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.
RANT:
I am not having a good experience with doctors so far. Unfortunately I seem to have multi sensitivities to medications. I tried Oxybutynin, couldn't pee. I tried Tagament, made me nauseous. They wanted to throw antibiotics at it, even though I had no outward signs of infection. Instead of putting their heads together with their other doctors, they simply invalidated me, and said they didn't know what to do with me. I have been pushed aside, it's been said that I need psychiatric counseling, all without the proper tests. I finally spoke to a reasonable doctor who wants to do a CT and x rays to see what's going on with both bladder and kidney, and then scope the bladder. This should have been done two months ago. It is simply wrong to invalidate patients based on medicine reactions and sensitivity. I will be heading to an Infectious Disease practice. They deal with this on a consistent basis and should be able to direct my care, and what meds are acceptable. If they don't know they can call that practice. The fact remains that women are invalidated more often than men. Put that together with a person like me who seems sensitive to medications, and it's a recipe for being left untreated, or assumptions the person is a nut job. I completely resent this. I am not insane. I have studied and advocated medically for myself on many occasions. Not to toot my own horn but I'm bright, and well informed...I've had to be. So far Allegra and Prelief are helping a bit, and that again was advocating on my own, looking through tons of literature, groups, information, and finding something that works. I should not HAVE to be on my own in this. Doctors are not Gods, and if they do not have answers, talk with other Doctors, Specialists, make inquiries! Instead their over inflated egos decide they can't be wrong, so it has to be the patient who just happens to be a woman. AND if you think women doctors are any better NO they aren't, same freaking God complex.
I am not having a good experience with doctors so far. Unfortunately I seem to have multi sensitivities to medications. I tried Oxybutynin, couldn't pee. I tried Tagament, made me nauseous. They wanted to throw antibiotics at it, even though I had no outward signs of infection. Instead of putting their heads together with their other doctors, they simply invalidated me, and said they didn't know what to do with me. I have been pushed aside, it's been said that I need psychiatric counseling, all without the proper tests. I finally spoke to a reasonable doctor who wants to do a CT and x rays to see what's going on with both bladder and kidney, and then scope the bladder. This should have been done two months ago. It is simply wrong to invalidate patients based on medicine reactions and sensitivity. I will be heading to an Infectious Disease practice. They deal with this on a consistent basis and should be able to direct my care, and what meds are acceptable. If they don't know they can call that practice. The fact remains that women are invalidated more often than men. Put that together with a person like me who seems sensitive to medications, and it's a recipe for being left untreated, or assumptions the person is a nut job. I completely resent this. I am not insane. I have studied and advocated medically for myself on many occasions. Not to toot my own horn but I'm bright, and well informed...I've had to be. So far Allegra and Prelief are helping a bit, and that again was advocating on my own, looking through tons of literature, groups, information, and finding something that works. I should not HAVE to be on my own in this. Doctors are not Gods, and if they do not have answers, talk with other Doctors, Specialists, make inquiries! Instead their over inflated egos decide they can't be wrong, so it has to be the patient who just happens to be a woman. AND if you think women doctors are any better NO they aren't, same freaking God complex.
I just joined this group. I get it about the "foundering." Feel like I'm floundering, too.
Been doing some research and from what I can see, and I stand to be corrected, this has to do with MCP-1 in the bladder, which might respond to antihistamines such as Rx Hydroxyzine. CCR2 is involved in the process of mast cell degranulation in bladder tissues. These changes may contribute to the development of symptoms of IC/BPS.
This is very new to me. I don't actually have a diagnosis yet, but all signs point towards it.