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Why do doctors doubt us???

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  • Why do doctors doubt us???

    Hi, I was just diagnosed with IC after 4 years of thinking I was completely bonkers. I honestly believe some doctors are morons and have no business practicing medicine. When this all began, I believed my symptoms were of a gynecological origin, as I've found many women do. My Gyn did some standard guesswork, puttting me on several antibiotics for a non-existent infection, ultrasounds, etc. Through the process, I stayed insistent about finding a cause and treatment for my pain . His attitude was awful, and the last straw was when he performed a diagnostic laparoscopy, found nothing and suggested I seek psychological help. I was so beat down after 2 years of this that i half believed that it WAS in my head. When you put your well being in someone elses hands during such a stressful time, it's a shame some doctors can't muster up an ounce of ethics. I became pretty depressed over the last couple of years as my symptoms worsened, I kept alot of the suffering to myself.
    I am a stay at home mother of two and I just could not accept the quality of my life with all the pain. I made an appointment with a new gyn. and I was so scared to be told the same things again. But this doctor, after just a few minutes of discussion said "I think I know what's wrong with you". and so it goes....I have IC. It's bittersweet;relief of knowing I am not crazy; and intimidation of what's to come.
    I am glad you all are here, I've been reading the boards alot and it's already been a great resource.

    I wish you all a great day!


  • #2
    Punk. Your story is not uncommon. I spent 5 years going from uro to uro and even having my gyno specifically ask them to test me for it and they would not.

    But at least now you have your answer and you can start the healing process now.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...


    In Memory of My Father (Lawerence) 1/25/2007

    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996

    Me and my kids

    Taylor (my daughter) Me and my daughter My son Cody and Taylor


    • #3
      My story is alot like yours. I know exactly how you feel. My doctors told me I needed psychological help. I knew I wasn't crazy and that I should find a specialist. And guess what after 2 years later I finanlly was dxd. I agree some doctors are just morons and shouldnt be practicing medicine!!! if you ever need to talk to someone. Please feel free to pm me!


      Dance like no one is watching
      Love like you've never been hurt
      Live today like it's your last

      Dxd with IC in June '06


      • #4
        Welcome to the ICN! Like the others, I wasnt believed either. I share your outrage. It is degrading and humiliating to be treated that way by the very people who are suppossed to help us! Can you imagine the outcry there would be if it were cancer patients who were treated as we have been?

        But, no matter what happened to us, we cant dwell on it or the bitterness will just consume us. At least we have finally gotten d/xed and can start the healing process. But, I want you to know that you are not alone. Sadly, there are more ICers who share our experiance than those who dont.

        But, I am so glad you have found us so you no longer have to think you are the only one they didnt believe.

        Many hugs,


        • #5
          My story is like yours too. I went to 3 different uro's (all in the same practice) when I told her everytime I go the bathroom I feel like my bladder is not empty. She said I have to say to myself. "This is the last time you want to go" So like a idiot I did that! Then she had the cheek to send a bill. My insurance did not cover the in house cysto. I called her and told her I was not paying due to being misdiagnosed. They kept sending the bill. I told her I was going to talk to a lawyer. I have not heard from her but who knows. Once you find the right combo of meds you will start feeling better. It took 4 months for me to see a difference and 6 months to really notice a change!
          Take care Nazareen


          • #6
            and to the board. I think most of us have been through doctor problems like you, and it really is such a shame that we have to go through so much just to get quality healthcare, AND someone who believes us.

            We're glad you're here!

            *IC-- Summer 2004; PFD--October 2005
            *Fibro--Fall 2000; CFS-- Fall 2000
            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

            Total Abdominal Hysterectomy--adenomyosis--9\08

            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


            • #7
              Me 2. My IC wasn't diagnosed for 5 years! I think part of the problem with smart doctors is they would hate to think that people could possibly suffer as much as we do. This scares them, and they dont feel like they can handle the responsibility so they give us a dx like recurrent utis-they can cure this with antis so they like it better. Just a thought.

              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control


              • #8
                It took me 4 doctors and 5 years and finally one of the doctors that I was seeing went to talk to another one in his office who was an expert on IC and told him about me. He said sounds like she has IC, but she is too young (I was 32). He went on to tell him how to dx me (cysto/hydro) sure enough this is what I have. Of course, my doctor really didn't know how to treat it except thru DMSO treatments -- didn't ask this other doctor for any other comments, like diet or whatever. Afterawhile, of course, DMSO didn't help me, and it wasn't till 2003 that I found this site (10 years later - and by then these 2 doctors retired; and the doctor who replace the one that I went to told me about this site and diet and everything else- so glad I found it!!)

                Anyway, to this group, but sorry you have IC.


                • #9
                  Your story sounds almost exactly like mine. After my lap surgery, the doc came while I was IN RECOVERY and told my husband " Dude her problem is mental, not physical" Then proceeded to tell him I was a drug addict and would end up in rehab! He really said Dude too!
                  I was so floored. I refused to even go to him for post op care. I found the most wonderful doctor in the world after that and just like with you, in 5 mins she knew what was wrong with me. She was angry he hadnt checked my bladder during the lap surgery. After the dx, things can get a little scary but then they calmed down for me. Try to hang in there.
                  Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!


                  • #10
                    Originally posted by IC SARAH-CPP
                    Your story sounds almost exactly like mine. After my lap surgery, the doc came while I was IN RECOVERY and told my husband " Dude her problem is mental, not physical" Then proceeded to tell him I was a drug addict and would end up in rehab! He really said Dude too!
                    I was so floored. I refused to even go to him for post op care. I found the most wonderful doctor in the world after that and just like with you, in 5 mins she knew what was wrong with me. She was angry he hadnt checked my bladder during the lap surgery. After the dx, things can get a little scary but then they calmed down for me. Try to hang in there.
                    OH MY GOODNESS!!!!

                    That just makes me too angry for words!


                    • #11
                      Wow. Stories like this make me feel exceptionally lucky to have my doctor! My regular doc always gives me the benefit of a doubt, and my urologist, the only one I've had to go to, immediately dx'd me with IC within the first thirty minutes. This is all stuff my old doctor I'd had in college could never be relied on to do. He screwed me over a number of times by not taking complaints I had then seriously, and who knows, maybe if he did I wouldn't be in this mess now. Because of him, I flat didn't go do doctors at all for almost four years. At least now you have a doctor who is willing to help you.
                      In defense of doctors, though, they're people too, and they mess up sometimes. They're under a lot of stress, and they have to deal with a lot of attention-seeking and/or drug-seeking people day in and day out...probably a lot more than they have to see people with IC.


                      • #12
                        Why do doctors doubt us?
                        I can't tell you how often I've pondered this question.

                        At times, I have felt like we ICers are a persecuted minority. So many doctors seem to think of us as liars and fakers. They'd rather say our pain is psychological than try to understand it. Doctors and laypeople alike seem to doubt our integrity. I don't know what it is about having IC that makes people want to treat us like that. Is it because it's an "invisible" illness, that usually leaves few physical signs? Is it because urinary symptoms in women have historically been linked to hysteria? Is because we can't prove we're in pain? Is there just something about us that makes people want to kick us? I really couldn't tell you. They wouldn't treat someone with diabetes or cancer like they treat us. It would be so socially unacceptable; so politically incorrect. They wouldn't treat people in wheelchairs or with physical handicaps the way they treat us. And yet, it a lot of them think it's okay to give us a hard time. I've tried to find a reason for the insults, the degration, and the mistrust, but I just don't know.

                        I was told my problems were psychological as well. It's true that I have psychological problems, but my pain is still real. It's funny; even after I got the doctors to do a cysto/hydro, they still wouldn't diagnose me. My bladder had the glomerulations and internal damage, and they still wouldn't diagnose me. I was 15 at the time; they said I was too young to have IC. It took me a full year and several doctors to find out that I had IC. I found out from a nurse who let me read my surgery report. There it was:

                        PREOPERATIVE DIAGNOSIS: Urgency and frequency.

                        POSTOPERATIVE DIAGNOSIS: Interstitial cystitis.

                        They diagnosed me on paper, but wouldn't tell it to my face. Why? I don't know. I still don't know. I will probably never know why doctors are like this with interstitial cystitis patients. We're the patients no one wants to have, I guess.

                        I know I shouldn't be so negative, but it's hard when it comes to this topic. Being diagnosed with IC was so hard, much harder than, say, being diagnosed with bipolar disorder. Maybe it's not a fair comparison, but it's my only other major chronic illness. I just find it ironic that so many people talk about the stigma associated with bipolar disorder, but, from my experience, I have gotten much more abuse as a result of my interstitial cystitis than I ever did for having bipolar affective disorder. Honestly, I think there might be more of a stigma associated with bladder disorders, especially unexplained, chronic bladder pain, than there even is with the infamous manic depression.

                        Anyway... enough of that. Welcome to the ICN, Punky. I hope you find a lot of support here, as I have

                        Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
                        Current IC treatments: menstrual suppression
                        Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
                        As-needed treatments for other conditions: Klonopin, Ambien


                        • #13
                          My story is just like yours and a lot of other people too. It took me about 5 years and 5 doctors to finally get a diagnoses. I thought I was crazy too. I went through so many unnecessary procedures, ie: several laparoscopies, D&C's, urethral dilations, etc, before finally finding a doctor that diagnosed me. I will always be grateful to him for that and for letting me know it wasn't in my head. As much as I hated knowing I had this disease, I hated it more NOT knowing what was wrong with me. So trust me, you are not the only one, but I'm glad you also, finally got a diagnoses.


                          I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!


                          • #14
                            Thanks for all the input, and wow, it certainly isn't just me in this boat! I wish every m.d, etc., that had shunned an I.C pain sufferer had to spend an agonizing day in their bathroom. How some people sleep at night is beyond me........
                            Thanks for letting me vent.