Help - I'm Frustrated!!!

[suzziy]

About 20 years ago, I had similar symptoms of IC and had a complete hysterectomy and have been relatively sypmtom/pain free up until about a year ago when I came down with a very bad bladder infection. For the past 14 or 15 months the symptoms have never gone away. I have real bad days, bad days, and ok days. Once in awhile I'll have a good day. I have urgency (comes and go, but I am able to hold it for the most part), pelvic pain, pelvic pressure, rectal pressure at times, weak stream at times, normal stream at times, and lots of loss of sleep; vaginal burning at times. I basically feel like I have a bladder infection most of the time, but when I tell the urologist they want me to pinpoint where the pain is coming from, which I try to explain to them its not in one area.

I am working with my primary (he's been helpful in listening and trying to find me some help). My gyn did a laparoscopy to remove adhesions (not too helpful).

I have now seen three urologists. (Not yet diagnosed, because I am reluctant to go through the painful bladder distention). First doctor told me that I might have cancer without doing any tests and had me scared to death. I switched urologists and he treated me for OAB with Enablex which made it worse; reported to him that it made symptoms worse and he upped the dosage making pain extremely bad; took myself off Enablex and switched doctors.

I just came from seeing my third urologist who scoffed at me using Prelief and trying to adhere to an IC diet. He told me that it didn't take a genius to figure out that food can irritate the bladder and prescribed yet another prescription for OAB called Sanctura which I haven't taken yet as the package specifically states do not use if you have a weakened bladder stream (which I do at times) and constipation (which I am seeing a Gastro due to Diverticulosis).

I've been pretty much treating myself with just the IC diet and Prelief which has improved symptoms but I am still hurting most days. The urologists in the two groups available around here don't seem to care and seemed annoyed that I think my symptoms mirror those of IC. I even asked my current urologist if I don't have IC, then what could I possibly have then? He responded painful bladder syndrome. Isn't that basically the same darn thing? I've had x-rays, CT scans, MRI of the bladder. He told me he would prescribe Elmiron, but it has proven not be that successful and I already have major hair loss, so I haven't seen that as an option.

I'm frightened that this disease is progressive; I hurt enough now! I'm frustrated because I can't find a urologist who has a shred of compassion -- but I refuse to give up.

Help anyone?

[ICNDonna]

Sometimes it takes trying several things before we can improve. You might want to stick with one doctor for a specific amount of time --- so you can try some different options. My IC was diagnosed by hydrodistention and I was pleased to discover that I'm one who is helped substantially by the procedure and it's been a major treatment for me for my 33+ years with IC.

And only a tiny percentage of people experience hair loss with elmiron; the good thing is that if there is any hair loss, stopping the medication in almost all instances will stop the loss and the hair will fill in. I suggest to anyone starting on elmiron that they take a clean hairbrush and brush their hair thoroughly --- then comb the hair out of the brush and store it in a clear sandwich bag --- then if they feel they are losing hair, do another clean brush test. That way there's less likelihood of seeing normal hair loss as a problem.

Some doctors refer to IC as painful bladder syndrome.

Sending warm healing thoughts,
Donna

[Mothergoose]

I know it is a frustrating process, but the hydro is not nessarily painful, ask the Dr. to put you out for the procedure, then a Dr. will actually see what is going on in the bladder and my then know how to treat you.

There are some natural product some people are useing maybe someone will tell you what they are. But I would look for a diagnoses before doing to much home treatment. You just never know what be causing your symptoms.

Although I feel it can't hurt to follow the diet, it helps lots.

Good lucky Mothergoose