IC, Urethral Instability, Pelvic Floor Dys now Kidney Stones?!

[Jayson's Mom]

I was diagnosed with IC last January and have gone through every medication imaginable. Since then, I was also told I have urethral instability along with pelvic floor dysfuntion. I understand all 3 conditions go hand in hand. I went through the boxtox which although extremely painful when injecting, really did show immediate improvement for my pelvic floor. I was supposed to start DMSO treatments and was told that the manufacturer discontinued making it. My Dr's next step is either cysto w/hydrodistension again OR installing the interim.

In the meantime, I landed myself in the ER Thursday with kidney stones again. I ended up back in the ER Friday getting a foley catheder since my urethra was totally clamped up and not allowing anything to pass. Now I sit here in extreme pain, taking 60mg of oxy a day and 4mg dilaudid every 3 hours! My primary care physician "fired" me because he can no longer handle my refills of the oxy's. There was only ONE pain management specialist in my area that would take on my condition and he was an absolute waste! My insurance company will not approve covering the Lyrica, even though 3 different doctors fought them tooth & nail. I am sick of being treated like I'm a junkie! I want off any and all narcotics but after a year of looking for alternatives, I am left empty handed!

Does anyone know if the kidney stones are in any way related with IC? I am so lost and confused, I have no idea where to start first. It's been a year with the IC and no real improvement from the Elmiron or Heperin treatments. Botox worked for 4 months and I do NOT want to endure that pain again. I have no reaction to the antihistamines or the flomax for my urethra. When they did the cysto for my diagnosis, there was no real relief or break from the flare ups.

I have been reading posts on this site for the past year and alot has been helpful for me. If anyone has any insight or words of wisdom, please let me know. I am at my wits end with this sickness....especially since the kidney stones came back! I am trying so hard to keep my head up but it is getting so hard when I never seem to catch a break! :bonk:

[Moonheart]

I have horrible kidney stones also with my IC. All of the lobes in both kidneys are involved. So I can totally relate. :( I'm so sorry you are suffering like this. :(

[Kara29]

Hello there!

Many people get some relief from Hydrodistensions. Some people live off of them to help relieve some of thier symptoms.

The Interstim is not meant for pain but can be benficial to some for urgency/frequency, retention, and incontinence. The Interstim Message Board here has lots of pros and cons to that surgery. There are also people on there that can share thier experiences with you.

I am not sure about Kidney stones being related to IC. Maybe someone else has the answer to that. I am sorry you are suffering from them and in so much pain. I know how it feels to have to rely on medication, especially narcotics.

About the Lyrica, have you tried Neurontin? Is similar to Lyrica and maybe your insurance will cover it. It has a generic form called Gabapentin that maybe your insurance will accept.

For a pain management specialist, sometimes we have to travel outside of our area to find a good one. Some of us travel hours to get to ours even though it sucks. Maybe you can find one outside of your area. Some of us have to cross the border into different states. The ICN has provided a site to help search for Pain Mangement Specialists: http://www.ic-network.com/md/painlistings.html

For IC there are tons of other treatments you can try. You just may need a real special, caring doctor who understands the full depth and treatments of IC. There is a physican listing of IC doctors here on the ICN Site Map. http://www.ic-network.com/md/doctorlistings.html

In New Jersey and New York: http://www.ic-network.com/md/doctorlistings.html#NJ

Again, you may have to go outside of your area to find a great IC doctor. I had to travel 6 hours to Boston to see mine.

We are here for you for support and any more questions you may have! You are not alone in this fight!

Let me know if any of this information was helpful to you. I can look for more if you would like added assistance.

Kara

[Jayson's Mom]

I want to thank everyone for thier input! Every little bit is really helpful for me. For the past year, I haven't found many people that have a clue about this disease nor do they have empathy. I really appreciated everyone's kindness and support!