going to try a higher dose. THIS JUST SUCKS BIG TIME! Since this is a narcotic, I can't just stop using the patches cold turkey. I'm sick of calling the doctor about it. Sorry for being such a downer :(
KendraRuth
I am so sorry that the pain patches are no longer helping and I can understand how down you must feel over the fact that you thought you were getting better, beating it to only end back up to the pain, I can totally relate. I had thought that I was better too for a while only to end up like you back in the pain, I got so mad, frustrated, and beyond depressed. So like I said I am so so so sorry lady, just please know that your not alone in any of it, need anything message me, sending prayer, big hugs, and happy thoughts your way.....xoxoxoxo
RascalFlattsFan
Thank you my friend :)
deleted_user
Hi there, I am so very sorry that you are experiencing severe pain again. My heart goes out to you. Like you, I felt okay for awhile and then the pain became very severe and hasn't went away. My doctor up'd my pain meds but it doesn't appear to have made a difference at all. I cannot stop these cold turkey either, even though they really aren't helping. You don't ever have to apologize for being a downer.. I hope and pray that your pain will decrease and that something will work for you. This disease is so painful and I'm irritated that there is no cure. If you ever need to talk, you can always write me. I know exactly how you feel, always calling the doctor and your pain patch not working anymore. It is terrible. Like Kendra said, you are not alone and I'm glad that you found us on here. Take care, I hope that you will find relief very soon. - Laura
deleted_user
This disease is horrible! I feel like it has taken over my life. I am more depressed than I have been in a very long time. Just know like the girls said you are not alone honey. We all need to be there for each other and keep our spirits high. We are so much more than this disease. We are women with family and careers and a love for life. Don't feel bad about calling your Dr. If it's not working, it's not working for you. They can put you back on a pill form of pain meds. Good luck and keep us posted on how you are doing. Hugs!
RascalFlattsFan
thanks you guys! You're the only ones who understand this God awful disease. All the best wishes and prayers right back at you all....hugs!!
deleted_user
I was in the same boat as you with the pain patches...Please research interstim therapy. It's a device that is implanted into your buttock and a wire that leads down to your bladder nerve and somehow it reroutes the pain and not to your brain and takes it away. I found an OB that specializes in it for IC and for incontinence. Works for both. I'm still working out the kinks but I went from peeing every 10 min to try and relieve intense bladder pain to 5 times a day like normal! Hope you feel better sweetie. Sandy
deleted_user
Sandy, did you experience any problems with your back after the Interstim device was implanted? I may give this a try in the future because I'm having very severe pain lately even with the painkillers. Rascal, I hope that you can find something to help you with the pain. I am so sorry that you are struggling. I'm so glad that we have this support group because we understand how horrible this disease really is. Lots of hugs.. keep us posted.
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