Kidney stones on top of IC..plus more?!?!?!

[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:

[Billsbaby]

hello and:welcome: , everyone here is so knowlegable, i am sure you will get a lot of support.as for the kidney stones,i personally have never had any(knock on wood) but i know a lot of women on here do get them, so i think in some way they are related. i hate the way doctors make you feel like a drug seeker,which is also another thing thats common with this disease.i have gone through many problems with drs since this all began and i can understand your frustration.so no dr is going to continue to give you pain medicine after this? i find that so wrong,for many of us, when it comes down to it ,the pain medicine is one of the only things that helps us have somewhat of a normal life.you should try to find a new uro,any new doc you can who is understanding to this,i know its hard but there are some out there.you can look it up on the internet.i hope i helped somewhat,i hope everything gets better,stay strong, you have everyone here behind you.i have found this site to be the best thing that has helped me so far,so your in the right place.good luck.

[Jayson's Mom]

Thank you so much for your reply. I have felt so alone through this whole process. It seems like no one, not even my doctors, understand what I am really going through! I am so glad I decided to become a member of this site. I look forward to being able to vent to people that have a clue and feel my same frustrations!

I am trying day by day to live a normal life. I have no time to be down and out....I need to be strong for my son. He is the reason I breathe and I will do everything in my power to be there for him for the rest of my life! I cannot allow this illness get the best of me!

:pray: