i dont want to do this any more

[dverba]

well i went to my first uro appt yesterday. it's like being on an out of control rollercoaster. first he tells me he does not agree that i have ic because i never had symptoms years prior. He said my pst test does not prove ic. so i get my hopes up that i have some thing curable..then he caths me, checks my urine and says my symptoms do point to ic. i got upset and started crying and he says iam getting worked up for nothing. he said he has hundreds of ic patients that just get a flare around thanksgiving and christmas and thats as bad as it gets.

He is planning a cysto (which i have heard many of you talk about). Where he puts me to sleep and stretches my bladder? He put me on pyridium which i think is helping..I had to plead for pain med. He said he would only give me one script. I feel beaten up! I want to take 2 pain pills and sleep for days, have to make a paycheck so can't do that. He told me everything i have read on this site is over exagerated. i wanted to get up and leave but where would i go? i know i will get the care i need because i will insist on it but why does it have to be such a battle? :cussing:

[Claredale]

Oh my word!!!! Find another doctor and fast!!!! Ic patients just flare around Thanksgiving and Christmas and we exagerate on this site...RUN LIKE THE WIND! He doesn't deserve another penny of your money! You definitely don't have a compassionate doctor much less one that I would allow to give me any of his opinions. I have been lucky and had doctors that know IC, I talked to my doctor last week about all the postings I read on here everyday about doctors that are just plain stupid and don't seem to even care about patients with IC. He said that he has been practicing for a long time and the word on IC is getting out more and more all the time. He said that alot of uro/gynos are going to seminars all the time, he had just returned from one a couple of months ago.

What does he mean by symptoms years prior? How long have you been experiencing symptoms? We all know that the PST doesn't prove IC, but it is a huge indicator. If I were you, I would start making calls and see if their is a doctor that specializes in IC and make an appt. I wouldn't give him the chance to do the cysto. Start fresh with a doctor that cares...please! I know they are out there. There have been plenty of times that I have cried in the nearly 20 years of dealing with IC. I have been to 3 different uros during my experience with IC. The first one wasn't much help. I just went to him since that is who my husband went to, and I was just trying to figure out what was wrong with me. When I cried, I know if my doctor ever said I was making more out of it than it was, he would not be happy with what I have to say. I am a very patient person and feel that I am reasonable, but I take a strong position on what my body is telling me and I am very pro-active with my care. Back when my symptoms were at their worst, I was always fortunate to be able to have my husband, mom or even a friend with me to help keep me focused, plus I always wrote everything down, even what the doctor says during the appointment so that I can research it.

[Berkshire Road]

It shouldn't have to be a battle. I would seriously suggest that you start looking for a new uro, right now. Why would he look at your urine and say you don't have IC? That's not diagnostic. And trust me, no one on this site is exaggerating how bad IC can be. Many of us have had substantial improvement with treatment, but IC can be disabling at its worst. It really doesn't sound like he knows much about the condition, or else maybe he's written it off as some kind of female hysteria.

My advice, seriously, would be to get yourself out of there and into a more compassionate practice.

[dverba]

You are all right. I needed to hear this. I will make some calls today and see who I can find. I wish I knew an ICer in my area of N.C. Thats alright, at least I'll be here for the next person.

Thanks more than you know!!!

[ICNDonna]

Please don't throw things at me, but I'd like to explain why I think what your doctor was saying may be partially right.

One thing we all need to remember is that MOST IC patients do find treatment options that work well for them --- and because they feel good, they don't really need the support of the boards so they come here only rarely, if at all. A few of us hang out here because we remember how miserable we were and how alone it feels when you don't have encouragement from others with the same diagnosis.

And for every individual posting here because they are in pain, there are literally hundreds out there who have IC and have it under control and are busy getting on with their lives.

Only a very tiny percentage of ICers get worse as time goes by. My IC was diagnosed almost 33 years ago and if anything I do better now than I did then. It took my urologist almost six months to diagnose me because at that time it was felt that IC was a "rare" disease. I continued to see him because I could see that he wanted to help. I ended up being treated by him until he retired two years ago. I now see one of his partners, but I most definitely miss him.

