I need help for tomorrow.........thanks

[Kirs10]

I have been seen by two Ic specialists for my Ic in the last 7 years the first one told me tht if I refused to do the DMSO instills(because I can't afford them) then I refused their standard of care and there was nohing they could do for me........So I went to the other one in Maine and he saw me once and told me that I needed to have interstim put in and all the pain would go away, so did which of course w all know didn't work. He then told me that he could do a hydrodistension but he didn't think it would work, so he did and it didn't help, so his next suggestion was to send me to a pain specialist, and the pain specialist told me that there was nothing he culd for me and that he suggested that i try the fentanyl patch which i have tried. My IC "Specialist" told me that there was nothing else he could do but refer me to another doctor in Portland that doesn't believe in IC. I am in awe that the "specialist" doesn't know what to do except refer to someone that does even believe in IC
I have been in Pain for so long now that i can't remember my life with out IC pain. I am fortunate enough have a PCP that is very willing to prescribe pain meds for me. I am just wondering if I am doing all that I can do for my IC. I have made an appointment with the IC doc that did the interstim because I am thinking that I need to get this thing out it doesn't help at all.
So I know that I have a case that isn't typical in the sense that ELmiron didn't help me, and there doesn't seem to be much that is helping me. I was just wondering if anyone had any suggestins that I could take with me to my appointment tomorrow.

[ICNDonna]

How long did you take elmiron?

Donna

[Kara29]

Kris,

Have you gotten a 2nd and 3rd opinion? Just because they say they specialize in IC does not always mean that they do. I found that out the hard way. It would save time and money if they really were specialists.

You may have to go outside of your area to find a great Doctor. I have to drive 5 and 1/2 to 6 hours for my specialist in one direction and an hour in another direction. Here's a list of Doctors in your state that may be some you could try:

Disclaimer: This list was created for informational purposes only. It was developed using the names of ICN Professional Subscribers, names of clinicians who have expressed an interest in interstitial cystitis, bladder pain or pelvic pain disorders and/or who may have been recommended by a patient. Listings below do not constitute a recommendation or endorsement of that clinic, nor do they guarantee a standard of care. We strongly encourage you to be an proactive and informed consumer. Each community has a wide variety of medical care providers that you can find through personal recommendations, doctor referrals, medical associations and, of course, your phonebook.


Bangor - Robert A. Grover MD

Bangor Women's Health Care
417 State St., Suite 442 (Webber West Building)
Bangor
Maine
04401
Phone: 207-945-6206
Web Page: http://robertgroverdo.yourmd.com



Lewiston - Ted Roth MD

Central Maine Medical Center - Women's Specialty Center
287 Main Street, Suite 201
Lewiston
Maine
04240
Phone: 795-7180
Web Page: http://www.cmmc.org/doctors.taf?screen=search&APS=0&specialty=&location=&lname=Roth&submit=Search+Directory



South Portland - Karen Liberi PT

Holistiic Physical Therapy Services, Inc.
260 Western Ave.
Portland
ME
04106
Phone: 207-879-7510



South Portland - Susan Ramsey PT

Holistic Physical Therapy Services, Inc.
260 Western Ave.
Portland
ME
04106
Phone: 207-879-7510



Waterville - John McGowan PT

OrthopedicTherapy Associates
234 College Ave.
Waterville
ME
04901
Phone: 209-873-5503




There are a lot of things you could ask your Doctor about trying. There are several combinations that are endless for other things to try, some combinations work and some don't. It's just like the puzzle. Keep at it and you may just stumble across the right fit. Some therapies are controversional and may feel wrong to you, if so don't be afraid to say so. Your doctors should work with you on this and understand if you don't want to try something. Have you tried Antihistamines, Antibiotics, Antidepressants, Prelief, Algonot & Cystoprotek, Instillations - DMSO, Cystistat, Heparin, Rescue Instillations, Nerve Stimulation, Interstim, BCG (Bacillus Calmette Guerin), Cyclorsporine, Botox, Pelvic Floor Therapies, T.E.N.S Therapy, Diet & IC, Alternative Therapies, Estrogen & Hormone Replacement, Exercise & Fitness, Pain Management (The possibilities are absolutely endless with the combinations of pain medications you can try). You have so many choices and combinations with what I just mentioned and it can take some time and several doctors that are patient to find the right combo. What I am trying to say is that it is vitally important to keep fighting with different treatments
and to not give up too soon on any of them, unless they feel wrong to you or are hurting you in a nagative way. Some of them take 6 months to a year to work or longer. Some of them need adjuncts (other meds added to them in order to make them all work efficently together).

There may be some helpful information in the IC Patient Handbook that you could make questions out of for your appointment tomorrow: http://www.ic-network.com/handbook/

Good Luck to you and Well Wishes,

Kara:smile tee

[Kirs10]

These are the two specalists that say there isn't anything they can do for me.

I took Elmiron for 3 years and there was no improvement so the last specialist took me off it.




Bangor - Robert A. Grover MD

Bangor Women's Health Care
417 State St., Suite 442 (Webber West Building)
Bangor
Maine
04401
Phone: 207-945-6206
Web Page: http://robertgroverdo.yourmd.com



Lewiston - Ted Roth MD

Central Maine Medical Center - Women's Specialty Center
287 Main Street, Suite 201
Lewiston
Maine
04240
Phone: 795-7180
Web Page: http://www.cmmc.org/doctors.taf?scre...arch+Directory

[Kirs10]

Kara,
Thank you for responding to my post I have tried some of the things that you have suggested. I have done the rescue instills, as well as, and interstim implant, they did do nerve stimulation with me for a while but it hurt so bad that they stopped it. I follow the IC diet and i cant find a pain management center that will treat IC not one in Maine will treat it.

The other problem that I have is that while I am out of work and trying to get disablility I don't have much money it is really hard to pay for the medicine that I have to buy. I can't get help from the pharmacutial companies.

I am struggling with all these issues and am trying my best to deal daily. I spend my day either in bed or on the sofa, and am in major pain every day without any help from it.
So that is why I am askng for help I am sorry to ramble on, thank you very much for your help.

[jjt001]

Have you ever tried a higher dosage of Elavil? I originally went up to 75mg/day, my doctor's maximum recommendation, and felt terrific. Never even thought about my bladder. Since then I worked on reducing my dosage down to 25 mg. Unfortunately, I have found that I really can't make it on 25 mg. I need at least 50 to keep me feeling good. Once I'd been back at 25 mg for a few weeks, I was starting to have bladder pain and irritation every day (my frequency and urgency didn't increase a lot, but the pain did).

I don't love the side effects of Elavil -- I've gained some weight and have to watch my blood pressure, but I really love the way it reduces my bladder pain. Just an option you could talk to your doctor about, unless you already know that you can't take a higher dosage (and, of course, don't increase your dosage till you talk to your doctor!).

Before elavil I found that one of the most helpful things I could do for my pain was exercise each morning. I'd go at 5:00 a.m. (so that I could be back in time for my husband to go to work -- I have a 4 year old). I can do the eliptical trainer without aggravating my pain, so I would do that and drink lots of water. The combination of the pain-relieving hormones (or whatever they are?) and the water early in the day really helped me to keep my pain somewhat under control (not totally, but it was better).

Good luck!