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 have pain a lot with my IC. It will come just anytime and totally unexpected but it's not so bad that I can't stand it. It is the pain that is low in the abdomin and it hurts so bad in my vaginal.
What i want to talk about though is what has happened this week. I was so very excited because my best friends were giving me a lunch on a saturday after my birthday. The night before the IC pain started and it was horrible. I soaked in very hot water, sipped water with baking soda, the pill to turn the urine orange and even a pain pill. After laying with a heating pad and done all of the above it eased off. By the way I just layed very still. The next morning was the lunch and I was in pain but determined to go. My friend treated me to a pedicure and then off to the lunch. I started hurting so bad that I was frantic!! I seriously didn't know what to do at my friend's house. I eventually started crying the pain had gotten to be so bad I was at my wits end. I was embarressed and depressed about the whole thing.
Does anyone else out there get such pain that they feel at a loss as to what to do? I just would feel better if I know that it's not just me.
I also have Addison's Disease so it all works together against me. Sorry but I had to vent and I hate to talk to my friends and family about all of this. Forgive me for rambling.
What i want to talk about though is what has happened this week. I was so very excited because my best friends were giving me a lunch on a saturday after my birthday. The night before the IC pain started and it was horrible. I soaked in very hot water, sipped water with baking soda, the pill to turn the urine orange and even a pain pill. After laying with a heating pad and done all of the above it eased off. By the way I just layed very still. The next morning was the lunch and I was in pain but determined to go. My friend treated me to a pedicure and then off to the lunch. I started hurting so bad that I was frantic!! I seriously didn't know what to do at my friend's house. I eventually started crying the pain had gotten to be so bad I was at my wits end. I was embarressed and depressed about the whole thing.
Does anyone else out there get such pain that they feel at a loss as to what to do? I just would feel better if I know that it's not just me.
I also have Addison's Disease so it all works together against me. Sorry but I had to vent and I hate to talk to my friends and family about all of this. Forgive me for rambling.
so I hope u feel better soon!!! (btw what is Addison's disease)
aloha
Addison's Disease is another rare disease....my adrenal glands do not work at all. I have primary addison's. It is an autoimmune disease just like IC. It also means that any stress to me physical or emotional causes me to get sick and really tired. I have was diagnosed 9 years ago and the treatment is daily steroids.
I did go in for an instillation last week and am scheduled for another one this week. It has been a long and painful week. It is so good to be able to talk to people that can understand what it is like.
It does hurt when we urinate and have the low abdominal pain so bad during flare up....but do you have REALLY SHARP PAIN in you vagina also?
Again thank you for listening to me whine....and even better you responded.
about the pain meds. my doctor did give me lortab 7.5 and it does help. by the way i had to sign so many forms it was nuts.