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Meeting with Urologist who misdiagnosed me
This afternoon, I am meeting with one of the urologists who misdiagnosed me. I really think if I had been diagnosed sooner, I would not be as sick as I am now. I don't know what to expect to come out of this meeting, but I really feel like I need to tell him how he screwed up my life. This doctor did the hydrodistention with anesthia, saw the bleeding and still said I did not have IC. Wish me Luck!
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carly -
Hi Carly, wishing you lots of luck in your meeting, prayers going along with it as well. Let us know how you get on, hugs and well wishes, Iris. hi grouphugToday and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time. -
Hi Carly, I hope that your meeting went well and that you're feeling good about your meeting (you may very well have helped the next IC patient who comes his way). Best wishes, little bearComment
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Hi! I hope your meeting went well! I think it's great that you are standing up for yourself and making your concerns known. That's a tough thing to do, but important. Way to go!
I hope that more and more doctors and uros will be come aware that IC is real. In time, anything is possible.
Best wishes!
VeronicaComment
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Hi Carly,
You go girl!!!! It is about time that doctors and urologists realize wht IC is and stop ignoring the symptoms. I wish you all the best and hope that you get the satisfaction out of this meeting that you so deserve.
Laura hiComment
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Hope it went well, Carly. Make sure to update us.
Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
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“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian TracyComment
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Well, I met with one of the Dr's that misdiagnosed me. He appologized. That's really all that I wanted. I did tell him, if he has more people come to him, please send them to a Dr. who is an expert on IC. I told him he wouldn't want his wife or daughter treated the way he treated me. He spent a lot of time with me and appologized several times. It made me feel better.carlyComment
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That is really good to hear. You probably helped a lot of future IC people who will go to him. Bravo!
Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
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“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian TracyComment
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After I was diagnosed with intersitial cystitis, I sent one of the pictures from my cystoscopy, along with my diagnoses to the pediatric urologist who failed to diagnose me.
I just wanted to let him know, hoping that the next paitent who came in would not have to go through all I did. I never heard anything from him, but I just wanted him to know.
AmandaComment
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Not all urologist specialize in IC nor really have an interest in it. I kinda got brushed off by my first urologist. He was a specialist in "male issues" like prostate cancer, erectile dysfunction ect. So its important when calling around ask if they specialize in ICDiagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)
I have moderate-severe IC
Currently stopped taking all medications due to pregnancyComment
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carly...
I am very happy to hear that your meeting went so well.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.Comment
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Wow! I am very impressed that you went there and did that. That took a lot of spunk and I am glad that it made you feel better. It could have gone very differently, (and probobly would have if you and he each had different personalities.) Maybe more of us should of done that rather than just letting it go. I dont know, but it is definately another view to consider. Thanks for posting!I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.
D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression
Meds: Estrogel (due to total Hyster)
The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)
(I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)
John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.Comment
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I am very impressed with both you and your doctor. It took a lot for you to do that, and it took a lot for the doctor to accept it with grace. Hopefully it will result in better care for the next patient.
I did not leave on good terms with the doctor who initially misdiagnosed me, but I still wanted her to be better informed, so I asked the ICA to mail her an IC information packet for physicians & called her office to let them know it was coming in the mail & I hoped she would read it. I really hope she did.Kadi
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
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good 4 U
Good for the physician too! A win win situation for both of you and future patients!Originally posted by carly View PostComment
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Wow. Thanks for sharing the encouraging results, Carly! Hearing your story actually gave me some closure for a couple of my own bad doctor experiences...lol!
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