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.
so i went to my urologist tuesday and he advised me he was out of ideas on how to help me...he has already sent me to another specialist an hour and a half away, to no avail...he has done 4 hydro-distentions, again, to no avail...i am on prosed ds, elmiron, zantac, hydroxizine, omperazole, and percocet...i have removed caffeine, fruit juices, basically the highly acidic, highly tasty foods including coffee and chocolate...and he doesnt know what else to do...he is sending me to see dr hanno in philadelphia, over 3 hours, each way...at this point i cant have too much hope but he is kinda like a last option...my urologist is a great dr but he is out of options he said...he said dr hanno is the best IC dr on the east coast and that he will prob hook me up with an interstim and botox injections...both of these sound scary! my husband believes hes supportive, he goes to all mt appts and is very sweet, yet sometimes i feel like hes performing an act, like see look how sweet and supportive i am, arent you lucky im so so supportive? it has obviously impacted our physical relationship, which i think he doesnt fully grasp...he wants to do everything and then just no penetration...i dont know about anyone else but priming the pump and then not releasing the pressure isnt what i would call a good time...and he doesnt seem to comprehend that just cause i say i dont want to have sex, doesnt mean he should feel free to grope and fondle and what ever else he feels would be fun...no sex means dont touch me in my book, but apparently hes on a different page...has anyone found a way to broach this subject in a successful way? any and all advice about any of this would be welcomed...tired of feeling lost...
I'm not sure where you live, but I had an amazing dr. when I lived on Long Island. Actually there's a couple of great uros there. Have you ever tried the series of DMSO's or Heparin rescues or Parsons instillations?
I know what you mean about sex, it's really hard and it's basically all about him......i try to please hubby in other ways. I'm sure it's not easy for your husband to watch someone he loves going thru this. Many don't even have the support you have. If pain is your problem, please make sure u do your research on the interstim. I've heard from many IC patients that it helps the frequency/urgency but not the pain. Would hate for you to go thru all that and not get the relief you expect and deserve. I know you posted this over a week ago.....I hope you are feeling better and please know you are not alone. Don't give up, theres hope for IC, I have to believe that.
Take care.
jae
Wish I had some advice. I just joined this support group today..I was just diagnosed with IC and feel lost and confused but I ill definitely keep you in my thoughts and prayers.