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Thread: Urinary tract lesions--Sjogren's and Lupus here

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    Default Urinary tract lesions--Sjogren's and Lupus here

    I have had, since 1989, serious urinary tract lesions, including one extremely bloody, messy, painful one right at the introitus. My urethra is so spasmed the uro-dynamics test (an audio one which uses sonar to "see" the shape of the bladder) revealed a urethra so narrowed that the sound the wand made in my urethra was practically beyond the reach of human hearing, audible only to dogs. The technicians and doctor were stunned.

    I have found, on Med-line, two women in Europe with lesions in their urinary tract, but that's it so far. My bladder is also terribly inflamed, and pain has ruined my life. Lupus is bad, Sjogren's is worse (more aggressive), but these bloody (literally) lesions are making me crazy. I need morphine just to be able to stand the pain--it's so severe it fractures my mind and I just disappear into madness until the pain stops, which even Morphine doesn't always manage.

    Is there anyone else out there with anything like this? I had lesions on my face, back before I was diagnosed and didn't know that I should be staying out of the sun. They'd be flat, red, round, then would split spontaneously, and remain open for weeks and weeks while I treated them with Aloe Vera or cortisone cream until enough scar tissue had built up to stop the splitting. They left small round 3-d scars on my face, where the scar tissue built up. They are now flesh-colored, thank goodness, but of course we can't reach the internal lesion to treat it with anything, though I've tried. And anyway, urine washes away any healing substance, so we're at a loss.

    Sex is too painful to even contemplate, I can't urinate, I need morphine 24 hrs/day (fortunately I am not addicted, but after 5 years of it, I'm surprised my body doesn't require it just to survive--it does, however, make a social life, a normal life, impossible) Even when I go out to a movie I have to carry my medicine and syringes--potenitally humiliating though legal.

    But I don't know what to do. To try to get Aloe or other skin-healing substance on the lesions is a practical impossibility, yet that's the only way to stop this problem. And it took weeks on my face for the lesions to build up enough scar tissue to stop splitting, even without the constant urine baths.

    Does anyone have a similar problem? Or an idea, however outlandish? I'll try anything (and yes, I have been to every sort of "alternative" healer you could name--I am one myself).

    I saw, in the doc "Stories of Lupus" a woman with lesions all over her face, chest, arms, but other than those two Sjogren's patients in Europe, haven't found another person with a similar problem.

    HELP!!!!!!!!!
    Make life into art.

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    I have Sjogren's. I have about everything you can possibly have because of the poopy lupus (just my silly nic for it, cuz its a shitty disease and I try to make light of it when Im talking about it to someone). But lesions on the bladder? I dono. I know that Morphine does cause a person to have trouble urinating. I know that from experience. It also causes the bowels to become numb as well (thats what happens to the bladder when taking Morphine). But it is a good drug when in pain. I cannot get anything more than Percocet for my pain. I have Chronic Pain Syndrome, as I have everything under the sun. I have determined that I am extremely unlucky. I have the worst luck. If it werent for bad luck, I would have no luck at all. Really. Not just with medical probs, but with life itself. I am a mess, and dont want to handle it anymore. It is 6 am, and I still havent been to bed. I cannot sleep. I am stressed out. I am getting off the subject. LOL...Sorry...I am just venting, as there has been nobody to vent TO, about our disease. Until now. So please, people bare with me until I get it all out. In a yr or 4 I may be done venting...LOL....j/k...anyway, Sjogren's is awful for me at times. My eyes are getting the worst of it. PM me if you want to, and we can compare symptoms, or just do it here. whatever you want to do. Sometimes ppl just want to keep things private, so I give them the option of doing so. Or you can directly email me.
    Only with prayer, am I still here.....
    Roni Shawn Teem
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    I know Morphine can cause trouble with urination, but as I pee about every 7 minutes (not an exaggeration) morphine only slows that down to about every 15. Because it relaxes the muscles (which is why some people have trouble) I can actually do it less painfully, because my urethra is in such severe spasm I often need to be catheterized in order to pee at all, so this makes it easier for me. Now this would not be good for everyone, but for me it's ok as it kills the mind-shattering pain of the lesions and also stops the feeling of urgency and intense over-stimulation of my inflamed bladder.

    It's weird--I never took recreational drugs or even drank beyone an occasional glass of French wine (if it wasn't good, I didn't see the point). I don't even drink coffee (at 47, I've never had a cup in my life!) but now I have to take morphine! Bizarre...
    Make life into art.

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    I know this is proabaly a really stupid question....I would think that this would be the first thing a Dr. would try, but since it wasn't mentioned.....have they tried pyridium? I know there are a number of other things that they use for UTI type infections that might bring some relief. Do they ever put you on anything like Macrodantin to try to keep the lesions from being infected/inflammed? I am SO sorry....I can only imagine how painful that must be...and I CANNOT imagine walking around with syringes for pain meds! I deal with pain on a daily basis too. As I have mentioned in some of my other posts....I have trigeminal neuralgia and have had some really trying times...long before these new symptoms came along that they are investigating for lupus. Trigeminal Neuralgia is nicknamed the "suicide disease" The pain can be so intense that you cannot stand it, but unfortuntely, it will not kill you... It just makes you wish you were dead... I am lucky in that mine has not affected by teeth or the ability to talk....but it is none the less EXTREMELY painful when it is flaring. It too has periods of exacerbations and remissions. I would love to know if there is any connection between it and lupus....as I have seen several people here that have it....and that is kind of rare. It too is considered a "rare" disease...anyway...I have to see a pain managment doc for it...I am assuming that is what you do....as I don't know any other doc that would prescribe morphine on a regular basis. But I know they have all kinds of morphine that is not injectible....I think there is a new pill called Avinza(???)...I think...have you heard of it? Have you tried duragesic patches? These work quite well for some...I have tried them, but they make me too sleepy and I am trying to work with all of this trouble!!!! My dr. aslo gives me fentanyl suckers...and these are great for me. They do not make me sleepy like the patches do and they are not a continuous thing, so I can control when I take them. I often crush them up and carry them with me so it will just look like I am sucking on hard candy instead of a sucker... They have varying strengths.....these are just some thoughts....I know that once you find something that releives that awful pain you are hesitant to change...I understand that believe me. I would just like to think that there might be something that would work better for you....you would think that in today's day and age we would have progressed to the point that you would not have to inject yourself for pain relief. I cannot imagine how awful that would be...aside from the fact that you will eventually build up hard places of necrosis in your injection areas that will make it more and more dificult to find a place to inject. I hope this helps......I really feel for you!!!!
    HUGGS,
    Deana

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    Default Necrosis????

    What do you mean, necrosis???? I'm doing IM injections, and not IV, so let's be clear on that, but what the hell?? You've given me quite a scare, so please respond!! I know it causes scar tissue to form, but necrotic--dead--tissue?????

    Pyridium by the handful does nothing. The lesion is an open sore, one in which bacteria sometimes festers (I can tell by the itching), and we switched to Morphine after I became too used to Codeine/Vicodin.

    My regular doc gives me the Rx, not a pain specialist. I'm about to see another one, as the first pain doc gave me Neurontin and something else, both of which caused me hallucinate, have what an old friends said sounded like a "seriously bad trip"! He'd done a bunch of LSD in the early 70's, obviously.

    Thanks for your concern. It wasn't a "stupid" question. I don't know what your disease is--will look it up on Medline. I'm sorry you're suffering so. It sounds as though you're in worse pain than I.

    Take care.
    Make life into art.

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