futurehope Posted March 2, 2006 Report Share Posted March 2, 2006 Just got back from a second visit to my primary physician for what I thought was a reoccurring urinary tract infection. Nope, it's not. It's probably my interstitial cystitis kicking in again.It's what she said that I want to share with you all.She looked at all the doctors notes from the specialists I've seen. She realized that I've had this bladder irritation thing going off and on for years and she said something like:"You probably have something wrong with you that is causing all your problems that the medical community really doesn't understand yet. They probably won't fully understand it in your lifetime. Maybe if you give your body to science.... " She was kidding at this point. She's a sweet understanding doctor.Do you know how tough it is to KNOW that there is something wrong with you, but that there's no way to fix it??I'm just ranting and enjoying it. Forgive me. All these pains and feeling awful for years. Welcome to my life. I'm trying to adjust. Feeling poorly is not fun.She also said that she appreciates having me as a patient because I'm knowledgeable and informed about medical issues. It makes her job easier.I just wish my life were easier. I'm sick of feeling sick.Okay. Enough. Thanks for listening, uh, reading. Quote Link to comment Share on other sites More sharing options...
Wufflebear Posted March 2, 2006 Report Share Posted March 2, 2006 Your PCP sounds very nice! I heard that comment about how what I had was just not discovered yet as a kid by a nice doc, when the rest were brushing me off as a whacko.It is tough, and frustrating and scary sometimes... I know. Quote Link to comment Share on other sites More sharing options...
michiganjan Posted March 2, 2006 Report Share Posted March 2, 2006 I think that doctor is exactly right. I have interstitial cystitis symptoms too, as well as diabetes insiidus symptoms and irritible bowel and . . . . I won't list everything. Something is causing this and it is not something fatal, so the research money does not go there. But something is wrong that is not yet understood by the medical community. Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted March 2, 2006 Report Share Posted March 2, 2006 I have symptoms of interstitial cystitis but don't want another dx so I haven't seen a doctor about it. It is very scary knowing something is wrong with your body and no one knows what to do. Your not alone on this.Dayna Quote Link to comment Share on other sites More sharing options...
gwen Posted March 2, 2006 Report Share Posted March 2, 2006 my dr. is a sweetie as well and has said same thing!! She really keeps me going. I do believe "we" the dysautonomics will solve this. I went to store today and a friend said she kenw 5 mutual friends who'd passed out and of course all tests were great. They don't know what to do. This isn't that rare, Its under diagnosed because of apathy and if there was interest the money would be there. I told my husband if I could win one of those super power balls I would spend it all on a research facility only for this and training future Dr. Grubbs!:-) Quote Link to comment Share on other sites More sharing options...
AJVDK Posted March 2, 2006 Report Share Posted March 2, 2006 Sounds like you got a very nice doctor. I understand where you are coming from. I know there somthing wong, but it always seems like the doctors and putting a bandaid on the problem and hoping it will cure the problem. Then everytime it doesn't work everyone, even the doctor doesn't understand what to do next. I am coming with the terms that this is who I am, this is how I feel. If I get better that will be great and if I don't I can live the best life I can. But is been hard to stay postive.Amy Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 2, 2006 Author Report Share Posted March 2, 2006 Gracie,What a wonderful idea! If we had the money, we could create a research facility dedicated to ANS ailments.You never know. Maybe you could win powerball!!I'd expect you to keep some for yourself, of course. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 2, 2006 Report Share Posted March 2, 2006 I told my doctor this and he totally agreed, but it drives him crazy. He wants to know everything and fix everything. But he is so sympathetic. I can't even count all the things wrong with me. I think it would be easier to say what's right!But maybe more doctors are going to start coming around. We can always hope. It seems like I am hearing more (not enough, but more) stories of positive experiences with doctors.Will hope that continues. At some point, they will not be able to ignore us anymore...morgan Quote Link to comment Share on other sites More sharing options...
Foxyblue Posted March 3, 2006 Report Share Posted March 3, 2006 HI, I have what I think are bladder infections over and over again every month but they keep coming up negative. I have pressure, accidents (lovely) and having to go a lot. Is that what you have? And also what is the interstisal cystatis ...Im sure I spelled that wrong..B Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 3, 2006 Author Report Share Posted March 3, 2006 Bribri,I don't have the accidents part, but in the past I've had pressure, pain, burning, and sometimes a kind of mild referred-type pain over my kidney area (who knows what this is?) and, believe it or not, I don't feel well (wish I knew where this one came from?).The only real way for a urologist to know what is wrong is to go inside and look in your bladder. And I'm not convinced that all of them are aware of the interstitial cystitis.Have you been to a urologist? Which doctor treated you every month? Would they give you antibiotics even without the bacteria?Believe me, I know how difficult this can be for you. Quote Link to comment Share on other sites More sharing options...
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