What to do next for my severe IC?

[teewren]

I'm in my 50's and I have been living with severe IC that can flare up from day to day. My urologist treats me with amiltryptiline 50mg at night and Elmiron 3x a day and rescue instillations. Besides that he says there is nothing else he can do. He says when he looked inside my bladder it was the worst case he'd seen. Some days I can manage whereas other days I have extremely sharp pains in the urethra vulva region and spasms and burning where I can't even stand to sit down. I've been as good as you can be on a diet...no sodas, tea, etc. but some days foods that are okay aren't okay. I never know. I'm a high school teacher and the schedule is killing me. I don't drink water so by the end of the day I'm dehydrated and that makes me hurt as well. Oh and I'm taking Lyrica for Fibromyalgia. What can I do? Also, I have extremely high TPO antibodies because of Hashimoto's. Could my body be attacking my bladder as well? What about high doses of prednisone?

[katibee]

I have had refractory IC  since 1996 and am near 64. I know every public bathroom on my normal activity routes.  I have been on just about everything they can think of to help. We are still looking for the combination that is most helpful.  Urelle taken at first signs of an episode along with something for muscle spasms seem to help me. I also have very bad cramping of the bladder every time it needs emptying the only thing that helps is a high dose of a pain killer that the doctors have given me. I have tried to go without it but I can not. I have bleed through pain during episodes.  I have just started taking meds for anxiety
at the on set of episodes also. They seem to be helping also.  

[beth1108]

I too have refractory IC, I just had the band procedure to raise my bladder to see if that will take pressure off. Elmiron did not help, so we stopped it. My question is after this surgery, being that I just had on Monday ( it is saturday now), I feel like I can't stand straight and feel pregnant ( couldn't be!) I also came home thinking that I would have lost weight due to the prep before surgery to empty my system and I had gained weight. How long will this last? What was done to make my stomach so big?

[David A Burks, MD]

Hi,  Unfortunately you have the most challenging clinical problem in Urology-- refractory interstitial cystitis. I agree with the elavil and elmiron, plus the intravesical treatments.  It sounds like your Urologist knows what to do.  Unfortunately your symptoms are not responding. Prednisone is ineffective in treating IC symptoms.  It is common to see IC and fibromyalgia together.  We don't understand what the underlying problem is. Option one is pelvic floor physical therapy.  A trained pelvic floor physical therapist (PT) can do massage therapy to the painful muscle trigger points generating the pain.  A new major study shows effectivenenss in this option if done by an experienced PT.  If that doesn't work, your care is boiling down to a list of few options, all are surgical and none are good.  Option 1 is Botox injections into the bladder.  A few studied have show effectiveness  in relieving the symptoms of IC.  Unfortunately Botox is not FDA approved for use in the bladder and you would have to talk with your Urologist to see if your insurance companywould cover the cost of the drug. It may be an expensive out of pocket cost if it's not covered, and unfortunately the studies show the IC symptoms are back in 3-6 months requiring multiple reinjections.  Option 2 is the interstim sacral nerve rood stimulator for urgency and frequency.  This is a surgical implant into the spine to block the urgency and frequency signals from the bladder and pelvic floor musles.  Its done as an outpatient under local anesthesia and a temporary stimulator lead can be inserted first for a trial prior to placing a permanent one. It was not designed for pain but some patient's pain improves anyhow. Your Urologist would need to be trained in this procedure to do it.  If your bladder is very small and scarred (holds less than 200 cc with distention under anesthesia) you may benefit from having your bladder removed as an ultimate last resort.  It's a big operation lots of possible complications, and unfortunately 25% of patients who have their bladder removed for pain still have bladder pain with no bladder!!  It's analogous to phantom limb pain in patients who get their leg shot off during war. Unfortunately I know of no ongoing clinical trials using a research drug for refractory IC.  Your options are limited. Continue all the things you are doing.  I would first find a good pelvic floor physical therapist and start there.  Good Luck.