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Corkscrew in penis?

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    Corkscrew in penis?


    For a long time I’ve been experiencing significant pain in the tip of my penis and urethra and it is completely unacceptable. I have essentially ruled out urinary tract infection and urologist usually refuses to treat by saying that it is merely colonization anyways.


    the pain is completely unacceptable, it feels like I have a corkscrew in my penis. I’ve been searching for answers for months and even had one urologist tell me simply that “this is something that people with spinal cord injury just have to deal with usually, maybe using start regularly taking oxycodone to deal with it”


    I have an indwelling suprapubic catheter at the moment. I have had it for almost 2 years.


    2 1/2 years ago I had bladder stones which cause similar symptoms, however cystoscopy rules that out fairly recently.


    I am taking myrbetriq, oxybutynin in the morning and topical gelnique on my arms at night. The best solution I’ve found so far is to be putting lidocaine ointments on my dick. I cannot have someone constantly putting lidocaine on my penis all day. I need to find a solution.


    Has anyone ever experienced similar symptoms or have any advice for this?


    Please help, This is unacceptable.
    Injured on July 8th 2017 at 28 years old.
    Fractured C4 - C7, Incomplete.

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    #2
    You have neuropathic pain. Have you tried gabapentin? You have to start at a very low dose and slowly increase (start low and go slow) until it gets better then you would remain on that dose. Gabapentin was first used an an antiepileptic but it wasn't a very good one and it was noticed that it helped chronic pains. Do not take any narcotic- won't help except when it knocks you out and you are sleeping and you will become an opioid addict. Opioids are not for neuropathic pain. This is pain in genitals or bladder area is common in some SCI persons. We tried botoxing the bladder etc... Cymbalta can also be added. With both you need blood work to ensure no liver enzyme abnormalities and periodically while taking. Cymbalta (Duloxetine) is an antidepressant but has pain properties. Other antidepressants such as Zoloft and others are helpful. But start one med at a time. Have you tried taking an NSAID (anti-inflammatory) such as Naproxen or 2 Aleve or Motrin with food twice a day with a glass of water. You can take this with your Gabapentin for 1-2 months.
    If your urologist PCP won't order and you don/t have a SCI or rehab doctor, try a neurologist who specializes in pain or a general neurologist.
    You could try a pain specialist but this is a very specific SCI issue.
    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #3
      Have you tried topical CBD oil?

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        #4
        I think that is a good suggestion and worth a try.
        CWO
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          #5
          I take gabapentin 600 mg three times per day at this point, that was for extreme pain in my neck on left side Originally. questionable how much it does for that pain, don't know that it does very much for the problem in question in my original post.
          Injured on July 8th 2017 at 28 years old.
          Fractured C4 - C7, Incomplete.

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            #6
            However, I am very cautious about this stuff when it comes to side effects of any of these drugs, although I need to be able to function throughout the day from chronic pain and such.
            Injured on July 8th 2017 at 28 years old.
            Fractured C4 - C7, Incomplete.

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              #7
              I had a good laugh when my urologist, one of them suggested heavy painkillers opiates to fix a problem, because that is obviously a terrible solution nevermind you could call it burning down the house instead of Turning the thermostat on when it is cold outside metaphorically.

              Also I am taking fluoxetine in the morning for supposedly theoretical nerve protection properties as suggested by my physiatrist out of Spaulding Rehab in Boston. Not a big fan of that class of medication, however willing to try anything at this point… Almost anything. With some caveats. Also taking buspirone which is supposed to have some potential neuroprotective effects, supposedly.

              Sometimes this pain seems to be depending on time of day and positioning, which makes me question the cause and the potential remedy. Often times it is first thing in the morning more significantly while lying down flat all night with indwelling suprapubic catheter, and additionally sometimes when crunching over putting my shoulders on my knees.

              I am hoping that it is not purely neuropathic, because I do not like that prognosis. Trying to eliminate all options and additionally eliminate anything that might be masking the real cause if indeed that might be the case
              Injured on July 8th 2017 at 28 years old.
              Fractured C4 - C7, Incomplete.

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                #8
                I would recommend a pain clinic pharmacist make recommendations for pain.
                as mentioned above there are other options to opiates
                there are certain antidepressants and anti seizure medications that are used and effective for nerve pain
                If you have a suprapubic port and penile/urethral pain it is also important to have the urethra scoped to make sure there is nothing physically wrong.

                pbr
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                  #9
                  Thank you, I Appreciate the suggestions, however I'm still open to you and looking for anymore information that I can get if anyone has any more suggestions please let me know

                  additionally, it was said to me that this pain is sometimes common in people with spinal cord injury, I was wondering if anyone can find or provide any research articles on this sort of pain in with this injury. I have looked online but I cannot find anything
                  Injured on July 8th 2017 at 28 years old.
                  Fractured C4 - C7, Incomplete.

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                    #10
                    The only time I have similar pain is with a UTI. Corkscrew is a good descriptor but I usually tell people it feels like barb wire going in and out of my urethra. Just curious, does an ice or heat pack change the pain in any way?

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                      #11
                      This is a very specific article referring to a conus medullaris syndrome SCI and how it effects pain in the penis
                      i have had patients who have had generalized nerve pain in the genitalia who were quadriplegics. The pain developed several years after the initial injury so something may have changed in his spinal cord overtime to result in that
                      pain.

                      https://clinmedjournals.org/articles...22.php?jid=ncr

                      pbr
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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