[felina]

I have had IC for about 15 years and over the past 3 years my IC has advanced dramatically. I have had many distentions and about six months ago started doing my own IC cocktails.

I usually frequent my urologist monthly for urethra stretching – which I really don’t think work and for pain medication (prescription). The urologist is see is about the fourth doctor I have switched to in the last 15 years. He has by far done the most to help my IC

Recently, I have been looking into finding an additional physician (to go to concurrently with my urologist) that practices holistic and/or traditional pain management. I am quite the skeptic when it comes to holistic medicine and the pain management (I have heard negative things), but I am willing to try anything at this point. What is the reason for my interest in finding a pain management doctor? Well, I feel I am begging for my pain medication prescription at my monthly doctor visits. I feel embarrassed to ask, but I really feel the medication provides somewhat of a better quality of life for me. For starters, I work full time in a stressful administrative position….many days I work many hours from home in the evenings.

Recently, I have missed several days from my IC I cannot afford to miss work or jeopardize my employment. I cannot afford to end up not working and on some type of disability.

How do I go about finding a pain management doctor? What about insurance? I looked in my insurance book and there aren’t any listings for pain management type doctors. Do I call hospitals? Why isn't there someone out there that really seems to care! I wish my doctor had IC for a day.... I bet he would look at it in a whole new light!

Helpless in Cincinnati,
Felina

[UroDoc]

You might want to find a doctor that implants Interstim, made by Medtronic, good luck

[felina]

Interstim.. I will have to look into this. Is there a good success rate with the implant? Can you return to a somewhat normal life? I wonder why doctor hasn't suggested this. He may not know, since he is a small clinic doctor in a semi-rural area. I may have to find a doctor in the city that can do the surgery.

Thank you!
Felina

[UroDoc]

There is a testing phase so you will know if it works for you. I would say my test rate is 75% successful. You might need to go to a medical center, Call Medtronic to see who is near you that implants Interstim.

[rmoneal]

You can call the local licensing board for doctors in your city and they should be able to refer you to a pain management doctor in your area. You should be able to find their phone number on the internet by doing a google search for Ohio medical licensing board. You can also get in touch witht he American Medical Association (another google search) and they should be able to find someone in your area as well. I hope this helps. My Urologist has receommended a pain management specialist in my area so I haven't had this problem.

Good Luck and God Bless.

[Dori]

I understand your concern fully. I am very careful with my pain medication (taking only recommended doses), but a day doesn't go by that I am not taking it. I fear that I couldn't make it through a day without it or would suffer withdrawal, because I am in such pain while I am taking it. I wait as long as I can in a day before I take it, but generally around 2-4 pm I begin the cycle in order to ease the pressure & pain. Once I take it I still feel the pain, but it doesn't bother me as much mentally. I am not as distracted by it & don't have as much anxiety.

The thought of someone taking away my medication induces an anxiety attack. My husband is miserable at his current job, but he stays because him leaving means going a period of time without medical coverage & I panic.

[corky45]

I too live in Cincinnati.(The east side). I have suffered with IC for three years. After numerous testing to rule out gyno and gastro problems, a cysto finally showed moderate to severe IC.. MY Uro does not believe in treating IC with pain medications . My Primary Care Phy. is totally confused as she has never had a patient with the condition before.. This week I even called a "Pain Clinic" and after they reviewed the records my Uro sent, they called and told me they couldnt treat this condition.Needless to say I feel "helpless and defeated". I too feel belittled and degraded when even asking about pain meds, so I just suffer. Please pass on any information you find in our area. I will keep searching as well.
Thanks ..

[JenJ]

I had this device implanted a few years ago, and unfortunatly it did not work for me. This device reminded me very much like an external stimulator, that you can buy. If that does not work, this medtronic device probably will not. Medtronic is notorious to be at alot of the IC conferences. I had success with physical theray for 16 months. It also seemed less invasive than the medtronic interstim device. Anyway, I go to the gym to do my excersices including the precor, and have been fine for 4 years. Previously was in agonizing debilatating pain for 15 years.

[corky45]

I have read about IC patients getting good results from Physical Therapy. Can you give me an idea of how and what to do. ? What should I tell a PT if I contact them?

corky48

[JenJ]

I was refereed to a woman who specialized in Intersitial Cystits. My general specialist, was joined with her. I also went to a chiropractor, and still do to this day. The difference is when I started physical therapy I would go 3x week, and chiropractor 2x weekly. Eventually my body learned where it should be in alignment. Now, I go to the chiropractor one time a month. The key is to find someone who knows what you have, so you are surrounded by the professionals you need. If you are going to a doctor who is linked to these specialists, then they should lead you in the wright direction. I am in a major area in phil PA, so we have alot of specialists.