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Severe pain in the genitals 😱😱😱😭

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    Severe pain in the genitals 😱😱😱😭

    Happy new year, good evening.


    C4/5 injury, Suprapubic catheter



    Simply put , it feels like my penis is being cut open from the inside out 24/7, please help.


    This has been going on for a year or two at least. I am losing my mind.


    I have posted about this issue before, however it is still going on and is very significant.

    I have significant pain in my genitals, in the distal half of my penis. This is driving me INSANE and I don’t know what to do. Feels like I have barbed wire inside my urethra, Burning pain, hard to describe, like broken glass , like my penis is being cut Open from the inside out. Mostly happens when laying down at night, and in the morning after laying all night. Much less significant during the daytime, when sitting up.

    I really need help and I would really appreciate it if anyone can offer suggestions. SCI-Nurse Thank you for commenting on this before, I would sincerely appreciate another

    1.

    This is not seem UTI related. I have started taking 1 million supplements and done everything to rule out UTI and it really does not seem related.

    2.

    The suprapubic catheter itself could be causing physical irritation to the inside of the bladder wall. I have been trying to verify this and/or rule it for a long time. It seems like this could be at least a contributing factor. Especially positioning seems to make things worse is worse. For instance when I lean very far forward like I’m trying to touch my toes it does hurt more.

    - My urologist and I did some testing to see if it could be mechanical irritation from the catheter rubbing the inside of the bladder . She did urodynamics testing and pumped the bladder full of water with lidocaine in it. This seemed to help somewhat . Theoretically if the wind can’t help that means that there is an injury to the interior of the bladder wall.

    - I’m trying to switch over to intermittent catheterization, however I do not have a good enough hand function to do that myself yet and I do not have reliable enough PCA coverage to help me with that.

    - My physiatrist thought that this pain may be caused by referred pain from the sphincter muscle at the bladder neck and suggested Botox injections into the sphincter muscle of the bladder.
    I asked him if they still cost me to leak urine out the urethra, especially if I’m transitioning over to intermittent catheterization. He said this would not happen… I am still not sure if he is correct about that

    - I have previously had Botox injections in the bladder vesicle/muscle in general.

    - Someone previously suggested having retrograde cystoscopy in the urethra to view the urethra for damage?


    3.

    The third question is whether this could be neuropathic/ neurogenic pain. It certainly possible. I would rather it was an easier answer than this. The pain is somewhat similar to what I feel in my toes and my feet, different because of where it is. There are certainly more nerve endings in my dick than the sides of my calves. So therefore perhaps this country correct. If this is the cause, what is the answer? What is the best thing I can do?
    I am going to try to order lots of different supplements and that kind of thing.

    I have tried switching medication for neuropathic pain from gabapentin to lyrica. 600Mg gabapentin three times per day switching to 100 mg Lyrica three times per day. I also take baclofen 20 mg three times per day. I am currently maxed out on Tylenol and ibuprofen. 1000 mg Tylenol three times per day, 800 mg Ibuprofen twice per day

    These things are not good for my liver and my stomach.

    I don’t really want to go out much higher on the neuropathic pain medication because I don’t want to get used to that dosage and have the pain come back, then rinse and repeat with nowhere to go eventually


    4.

    I am trying to try the Dr. Wise young off-label lithium course of treatment for neuropathic pain from the study done in china, showing that lithium can decrease high-level significant neuropathic pain after a six week course (1), however it is difficult to get my physiatrist to prescribe this as an off label treatment. I have inquired to SCINET , Jim sent me an email with more information to send to him, stating that β€œIn fact, doctors at Shepherd Center in Atlanta are prescribing it regularly.”, however my doctor is doing everything possible to drag his heels. He said he does not Think that he feels comfortable prescribing it because he is not well trained enough to monitor the levels in the blood as it is necessary. I got the office of psychiatry at the Massachusetts General Hospital to agree to monitor my blood levels if another doctor were to write the prescription, they said they would not prescribe this themselves. He is still dragging his heels, says that my primary care doctor would probably be better suited for this.




