Living with Interstitial Cystitis

October 2007

• Severe pain everday HELP!! - by Mary - (Tue, Oct 30 2007)
  I was about 12 when i was diagnosed with Ic. I am 19 now and i have pain everyday. I have tried so many things. Physical therapy narcotics, anti-depressants, elmeron, i even have the Interstim implant,but nothing seems to help. [more..]
• Tired of the pain…just take it away. - by Erin - (Sun, Oct 28 2007)
  My family doctor just diagnosed me with IC after ending up in the E.R. in so much pain I couldn’t stand, sit or walk. They gave me a pain shot which made the IC worse…a common problem, a mistake doctors make with IC. I have had pain in my bladder for years…it is worse if I try to drink caffeine (I gave it up 6 years ago because of the intense pain) but most often pain during & after sex; and lots of UTI symptoms but no infections in the testing shown. [more..]
• living in chronic pain please read esp doctors - by Lynn - (Mon, Oct 22 2007)
  i was a strong independent person before i/c [interstitial cystitis]. 6 years ago and many tests on my bladder — some were supposed to be under general anesthesia (i found out later) — after coming out of the office worse then when i came in and many days and nights living in the bathroom in tears, i finally went in to my pcp doctor and said I don’t want to be tested and hurt anymore. she said ok and put me on many meds. it took a long time to get this right and i am still housebound and bed bound (bathroom bound) to this day. after 8 years, my doctor, who i see every month to every three months, moved to walla walla washington, leaving me with the only one doctor in their practice. the first time i saw her she said, you’re on a lot of meds but see ya in three months (i also had shingles and she knew it.) never examined me. 3 months later and she came in to the room with a pain contract, threw it at me said she did not get paid for filling scripts and that every time she had to fill my meds she wasn’t making any money. then said she didn’t get paid to look at charts and that she couldn’t even be in the room with me (i didn’t put myself on this many meds.) i was even sent to a pain specialist who upped my meds and put me on more meds. he is a 45 minute drive from my house and being in a car is very painful for me so my old pcp said she would cont. my care. i was so in disbelief i couldn’t do anything but cry. she told me to wait in chairs. when the nurse came and got me i couldn’t talk or breathe. i thought i was having a heart attack she kept saying she was sorry for the doctor. she got my husband and wheeled me out. i still cannot believe a doctor would do this after i just said hello. 4 days later i get a letter saying they would not care for me and i needed too see a pain doctor. I have an hmo insurance through my husband’s work. i do not drive because of by meds and illness. what happened to compassion? when did people living with debilitating chronic pain and still raise a daughter/be a wife become a criminal? it’s hard enough for my husband not being able to have relations very often because of the incredible pain. I went to a new, family doctor who cut me to one long acting and one short term drug after being on many other drugs that worked 2 out of 7 days for 6 years. it has been 7 days, i have not had withdrawal symtoms [symptoms] but i am back to living with my knees in my chest in tears. i almost went to the er last night (i have only been once in 8 years.) i am not supposed to see my new pcp for a month and i am afraid to tell him how bad i hurt. i don’t want him to dump me, too. i don’t know what to do. i just want to live my life with a few good days. doctors who care seem to not want to treat anyone who needs pain meds or more than 2 of anything. please help if you have any advice. i have i/c and firbro m [fibromyalgia] along with vonwilabrands, a blood disorder that contributes to horrible periods, and Thalassemia minor (a blood disease that makes you anemic.) i feel like a genetic reject and when doctors don’t understand it makes you feel even more hopeless. i hope if your a doctor you will read this and remember i am still a human and treat the conditions, not in this day and age limit pain control for chronic pain patients. [more..]
• newly diagnosed with IC - by Jennifer - (Mon, Oct 22 2007)
  I have been diagnosed with IC as of this past July after feeling like I had a UTI for 3 months. I am currently taking Elmiron and I also take Pamelor- for depression (IC induced). [more..]