Followup from Hydro

[mary124]

I went to the doctors yesterday for my followup appointment. Pretty much what I expected. Nothing much they can do for me; since my main complaint is pain. (doctors pretty much don't want to touch me because of the valve replacement & coumadin)--pain doctor gave up on me & has given me to his PA who really doesn't know too much about IC, looked around for another doctor but its pretty much the same). Anyway, talking to the Urologist he said that while they were waiting for me to go in to have my hydro done he was talking to another doctor about me and said that instead of having this done every 6-8 months we need to do this every 4 months or so- this way hopefully I will pretty much stay out of pain. So we went ahead and scheduled me for 3 more hydros for the next year to see if that will do anything, I told him I'll go for it but I don't know if my Cardio doctor will and he said he will handle him if he has a problem.
In the meantime, my Mom was trying to call me while I was at this appointment and when I did call her back she asked me where I was so I told her and what the doctor said -- I think after almost 20 years she is finally beginning to realized what IC really is. I told her I would send her the link to some information and let her look and read it at her own time. She did and she called me this morning and she couldn't believe that I have had this all along--of course, my Dad kept telling her all these years "that is why she can't eat or drink certain things--its not because of your cooking!" but she is finally coming around and said that I probably had this since I was in my early teens and i told her yeah...so at least I educated one person....

[GriffsMommy]

I'm so sorry that you didn't really hear any good news or have anything positive come from your follow up appointment. How is it that no one will give you pain meds because you are on coumadin? I would think with all of the different pain meds that are available that there should be some that you can be on while on the coumadin.
If your main complaint is pain, which is also mine, have you asked for a referral to a pain management dr? Since all they do is deal with chronic pain I'm sure they would be able to come up with meds that you would be able to try. I'm not saying that your uro is wrong in doing repeated hydro's but if you're in pain you have the right to have your pain controlled. Hydro's don't help me so I need pain meds on a daily basis if I want to even be able to get out of bed.
As for your mother, I am glad that she finally seems to understand your IC but it is sad that it took so long for her to understand. As soon as I was diagnoised and found this site I gave the link to my mother to look at the info so she could get a better understanding of it. She still has issues with me being on pain management but I asked her if she wanted me in horrible pain all day every day and of course she said no. I told her then I needed these pain meds to at least lessen my pain and as long as I took them the way they were prescribed my dr assured me I would not become the "addict" she thought I would turn into.
I hope you are getting relief from your hydro and your pain has lessened. :grouphug:

[mary124]

I think I wrote this wrong or something, I am on pain medication -- vicodin
10-500mg x 4 daily, but it doesn't help, especially towards around the 4th month or so after having the hydros, and my pain doctor won't give me anything else. As to the hydro's my doctors have told me that is about all that he can do for me because of being on coumadin-- anything else I would have to be on/off of my medication which wouldn't be good for my valve.
( I even went to a Uro/gyno for a second opinion a few years ago and he pretty much said the same thing).