    Off labeled prescription of a medication seems to be a very common thing, one source stating that β€œTwenty-one percent of all prescriptions written by American doctors, exercising their medical judgment, are for off-label uses.” (2)

    So almost a quarter of all medication as prescribed off label. Additionally, lithium seems to be very safe drug β€œ [it is estimated that] manic depression affects about 3% of the population and about half of people who have manic depression take lithium. If true, this suggests that as many 4 million people in the United States are taking lithium. Many people have taken lithium for a lifetime. So, for people who tolerate lithium, it appears to be a safe drug. β€œ (3)

    My physiatrist doctor at Spaulding in Boston, the #2 or #3 of the top rehabilitation hospitals in the country seems to think that the results that Dr. Young has achieved are β€œquack science”, not only this study but also the walking rehabilitation clinical trials. He has expressed similar sentiments to me on multiple occasions, saying that dr. Young has never really had a successful trial and the results that he has gotten so far don’t really mean anything, whenever I bring the walking rehabilitation trial, he says β€œyeah, yeah, that study again, it has never amounted to anything, and it’s sort of pie in the sky” - like an urban legend or snake oil.


    My doctors short little bio on the hospital website reads:

    Dr. Ryan Solinsky-

    β€œFollowing residency, he gained further specialty training through a fellowship in Spinal Cord Injury Medicine at Kessler Institute for Rehabilitation/Rutgers New Jersey Medical School. β€œ

    https://spauldingrehab.org/physician/1014/ryan-solinsky

    Disappointing that somebody who has done a fellowship with Rutgers medical school would think this way about Keck Center for Collaborative Neuroscience & Dr. young


    Now, he is the best doctor that I have ever had to be helping me with this condition, better than all the rest that I have ever had, so he has a lot of other good things about him.
    However it’s so disappointing that nobody gives a damn, and actually wants to make an effort to change things.


    In closing, it feels like my penis is being cut open from the inside out 24/7, please help.

    I’m going to speak with my primary care doctor about the prescription of lithium. Other than that I don’t know what to do, I am going to start taking CBD and other supplements.


    If there are misspellings, my apologies. I am using dictation software.
    - Vindex
    @RealBShea


    (1)
    (https://clinicaltrials.gov/ct2/show/...&draw=2&rank=5)

    (2)
    (SCI NET material)

    (3)
    (Christopher M. Wittich, et al., Ten common questions (and their answers) about off-label drug use, 87(10), MAYO CLINIC PROCEEDINGS, 982–990, https://doi.org/10.1016/j.mayocp.2012.04.017)
    Injured on July 8th 2017 at 28 years old.
    Fractured C4 - C7, Incomplete.

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    #2

    I would suggest you contact Dr. Todd Linsenmeyer, he is one of the best urologists in the US, is at Kessler.
    https://health.usnews.com/doctors/to...16666#location

    Your physiatrist is clueless, probably hasn't even read the paper- https://journals.sagepub.com/doi/10....6368916X691411

    Comment


      #3
      My inclination would be to pursue the neuropathic pain as a cause. Did you have lower damage in your cord (ie, lumbar or sacral) in addition to your cervical injury? A descending syrinx?

      We often had to give as much as 3400mg. daily of Neurontin to manage organ/visceral neuropathic pain. Another drug that can be considered is Tegretol, as well as Elavil. Medical marijuana and/or CBD oil may also be an option if legal in your location.

      (KLD)
      Last edited by SCI-Nurse; 1 Jan 2022, 1:19 PM.
      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.

      Comment


        #4
        Wise words from my old GP pre-SCI: "Cranberry juice can help maintain a healthy bladder. But only a masochist takes it once they have a UTI." So if you are taking a cranberry supplement that could be it. Or have you ever had urine tested for a yeast infection? I have normal sensation in my bladder so if Ditopan XL is not stopping bladder spasms look for first if you have a very high count bacterial infection. I understand like with urethral catheters SP catheters will always show some bacteria. I forget the name of the drug many flush the bladder with so maybe discuss with your urologist. If they do find yeast a one time pill can often fix that. And I agree with KLD. Check out your entire spinal cord for changes. That includes the Cauda Equine area. And drink tons of good old water and try skipping caffeine for at least a month.
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

        Comment

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