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diagnosed in May

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  • diagnosed in May

    Would like to connect with other men who have this condition. Symptoms range from deep anal/perineum discomfort, pain in the genital region, sub-pubic bladder pain, & urgency & frequency. For many years was told i had Non-Bacterial Prostatitis.

    Hope to hear from some guys who can relate.

  • #2
    My friend I was diagnosed recently too.
    I have been told I had non-bacterial prostatitis for two years.I thought IC is for woman only.But as we can see that is not the case,I've had all those symptoms much more and spent thousands of pounds trying to cure it. With the types like British Uros
    I don't think so.
    My most recent new symptom is loss of sensitivity in the penis and penis not very hard upon ejaculation plus less pleasurable ejaculations.
    I'm going nuts. I'm still 28 and not married yet...Oh well I think I bored you to death already
    Because of terrible pains 2 years ago I had to cancell my wedding and I'm not with my girlfriend any more.
    -How many times I think of suicide??
    Oh every morning evening .....
    Good luck and god bless you.
    I think this desease is mistaken in men for prostatitis and I think as much as half prostatitis patients are IC patients in fact.
    I better stop here bye..

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    • #3
      Just go to www.deja.com
      and press prostatitis in the search engine
      you'll come to sci.med.prostate.prostatitis
      all those men think they have prostatitis,
      half have IC which can effect the prostate
      too.The same thing.

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      • #4
        I agree with you on the prostatitis thing. Doc told me I probably have some kind of bug or inflammation hidden somewhere!!! Gives me antibiotics which are a waste of time! I've been taking klonopin for tension in the pelvis area which helps some. The pain in the penis is what drives me nutts!!!
        "His strength is made perfect in my weakness"

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        • #5
          Hi,

          I have been dealing with this condition for some time now. My symptoms are: chronic pain in the perineum (sitting makes the pain much worse); (2) general burning pain in scrotum; (3) more intense burning pain in scrotum relieved temporarily by urination; (4) at times pain during ejaculation; and (5) pain after ejaculation.

          Would like to correspond via email with other men who have this condition. Email me at [email protected]

          Thanks.null[*]Men With IC[*]null[/LIST]

          Comment


          • #6
            Hi Guys- I have had IC now for 2.5 years, I also have full blown Fibro, Asthma ,IBS and an assortment of other goodies. I have similar types of pain as you have but the Fibro makes it much worse. My Frequency is 40+ times a day. I tried all of the traditional IC treatments and none have worked. I am going to spend a week in hospital this fall for injections in the spinal column to see if we can stop the process. I have even tried the Lidocaine treatment before. Three years ago I played
            Hockey 3 times a week, cycled 40kils roundtrip to work. I was in good shape, then I had a bad car accident, with an injury and
            Whammo IC etc. I am now on full time disability, I have not worked since April 1999. What keeps me going is my Faith in God.
            Take care guys and remember we are not alone,
            I too was originally misdiagnosed, I believe there are many men out there with IC and don't know it or will not go to a doctor.
            God Bless

            James
            Your Brother in Christ and IC

            Comment


            • #7
              James,

              Thanks for your message. I too am a Christian but having a difficult time with this. Would you be willing to correspond via email? My email address is [email protected]

              Take care.

              Comment


              • #8
                Hi I am a female 47 years had IC and Pelvic Floor Dysfunction, I had urg/frq burning in the pelvic area and alot of bloat. Have any men that you have heard of or any of you considered the Interstim Implant. I have this and it has helped me a great deal. I am not saying it is the answer but it has worked for me, compared to hwere I was at over a year ago. I still have a problem with the bladder not emptying to a releived feeling and the possibility of a second wire going in might be done, but at the moment I still have to cath sometimes(especially if I am stressed out and nerves are bad) I am interested to her more from men with IC because alot of men could not recognize the symptoms or be told they have something else. I have one male friend who seems to have urg/frg alot but seems to refuse to beleive he could possibly be in the early stages of IC

                Regards
                Sandy from Toronto

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                • #9
                  Hey guys, I am a 41 year female who has IC. My brother, I believe, also IC but you know what the uro told him,,,,,,,My brother is trying some suggestions and open minded to discovering if it is IC. He doesn't have pain but has frequency getting up 5 to 10 times at night, etc. Have any of you tried the IC diet for a period of weeks or a month? The diet took a long while to work for me but since fitness was also a big part of my life, I was anxious to return to some exercise. I follow the diet with no slip-ups have no frequency and only slight pain every couple of days. I hope my words are encouraging...the diet can take a month to take effect. One slip into a bad food can set you back for at least 3 WHOLE MISERABLE DAYS!

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                  • #10
                    Hey guys. Just wondering if any of you are taking any meds, if so, what, and are you finding any help?
                    I have IBS, fatigue, and this burning penile pain and spasms 24/7.

                    I'm going to start with a popular doctor here in Atlanta who is a christian that treats body/mind/spirit which I think will be a key factor for me with these ailments.
                    I have found relief with a low doseage of klonopin 5 days a week.

                    I am curious about trying Elavil, tofranil, or sinequin since I've heard good news about those.

                    Breck
                    "His strength is made perfect in my weakness"

                    Comment


                    • #11
                      HEY,
                      HAVE ANY OF YOU TRIED PYRIDIUM PLUS(NOT SURE HOW TO SPELL IT) FOR THE BURNING?I HAVE FOUND IT HELPS THE BURNING ALOT.I AGREE WITH EVERYONE ELSE ON THE DIET.IT TOOK ME ABOUT 3 MONTHS TO NOTICE A DIFFERENCE.I HAVE ALOT OF ALLERGY'S TO SO THAT GIVES ME EVEN LESS TO CHOOSE FROM FOOD WISE.I PRETTY MUCH CAN'T EAT ANYTHING I REALLY LIKE,BUT IT'S WORTH IT NOT TO HURT AS BAD AS I WOULD IF I DID EAT IT.DON'T GET ME WRONG I STILL HURT VERY BAD, BUT THE DIET DOES GIVE ME A LITTLE RELIEF.

                      GOOD LUCK EVERYONE AND GOD BLESS,
                      KIM

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