Dee74
10-30-2004, 02:27 AM
I can't say enough good words about her. She's the best doctor I've ever had in my life. I adore that woman!
I explained to her how my followup appt with my uro went. She was quite upset about it herself. And NOPE, they never faxed any of my test results to her like they said they would do Thursday. So she's going to call them herself Monday morning and request - or should I say DEMAND (her words) - the information.
She spent about 40 minutes with me discussing IC, feminine hygeine, sex, tampons, pads, fibromyalgia, and the medications the uro put me on (the elmiron, ditropan, and elavil). She advised me to start with the Elmiron first for a week. Just to see if I have any reaction to it, then start the Ditropan. That way if one of them don't agree with me, then I know which one is the culprit. Good idea huh? The uro's assistant didn't mention this at all.. grrr. I've taken the Elavil before so I know how my body reacts to it.
Now, you don't find many doctors who will discuss with you the treatment of a disease that they didn't diagnose themselves.. like I said, she's amazing and takes the time to talk to you and answer ANY questions that you have. She also likes to look things up on the internet that she doesn't have much experience with - she actually wrote down this website to pass along to her other patients with IC!!!
We discussed using soap to cleanse down below.. she recommends just plain water, but understands the need to feel clean. She said that ivory IS a bad soap to use (glad I asked). She recommends Dove (a couple others on here recommended that, woohoo!).
She doesn't know much about menstrual cups.. she'd heard of them, but has never had a patient mention using them. So, she's going to look them up on the internet herself :) She said that if we have problems with irritation by using regular pads, that there are other types you can buy that you wash.. I didn't ask questions about that since I already knew what she was talking about - the luna pads, or other types such as those.
Skipping periods IS something that she recommends to patients with IC! She says that it's totally safe and can be easily achieved with most BC pills (except the extremely low dose ones) by skipping the placebos. She's been doing this for years before the new pills came out for that purpose. So, she has started me on Yasmin (sp?). Once I've been on them for 3 cycles, she wants me to start skipping periods.
She said that the reason that we all tend to have more IC problems near our periods is because of hormones. They affect everything in that area. In a normal person, increased urination during your period is caused by these hormones (I'd noticed I peed more during this time before I had bladder issues). In someone with IC, the increase in hormones can cause us to flare. I didn't go into great detail with her since I'd already taken up so much of her time. But yes, it's very normal and to be expected.
She also FIRMLY believes that there is a connection between IC and all other chronic conditions.. maybe I didn't word that right, but I'll try to explain.
Alot of us have IC, Endometriosis, Fibro, IBS, Vulvodynia, etc (or any combination).. all at the same time. She truly believes that it is something in our system, or ONE ACTUAL DISEASE that we have that is causing us to be plagued with these diseases all at once. Possibly some sort of autoimmune disorder. She says that she sees it ALOT. She has many many patients with IC, endo, and Fibro, and she's just waiting for the day that some genius will figure out that it's all caused by one thing.
Interesting huh? I've been thinking alot about that myself.
Well, that's how my appointment went.. lots of great information as usual. If any of you are in the Buffalo, NY area, I'd be happy to give you her name via private message :)
I explained to her how my followup appt with my uro went. She was quite upset about it herself. And NOPE, they never faxed any of my test results to her like they said they would do Thursday. So she's going to call them herself Monday morning and request - or should I say DEMAND (her words) - the information.
She spent about 40 minutes with me discussing IC, feminine hygeine, sex, tampons, pads, fibromyalgia, and the medications the uro put me on (the elmiron, ditropan, and elavil). She advised me to start with the Elmiron first for a week. Just to see if I have any reaction to it, then start the Ditropan. That way if one of them don't agree with me, then I know which one is the culprit. Good idea huh? The uro's assistant didn't mention this at all.. grrr. I've taken the Elavil before so I know how my body reacts to it.
Now, you don't find many doctors who will discuss with you the treatment of a disease that they didn't diagnose themselves.. like I said, she's amazing and takes the time to talk to you and answer ANY questions that you have. She also likes to look things up on the internet that she doesn't have much experience with - she actually wrote down this website to pass along to her other patients with IC!!!
We discussed using soap to cleanse down below.. she recommends just plain water, but understands the need to feel clean. She said that ivory IS a bad soap to use (glad I asked). She recommends Dove (a couple others on here recommended that, woohoo!).
She doesn't know much about menstrual cups.. she'd heard of them, but has never had a patient mention using them. So, she's going to look them up on the internet herself :) She said that if we have problems with irritation by using regular pads, that there are other types you can buy that you wash.. I didn't ask questions about that since I already knew what she was talking about - the luna pads, or other types such as those.
Skipping periods IS something that she recommends to patients with IC! She says that it's totally safe and can be easily achieved with most BC pills (except the extremely low dose ones) by skipping the placebos. She's been doing this for years before the new pills came out for that purpose. So, she has started me on Yasmin (sp?). Once I've been on them for 3 cycles, she wants me to start skipping periods.
She said that the reason that we all tend to have more IC problems near our periods is because of hormones. They affect everything in that area. In a normal person, increased urination during your period is caused by these hormones (I'd noticed I peed more during this time before I had bladder issues). In someone with IC, the increase in hormones can cause us to flare. I didn't go into great detail with her since I'd already taken up so much of her time. But yes, it's very normal and to be expected.
She also FIRMLY believes that there is a connection between IC and all other chronic conditions.. maybe I didn't word that right, but I'll try to explain.
Alot of us have IC, Endometriosis, Fibro, IBS, Vulvodynia, etc (or any combination).. all at the same time. She truly believes that it is something in our system, or ONE ACTUAL DISEASE that we have that is causing us to be plagued with these diseases all at once. Possibly some sort of autoimmune disorder. She says that she sees it ALOT. She has many many patients with IC, endo, and Fibro, and she's just waiting for the day that some genius will figure out that it's all caused by one thing.
Interesting huh? I've been thinking alot about that myself.
Well, that's how my appointment went.. lots of great information as usual. If any of you are in the Buffalo, NY area, I'd be happy to give you her name via private message :)