Donna

[GriffsMommy]

I agree with both Donna and the other ladies. IC can be treated and managed pretty well with meds and most people do feel pretty good after they find the right treatment. However, if you are feeling really really bad at this point you don't need a Dr telling you that it really isn't that bad because at this point it does feel really that bad to you and then some. I am one of the few who have not seemed to respond to treatment yet but my new dr explained that I had more problems that I didn't even know about and they all need to be treated to feel better. It does take some time and patience sometimes to find a good dr that will listen and help you but once you do it is all worth it. Take my word for it, I just saw my new dr a week ago and even though I still don't feel good I have hope for the first time in awhile. I hope you get the answers you are looking for soon. :grouphug:

[ihurttoo]

I agree with EVERYBODY!!! But, I wanna say that Donna, especially has some particularly valuable points. Even though we have 30,000 members, there are over 1,000,000 IC patients. We all know that of those, SURELY several of those have internet access and would have found us by now if they needed us, right? Also, if you look on here, of the 30,000 registered here, it is always the same "regulars" here that post all the time, that are the ones hurting and suffering day in and day out, mostly b/c we are the ones who are home all day b/c we are disabled, (or maybe retired like Donna, or else it is single people that have free time to post). That constitutes ALOT of our members right there! So, even though there are LOTS of dramatic posts here, if you REALLY look, it is either frightened newbies, or it is the same oldies that are constantly in pain. But, it is rarely anyone that is in-between. Does that make sense? I think that is what your Dr. was saying and what Donna was saying too! NOT that this site is inaccurate or overly theatrical or anything, that is where your Dr. misrepresented things just b/c he personally misunderstood, or b/c he was trying to downplay your fears and didnt know how to do it in language you could relate to about our site.

Hope this helps!

Hugs,
Amy

[dverba]

I needed to hear that! I did think this was the way it would always be. You do not realize how much better that makes me feel! I think I will take a deep breath and see this through to the next stage. Pain can cause fear to take over your life. I do not want to be one of those people. Thanks Donna and to all who reply every day...What a blessing you all are. I may not always like what I hear but I will trust in those who have gone through this and found a happy life. Keep the advise coming, please.
DeAnna

[sickofmybladder]

Hi diverba -

I am in NC - but not close to you - (I live east of Raleigh) I'm so sorry you are having a hard time - but have faith - be willing to try various treatments and I hope you feel better soon. I was diagnosed in August and already feel "better" than I did (not perfect or pain fee but better) --if you are not happy with your doctor - then you definately should look for another - the most important part is that you are comfortable with your provider.

Good luck and I hope to hear that you are doing better soon.

[leelee88]

Deanna,
You are right pain has a way of taking over our lives, But things will get better. I have to agree with all the others..And like Amy said we have either newbys here or oldies and not to many in betweens and the few in betweens we do have like me lol(:pray:I stay a in between) ...Just stick around to help and show support and let people know that there is life after IC and try to give people hope..

I was Dx a year ago and my URO said that my bladder looked the worse of any of his patience, but I sit here today a year later and I am almost pain free.. Yes I do have some minor flares and a little pain, but compared to where I was a year ago, I feel I have made a major recovery and like I said I am a severe IC patient..So there is hope.

I am glad you are feeling a little better, but if you start feeling down or need to vent just remember we are all here for you..((((hugs))))

[rockione23]

Something people tend to forget is that IC likes to run in packs with other random issue, pelvic floor dysfunction, IBS, endo vular vestibulitis and the like (yea i butchered the spelling on that) are occuring more frequently together (or maybe people are just paying attention). I spent 3 years getting treated for the pain caused by my enmdometriosis and then discovered I had IC (after having menopause chemically induced) and WHAM - the majority of my pain was coming from the IC. DO NOT let a doctor do what he is doing to you, i spent years letting them make me think I was crazy. Look at everything and a find a doctor that actually knows what is going on and is up to date on IC. I wish you luck and hope that find a doctor who treats you with the concern and respect that each of us deserve.

BTW
I'm in pain nearly everyday - you're docs a Quack - if flares only happen around the holidays then Christmas must last all year....

