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.
Ok, I am venting and honestly feel like I am going to loose my mind....., This nonstop pain and pressure is weighing heavy on me, the weather here has been either rain or hot and humid (so much for lovely spring weather) anyways the pain on top of everything else is just too much. I am refusing to go back to the doctor right now since he said there is nothing else they can do except what they are doing and another surgery plus all the costs, I have had 4 surgeries for this damn IC and three were just last year alone. The last one was right before Christmas and it was so very hard on me. Now I am fighting the pain and I feel alone, like I said I am avoiding the doctor due to what was said and then with the costs, I am tired of spending hundreds and hundred of dollars at the doctor and on medicine that doesn't do squat to help me. I am sitting here at work and could scream the pain and pressure is so bad plus I woke up covered in hives, I get the under the skin ones so nothing helps no matter how much I scratch it does nothing. I am miserable and I just don't know what to do anymore I feel lost, like it doesn't matter what direction I go it isn't the right one. My best friend asked me what I was going to do about it not that long ago and I started crying and said I had no clue. I am starting therapy Monday need to talk to someone, and I am just really down right now and am hoping this will help even if just a little.....Sorry for whining but like I said I needed to vent............
Glad your going into therapy, that will help you a lot. I just started therapy last week and I have a little bit of hope. I'm also going in next week to get the inter-stim. the implant they put in your back for frequent urination and pain/nerve. I'm praying that this will help.
Does your job offer any kind of flex spending? Where they can take money out to pay for your hospital/clinic, medication costs? I'm sorry your having problems with medical bills. We actually had to file bankruptcy, because our bills were out of control. My husband just lost his job, so I'm the only one working, at least I was the one carrying the insurance. My Urologist basically told me he could not do anything more for me either, so he sent me to
a pain specialist to take care of my pain. It's sounds like your pain is not under control. I sure you get some relief really quick.
I could not believe how much pain I was in until I saw the pain specialist, he prescribed Fentanyl patch and muscle relaxer.
I feel your pain and know how sick of dealing with this crap. No one understands this awful pain.
Huge hugs, Dee
Have you tried the IC diet? When I was first diagnosed, my ex-doc gave me some flimsy paper that only made me sad. By God's grace, I discovered the ic-network. Perhaps this could be a great place to start.
http://ic-diet.com/IC%20Diet%20and%20Food%
20List.html
Also, I had to consult with a therapist. One of the best decisions ever made. I need a person to talk things over with and who will provide constructive feedback.
Once again, I am so sorry you are in pain. Pray that you feel better.