frogsbulldogs
03-18-2009, 04:25 AM
I am so upset - I finally found a doctor that I thought was going to help me - she seemed so knowledgable. She wanted to start me on DMSO instills right away but after reading about them it concerned me. I shared my concern with the nurse practitioner that was going to be doing it and she said if you don't want to go that route we can do heprin instill instead and see if those work - we can always circle back to the DMSO at a later time. So I did my series of 6 heparin instills after the 2nd one I was completely pain free - I never though I would be able to say that and I felt wonderful. I stopped getting up 7 times a night and was down to 1-3 times a night. I was getting sleep and felt like a new person. The doctor wanted to do a cystoscopy after my last instill to look around - she did not do one prior. So last friday was cysto day I had no worries since I have had several done by other urologists and other than being a little uncomfortible it was no big deal. Well Friday I am there she is late by 45 min. never said she was sorry I was prepped and on the table the whole time the nurses felt terrible. She then springs on me that she is going to do a hydodistention. Now I have heard the word and knew what it was but didn't really know much about it so I asked why and she said well it can really help with the pain that she had great sucess with it - I said I wasn't in pain anymore and she said she wouldn't go all the way but thought it was good for me to do. So thinking a doctor certainly knows more than me we went ahead. She told me to tell her when I got to the point of I have to go so bad I have to get off the highway and to a gas station now. So I did that I was at 750CC's she told me a normal bladder holds 500 so I was doing really good. Then she said that I had terrible scarring at the bottom of my bladder and some open sores and was very suprised that I was not in any pain. We get done she tells me to take peridium for the day and that was it. Well by the time I got home I felt terrible I was in pain again and was urinating every 30 minutes. I suffered through the weekend and called her office first thing on Monday. First the nurse was suprised that #1 I wasn't sedated, #2 why she did it when I had responded so well to the instills and #3 why she didn't give me anything for the pain. So she told me to come in right away for a rescue instill. When I got there my nurse practitioner that does the instills had the same thought the nurse I talked to on the phone did. She said normal protocall is to do a hydro when you aren't doing good - but I was great. She also stated that they did normally sedate a person when they did them - I said that wasn't an issue because it really didn't hurt when it was done it was after that I had the pain. Then she was suprised that I didn't get anything for the pain after. Anyway we did the instill she told me to call her the next day (yesterday) and leave a message as to how I was doing and if we needed to do more treatments we would schedule them. So I called and spoke with yet another nurse practitioner who said to me "are you out of your pain medication?" I told her I never got any and she so oh boy I will call some vicodin in for you right now. Then I said that I thought I needed more instills she said that the dr. was there and put me on hold to go talk to her. She comes back said the dr. said no vicodin I should take ibuprofen and she wanted me to have a DMSO instill right away. And I said no way I don't want to go there - the heprin worked fine before I wanted to keep trying that and if it wasn't working then we try something new. Well the dr. didn't seem too happy about that but gave the ok to go ahead. I was so mad yesterday thinking that she set this off by doing a hydro that I didn't need and now she won't help me with something for the pain. I am not a drug addict and she has only known me a couple months - I have never asked her for anything but for her to let me suffer made me so mad. I figure the stretching of my bladder probably opened up all the wounds that the instills fixed so I am back to square one. I am still miserable I can't get in for an instill until Friday and I have to take vacation time to do it. I really want to see a different doctor. There is another one in the group but she was booked 4 months out so I took this one that had just started in January. Seems to me all the nurses are really used to the other doctors way of doing things and don't agree with my doctors way. Will I have a problem switching to this other doctor I don't want to be a problem patient but I don't like just being told what is going t happen and not allowing me to have any input. The one nurse told me that she wasn't happy that I had questioned the DMSO instills in the first place so now I think she is punishing me. There are only 2 uro-gyns in my insurance network and it is these 2 doctors. My urologist that I was seeing before told me I should see someone else because his knowlede of IC was limited and thought I could find someone to help me better. I am so upset right now. Sorry for this long post but once again I am so stressed with pain and getting up 7 times a night and having no sleep that I just don't know what to do.