DMSO (Cysto/Hydro) on Tuesday

[emilyec]

:( Hello everyone-

I had my second DMSO (Cysto/Hydro) and I can't spell the right word for the procedure (starts w/an "L"), but it is where they use shockwaves to remove kidney stones-from the left side, this Tuesday. The last time I had this precedure done (DMSO) was a month and 1/2 ago and my Uro says that my IC is 3-times worse than it was last time. So he tells my Mom that he usually doesn't prescribe pain meds, but mine is that bad and plus I might pass some gravel after the 2nd precedure and he sends me out the day surgery door w/20 Norco 10! I couldn't believe it!! They were giving me Morphine shots that had absolutely no effect on me after surgery. This medicine is no better. I sure hope I find another Houston Doc soon that is willing to help me as this pain is a daily issue. Does anyone know if this treatment can actually make the IC worse? My Uro even actually said, "Well, she must not be following her diet" which my mother told him was not true , that I was. Also, he said. "she doesn't have Cancer yet!", I thought there was no association between IC and Cancer?

Love -Emma

[tillysav]

Sorry you are having such a hard time ....... And, it sounds like you need a new URO. This guy does not sound very nice. There are others here from your area maybe someone will chime in with a referral. Good Luck :grouphug:

[Dixiefireball]

i also agree you need another uro :( you do need some pain control
sending you hugs and prayers
Rhonda:kiss: :pray:

[franya]

Hi,

This is a terrible situation you must get a better doc. You have rights to recieve better treatment from you Dr. I can not believe he said these things to you. Shame on him if you do leave send him a note about why you left and also his supervisor or partners. No you don't have cancer but you have a disease that is extremely painful and not very well known and it gets no respect. Next time you go bring him the facts about pain treatemnt listed inn the IC handbook.

Franya

[emilyec]

Thank you all so much for your loving words and support. One of the biggest problems is the fact that a lot of doctors do not take my insurance. When I began to have all the problems I had no insurance and the state issued me Medicaid. I actually found a pain doctor in my town that has IC patients, but was unable to take my case because of my issurance. It's been a big obstacle in finding the right doctor. My biological father called me and is going to help me with this finanicially as best as he can and has also done some research on this disease and the options avaliable. I hope that something pans out soon. He wanted me to check into the onlnie services availiable. He said that there are legit services in which you send all you reports from your doctor and i.d. (through faxes) and these pain doctors call you at home for appt., then call in scripts that are delivered to your house the very next day. It sounds promising, but I'm unsure and wanted to know if anyone else here knows of this or any that they could recommend. Again, thanks to all of you. One of the things that I have to look forward to in the day is getting the chance to speak to the wonderful supportive people on this network that are in the same boat as me!:angel: :angel:

Love-Emma

[ICNDonna]

Emma, I would never obtain medications from a doctor who would prescribe them without actually seeing me, especially narcotics. There are some doctors on the internet who do so, but it is not considered ethical. There was a doctor in Oregon who recently lost his license for prescribing pain killers routinely on request --- he was seeing the patients one time only and okaying refills indefinitely.

I hope you can talk with your doctor about pain control and receive some help from him --- or from your primary care doctor.

Sending healing thoughts,
Donna

[Audrey Rose]

Emma, I agree with Donna. I am a nurse and it makes me really really nervous to think someone would prescribe pain meds without seeing you. A doctor needs to be following you carefully. Some drugs interact with others and there is just a lot of risks.

:yikes:

If you can not get one of your doctors to help you, you can always go to the ER to get help. That way an MD is following you. When you are there, ask the staff about who'd they recommend as a new URO. Believe me, the nurses always know who is good and who is not. They should have access to who takes your type of insurance. Unfortunately, IC will be a lifelong struggle and you definitely need someone you can count on. :thumbsup:

Good luck!! Be safe and take good care of yourself. I think you already know this, but let me remind you: IC is an unpredictable and difficult to control disease. IT is not your fault at all that you keep having flares, it is just part of the horror of IC. You are are doing a fine job!! And you are not alone. We have all been there!!

I pray that you find a kind and helpful uro and a PCP too. You deserve nothing less. And I pray that someone can control your pain soon.

Big HUGS and A :kiss:,

[Dixiefireball]

i agree with the both of them i would never take pain medicine from a doctor who has never seen me be careful this is so dangous i know how it is to be on medicaid but sometimes if you have a family doctor they can refer you to a doctor and they will accept it just because your family doctor refer you to them
this is highly dangerous so please beware and take there advice.
sending you hugs and prayers
Rhonda:kiss:

please remember we are telling you this because we really careabout you.:pray:

[Julie Smith]

Emily,

I'm sorry you're having such a rough time. Noticed where you live and wondered if you tried to see any dr. outside your immediate area. The reason I ask is bc I have a sister who lives in Huntingon, TX and there are few and far between specialists for her problems, not ic. Just thought if location was larger better chance for dr.'s selection to be larger also.

Hope you feel better, hang in there and do keep us posted,
J:kiss:

[ICchell]

Thats awful.
Please find another URO! There are so many out there that dont take IC serious!:kiss:
I hope U feel better soon
Hugs,Michelle

[kadi]

I agree with the others. I drive extra to go to my doctors (anywhere from 45 min to 1-1/2 hours), because my first primary care doctor & urologist (both 5 minutes from my home) were both wrong and unpleasant!

I really like & respect the doctors I've seen since then - and to get to see them I don't regret the extra driving in the least!!!

Good luck to you & hope you are feeling better very soon.
Love,
Kadi

[SharonA]

Emma...

I know how tempting it is to get help from any source when you are in pain. Please, please, please do not use an online source. You know nothing about them. They know nothing about you but, if you send them personal info, they will. That could spell trouble for you.

[emilyec]

Thank you all for the advice. As I said, I had reservations conserning this practice, but it was something my Father asked me to look into and this seemed the best place to get info. I did some of my own research on the subject and learned that there is no way to know what kind of medicine that you are getting and that is scary. I've looked into Huntington, Tx. for doctors, but unfortunely couldn't find a listing for a doctor under pain mgmt., but I maybe looking under the wrong "keywords." I can't remember who posted the info about their relative that lives there and that she recieves treatment from doctors there, but I would be very interested in the name of that doctor if I could. Tomorrow I have another procedure done. I won't embarrass my self by trying to spell it, but it is a shockwave treatment to my right kidney to remove stones. Along w/IC, I have renal-stone disease. I pass gravel afterwards and it gets my IC really flared up. Wish me luck! I had going under anesthia (so scary).
Love-Emma

[ICNDonna]

:pray:
Warm hugs and prayers headed your way.

Donna

[SharonA]

:kiss: Let us know how it went...