I was diagnosed with IC in 2003, I have been alot of pain with it, and extreme urgency and frequency. I had a hydrodistension done in 2003, and it worked pretty well for about 8 months. Then in 2005 I had just started a new job and I had the worst flare and my then uro did another hydro in december of that year. It last about 6 months and then the pain came back and the uro refused to do another hydro, he said that I needed to try everything else first. So, rescue instillations, self cathing, upping meds, and a refusal from me to do DMSO treatments, and he was done with me. He told me that I had refused the stndard of care there was nothig else that they could do for me..........this was all over a 2 month period.So I found a new URO 2 hours away. I saw him and in the first visit he told me that i needed the interstim done and that it would help with the pain and I would be feeling better by the weekend is what he told me husband. He did tellus that if this didn't help with pain he would do a hydro every 6 months if I needed it to be done. 2 months later he did the trial, and it didn't help with pain but it did help with urgency and frequency, so he told me to put it in and they would refigure it and it would help with the pain.
So December 15th I had the interstim installed and guess what no help with pain and when i went back for my post op he told me that i needed to give it time and that it would work but it didn't so when i saw himj again i asked about the hydro and he said that he doesn't do them very often because he doesn't believe in them.
I worked for a month through major pain taking vicoden every 4 hours for pain and dealing with the sweats and the side effects, I went back to my PCP to see if he could give me some stronger meds and he agreed to give me percocet and vicoden and to alternate them. I did get to see the URO again and made him do the hydro that has always worked and so on the 23rd of March he did and it made it worse if anything. When i went back for my post op from that he told me that we had done everything that we could do to fight this and there just wasn't anything else we could do.........He told me he would give me a fentanyl patch to try and see if it helped but that my PCP would have to follow it. So I followed up with my PCP and he upped the patch to 50 mcg and says that i will probably need to go up to 75mcg. His concern is that he is going to get h pain meds to help with the pain but he is not sure I am going to be able to function on all these meds.
I am feeling very depressed, and I am trying to keep my chin up and it just gets harder and harder. My husband is not very compassionate about my pain and he isn't very happy that there is only one income in our family right now. I am thinking about filing for disabilty, but can't afford the book that is on this website for sale to help people.
I guess I just needed to vent my situation and see if there is something else that I am not aware of to try to help me with my pain.
I really appreciate all the help you can give me.
So December 15th I had the interstim installed and guess what no help with pain and when i went back for my post op he told me that i needed to give it time and that it would work but it didn't so when i saw himj again i asked about the hydro and he said that he doesn't do them very often because he doesn't believe in them.
I worked for a month through major pain taking vicoden every 4 hours for pain and dealing with the sweats and the side effects, I went back to my PCP to see if he could give me some stronger meds and he agreed to give me percocet and vicoden and to alternate them. I did get to see the URO again and made him do the hydro that has always worked and so on the 23rd of March he did and it made it worse if anything. When i went back for my post op from that he told me that we had done everything that we could do to fight this and there just wasn't anything else we could do.........He told me he would give me a fentanyl patch to try and see if it helped but that my PCP would have to follow it. So I followed up with my PCP and he upped the patch to 50 mcg and says that i will probably need to go up to 75mcg. His concern is that he is going to get h pain meds to help with the pain but he is not sure I am going to be able to function on all these meds.
I am feeling very depressed, and I am trying to keep my chin up and it just gets harder and harder. My husband is not very compassionate about my pain and he isn't very happy that there is only one income in our family right now. I am thinking about filing for disabilty, but can't afford the book that is on this website for sale to help people.
I guess I just needed to vent my situation and see if there is something else that I am not aware of to try to help me with my pain.
I really appreciate all the help you can give me.



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