Please help me

[Stacey89]

I was diagnosed with IC via cystoscopy in Feb of this year. I have not been able to get any treatment for the IC. I went to the Uro for the post op visit and he gave me no meds and when I asked if I did have IC he said we would wait and see. He did say that when he did the cysto he saw inflammation and when he stretched the bladder it bled. He even told my family after he came out of the OR that I had findings that were consistent with IC and that I had urethral stenosis. But he said he would see me in 3 months. This is not acceptable! I am in pain!

I had a hysterectomy last month due to severe endometriosis, and my bladder has been acting up ever since. It has been really bad this week. Thankfully I have painkillers from my Gyn and have been on them for about a year due to the endo, but it has helped the bladder. Obviously, though, he won't be treating me for much longer because I have had the hysterectomy. I need to find a Uro to treat this and manage the pain.

My symptoms are: bladder/lower pelvic pain that radiates into the hips and legs ( I was told that hip and leg pain is not part of IC ), pressure, have a hard time starting the stream of urine, other times can't stop running to the bathroom.

Do you think that if I talked to my Gyn that he could refer me to a Pain Management doctor or would a Uro have to do it? I have yet to find a decent Uro and have even been to one of them listed on this website for my state! I am not a drug seeker, I just want to live as normal a life as possible.

Thank you ,
Stacey

[LisaS]

Stacey,

I am also new. I don't have any words of wisdom but searching for some myself. Best of Luck.

Lisa

[ICNDonna]

If you have a primary care physician, my suggestion would be to ask for a referral to a urologist to help with treatment of your IC. There are many treatment options for IC and many ICers don't need full time pain management. Are you following an IC diet? What treatments have you tried?

Most urologists will help their patients with pain while trying various treatments.

Donna

[ginac]

I also get quite a bit of hip pain that goes down into my legs when the pain is really bad... I think it might be muscle spasms caused by the IC. I havent asked the doctor yet about it, however I intend to. I also read that IC can be related to Lupus and MS so I plan on having my regular doctor check for those. the uro is going to do a bladder distention and biopsy on monday. He wants to see if that helps at all, in some cases it provides you with some relief. If not my regular doctor is going to send me to pain managment. I have gone onto the diet pretty strict which isnt helping too much yet, however it my understanding that it can take a while for it to have an affect. I do know if I go off of it at all it greatly increases my pain. Sooo I am just sticking with it...

You might want to talk with your ob and ask him to send you to a pain management doctor if your regular doctor or uro wont send you.

Hope that helps.

Gina

[gwynnie]

i think u should go to a urologist and ask his opinion and also try to see if you need a pain dr..

[Kiyoka]

yeah I would ask your PC to referr to you a urologist that works with ic. Three months is a very long time, I would think he would've wanted to start something soon to get it under control. I wish you the best of luck. If you ever need to talk your welcome to email me, or anyone kiyokafett@yahoo.com

[Stacey89]

Does anyone know where I can find some articles to print out and take to my doctor? I have looked over the handbook on this site, but I am looking for something that mentions how hip and leg pain can be associated with IC.

[Amyinagony]

It seems to me that just with the findings from the Cysto w/hydrodistention (inflammation consistant w/IC, and from what he 'told' you with the bleeding upon distention, and as long as he has ruled out all other possiblities) that is all he needs to diagnosis IC and at least try like some Elmiron, and give you some pain meds until he finds a treatment to work for you. He should have done this on your f/u visit. NOT make you wait 3 more months. Just my thoughts.
I think if I were you, I would be back on the phone tomorrow to that Uro telling him the kind of pain that you are still in and ask if there is anything he can do to help you out. If he still tells you to wait the 3 months until your next visit....then I would be shopping for another doctor. If you shop for another doctor, when calling the office of a Uro inquire about the doctor's knowledge of IC and ask how he treats pts with IC. Ask this on the phone before you even go see the doctor. This may save you wastful trips to Uro's that do not really know IC. Learn all you can about IC and the different kinds of treatment, so that you can be armed with knowledge yourself when inquiring about a treating IC Physician.

I can have thigh (and low back) pain when I have bladder pain. MY doctor called it referred pain. The hip pain very well could be the same idea. But even if hip pain is not a part of IC, I think you still have enough proof to be officially diagnosed with IC. (Maybe the hip pain is something else going on along with the IC)

FYI: I have a URO/GYN that treats my IC. (She actually does mostly GYN issues, but treats several pts with IC.) I went to 11 Uro's and got nowhere with them. That was my experience. Other's here have wonderful Uro's. And I know that mostly Uro's treat IC, I just wanted you to know that there are some URO/GYN's that know and treat IC.
Wishing you the best. Good luck. :grouphug: