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Is it really ic?

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  • Is it really ic?

    Hello all i am a 25 year old male. I kept going to the restroom frequently and two weeks ago i had a cystoscope done and my urologist diagnosed me with ic. I am not in much pain at all. No pain the the bladder at all. Only discomfort i have is the feeling of urine being constantly present in my male parts. Is a cystoscopy definitely acurate at determining ic or not. I did not get a chance to talk with the doctor yet. Could it be inontinence?

  • #2
    The difference between IC and incontinence is when IC patients have to pee it becomes painful (for most) and we have increased frequency and urgency. With incontinence you have those symptoms too but sometimes if you dont make it to the bathroom in time you can leak urine or pee yourself. I dont have a problem holding urine I just have to get it out because the urge and pain becomes too much to hold it. If you leak urine when you cough or do other activities I would get a second opinion.
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

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    • #3
      It does sound like interstitial cystitis. That feeling of needing to urinate constantly is a part of the disease. One good thing is that, with treatment and following an IC diet, most of us have been able to calm that eternal urge.

      Incontinence does not usually happen with IC --- incontinence is when you don't have control over when you pass urine.

      You'll find the latest diet list at the link in my signature below.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

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

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      • #4
        Yeah the doctor put me under anesthia and then told me he took a look and it looked like ic. He gave me a list of foods that were safe to eat. I guess the symptoms started about a month ago. The constant urge to urinate. Never really any pain. Now since i have been following the diet the past couple of days he constant urge to urinate has passed. But all day today i have had a dull pain in my pelvic region that radiates to my upper thigh. Not a sharp pain feels more like a dUll growing pain. Man i hope this goes away. It is uncomfortable, and i am scared to have to deal with this my whole life. Hey it could be worst though right?

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        • #5
          Man i hate this stuff it is miserable. Its hard to imagine living the rest of my life with this. I hwvent eaten hardly anything today because i dont really know what is safe to eat. It seems like everything contains trigger ingredients. Is a cure of very helpful medicine besides emirol in the works? Is anything under clinical trial and do you think there will ever be a cure?

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          • #6
            Are there any cures in the works? I think i would pay a ton of money for it. Even though i dont have much.

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            • #7
              I have not heard of any "cures" being worked on, sadly. I am not sure if the knowledge of IC is advanced enough yet to get to a cure. I think we're more in a "control the symptoms" phase of treatment honestly. Elmiron (I believe is what you meant) is expensive and takes at least 6 months of being on the medication to know if you may be one of the lucky ones it seems to help. I was placed on it by my Urologist but after reading trials and studies on the medication, my husband and I felt it was better to put the money into treatments to control my pain rather than taking a risk on something that may or may not work for me at all and would cost so much just to even see if I would be among the lucky ones it does help. To us, we did not feel the numbers of success in trials were high enough to justify the cost. But that is a decision each person should make for themselves with the research. I just wouldn't consider it a sort of end all be all treatment for IC just yet. Hopefully they will improve upon it!

              But, there are many other options (even if there are not cures) to help IC patients with their symptoms. You should definitely try some of the over the counter medications and see if any of them will help you. Azo Standard is one that will numb your urethra to help with any burning and can also help tone down the urgency feeling. Your doctor can even give you a higher dosed version of this called pyridium if the Azo is not strong enough.

              There is also one called Prelief. It is a medication that you take before you eat to help reduce the acid in your food that will get to your bladder. If the diet is working well for you already, you could use the prelief when you are eating foods that have irritants in them that will be hard to avoid. One thing about prelief: It can cause stomach upset if taken to far ahead of meals and on an empty stomach. So only take it about 5-10 minutes before you eat if you have an empty stomach.

              You are fortunate to not have the associated pain, but lord knows the urgency is not easy to handle at all. Definitely speak to your Urologist about exactly where your symptoms are located (like in the bladder, in the Urethra, both) and when they occur (during urination, with a full bladder, after urination). You may need a prescription medication like Enablex, Vesicare, or one of the many others that calm the symptoms of overactive bladder.

              If your Urologist is not able to get the discomfort under control, you may want to consider combining his work with that of a Pain clinic in your area. They have treatment options that your urologist may or may not be versed in. Above all, hang in there and don't give up until you find what works for you.

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              • #8
                Thanks for your help Jadia. My pelvis pain went away about a week ago,but it was not related to the ic. Then saturday like an idiot i went party. I had about 4 shots of vodka and about three beers. It did not really make my symptoms that much worse but now i have these slight aches in my bladder because of it. I will not drink heavy like that again.

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                • #9
                  Alcohol can get me like that too. Wine tends to get my bladder a touch over excited so I try to limit it as well.

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                  • #10
                    caring for muscles in the beginning

                    I think anyone who gets IC should be aware that pelvic floor disfunction can develope or PFD can even be a major cause. Whatever the case there is lots on this forum about it. You can go to a physical therapist who specializes in pelvic floor therapy or if you can't spend the money atleast get the books (for sale on this site are probably the best ones) and do the therapy yourself to keep muscles loose. I had IC way before that was even known to be a problem.
                    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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                    • #11
                      I figured I would respond now. I am a male as well. I was told "IC" back in 1997 after cystoscopy with hydrodistention. Yep! I did not go to the urologist office complaining of pain, but I did view a picture of my bladder a week later.(and yucky) None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. OK. I am well aware we keep getting told there is no known cause and no known cure. Maybe I can state what one individual had posted somewhere on Facebook earlier today. At least, I will now. She had stated stem cell was the answer, but the FDA won't ever approve it for us at all. She even stated the pharmecuetical companies, the ones making billions off of people like us, will make sure of that. What a bummer! By the way, I don't have proof right now that stem cell would be the answer, but I can't find that person on Facebook any longer that claimed to have gone to Pamama, Brazil, or wherever, to have it done.(or have not seen any progress posts lately anywhere) (and stated the cost and all)OK. I'll probably croak without ever being cured at all. Oh, well!

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