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Hydrodistension after clear Cystoscopy result.

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  • #1

    Hydrodistension after clear Cystoscopy result.

    Hi everyone.

    I haven't yet been diagnosed with IC but I went to see my urologist on wednesday to get the results of my cystoscopy.

    I've been struggling with urinary frequency for 5 years but in the last year after a course of antibiotics for a uti i started getting stabbing pains, itching in my bladder, leakage and flare up of symptoms induced by fizzy drinks, citrus fruit and caffeine.

    My urologist dismissed IC straight away and told me I was too young (i'm 22) and that it was just overactive bladder. But after i insisted on tests I had a cystoscopy and urodynamics.

    My urodymanics showed i could hold 170ml without being in pain equal to menstrual cramps and 300ml before I could not move with pain. Because I could hold (except for the pain) Overactive bladder was ruled out.

    I was asked to complete a bladder chart for 3 days prior to seeing the urologist and this showed I usually held 100-150ml and only managed to hold more than that overnight (with amitriptyline). I could never hold more than 200ml though, even over night. It also showed i was going on average 17 times a day. These results were taken on flare free days.

    When I saw my urologist he said that my cystoscopy was clear but i shouldnt have such a small bladder capacity and filled out forms to put me on the surgery list. He still doesnt think it's IC and said he will check anyway.

    I would just like some input on how likely it is that i could still have IC because im petrified that the hydro wont show anything and the uro will think i'm making it all up

    Also, for those who have already had it done before, i've never had surgery before; is it dangerous? And how long does it take to recover?

    I havent got a date through because there's a long waiting list but i'm anxious already which isnt helping things. I would really appreciate any information you could throw my way.

    Thanks to you all,

    Lyndsay
    Tags: None
  • #2
    My bladder appeared to be completely normal and healthy during the office cystoscopy, but capacity was somewhat low. When I had my hydrodistention, the IC was obvious. After my first one, I took it easy for about two weeks --- I've had over forty now and I plan on about the same recovery time. When I was working I would go back to work in about five days.

    I hope they can get you scheduled soon. The waiting is the toughest.

    Warm hugs,
    Donna
    Stay safe


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    • #3
      Originally posted by ICNDonna View Post
      My bladder appeared to be completely normal and healthy during the office cystoscopy, but capacity was somewhat low. When I had my hydrodistention, the IC was obvious. After my first one, I took it easy for about two weeks --- I've had over forty now and I plan on about the same recovery time. When I was working I would go back to work in about five days.

      I hope they can get you scheduled soon. The waiting is the toughest.

      Warm hugs,
      Donna

      i am same boat.. it took hydrodistension for my uro to see how badly my bladder looks! Good luck. I hope you get this resolved soon!!
      -Pammylynn Rose
      Wishing everyone a pain free bladder day!

      Painful symptoms start in May 2011
      Diagnosed with IC in Aug 2011

      MEDICATIONS
      Elmiron
      Axert (only for rare migraines)
      Strict IC diet
      Gluten/dairy/egg free diet

      Comment

      • #4
        Lyndsay I had my HYDRO on the 24th last Wednesday. I came home the same day. Took it easy, no lifting. Had a grand nights sleep and felt very well the next day. Still taking it easy no big housework. I was not in pain. I am one who can not use a bedpan so the nurses were kind to help me to the bathroom and I was able to void without trouble. I was going about every 15 - 20 minutes before the HYDRO and now seem normal. This is just my experience. Each person is different. Much depends on the Doctor. My Doctor is an OBGYN and has done four on me. Like you I was very worried before it was done even though I've had them before. That would be normal I think. He took pictures and my bladder looks very bad. I don't get the fact he thinks you are too young. Children can get IC I have read. Keeping you in my thoughts & Prayers. Please let us know how things go. Hugs, Ziggy

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        • #5
          Just saying you're too young proves he doesn't know #$%* about IC. I'm 23 and diagnosed. I'd get a new doctor.

          Some people say the hydro left them in more pain than before and then others say its a tremendous help. It probably does depend on your doctor. My grandmother went into remission after hers.
          • 27 year old student
          • Had symptoms since I was 5
          • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
          • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
          • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
          • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


          Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

          What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

          What didn't work: Elavil, vistaril (12/22)

          Comment

          • #6
            Thank you to all of you for your input. After reading all of your comments I feel lots better about it.

            I started a new job last monday after being unemployed for 8 months and they have been great with me, making sure i have a desk near the toilet and giving me flexi time if i have problems getting in on time. I made them aware of this surgery before i got the job and they've told me I can have a week off after to recover so I hope thats all my worries taken care of and i'll keep you all informed of what happens when i have it.

            It feels so good to be able to talk to people who actually understand what im talking about

            And about the comment concerning my uro thinking i'm too young, i wish i could get a new uro but unfortunately under the NHS, its a case of you dont pay for it so you get what you're given. However i will ask for a second opinion if i dont get a diagnosis from this.

            Thank you all again and I hope you're all having good days today,

            Lyndsay

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