need opinions????

[3girls]

hello,
i have been dx with ic and pvd since jan.28, 2009. my therapy at the present has been 2times a week with Elmiron bladder instills and some pt (very little) The NP has been working with me and is having me do Kegals for Pfd, but i have read this is NOT good for PFD?
Anyway, i decided to see another dr. and i had appt. with a Urogyno last monday. He has referred me to a pt that deals with these issues. I guess my questions are I wonder if the bladder instills were working? I have been flaring for the last 2 weeks and don't know why?
Should i keep going to the urologist and the urogyno and i know i need the PT
I am so lost. i don't want to keep driving twice a week if the nurse practitioner is using me as her "study"
i feel like i know more than she does and is not offereing anything new:confused::confused::confused:

[SharonA]

I honestly don't know if the instills are working for you, but I think it would be good to have your urine checked for infection, especially since you have seen an increase in your symptoms with the flare. A UTI is always a possibility when cathed.

As far as if you should continue with the instills, that really is up to you. If you feel that they are not helping, then maybe you should speak with the NP about that.

If you want to have PT and the NP is not doing that, then maybe you should look into the PT that the urogyn suggested.

Really...The best way to decide what you should do is talk it out with the uro and see where he/she is going with your treatment. If you are not satisfied with what you learn, then think about changing doctors.

[BrandiWine]

Ok so ill start by saying.. WITH this disease i am finding we will go through a lot of dr.s. i still have not gotten it right but ONE thing i do have is a wonderfull PT. She is helping a great deal i have been seeing her for almost a year now.

Dr.s i think are like trial and error. and the way i look at it they r getting RICH off me cause im a return patient so if im not getting proper care from them ill find someone who will and chances are and give them my money if u feel ur not being treated properly or being given enough information u probably are not.

I will tell u for me PT has helped and keagals may b a little advanced for u just starting out exspecially if ur in a bad flare (im not a professional here just tell u what i was told and went through) my pFD was so bad when i first started because for over a year no one new what was wrong or y the pain ,, long story.. we started very slow with simple things as stretches. she gave me at home stretches to do LIGHT ONES one at first then after a few months more ect,, i have about 8 good at home stretches with some keagals in with it. When i first started Pt she simply started with the rolling of this skin on my stomach and lower back inner thighs ect.. i would miss a month see how i did on my own then return for more treatment for a few weeks ect. we did very minimal inside treatment because she was trying to losen the muscles around the bladder. (again things vary for every patient)

Now i use dialotors (well one inparticualr and its a cheap dildo cause the actual dialotors are 50 bucks and im cheep i spent 8 dollars on my imposter :) )
it works just the same and my pt said it was fine.. i do easy light stretches every night b4 bed and ill place the dialotor in me for about 20-30 minutes every night while watching a show b4 i fall asleep i find that after i take it out and lay down for sleep everything down there is relaxed and calmed (this is what works for me again different strocks for different folks).

as far as the instills depending on the dr and the patient, from what i have been told each dr can use a different ( cocktail ) instil mix . some drs use one thing other drs us another i know the one i had i smelled like garlic for 3 days and so did my urin i even belched garlic,, but it helped take away the burning.. They dr said in some patients (again im assuming the severity of it) can take more then 1 instill to feel a difference and in some patients it doesnt help but make worse.

i hope this helped answer some of ur questions. if u want to know any additianl info feel free to message me ill try to help if i can gl :angel:

[targirl81]

Greetings!:hi: I am so sorry that you are a member of this club.....but welcome! I was diagnosed in 1998 and kind of floundered along until I went into the moher of all flares in the summer of 2005. I was sent to PT which was the worst possible thing I could have done since I was already in a flare. Nothing was helping. After two ER visits, a hydro and multiple visits to my urologist, I took matters into my own hands and did extensive research. I found this website and this marvelous message board. I got the name of my present urologist from this board and he has been an absolute angel:angel:. His name is Dr. Robert Evans and he practices in the Greensboro, NC area. It's a little bit of a drive for me.....but I would gladly drive much, much further to see him. I know that different things work for different people but I will tell you what has helped me. I am on a daily low dose muscle relaxant as well as hydroxizine. I have pain meds on hand in case of a flare. The muscle relaxants are vital bacause they keep my bladder from spasms. I cannot stress how important it is to find a doctor that understands IC and that alll patients need to be treated with a regimen that works for that patient. Good luck and feel free to email me if you want more information or just to talk.
My email is: targirl81@aol.com