Dr Frustration!!!!

[STACYO]

I am so frustrated!!! My uro. referred me to a pain dr, as the uro office won't treat the pain. (He wants to try clorpactin, as the DMSO/heparin instillations didn't work). I DO NOT want to try anything that drastic, until I give Elmiron a chance to work. Besides, it appears chlorpactin is quite controversial. I am newly diagnosed (Jan 04). However, the pain has been tremendously worse since they did the csyto/hyrdo on Jan 7. I have already decided to get a second opinion with Dr Kolbeck in Neenah.
Anway, I can barely function cuz of the pain. Missed 1 1/2 days or work last week. Uro office won't treat the pain--they referred me to the pain dr. Pain dr said he can't treat me, doesn't know anything about this disease, and said a uro. should be treating me. It was horrible and frustrating!!! NO ONE WILL HELP ME WITH THE PAIN!!!!! I got quite upset, and told him I WANT SOMEONE TO HELP ME WITH THIS PAIN!!!! he went on and on and on about the dangers of narcotics (I had not asked for anything specifically--jsut had alist of all the things I have tried, including all the non-medicinal things--bathes, heating pads, relaxation technique, etc). I then asked him about the list of meds I brought with me, that I read others have tried. he wou,ldn't prescribe Elavil, as it can cause weight gain, doesn't know about antiinflammatories or muscle relaxers as he doesn's know about this disease, won't prescribe narcotics, cuz he says the uro has to, and then agreed maybe I could give Neorontin a try (he prescribed 2 weeks worth). I am so totally frustrated.
I called Kolbeck's office to get on teh cancellation list to see if I can get in sooner than 4/21. I absolutely don't know what else to do. I feel I am getting terrible medical care. they overstretched my bladder during the hydro and its been terrible since. MY hubby wants me to see my family dr for pain control until I see the new uro on 4/21, but not sure she will help either. I am truly at my wits end. Why on earth would the uro refer me to a pain dr that has never heard of IC and can't help me??????????????

[dyno]

It is worth a try to see if your family Dr. can help. If she is not familiar with IC you could print off stuff from the website and take with you. I took the IC Survivial Guide, that you can get from this website with me to my first uro appt. Sending hugs your way and I hope you can find someone to help. If all else fails and you can't handle the pain, try an ER.:grouphug:

[Katrina]

I see Dr Degroot
H900 South Webster Avenue
Green Bay, WI 54301
P.O., Box 19070
(920) 436-1359
he prescribes pain meds for IC. I do think you need to be agressive with him to get the best treatment possible.......but I have hope it is possilbe...which is better than some.

My family doctor does give me pain meds for my IC as well....contact me if you want info on him.


Let me know if there is anything more I do for you. I hope this helps. I do think asking your family doctor is worth a try....Good luck.

PS. I am very interested in what doctor I shouldn't see.....if you can't share your doctor's name here will you email it to me please....thanks.

[Julie Smith]

Sounds like you're uro is a real jerk. My hear just goes out to you. When that happenned to me, I lucked out in that I have a great relationship with my family dr. If I were you, I'd make sure pain dr. is familiar with ic and treats many ic patients.

Before seeing pain dr. I was on 4 mg. valium 3x day and maxidone as needed for pain-up to 3.

Good luck, please keep us posted,
Julie:angel:

[DanaW]

Hi Stacy,
I have been getting treatment from my Uro. (pain meds, etc...) but, because my pain has increased and stayed steady he went ahead and referred me to the pain clinic. They turned me away too! I was extremely disappointed because I thought they were the EXPERTS at pain meds....etc.....so, I just went back to my Uro. and he still wants me to find a Pain Clinic. I do know that the one in the Minocqua area treats IC. I am in the process of contacting Jess who lives in that area. But, it is a 2.5 hour drive from me. Not looking forward to that. It must be terrible for you to not even have someone who will treat your pain! Hopefully Katrina's Uro. can help you. I also, by the way, have had increased pain since my Hydro last Sept. I do also know that my bladder tore during the procedure. That probably didn't help matters. I hope you get help and I hope you feel better soon!

[STACYO]

Thank you very much for your replies. Don't know what I would do without all of you! I did see my family dr (Dr Mary Sauvey) yesterday at 2 pm, and she was wonderful and supportive. I said I am not looking to feel good, I just want to be functional,
and she said functional is not good enough she wants me to feel good! She said it may be some time before we find exactly what will treat the pain, but we will find it. She started me on Tofremal (not sure this is spelled right) a anti-dep. used also for pain control and sleeplessness. Also started me a low dose (2.5 mg) of valuim for mucsle (bladder) spasms. Unforrunately, I had a horrible night last night, the Tofremal made my heart race and chest burn, and Iw as up every 15 min gonig to the bathroom. I did not fall asleep at all (but prior to last night my uro had me taking 5 mg of Ambien, which I discontiued due to the new pain meds). Anyway, called the dr and tonight I will try 1/2 dose of Tofremal and 5 mg of valium to sleep. Also have been taking pryridium. Don't know what is causing the major increase in frequency andurgency--it has not been this bad since the cysto/hyrdo. I do feel much more encouraged with getting help from my family dr and then the new uro in Neenah (Dr Kolbeck, I have an apt on 4/21). I will also check on Dr Degroot and see if he is in my insurance network. $$ is becoming less of a concern the more miserable I get (meaning that if I need out of network care, so be it). Anyone have any rapid heart beat problems with Valium or Tofremal (I am not sure if I am spelling that right).

Thank you again for all your care and support.

