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Hi Gals,
Well, I called another urogyne that is suppose to be knowledgable about IC. I got an appointment to see him on this coming Tuesday.
I just now have to decide if I want to get another instill tomorrow or not. I believe it did help me some as I have less frequency and had a couple days with less pain, but had an awful experience right after the instill. I still say I reacted to something in the instill that made my bladder swell and I could not pee afterwards and had worse pain for a whole day and half. I just did not like the fact that it swelled me and I could not pee. I mean it took a whole day and half to get my urine stream back to normal. I was able to pee after they cathed the stuff out , but not well at all. And the catheter caused me a great deal of pain. I still say I had a reaction.
Another reason I am getting another opinion is because I just did not like my doctors attitude at all. She basically told me that the instills are all that will help me other than doing a hydrodistention(which I wont do). and she said that if I do not do the instills, I will not get better and I will be in worse pain and bascially not to bother calling them as she has nothing else to offer me for pain. I thought that was an awful thing to say to me. I mean she is suppose to be a doctor who is suppose to help people, not give up on them without even trying all things possible first.
Also, I did not like that she would not work with me. I asked her to maybe leave out a couple of the meds in the cocktail since I know something caused me to have a reaction, but she would not budge. She only said she could cut the marcaine down a little. I even asked her to leave out the biocarbonate and she said no. She said that this is what works for people with IC.
I think everyone is different and we all are not going to react the same way. Her idea was that so what if I cant pee, just cath yourself, it is no big deal. Well, to me it is because it caused me great pain to be cathed. And her answer to that was that I have to go through pain to get better. Maybe that is true is some cases, but she should of at least tried to work with me. I mean just because some people do fine with her instills, well maybe I cant tolerate all those meds. But she is unwilling to change anything.
So now the bottom line is, I either go do another treatment and pray it does not mess me up worse than last time, or I dont go and wait and see the new doctor next Tuesday and see what he says. The only bad thing is that when I talked to my doctor, I mentioned that I had to think about it if I wanted to go through the instill again, and she responded that I cannot miss any of the instills or they wont work, that I have to do them consecutively once a week for 6 weeks straight for them to help me, that if I miss any, then it wont help. Gee, I thought they were used as rescue instills and are suppose to work fairly quickly.
Anyhow, thanks for listening. Any advice or info is greatly appreciated.
Jen
Well, I called another urogyne that is suppose to be knowledgable about IC. I got an appointment to see him on this coming Tuesday.
I just now have to decide if I want to get another instill tomorrow or not. I believe it did help me some as I have less frequency and had a couple days with less pain, but had an awful experience right after the instill. I still say I reacted to something in the instill that made my bladder swell and I could not pee afterwards and had worse pain for a whole day and half. I just did not like the fact that it swelled me and I could not pee. I mean it took a whole day and half to get my urine stream back to normal. I was able to pee after they cathed the stuff out , but not well at all. And the catheter caused me a great deal of pain. I still say I had a reaction.
Another reason I am getting another opinion is because I just did not like my doctors attitude at all. She basically told me that the instills are all that will help me other than doing a hydrodistention(which I wont do). and she said that if I do not do the instills, I will not get better and I will be in worse pain and bascially not to bother calling them as she has nothing else to offer me for pain. I thought that was an awful thing to say to me. I mean she is suppose to be a doctor who is suppose to help people, not give up on them without even trying all things possible first.
Also, I did not like that she would not work with me. I asked her to maybe leave out a couple of the meds in the cocktail since I know something caused me to have a reaction, but she would not budge. She only said she could cut the marcaine down a little. I even asked her to leave out the biocarbonate and she said no. She said that this is what works for people with IC.
I think everyone is different and we all are not going to react the same way. Her idea was that so what if I cant pee, just cath yourself, it is no big deal. Well, to me it is because it caused me great pain to be cathed. And her answer to that was that I have to go through pain to get better. Maybe that is true is some cases, but she should of at least tried to work with me. I mean just because some people do fine with her instills, well maybe I cant tolerate all those meds. But she is unwilling to change anything.
So now the bottom line is, I either go do another treatment and pray it does not mess me up worse than last time, or I dont go and wait and see the new doctor next Tuesday and see what he says. The only bad thing is that when I talked to my doctor, I mentioned that I had to think about it if I wanted to go through the instill again, and she responded that I cannot miss any of the instills or they wont work, that I have to do them consecutively once a week for 6 weeks straight for them to help me, that if I miss any, then it wont help. Gee, I thought they were used as rescue instills and are suppose to work fairly quickly.
Anyhow, thanks for listening. Any advice or info is greatly appreciated.
Jen
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