what can patients do

[icmama79]

I am so tired of docs refusing to treat ic patients with meds, or they get pressure from other docs and call u an addict when your not, or just plain cut you off. I found pain laws in some states but not in all, same with advocates.
what or where can someone start to make these happen in there state?

[Briza]

I am not really sure how to answer your questions but will say what has helped me:
I require a fairly low end pain med Tylenol #3 (tylenol with codeine). It works like a charm for me while pain meds as strong as morphine do not work at all.
I stick to my one prescribing IC dr (my gyn). He knows that I have used my pain med sparingly and only as needed as I have never developed a tolerance or dependence for this med and it works as well for me today as the first day I took it 5 yrs ago.
When I told my GP and her NP about my IC and the meds I take they gave me the look up and down and very sternly said you will become addicted to Tylenol #3. I looked them in the eyes and said back very sternly that neither of them were my prescribing physicians and neither of them were of any help in getting my IC diagnosis, even tho i visited their office multiple times over a year's period with complaints of my unbeknownst to me IC and VV symptoms to no avail. I also said that I fought for two years to get appropriate treatment, pain relief, dx, normal life back and that since they were not my prescribing drs that they were NEVER to bring up ANYTHING about the meds my IC dr Rxs me to treat my symptoms. I said that if anything THEY rxd me had possible danger of interaction with Tylenol # 3 or any of my other IC meds, then I would certainly take that into account and discuss it further with them, my pharmacist, and my IC doctor.

Since that conversation with my GP/NP, I am by far not their favorite patient after telling them what I wrote above. But my GP and her NP are excellent in treating me for other things, just not IC and VV. And for me it was very helpful and conscience-clearing to let my GP know of my conditions and all of the meds my IC dr prescribes me....she may not have liked the manner in which I told her about those things, but it certainly set the record straight that she was not to interfere with the most excellent and successful treatment my IC/VV dr provides me...while my GP cannot even spell Interstitial Cystitis, Vulvodynia, or Vulvar Vestibulitis or name any possible causes or treatments for these conditions.

I am not dissing my GP or her NP...I do find them very good at what they do and what they know and have always received excellent and most times succesful dx and treatment from them...and tho I do keep them in the loop and aware of my ic,vv, and pfd treatment and progress or regression, that one conversation with them helped much in the anxiety dept when I have to see them....and they no longer question me or accuse me of becoming "addicted" to meds that I have not. Possibly they think it lol, but don't accuse me of it or give me "the look" any more!!