[DanaW]

Hi Stacy,
I am not familiar with your new med. I am sure someone here is though. I am glad that you are being treated right by your Dr. That is soooo important. You may be having a reaction to the new med. toframil ? If it continues you may want to call your Dr. Take Care, Dana

[Dixiefireball]

thank goodness your family doctor is helping you my heart really goes out to you.
Yesterday i got a call from a rn from the hosp wanting to know how was my visit to the er (they always call to make sure you are getting the best of care) and she called at the wrong time boy did she i let her have it.
I told her how i felt I Said its not right for those doctor in the er to look at all icer's and not help them because they dont know what is wrong with them because they havent learned about ic i said just because you can't see ic or have a uti doesnt mean your not in pain IC is classifly as painful as some cancers and they need to take the time to learn about it.
I also told her i was not there looking for pain meds i don't take pain meds unless they come from my doctor but I would had taking a pain shot i was in alot of pain that last visit and I Did have a uti. this doctor gave me a muscle relaxer that i tore up in threw in the trash in front of the rn when she went to check me out.
the rn that called me yesterday after i talked to her about ten mins explaining ic to her and how painful it can be to pat. said that this would be reported to the manger of the hosp and they would call me and make a report of this and something would be done there is no reason for a pat to be treated this way.
so now i'm waiting on hearing from the manger from the hosp. I Want the hosp er doctor to understand ic because there is alot of times we are in so much pain we have to trun to them for help and what is the use to go to the er if they are going to look at you as just wanting drugs just because they can't see your pain.
:mad:
there is no reason for them to act such a way. I know i'm only a voice to them but i want my voice to be heard and taken serious not just for me but for all icer's who are fighting this battle in hopes to get better.

[franya]

I hear you about the Dr.s being ignorant about IC they look at you as if you just came in to wait around just to get high sadly enuf junkies do that all the time so they are always skeptical. I always call my PCP (family doc) before I go tho the ER and she calls in to explain my disease and let them know what to do. You should try that the next time HOPE YOU DON"T HAVE A NEXT TIME!!!!!) but just in case. I think after the pain the hardest thing about this disease is we always have to explain and prove ourselves to actually be treated with respect. Hopefully if we can make enuf noise our future ICers will not have to endure such treatment. God bless and good luck

[YankeeCandle224]

You are now officially in the club of people that have dealt with pain doctors that have absolutely no clue about our illness, much less others that cause chronic pain. I went to many, about 50 doctors, before I found the combination of doctors that I have now.

I have a good GP who manages my hypothyroidism, bp, and general health. He used to be the one who rx'd my pain meds, but after a referral to an orthopedist about my degenerative disc disease, the ortho referred me to this pain doctor.

I hit the jackpot because this man is great to me, looks me in the eye and treats me with respect that we ALL deserve.

I have said this before, in the MD's oath that they take it says "FIRST DO NO HARM", and leaving crhonic pain of any type untreated is doing harm. You might want to quote that the next time someone downplays your pain and refuses to treat you. You have rights as a patient to be taken care of in a respectful, caring, SAFE environment, to the doctor's best ability, and if you're not getting that care then you can complain to the state medical board.

I did that very thing when I had a so called pain mgmt doc tell me that he would never rx me pain meds and I should go buy a bullet and bite on it. He treated a lot of people here in Charlotte the way he treated me and I believe he is now in deep doo doo with the state board.

Good luck sweetie and know that you're not alone here.

Sandy

[Mimi-in-Chicagoland]

Recently I had to go through 3 years of my medical records to pull out some reports I need to take to a specialist. My new PCP has all my records from Michigan. It astounds me how doctors, SOME nurses, etc. DON'T listen. I had an ovarian cyst burst last Sept. I felt it burst. I was in extreme pain. I went to the ER, got a shot, was checked out for kidney stones (just in case), and was given a script for vicodin. (I don't keep pain pills around because my IC isn't that bad with the interstim.) Usually my cysts are absorbed in 3 or 4 days. This time that didn't happen. I called my PCP and wanted an ultrasound. They tried to give me toporol--which I didn't want--I already had vicodin. (toporol is awful on your kidneys and liver--especially if you're going to use it for more than 2 or 3 days) The phone report about my telephone call is completely wrong. It took another week to get in to see my GYN. He thought it was muscle pain. SIGH. He couldn't feel anything. (you think?? It already burst!) The report said...she felt fine 3 weeks before during her yearly check up...first clue it was a cyst. I am so glad to be away from those awful doctors. My PCP was the only one that was decent...well, the uro was good, too.

[MELISSA2]

I KNOW SOME OF WHAT YOU ARE GOING THROUGH. I HAVE HAD DMSO DIDN'T WORK CHLORAPACTIN DIDN'T WORK 4 SURGERY'S TO STRECTCH MY BLADDER LAST ONE DIDN'T WORK MOST OF THEM DIDN'T WORK IT IS FRUSTRATING WHEN THERE IS NOTHING ELSE THAT THEY CAN DO FOR YOU EXCEPT TRY NEW MEDS. MY DR SAID IT IS TOO SOON TO DO BLADDER REMOVAL AND MY AGE HAS A FACTOR TOO A MOTHER OF THREE AND 32 YEARS. HE DOESN'T WANT TO TRY TENS OR INTERSTEM SO I HAVE TO ACCEPT THAT TAKING MY MEDS AND TRY TO FIND SELF HELP TREATMENTS TO HELP MYSELF. IT IS FRUSTRATING TO HEAR THINGS THAT YOU DO NOT WANT TO HEAR!!!! AND WHEN YOU TRY TO GET HELP LIKE SSI AND GET TURNED DOWN THAT SUCKS!!! THEY KEEP WANTING MORE INFO WHAT IS AN IC PATIENT TO DO? I WILL KEEP YOU IN MY PRAYERS! GOOD LUCK! AND TRY NOT TOO GET TOO DISCOURAGED I KNOW THAT IT IS EXTREMLY HARD NOT TOO JUST :pray: