interesting experience today

[megancolleen]

I was fortunate enough to be invited by my amazing doctor to talk one-on-one with one of the leading specialists in IC today. It was an interesting experience, and I feel grateful for the opportunity, but it was somewhat bittersweet, in that afterward I found myself disagreeing with some of the things this expert believes...such as that IC is ALWAYS progressive, that I WILL be worse in 20 years, that Elmiron is the only way, among other things.

I found myself thinking: This person is so well-renowned, well-respected, and has so many experience; why shouldn't I believe whatever they tell me? But some of this information was so against my own experience that I just...couldn't. And I felt unsettled by the fact that everything this person said was given to me as if it were absolute fact, when they were really only theories. I am very skeptical when a doctor believes that their way is the only way. I personally believe that open-mindedness is key in pursuing new treatments and new information about IC. I

This is a problem I've encountered before on my IC journey. While I want to give doctors my respect and trust, I can't ignore my own research and my knowledge of my own body. When a doctor tells me something that feels fundamentally wrong to me, it puts me in a very difficult position emotionally. I wish, in a way, that I could just say, "Do what you will with me, I trust you completely." But I am simply too stubborn for that.

I've found that there are doctors who allow you to maintain some control over your own body and what happens to it, and there are doctors who want you to hand over the reigns to them completely. Luckily I have found a wonderful doctor who is in the former category.

I wish I could tell you everything I talked about with this expert, but I feel weird doing so in a public forum. All in all, it was an interesting and valuable experience, and it certainly made me think.

[Kara29]

They are hard to find but it's great when you find a doctor that you can respect and one that also respects you and lets you be a part of your health journey. I have been finding that for myself, I've been working better with younger doctors.

That feeling you have inside is a really good thing to go by.

Kara

[lan]

megancolleen - Thank you for sharing you interesting experience. I understand your frustration. It seems that not even the IC specialists agree when it comes to IC treatments and symptoms. I saw a very well known IC specialist at the University of Pennsyvania Hospital and he did not seem to have much faith in Elmiron. When I asked him about Elmrion, he said that he did not recomend it for me because it takes so long to work and only helps about 30 or 40 percent of the people. He also said that it is possible that I could feel better after a year or so (good enough to go off medication). He said "Sometimes people get better. We don't know why." Since the IC specialists seem to have different opinions, I think you are very smart to rely on your own research and body. I hope you are feeling well. Linda

[mom_in_ma]

You are very fortunate to have found a good doctor! I completely understand your discomfort with that conversation....so much is stated as fact when so little is really known about IC.

By the way, I used to live in the Pacific Northwest and will always miss it. I adored the Olympia farmer's market. When my son was little, one of the fruit vendors would give him a free apple during our visits. It was just such a great place to hang out on weekends. I hope it's still thriving.

[megancolleen]

Actually, Mom-In-Ma, I moved to Los Angeles last year, so I'm right there with you in missing Olympia! I loved the Oly farmer's market too. I haven't been able to find another farmer's market as special as that one. The Northwest is such a beautiful region, isn't it? I would love to move back someday.

[Briza]

\This is a problem I've encountered before on my IC journey. While I want to give doctors my respect and trust, I can't ignore my own research and my knowledge of my own body. When a doctor tells me something that feels fundamentally wrong to me, it puts me in a very difficult position emotionally. I wish, in a way, that I could just say, "Do what you will with me, I trust you completely." But I am simply too stubborn for that.
.

Thank you for sharing this. I feel the same. I am lucky, too, to have found a good dr, my gyn, who lets me take part in my treatment and listens to me, regarding what I have learned on my own or why I think a particular treatment may help me and why I choose to avoid other treatments. I am also very stubborn...sometimes it causes problems with other doctors, but I just can't put everything in their hands when I know different or disagree with what they want to do.
Case in point: I was considering trying rescue instills, and though my gyn is willing to learn how to do them and then teach me how to do them at home, I started thinking maybe I do need to find a new urologist who is experienced in this first, just in case something happens....whenever, whatever, with the instills. I called the 4 "cities" within a hundred mile radius of where I live that have hospitals, med centers, urologists...I called EVERY urologist that was in or out of my insurance network, and NOT ONE had ever heard of a rescue instill, even when I explained the meds that are used and why they are used. They only do DMSO instills, which though I know have helped some, this is just something I do not want to do. I may have to look farther for a urologist who knows more about IC, the closest will probably be a 3 hour drive, but I decided, for myself anyway, that I do not want to be the one who has the burden of always educating my doctor, only to be dismissed because they haven't educated themselves on IC. If they know even half as much as I do, then I would be happy.

[ads]

Linda,
It is impressive what your doctor said about Elmiron because it is true. Many doctors do not realize it. Elmiron is a drug for IC so typically prescribed, but the percentage of success is something to consider. You have a lot of good docs in Philly.

Best wishes,
ads

megancolleen - Thank you for sharing you interesting experience. I understand your frustration. It seems that not even the IC specialists agree when it comes to IC treatments and symptoms. I saw a very well known IC specialist at the University of Pennsyvania Hospital and he did not seem to have much faith in Elmiron. When I asked him about Elmrion, he said that he did not recomend it for me because it takes so long to work and only helps about 30 or 40 percent of the people. He also said that it is possible that I could feel better after a year or so (good enough to go off medication). He said "Sometimes people get better. We don't know why." Since the IC specialists seem to have different opinions, I think you are very smart to rely on your own research and body. I hope you are feeling well. Linda