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men with IC?

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  • men with IC?

    Well Well Well I guess I am in women's world when it comes to IC. Anyways I am 29 yr old male and my doc thinks I have IC. He did one cysto but it was very painful so he has scheduled me for a cysto/hdyro + a biopsy.

    I am kind of nervous because my URO has the belief that IC is only for women. He was kinda shocked and is 'trying' to look for something else rather than IC....I am nervous about hydro/cysto with local anesthesia. After the procedure, is it same as the doc-office cysto or is this worst after?

    He kinda scared me about "cracked" bladder which can happen. My bladder is also very small...I hope he can finally tell me whats wrong with me...confused as hell!

  • #2
    We have guys here they are hiding out lol.. no seriously we do have men here.
    IC doesn't have and age or a gender preference. The faster the doctors learn this the less we will have to suffer, and the quicker others can get dx'ed. I am sorry that you may have IC, however you came to the right place for tons of great support, and information.
    Having your bladder "cracked" is a rare, but it can happen, as long as he is very careful and only fills a little at a time you will be fine. Ask for pictures.
    When are you scheduled for your hydro?
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      I am scheduled day after tommorrow. My cysto was in April and i was back to normal in 24 hours....I have heard horror stories about people having pain forever after hydro so I am confused as to if I should go through with that or not?

      How bad is the bladder pain after hydro because I dont have much of pain right now..just the frequency and certain foods have me using the mens room for than 20 times a day..

      Is Hydro something I will regret forever because of the pain? As my doc said, this is the only way to diagnose "a women's disease in a man"...weird quote but thats what he said. He said he wants to rule out everything and then think of IC because its only a women's problem. Sounded weird to me.

      So I have done cysto/pyelogram/ultrasound of kidneys..eveything else. Now its Hydro's turn. i just want him to diagnose so that I can know this is it and try to adjust based on it...


      • #4

        Some people here have had real success with the hydro with no complications, My experience was more negative but mine was also a rare case because my bladder lining was so thin.. So mine ruptured.. BUT remember this is VERY VERY rare..Most people have a really good outcome with the proceedure.. The most important thing is to trust your doctor, if you have doubts about him or her then you should get a second opinion..
        And btw there are alot more men out there that have IC than you would think. We have quite a few men here on the ICN, but think they all are a little shy with all these woman around.. But hang in there and if you have questions ask away.. You will learn more on this site than from any doctor.. I know I did..Good luck! Let us know what you decide

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

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        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN 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.


        • #5
          HI Jimboy......If your dr isn't real sure what he's doing... or up against.....maybe you should find another dr. for the diagnosis?? Has he done cysto's before?? it doesn't sound like your dr. is real sure about any of this.....if he doesn't know that men get IC too! I'm concerned for you. Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


          • #6
            I can't argue with the fact that more women are diagnosed with IC than men, but we do have some men who come here.

            I hope you will be one of the lucky ones who are helped by hydrodistention. I know that I am and in my 32+ years with IC, I have had the procedure done forty times.

            The procedure is more involved than a simple cysto and you should plan to give yourself a few days to recover. There will very likely be some pain afterwards, but your doctor should order pain medications for the first few days.

            I have heard a very few people say their symptoms worsened and stayed that way after a hydro, but most report that they either stay the same or they improve.

            Be sure to let us know how it goes.

            Warm healing thoughts,
            Stay safe

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            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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            Diet list:

            AUA Guidelines:

            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.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              Thank you all for your support. I have been reading quietly for over a month and now the day has come for hdyro. I do trust my doctor but I am a bit nervous. I know you women have more tolerance for pain than us men here.

              From what I have read, my doc won't prescribe me any meds unless he is sure its IC and this is the only way to diagnose it correctly according to him. so i am leaning towards it and hopefully I come out good.

              When they do stretch the bladder, do they numb it somehow? Any pain meds are given? I took Pyridine after my first cysto(without hydro) and i was back to normal in 24 hours...Is that the only pain med?

              Can anyone tell me what regiment they went on after hdyro to be back to normal in few days rather than weeks? Lots of pain med? Scared of the pain after the procedure. Thast my only worry.

              My doc has done cystos/hydro before as he told me. he is in his late 50's so i think he has lots of experience. To his credit, he did say IC after he saw my voiding diary and my intake of fluids that day.


              • #8
                My first hydro was great, my second wasn't so great, but the pain and flair was about 6 weeks. but, I have an exreme low tolerance for pain. funyy thing coming outta off and IC'ers mouth huh?
                My mo got hydros for years with gret success, just like Donna dose. I am have my intestim implant tomorrow, so I will think of you and send out prayers when you have you hydro.
                'The will of God will never take you where the Grace of God will not protect you.'


                • #9
                  Hi and
                  I am one of the ones that the Hydro's have really help alot. I usually have them done on Thursdays and by Monday I am back at work. (usually only have pain on that day-up and about the next) I work full time as an Administrative Assistant) I was dx with IC back in 1992; started having hydros in 2003. I have them usually about every 6-8 months- just had one done about 6 weeks ago.
                  Hope you have good results on yours. Let us know.