Venting about doctors

[Lisell]

HI THere

I wasnt sure where to put this thread there should be a topic just for venting about these doctors. Where do I start? I called the urologist today to get an appointment unfortunately I wont be abke to see the doctor for several months BUT I can see the PA on July 20. Of course I took it. I am frustrated because I feel that I am more educated at this point about the different treatments. The doctors seem only concerned about the methods they use and dismiss or do not research others. I am tired of having to explain what IC is every time I need to get tested by my primary doctor for a yeast infection. My urologist doesnt deal with these and will not prescribe diflucan. My primary doctor doesnt believe that monistat can irritate the bladder. I also am frustrated with the fact that I dont know if some pains are my bladder or my vagina. THe urologist doesnt deal with this and the gynocologists dont know enough about IC. I had a Elmiron instill today and I hurt afterward. Unfortnatley I have ithiness and burning. I came out negative for yeast but my period is due soon. I wish I knew what was going on?

THanks for listening!! Lisa

[Dixiefireball]

Hi Lisa,
my uro will give me something for a yeast infection (thank God.), but i do know all Dr's are not a like. I guess the reason he does is because he is normally the one who finds it in my urine.

this may help your Dr's go to the patient handbook, look threw threads, and the guest meeting we have had, make yourself a list of things you want your Dr's to know about IC and you. Print those out and ask your Dr's to please take a look at it, and place it in your chart. make sure they know the information you are giving them (from the patient handbook and the guest meeting in our chat room from Dr's are from Dr's or has been researched.)
If they will read the information you gave them then they may better understand IC so they can treat you.
It wouldn't hurt to give them some links to the sites you are getting the information from. so they can look if they wish too..

before i had my hy. I would get the most God awful pain the week before and the week of. often I would be bedridden the pain got to be so bad. My problem was I was getting real UTI's that refused to go away until after my cycle had ran. I had a hy. because I was boarder line cancer not for IC, but honestly it has helped my IC in some ways.

since that elimron installment hurt you today. it may help if you wash yourself out by drinking tons of water, maybe a hot sit bath, resting, taking pain medicine if you have any. it may also help if you have another treatment if you to ask to use only latex free caths. for some reason even if you don't have a latex allergy they seem to help. It may also help if you ask your Dr. to add (if he hasn't already) some type of numbing medicine like marcaine, or lidocaine. just a few tips off the top of my head.

oh b.t.w I notice you are kind of new to the group. We had a just venting board, but it has been shut down for the time being. Hopefully it will be open back up later down the line. I don't see a problem with where you posted.

[ihurttoo]

I totally understand! It IS very frustrating!! Dixie, that would be a great idea, if drs actually read what we gave them, but most drs blow off anything if they hear it came from the internet, saying that there is alot of misinformation on there. (Even when it comes from other drs.) They frequently warn patients who research their conditon, that they are spending too much time "dwelling on their disease". Sometimes, if you come across a kind one, he may tell you he will read it later, but never does, which is apparent the next time you see him and ask him questions about the material you left for him. Then he justifys this by saying that he is just too busy to read all the material patients leave for him, that on average he gets given 3 books a week by patients, and enough print outs to fill 3 binders, and that most of it is inaccurate, and he just doesnt have the kind of time it would take to read what everyone would like him to read.

In short, I would have no qualms at all educating someone who wants to learn, but you cant teach the unwilling. And 99.99% of them are unwilling. The other .01 %, are in such high demand, they are booked up for 6-8 months, and that is if they are taking on new patients at all!

Plus, some drs label patients that constantly bring in written material for them to read as "Difficult" and some even consider them to be hypochondriacs, just searching for a new disease to have, rather than someone who is just so desparate for medical help, that having been failed by the medical profession, have had to become their own dr, and their own medical researcher.

[asilva]

Amy,
AMEN!! You are right on, girl!! Sometimes you just have to keep shopping around until you find one who will listen to you. In the book my gyn wrote he says that his education began when he really started listening to his patients. How rare!!

[walnut]

I live in pittsburgh PA and cannot find a urologist to tret me. I had one who treatmet me with DMSO fo rseveral years with great succsess and when I had a problem with one instill stopped them without ever discussing it with me. After that I have searched for several years. The two who I found who said they would "treat" me refused to diagnos I.C. and are totally disinterested in me or my symtpoms. THey treat me almost with disdain. ONe provided pelvic floor therapy andinsisted that was my onlly problem. when the therapsit wrote her and told me to calll as followup it took tow months and me finally just making an appointment fo rthem to get back to me. THey left a message that I should keep th eappointment but that the coctor had nothig further ot offer me to help. THe other doctor is so bad she should not be practicing. I made an appointment with the DMSO one agin which took 3 months to get, hoping to talk her into doing th einstills agian or perhaps instead to try one of these rescue ones. I have no idea if she wil hlp me. I did after 10 years of this find a wonderful urologist here who treats I.C. but he too only does one specific treatment and I have tried it and it does not help me. But he and his partner spoke with me honestly and openly and fo rthe first time I did not feel completely alone. They saw me in the hospoital too when the ditropan made me so ill I was dehydrated and in th ER. I guess from reading this site there are urologists out there who actually treat their patients with some understanding of the disease and interest noit disdain. I am seriouly considering moving form pittsburgh PA just to have a doctor to treatme. I alos suffer from severe depression that I have hd from age 15 and can no longer take antidepresssants because of the I.C.

JUst venting but if anyone has a suggestion about where to begin searching for a urologist in a different part of the Country I am open to it.

Most of my life I have been trying to live life and not living it. With the constant flares I have had int eh past three years and no treatment to speak of and being so very alone in it all I have no hope of even trying to live life anymore. Where does one find quality of life?

Form someone who used to bounce back after the worst of times and has no mental or physical energy left to even try to anymore.

Hoping one day to be the person I once was who got my greatest joy and sense of self form helping others and forgetting aabout myself.

[hoping4acure]

Lisa,

Are you going into Boston looking for a URO? I can give you a name of a pratice that is fully educated with IC. My URO retired and she handed her practice over to these two doctors. I am going to Brockton Urology. There are 4 doctors there--two of which I see. Both the ones I see know a whole lot about IC.

PM if you want.


-Louann

:)

[Lisell]

LouAnn,

Boston is a bit far. I go to a doctor in springfield that is pretty good. I have been doing the elmiron instills in the office and they have been really good about fitting me in whenever I need to. Getting an appointment with the dfoctor is a different story. THanks you though!
Lisa

[Sarojini]

Hi there :)

I'm originally from Gardner, MA -- right there along Route 2 ;)

Anyway, have you asked, or would you be willing, to learn to do your instillations at home yourself? Many of us do this, and while it sounds terrifying and impossible to learn, it is surprisingly easy -- you'd need a prescription for all of the ingredients as well as syringes and catheters, and a good pharmacy (often NOT Walgreens or CVS -- one of the "mom-and-pop" kind that compounds meds is best). Then, someone at your uro's office can show you what to do step by step, including lessons in sterile technique so you don't accidentally give yourself an infection.

For me, this has reduced my need for uro visits by a LOT -- my uro is 45 minutes away, so it would be horrid if I had to drive that far when I needed a rescue instill!! I find being able to help myself at home is not only convenient and useful, but EMPOWERING as well -- "Who needs the doctor? Who needs to pay an office copay again? Not me! (At least not this time....)" LOL :lmao:

As for Diflucan, can you get a prescription that contains more than one refill from your gyno? My uro prescribes mine this way so it IS possible... your doc needs to get on the ball!

:grouphug: