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  • Chronic Hypertrophic Cystitis?

    I am going out of my mind! I am on uro #4. Last urologist was Dr Moldwin which I loved!!! But he no longer takes my insurance. I have had IC symptoms since I was 18(now 32) or maybe before that.Too long ago to remember. But the real agony and pain started in 2002. Every Dr said that it sounded like IC but takes several years to diagnose. Dr Moldwin said he strongly feels it is IC and was going to do further testing but he stopped taking my insurance. He did an in office cysto and said he saw alot of inflammation and said he felt it was IC and diagnosed me with PFD and Vulvodynia. After finding out I could not go back to Dr Moldwin I found a new uro who said at the first visit that he wanted to do a cystoscopy with Hydrodistention in the ER to get to the bottom of this. Well that turned out to be a nightmare because of an infection and the uro being a jerk!Anyway,when my urologist got the results of my cysto he said the diagnosis is Chronic Hypertrophic Cystitis. I asked what that was and asked if it is the same as IC he said yes I believe so. So I thought great at least I finally had a diagnosis!And he went on to tell me about treatment options such as interstim, weekly installations,and so on. Well I saw my uro recently and asked if it was in writing that I had IC so that I could apply for disability and he blurted out "I think you have Endometriosis!"What?!!! Is he for real? He said after the Cysto he felt it was IC and now he is telling me that I should try Lupron for the Endo. I was diagnosed by my gyn in Dec for Endometriosis. But there was no Endometriosis on my bladder and my urologist knew this.Recently I got a copy of my surgical report(cysto) and it said: Chronic Hypertrophic Cystitis,& Cystitis Glandularis ET Cystica.This was on the page signed by a Pathologist. On the page written by my uro it says Preoperative Diagnoses: Hematuria and Urinary Tract Infection. Postoperative Diagnoses: Hematuria and Urinary Tract Infection. It mentioned that my bladder was filled with 500cc`s. And that there was some minimal petechia(glomerations).So I do not have IC but I am being treated for it and I have started weekly installations for a UTI? Also I must be crazy because everything this uro says is contradicting. I told him how difficult it is with the pain and how I had to stop working 2 months ago because I am in agony and my life is being ruined. He knows I go to pain management and that even with that I am suffering. He says he thinks I have Endo, does not want to put in writing "IC" but tells me that I should get support online at the ICN and ICA. Ok I am going crazy! I do not have a diagnosis afterall but he is giving me treatment for IC. But I cannot apply for disability because he will not say IC! I guess 14+ years of symptoms is not enough! I hate this Dr! I am waiting for an appt with a urogyn but my appt is not until the middle of April. She specializes in IC and my gyn referred me to her. My Gyn says knows alot about IC and says he could diagnose me just after hearing my symptoms for the past 14 years. He is a new Dr for me also. This urogyn that he referred me to specializes in Endo and IC so maybe I will finally have a diagnosis and be treated correctly. If anyone has read this long post thank you! And what do you make of my diagnosis and surgical report diagnosis?

  • #2
    I think your current doctor is nuts, frankly. I mean, honestly, what on earth is he doing?? I am glad you will be seeing a different doctor, a urogyn who specializes in IC. I think you will finally be correctly diagnosed, then, and you can start moving forward with disability hearings, etc.

    I'm sorry you've gone through this horrible, frustrating experience.

    I hope things get better from here on out.

    Blessings,
    Lori

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    • #3
      I don't know what it all means, but I did find these definitions. Hopefully Sarojini will see this - she understands a lot of medical jargon.

      Hypertrophic:

      Exhibiting hypertrophy (enlargement or overgrowth of an organ or part of the body due to increased size of the constituent cells), as in hypertrophic cardiomyopathy.

      Hy`per`troph´ic

      a. 1. (Med. & Biol.) Of or pertaining to hypertrophy; affected with, or tending to, hypertrophy.

      hy·per·tro·phy

      A nontumorous enlargement of an organ or a tissue as a result of an increase in the size rather than the number of constituent cells: muscle hypertrophy.
      intr. & tr.v. hy·per·tro·phied, hy·per·tro·phy·ing, hy·per·tro·phies
      To grow or cause to grow abnormally large.

      hypertrophy

      1. biol. An abnormal increase in the size of an organ as a result of overnourishment.

      Cystitis

      (pronounced sis-TIE-tess) is inflammation of the bladder. The condition is often associated with inflammation of other structures adjoining the bladder. For example, cystitis is often accompanied by urethritis (pronounced yur-ih-THRI-tess). Urethritis is inflammation of the urethra. The urethra is the tube through which the bladder empties to the exterior of the body. Cystitis and urethritis together are sometimes called lower urinary tract infections (UTI).

      cystitis glandula´ris

      that in which the mucosa contains mucin-secreting glands.

      cystitis cys·ti·ca (sst-k)
      n.

      Chronic cystitis glandularis accompanied by the formation of cysts.
      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.

      *****************************

      “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 Tracy

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      • #4
        crazy Dr

        You are right Lori my Dr is nuts! And Kim thanks for the help with the medical terms! I guess the enlarged organ hypertrophy explains why my bladder feels so swollen. My lower abdomen looks so swollen and distended compared to my upper abdomen. I hate this pain! Why can`t they find a cure or soloution to this problem? Why do so many of us have to suffer before getting the proper treatment? I am having one of those days that I am in so much pain and I am so angry. I am so thankful for this site and thankful that I have all of you for support and advice! I am wishing everyone a happy and pain-free day!

        Jessica

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        • #5
          Wow Jessica,
          You're dr does sound like he's nuts. Sounds like you have IC to me and he even told you that you did but now he's going back on it? What a whack job. I know that it takes a long time to get in w/ a new doc but I would def do it. My gyn diagnosed my IC w/ the PST but I just felt like they put me on elmiron, said here's the diet and sent me on my way. I made an appointment to see a uro on my own (I have a PPO and don't need referrals). It took me over a month to find one that saw a lot of IC patients and get in to see him. At that appointment we just talked and he pushed on my bladder and stuff, then I had to wait another week and a half for an office cystoscopy. From there he told me the same yours told you, lots of inflamation but he is trying me on antibiotics to rule out a bacterial cause. So I have to wait six weeks from the date of my office cystoscopy for my follow up where if I don't feel better then he said we'll do the hydro. I def feel like I have it but it is such a long process! I do appreciate that he wants to look at every possible cause and rule everything else out. Hopefully you'll have better luck w/ this urogyn and get more help.
          Christine



          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus

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