chronic pain

[Kirstiexanne]

About a year ago i was diagnosed with IC. I just found out last week that I most likely don't have IC, just chronic pelvic pain. My symptoms are pretty much the opposite of IC.It hurts for me to urninate, it does not releive me in any way. I dread going to the bathroom everyday. I am having a very hard time finding a doctor to treat chronic pelvic pain. I have been on so many websites looking and I can't really find anything good. So, i was wondering if anybody had a really good chronic pelvic pain doctor, not an IC doctor. I live in Maryland but at this point I am willing to travel. Please Help!!!!!! Thanks

[zipher]

It's not a relief to urinate AT ALL with IC. It's pretty much the worst thing in the world and I try and put it off as long as possible.

Just an FYI.

[Briza]

How was it determined that you don't have IC?
I don't have urethral pain when I urinate but pain, burning, and pressure as I finish urinating at the base of my bladder. Many many of us are not relieved by peeing and actually live in constrant dread of going to the RR, knowing that we are not going to get any relief after we go.
I don't mean to question your doctor's diagnosis, but I wouldn't give up on IC meds because even those who have gone to all lengths to determine what is causing their symptoms, hydros and cystos, for example, and have normal looking bladders, still have symptoms and respond well to IC treatments.
I'm not in your area, so don't know of any pelvic pain specialists, but one could have some answers for you....possibly pelvic floor dysfunction? and find some treatments that could help you.
If you haven't had a laparoscopy to rule out endometriosis, that is the #1 cause of chronic pelvic pain in women. I had this procedure done when I was in the IC dx process to rule out endo.
Best wishes. I hope you find some answers and some treatments soon that will help you :)

[kmvps]

I just registered a few days ago and have been reading alot on here lately. I just thought that I would comment on this to hopefully network for support. I am 26. Diagnosed with crohn's disease in 2001, endometriosis in 2004 and IC in 2005. I am so desparately trying to find a good doctor. I live in wilmington NC. Can anyone help? It feels like I am always trying to convince my drs that my issues are real. My biggest problem is pain. And lately it has been so bad I can't live a normal life. I have been taking hydrocodone for years but now since my primary care doc referred me to a uro who won't prescribe them I can't get them anymore. I have tried everything for relief but sometimes the pain meds are the only way to make it through the day. Has anyone ever heard of botox injections to relieve IC symptoms? the uro told me this but said it was not FDA approved. He also openly admitted to me that I probably knew more about IC than him and I am sure he is right. Now what? Oh, I had a really great doctor in West Virginia for pelvic pain. Is that too far to travel?

[kmvps]

kirstie.....like i just said, i had a great pelvic pain doc in west virginia. too far? i posted this again as a "quick response". since i am new to all this, i have no idea what that really means. just wanted to let you know. where in maryland are you?

[kmvps]

where exactly are you in maryland? we could figure out how far away that is from the best doctor I have ever had. He specializes in pelvic pain and maybe even if you couldn't see him, you could call his office and see if he recommends anyone. I can't even explain how much I loved this man. He and very few others give me hope that I can find another good doctor in NC. Just not yet.

[mom_in_ma]

Actually, I have pain when and just after I pee. I'm actually most comfortable when my bladder is filling. Strange, but true.

[megancolleen]

Me too, Mom-In-Ma.

[skeetor]

Hi, I was reading this thread and wanted to respond to help. I was diagnosed with IC a year ago. I don't have urinary urgency or frequency, just chronic pelvic pain. I am an RN and it took me four long years to get a diagnosis after going through alot of specialists - gyno, urologist, urogynecologist, rheumatologist, internist, etc. I have bladder spasms and pain that moves around in my lower abdomen, hips, low back etc. Everday the pain is somewhere below the waist. I had a lap. hysterectomy almost four years ago. Maybe it was due to the pelvic surgery and trauma, who knows.

I've tried Elmiron which didn't help. The best thing that helped me was finding a physical therapist that has extensive training in pelvic floor dysfunction. Picture your pelvic muscles being like a "tight fist". You've got to get the muscles and tissues to relax and get good blood flow to the area again. My PT does myofascial release massage on my abdomen, massage on my lower back, thighs and hips, internal trigger point release, biofeedback, etc. He even gave me this "sex tool" device ( I know sounds weird but it helps) that is S shaped that you insert to where the certain muscle is "tensed" and you apply pressure to the area to relax it. Can you find a therapist in your area?
It is also suggested to try Yoga, Accupuncture, etc. I'm also going to try DMSO bladder instillations. I'm also on Lyrica to disrupt the pain signals at the spinal cord so the ole brain can't interpret it as pain which has helped. I'm also on Paxil. Not too crazy about being on meds but when you're in pain you've got to try all modalities. I too also heard from a urologist to expect Botox to be the next treatment on the horizon as soon as the FDA approves it for bladder tx's. Good luck and hang in there.

Renee