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Thread: embarrasing, but I have to ask!

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    Default embarrasing, but I have to ask!

    Hi all, hope everyone is pain free.

    I have an embarrasing question that I have to ask. We I'm just going to come out and ask at embarrasing as it may be but do any of you wet the bed? I started too do so a few weeks ago, at first it was very little, but now its full blown urine. Its disgusting and its terribly embarrasing, worse part I sleep with my hubby and had to wake him to change the sheets. I did some gooling and it turns out it can be lupus related especially Lupus Nephritis. Im scared to death lupus will eventually attack my kidneys, I have proteing in my urine, hbp and have gained more than 20 lbs, mind you I'm only 4'11".
    Next question is which doctor do I ask about this, as you all know most of us have quite a few.
    Thanks for taking the time to read.

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    I remember the embarrassment I had (have) over that issue. My first suggestion would be to talk to your neuro. Mine turned out to be from night seizures. When I started it I told no one because I didn't know how to tell them that a grown woman was wetting the bed! Thankfully my first neuro had that on his questionnaire! I just cried because I finally figured out that it wasn't my fault.

    You might want to try wearing a urine collecting pad (almost like a pad for a period) at night so you don't have the sheet changing issue.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Thanks Mari, glad to see your familiar face. I don't have a Neuro, I contemplated calling my rheumy but didn't, then thought about calling my PCP but don't have a good enough relationship with him. I think I might just wait and hope it doesn't happen anymore.

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    Hi Linda,

    In addition to having SLE, I was also diagnosed with overlapping MS around 2 years ago. I did a bit of reading to know what I was dealing with.

    Generally, loss of bladder control is not usually related to any kind of kidney ailments, although there are exceptions. It can often be a result of intense stress, such as what's experienced in combat, and it can also be caused by a neurological problem, which is why people with MS often have incontinence/loss of bladder control. Fortunately, I have not had this problem, but I felt I needed to learn about it as it could very well be something I have to deal with down the road. In addition to MS, Lupus can also affect the CNS and have some neurological effects similar to MS.

    I know it's embarrasing, but it's nothing to be ashamed of. If it ever happens to me, my GP said he would send me to my neuro, and my neuro could possibly send me to a urologist to eliminate any causes that are not neurologically related.

    I would not fault you for taking a wait and see attitude. I could very well do the same if it happens to me, but I will still throw in my usual "better safe than sorry, get it checked out" advice/suggestion.

    Rob
    Last edited by rob; 01-09-2012 at 05:28 PM.

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    thanks Rob, although I do understand its an uncontrollable action I can't help but to feel embarrased, as I know it shouldn't happen. I am going to make an apt with my pcp and discuss it further. You are right about being safe than sorry and after everything that has happened I don't need to add anything else and rather rule it out. Thanks again!

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    Oh honey, I'm so sorry this has happened to you.

    I haven't wet the bed but when I was vomitting so much when in a GP flare I was wetting myself every time I vomitted. Finally, I had a bladder sling surgically placed and am so happy I did. No more leaking.

    I would definitely keep a log of sorts and report this to your doctor--sooner than later if it persists.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by chikititalinda View Post
    thanks Rob, although I do understand its an uncontrollable action I can't help but to feel embarrased, as I know it shouldn't happen. I am going to make an apt with my pcp and discuss it further. You are right about being safe than sorry and after everything that has happened I don't need to add anything else and rather rule it out. Thanks again!
    Yeah, I know, and I understand. You can be clinical and break it down as just raw medical facts as much as you want, but it still sucks, and it's still embarassing.

    I'm glad you are going to talk to your doc about it.

    Rob

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    Linda,
    I understand completely. I've managed to never yet wet the bed, but I often don't quite make it across the hall to the bathroom at night.
    My problem is that I feel urgency and leak as soon as I go from lying down or sitting to a standing position.
    I also often have the feeling that I've gotta go very soon after I've gone. I can get back to the couch after going to the potty, and almost immediately have to get up and go again. Shopping at the commissary means several stops at the public restroom before I check out and go home.

    I mentioned it to the unhelpful rheumy, but she just blamed it on menopause. I think that I've figured it out since my otolaryngologist mentioned that he thinks that I have spastic paraplegia. When I looked it up, besides the spastic leg muscles (which I have) another symptom is leaking and urinary urgency! It seems that the bladder gets spasms, just like the leg muscles and the vocal cords (Spasmodic Dysphonia).

    I've started using Poise Pads. They do help to keep me from being embarrassed in public. However, I refuse to wear clothing to bed (I'm one of those people!).
    I tend to wake up every couple of hours with leg spasms, so I just make sure that I get up and go to the restroom two or three times a night before I get into an emergency situation.

    I know that there are some meds that are supposed to help with spasming bladders. I've even read that some people get botox injected into the bladder, similar to the botox injections that I get in my vocal cords. I just wish that I could get a doc to listen and actually give me a diagnosis.
    If you have an understanding rheumy, I think that's where I would try first. If not, talk to your PCP, or even your gyno. One of them might refer you to a urologist.
    Hugs,
    Marla

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