[Claredale]

I am not throwing things at your Donna, but to be told that people just flare during Thanksgiving and Christmas is ridiculous. I would turn and run. I haven't had IC as long as you, but I have had it for most of my adult life. It started when I was a young adult and thought doctors knew everything. Thanksfully, my mom was a nurse. She is retired now. She went with me to my 2nd appointment after my 1st uro said that I was young and having 2 small children, I was probably just under alot of stress. He had no idea what was wrong with me, and gave me an anti-depressant (he even called them "happy pills" which sent me over the edge). I realize that anti-depressants are used on people with IC, but he made me feel it was all in my head. All I knew was that I was going to the bathroom constantly and then I couldn't go and to hear that it was in my head. My mom definitely gave him a piece of her mind, especially with the dosage he had given me. It was stronger than my brother was taking and he had been on them a long time. Luckily my GP sent me to another Uro and he mentioned the word cystitus, so we at least started with that. My husband looked it up on the internet and we finally came to Interstitial Cystitus. I printed off the info from the ICA and took it to my next appt. I started receiving the right tests to start my diagnosis and went from there.

[dreamy]

This is a real nightmare for so many. Its just rediculous. Where is this IC coming from! I am so frustrated with it and figuring out this puzzle. Like Ive said before I think Doctors should let us try anything to get better as long as it is within reason. I mean whats the big deal?!!!! Hope you feel better soon.

[Dora]

I agree with everyone thats said FIND A NEW DR FAST! I do know how hard it is to go from Dr to Dr until you find a careing one who cares about you and not the money. They are out there! With my IC and ureter problems I was lucky and have a wonderfull uro, But I went through alot of Drs dealing with kidney stones and My Ureter pain. I just lucked out one day when I was hurting and My kidney stone Dr was in africa and his partner went into remove my stone and saw the IC and began puting two and two together. He found my defective Ureter and hes been helping me ever sence last year. Just keep going until you find one who listens.
Hugs
Dora

[Julie B]

Donna’s message is a good one. People do get better. 10 years ago my friend suggested that I may have IC when I was suffering from “recurrent UTI’s.” She had IC. I just ran into her about 6 months ago and she hasn’t had to see her urologist for nearly 8 years now. She is doing so well, she doesn’t even think about it. A lot of the rest of us are the same way.

As for finding a new urologist, I think we have to remember that not every urologist is an IC expert. Just like some orthopedic docs specialize in knees and others in backs, IC requires a fairly specialized doctor who has developed intuition about their patients and possible treatments over time. I suggest that you look at the list here on ICN for doctors that others have seen in your area, whom they believe knows their IC-stuff.:)

Hang in there………I wish I could give you a hug. It is hard to stay centered sometimes with this……..we all understand that.

Julie

[Claredale]

That's my doctor, he let's me try anything (within reason). It especially helps to feel somewhat in control. I don't like to hear when people post that they are afraid to suggest meds. I guess since my doctor knows that I research the meds and treatments so much, he asks me what I think may be working and what isn't and we make the changes necessary. When all this started, I don't think I was afraid to ask, I just didn't know what to ask. With this site and others, I have made such a point to educate myself.

My dog is nosing me to get off the computer. Both hands and she is grunting now, so I better go. She knows what she wants and isn't afraid to ask either! LOL!

Everyone have a good night!

Tracey

[BBB]

Good Night Tracey!

I have been considering Donna's point and yes I do think she has a good one. Maybe after so many years of not being heard people come and post here and finally someone does not only hear them, but also understands them.

What I take issue with is how the Doctor said it. How dismissive he was. Of course it is through the perception of this patient but it sounds all too familar to be "dramatic"! I have heard it, we here it over and over again. I don't think she sounds at all hysterical, actually quite the opposite. Therefore I say Run Away!!

I have had IC since I was 12 and went through several doctors. I now drive over 200 miles to Denver to see my Doctor. He too lets me try different approaches and medications. I like that he lets me self direct my care. Now don't get me wrong, he is one of the leading IC doctors in the nation and by no means a pushover. He also tells me No....but it is the way he says it.

Honey, I would try a new doctor.

[dverba]

I love you guys,you are all so wonderful! I can't find the list on this site to locate dr's. Where is it?

[Claredale]

Go to patient handbook section and then under the heading "Living with IC".

[dverba]

FOUND DR.EVENS IN GREENSBORO!!!:woohoo:HE IS A SPECIALIST IN IC. HE HAS WRITTEN MANY ARTICLES HERE ON THE ICN. I HAVE AN APPT. 12/7. I FEEL LIKE IT IS CHRISTMAS. I WISH I COULD KISS YOU ALL:bow:

[mom_in_ma]

Truth be told, when I was in remission and feeling good for two years, I was rarely here. An unfortunate series of events (ha, yeah, pretty much just like the book series) sent me back into a flare that I'm trying to get control off. But, I'm confident that I'll find a way to manage this disease again. Although, I'd love for my remission to come back as my Christmas present this year. We can only wish, huh? But, it's true, I've seen many folks come and go over the years and many left just because they felt better - including a few moderators!

