OK-- My Uro is dumb--- what do I do?

[evy]

When I saw my uro, he said IC was a diagnosis of exclusion.......... but he put me on Elmiron and was going to DMSO instills........ w/o going on any test results.......... no scoping, no potassium tests.......... nothing............ no biopsies........... I do not want hydrodistention b/c I had a vaginal hysterectomy a year ago......... and have had several surgeries and do not do well under anethesia.

I am supposed to see him again soon.......... but question this.........

I wonder why he didn't scope me or give me that potassium test.........?

sigh.

Our county is so small and has such stupid doctors!:cussing:


evy
:cat::cat::cat:

[systitis]

You already know the answer: get a new uro ASAP!!!!!

[lisabar36]

I would discuss that with your Uro, say to him that you don't feel comfortable doing treatment with no tests. If he doesn't listen, maybe its time to get another opinion. Find a Uro more knowledgeable about IC may be the perfect choice. :)

[Claredale]

I agree with the other postings, please find another doctor for a 2nd opinion. There are doctors out there that can give you better answers than what you are getting. I have dealth with IC for 20 years now and I have been fortunate enough to have doctors that listened to me shortly after my diagnosis. My first doctor was a uro and he tried, but with the limited knowledge, he started me on the basics of treating me which at least were getting a diagnosis before he proceeded. Are you going to a reg uro, a pelvic pain specialist, a uro/gyno? Most regular urologists don't have enough info regarding IC except for the basics. I was lucky enough to have one that knew some info, but he still put me through the DMSO treatments which were horrible in my case. Once that horrible type treatment didn't work and he did another hydro...first one I had prior to any treatment showed I had moderate IC...the 2nd a few years later after my DMSO treatments showed that I had progressed to severe he knew to refer me to a pelvic pain specialist. I have not heard of very many doctors that specialize in IC to even use DMSO treatments anymore. I realize that they do work on some people, but the do take several treatments to see the benefit. I went through 3 sets for 6 weeks each and I was more miserable the longer the treatment went on. I am not saying that DMSO made my IC worse, becuase I was already in severe pain before my 2nd and 3rd sessions of treatment, but I don't feel that DMSO is the treatment especially for patients with severe IC. My last 2 doctors feel the same way as well. They call it "old school" remedy.

[evy]

i just have extreme bladder pain......... when this first started, i peed about 3 times a day and it would be like orange color......... and there would only be a little bit........

then i saw the urologist................. and he put me on elmiron---------- but i cannot take this b/c of my liver problems..........

so, i started the diet and only drink water............... once in a blue moon I drink a little bit of root beer.......... but that's it.......... just water------- and i don't eat any tomato stuff.......... no chocolate......... nothing acidic.........

I MISS MY DIET MTN. DEWS!!!!!!!!!!!!!!!!!!!!!!!! I LOVE THEM!!!!!!!!!!!!!

I take ultram for liver pain.................. and it helps the bladder issues........ and my psychiatrist gave me atarax to help me sleep-------- so, i already had it here........... and that is what i am doing.

i am SOOOOOOOOOOOOOOOOOOOOOO tired of doctors i could scream. I feel like i am having to diagnose myself............ they want to do all kinds of tests.......... for different problems i am having.............. (like--- a liver biopsy)............. nope.......... i am not doing that.......... this mess has been going on for ten years........... different issues...............

and maybe this isn't quite the way i should handle it........... but i am just turning it over to God............:angel:

i am tired of being put down......... and told that what i really need to do is talk to my psychiatrist.............. so he ends up hearing about all my physical issues............ cos none of the others will listen. i mean REALLY listen.

sigh.

sorry............. i am ranting. :smile tee

:bonk::bonk::bonk:


us bipolar people tend to do that--------- I KNOW!!! maybe I should call my psychiatrist!!!! :evilsmile

**hugs**

evy

[Want2BPainFree]

I actually think your uro may be trying to spare you further bladder pain. Hydro/Cystoscopy is painful, the potassium test is excruciating from my personal experience. I do think IC can be diagnosed by exclusion. However, if you are not satisfied with that, you should tell the doctor. If he will not perform the diagnostics you desire, then consult another physician.

[ICNDonna]

Some uro's will make a diagnosis based on symptoms alone. If you're not comfortable with that, by all means tell your doctor.

Donna

[SharonA]

Yes, do talk with your doctor about your concerns. :)

[leelee88]

Have you checked into the possiblity you could have something more going on than IC? Only peeing 3 times a day and only going a small amount sounds more like PFD.. I am NO Dr but just going by what happens to me when my PFD starts flaring. You can google Pelvic Floor Dysfuntion also there are some things on this site that you might find helpful..

I would also check into seeing another Dr. You could check into the ICN Patient Hanbook and there is a list of Drs by state that specialize in IC and Pelvic pain.. Hope things get better for you soon.

[elitynski]

If you are uncomfortable with your Dr's approach or diagnosis, then by all means get a 2nd or a 3rd opinion. However, if you find a Dr. you trust, then by all means stick with that Dr. as they have a lot of tricks up their sleeves and you need to give them time to work with you to see which treatment plan is working the best.

SO if Dr. #1 isn't meeting your needs, then by all means - shop around. YOU are the customer.

[patricia1]

Im just gonna echo here what others have already mentioned. If you are not happy with your current uro you can get a 2nd opinion. Alot of times when trying to get a IC diagnoses it is not uncommon to see several uro's before finding one that actually sits down and listens to you. I went through 5 myself.

Also it is not uncommon for some uros to diagnose IC with symtpoms alone. Although I am not sure I like diagnoses just on symptoms alone it can be done. But there are other problems out there that need addressing someone earlier mention PFD because of the extreme pain and only going 3 x. I would consider this a possibity. But sometimes IC and PFD are what is called sister disease as if you have one usually you have the other to.

Best of luck to you and I hope you find some relief soon