No announcement yet.

Is it possible for a teen boy to get IC?

  • Filter
  • Time
  • Show
Clear All
new posts

  • Is it possible for a teen boy to get IC?

    My son's urologist told us that it is impossible for a teen boy to get IC. Bladder biopsy showed chronic inflammation of the bladder lining and the pathologist even mentioned the possibility of IC. My son is 13 and has bladder pain between 8-9 1/2 out of 10. It hurts him to walk, ride in the car, etc... He is in pain 100% of the time and missed about 6 months of school. The docs have tried a host of meds which made things worse. Now we have him on Amitryptiline, Iyengar yoga, accupuncture and a bladder friendly diet. He is finally at a pain of 7-8 and can attend about 2-3 hours of school. We live on the West coast and are being told there are no other pediatric urologists in the state that he can see. Any suggestions???

  • #2
    I am so very sorry that your son is suffering with that type and degree of pain.

    It is possible that your son has IC. People of both sexes and all ages have come here and reported that they or their children have IC.

    Have you considered taking your son to a urologist other than a pediatric one? I think it might be beneficial to check with other uros to see if they will take him as a patient. We have Professional Listings on the ICN. These people have been recommended by ICN Members. Just scroll to the top of this page and click on Professionals. This will take you to our listings. Scroll down to the map and click on your State.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    IC 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.


    • #3
      Of course!

      Hi Kathy -
      First, let me say I am sorry that your son is going through this, and that you are having problems with his urologist. My mom and I understand the frustration you and your son are experiencing.

      As a child I spent years with bladder problems that went unresolved. My pedi-uro kept throwing tests at me as well as, diagnoses that did not sound like my symptoms, and treatments that did not provide relief, basically trying to shut my mother up. But after doing some research, my mom discovered IC online, which sounded exactly like my symptoms. When my mom asked him about IC, he too insisted that children could not have IC, and unfortunately, many urologists still believe this because it is uncommon. However, his thought process was that once a female menstruated, she could have IC, but get this, not the day before.

      Needless to say, my mother found a new pedi-uro for me, one who has experience with IC. At age 12, my pedi-uro did a cystoscopy and hydrodistention and discovered Hunner’s Ulcers on my bladder wall. I was his 19th IC patient, and yes, some were boys.

      As for your situation, I live on the east coast, so you probably cannot see my doctor, but I highly doubt that there are not any other pedi-uro’s your son can see. You may have to travel a few hours so your son can get the best medical care and you can see someone with knowledge of IC, but I feel once again, a doctor may just be trying to shut a patient up. Just do some research, and start making appointments if you want to get other opinions because it may take a few months to get in with a doctor; you can always cancel the appointments if you find a doctor that works for you and your son. I also agree with Sharon’s suggestion to consider visiting adult-uro’s; your son will be embarrassed to go to a pedi before you can blink anyways ha.

      Your son’s symptoms interfering with school also reminds me of my experience with high school; I was absent more days than I attended. But don’t worry! Once your son is diagnosed and obtains a doctor’s note, he should be able to get an Individualized Education Plan (IEP) in a public school, and received special accommodations. I was able to shorten my school day and get an at-home-tutor; they even offered to provide me free transportation to and from school because in my state (MA), every child has the right to a free and safe education.

      Anyways, sorry for the essay-like length of this response. I hope that helps and answers some questions. Please feel free to ask anything. Best wishes.
      Message me and add me

      Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

      Do you have a question? Feel free to ask me anything; I am an open book!

      I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.


      • #4

        Wow, I'm sorry to hear that you've been told some false information.

        It is completely possible that he has IC, and if there is inflammation or moreso bleeding in the bladder, that is pretty obvious IC. Someone can have IC when they are 1 yr old or 100 yrs old, male or female, even cats can get it!

        Also, the West Coast is home to THE authority on IC, Dr. Lowell Parsons, often credited with creating and testing Elmiron. I went to him when I was twelve years old, so age shouldn't be an issue there. He is in San Diego.
        Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

        Medical research addict.

        Likes: hot baths and naps with cats