Good luck with your new doc.

[Agape]

I just have to add my "two bits". First, I am one who rarely posts anymore. When I was first dx in August, this site was part of my day everyday, but now that I am doing so much better, I don't post or check it everyday. It was a big help to me when needed the most, so a Huge Thankyou to all who contribute to this forum. Next, I want to say that my dr and myself believe my IC is worsened by stress. Therefore, many times (even before I knew I had IC), I had flares during the holidays. It's just something very stressful about trying to get my family together and all be happy and satisfied. I never really accomplish that and so I have stress which leads to IC symptoms. Maybe your dr has seen women like me. I now take Zoloft to help my moods. I don't have a very compassionate dr, but he is knowledgeable where IC is concerned, so I guess you can't have it all. I will just be grateful for what I have. I wish you the best in your hunt for a dr. By the way, I live in Georgia.

[boukie]

I think you need to find a different dr. My twin sister was going to a uro who was telling her to drink cranberry juice and would only give her vesicare. She changed dr's and now she's improved 100%. I hope you feel better. Ask for Elmiron and Vesicare, take prelief all these have helped me. I still get an occassional flare.

[bullcreek88]

If you are telling him how much pain you are having and he is reluctant to give you anything to help your pain you have the right to be angry, I've been there done that in the emergency room once. they gave me medication to treat a urinary tract infection instead and I told them how intense the pain was and could they please give me something so I wasn't so miserable. They told me the antibiotics would help more than pain meds would so I didn't need any. this was before I knew I had ic. The nurse suggested drinking plenty of cranberry juice instead. Looking back at some of the Doctor's I've dealt with I just wish I would have known then what I know now. I still have chronic pain, if you look at my list below you can see I practically had most of my insides removed. Find a doctor who truly wants to help you and doesn't think it is all in your head. It is just inflamed scar tissue bothering you is what they would tell me. I kept on searching for a specialist that would really listen. Eventually you will find one. I had to go through a good number of doctors until one took the time to really listen and then I was tested for IC. Since then I have stuck to the IC diet and take Elmiron. I take a number of other things to, I am diagnosed with major depressive disorder with anxiety. Gee, I wonder why, having people tell me it it all in my head, then just trying to feel well enough to keep my job (which I lost but don't mind now) I realized I just keep pushing myself too hard and if I don't give my body a break I am never going to feel good. I filed for unemployment and have a disability case pending with social security. Anyways, sorry for the extremely long story but I was leading up to this, If you know something is wrong and you don't feel right, get help, if they don't listen go elsewhere. But don't start believing other people's bs, you know how you should feel better than any doctor, relative, or spouse. Put yourself first and don't give up. Keep trying, keep you faith, and know that tomorrow is another day, if you feel too bad to do something, learn how to say no I don't feel up to that today. That was one of my hardest things I had to learn how to do. And as for you doctor questioning the credibility of this site, he has no right to, this has been one of my greatest tools, the IC cookbook and reading a good amount of stories how other people have dealt with their IC (by the way mine is constant, if I eat the wrong thing I am going to be in great pain). I hope this letter gives you a little bit of encouragement. good luck with every thing and I truly hope you find a more compassionate Doctor. Wishing you the best, Patty

[Charisse]

I was diagnosed with IC this past spring and I was posting here a lot when my symptoms were so bad. I can't thank this group enough for all the support although I wish this thread would have been started back when I was first diagnosed. I was in so much pain, I just had no hope. But now I'm doing A LOT better. I have come to accept that I'll have to manage the IC and think about it daily but I pray I never go back to that painful stage I was in before being diagnosed. It is hell but please know there is hope! I never thought I'd get better but I have been so much better.

[HistoryKat]

FOUND DR.EVENS IN GREENSBORO!!!:woohoo:HE IS A SPECIALIST IN IC. HE HAS WRITTEN MANY ARTICLES HERE ON THE ICN. I HAVE AN APPT. 12/7. I FEEL LIKE IT IS CHRISTMAS. I WISH I COULD KISS YOU ALL:bow:

oh GOOD! Please do let us know what happens ... I know how good I felt just finding the Doctor who knew what was going on and could help. I even sent him a Thank You card ! LOL