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 been having bladder problems since 7th grade. I am a junior in college now. I would get UTIs like 2X or more a month and it sucks! They gave me every test possible, like diabetes, etc and nothing! It was like UTI, antibiotics, then yeast infection due to the meds. IT SUCKS!
Also whenever my bladder feels like it because i feel like my bladder has a "mind of its own" will start hurting. When it does I have pain in the lower area, burning (I dont know if its inside or out) and I can not pee! I will just dribble some and then pain shoots up and I just cry. Does anyone have this? How do you deal with it?
I am tired of revolving my life around my bladder! At first they thought it would flare up when I was stressed, etc and spasm. But recently I have been diagnosted with IC. I need support and help! It seems to get worse. It sucks....I just either drink a whole bunch of water until its tolerable or cry and wait it out! IT SUCKS!!! Today I woke up in pain, and I set in the bathe with HOT water all day long...not lieing from 12-4 and now I am just dealing with the pain. It is terrible...
What are some of the symptoms do you all have? Do you all go through this? what are some of your symptoms? any tips?
I have just been put on meds (on my profile go look!!!) and tell me if anyone is on those and tell me if it worked or if you havent heard of them...what are you on!?
I know alot of questons....sorry! But I would appreciate some advice and support..Thanks guys!
Also whenever my bladder feels like it because i feel like my bladder has a "mind of its own" will start hurting. When it does I have pain in the lower area, burning (I dont know if its inside or out) and I can not pee! I will just dribble some and then pain shoots up and I just cry. Does anyone have this? How do you deal with it?
I am tired of revolving my life around my bladder! At first they thought it would flare up when I was stressed, etc and spasm. But recently I have been diagnosted with IC. I need support and help! It seems to get worse. It sucks....I just either drink a whole bunch of water until its tolerable or cry and wait it out! IT SUCKS!!! Today I woke up in pain, and I set in the bathe with HOT water all day long...not lieing from 12-4 and now I am just dealing with the pain. It is terrible...
What are some of the symptoms do you all have? Do you all go through this? what are some of your symptoms? any tips?
I have just been put on meds (on my profile go look!!!) and tell me if anyone is on those and tell me if it worked or if you havent heard of them...what are you on!?
I know alot of questons....sorry! But I would appreciate some advice and support..Thanks guys!
deleted_user
wow; well you have probably had it a long time and it has not been treated properly, so that is one of the reasons you are having so much trouble. Have they mentioned rescue instillations? by the way, try to find a UROGYNECOLOGIST....it will make all the difference. I am a nurse, and I have IC and was diagnosed six mos. ago. They should have given you a suggested diet, but that is trial and error at first. The worst for me is caffiene and anything with nitrates or nitrites in it. When I first had it, I used to drink some water with a couple of teaspoons of baking soda in it, and that would give me some relief, as would Pyridium and also Lidocaine ointment to put around the vaginal area. it really helps. I had weekly bladder instillations for nine weeks and it helped a lot although it did relapse some but it has never gone back to as bad as it first was. The reason you pee in little amounts sometimes is because the lining of your bladder is raw and it wants the urine OUT. Also, there are times when you could have an infection, but not always. For the instillations, they put a tiny catheter in where you pee from and put medication in your bladder. It helped me a lot. I hope this helps; you can add me as a friend and ask me any questions. I sympathize completely. Best to you. don't give up.
deleted_user
I put a long post the other day on the discussions "this pain is unbearable". You should read it. I tried to give as much information as possible. A few months ago when I joined this site, I was desperate for info. and advice. I hope it helps!
deleted_user
When I was in third grade I had bladder/ kidney problems they never figured it out... Or what was wrong with me... And now I am 24. At age 21 I had about 5 yeast infections-Uti in a row. One medication was causing the other. I was miserable. Then I was referred to my uro... And anyway to answer your question I do have the same symptoms... I go to the restroom alot... Have all my life. And when I am irritated or have a flare up, I have to help push. So it is awful and goodluck with it.
deleted_user
I don't have a pain problem. But Iam so consumed with the pressure of needing to pee every minute of every day. Iam not even sure if I have IC. 2 months ago this all started with a bladder infection. I went to the Dr and started taking antibiotic....it went away. There wasn't pain and no cutting off of the stream of pee...just the urgency to pee. I statred to have a priod right after..hadn't had a period in almost a year. 2 weeks after this first flare up and period...I got another infection, same thing all over again...this has been going on for 2 months. I went to a Uro. and had a cysto just yesterday. When I woke up Uro. told me I had a bladder which was half the size it was suppose to be and a low grade infection. He put me on another antibiotic for the next 4 months, and to see him in six weeks. Uro. wasn't very good with bed side manner, I was so concerned with having the constent pressure and needing to pee every minute that I just asked if I was still going to have the pressure. "You sure are, until we figure out what you can eat..he also gave me a list of DO NOT EAT Foods. Night time the presure is wose and in the morning. ASll Iam doing is crying..I don't know if I have IC and have never heard of any one wanting to pee as MUCH as myself. I've joined this board and don't know if Iam doing this right. I keep writing every where......If some one out ther has this same problem please help .... mumstang
deleted_user
I'm just the opposite of most people. I have pain with no urgencies to pee. I get nauseated every night around the same time. Pressure pain in my pelvic area, swelling in my colon area, burning around my belly button, my stomache scars burn, Horrible Migrains, mood swings. It's tough. The key is to find the right doctor and get an official diagnosis. It's a hit and miss game from there to see what works and what doesn't... if you find something that doesn't work for you, mark it off your list and keep going.
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