Viewing 16 posts - 1 through 16 (of 16 total)
  • #74289
    incontinence

    Hi

    Sorry if this topic puts people off. I am wondering how many people with muscle disease also have problems with incontinence?

    I have had this problem for a number of years now but I dont have any risk factors for it. My Neuro previously thought it was connected to my condition and then deciced it wasnt as we thought we had semi worked my diagnosis out, this as you all know if not the case and something else has been raised. I tend to disagree with her and I will ask my new neuro at my next visit if the two are connected

    I realise not everyone likes to talk about stuff like this so if you are happy to share but off record please feel free to PM me.

    Many thanks in advance.

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #84726
    Re: incontinence

    This is a brave post on a difficult subject that could be described as the
    Elephant in the room that no one ever visits.

    The big question is if continence issues are MD related and just like you
    I have had differing opinions of this.

    There is both urinary and faecal incontinence of course but surely the clearer
    case to assess would be the latter.

    Two specialists I have specifically asked if MD is a factor have definately said that
    this would be be the one area where MD would not be related to the problem. Yet
    the biggest expert of all decided in mid invasive examination to say that he believed
    that muscles must be a vital part of it. It is seared into my memory as at the time the
    man had a camera and flashlight “65 CM depth of Sigmoid Examination”(from the report -look
    at a ruler to see how far up that was). He chose this delicate moment to say
    that there were so many muscles invloved in the peristatltic flow and the synchronisation
    of those muscles movements so important he would be amazed if there was not a major
    implcation to any muscle disease.

    But it isn’t in any of their textbooks yet so do not expect great revelations soon.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #84725
    Re: incontinence

    A big factor of bladder urgency is location and distance of the nearest loo. in many cases its not the bad function of the bladder but the bad behvoir of the old legs and of course the location and suitablity of a toilet. I can go for hours and drink huge amounts of coke, but just dont ask me to walk afterwards.

    and as I said in my Pm to miracle77 its posture is a factor as well. i have Scoliosis with a bad hip tilt which cant make things any easier, somthings bound to be in the wrong place squshing the bladder. particuarly after dinner.

    dont be affraid to get it check out, even to put your mind at rest. none of the test I had hurt.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #84727
    Re: incontinence

    Good timing for this topic – was considering posting myself. Been reading a lot on this lately. My main problem these last few months (and nothing before) have been in not being able to empty my bladder – meaning I desperately need the loo five minutes after. I also get bowel leakage (made worse by IBS type symptoms). I thought it was a UTI for my bladder problem but that came up clear.

    Basically whilst (apparently) the bladder muscle itself doesn’t seem to be a problem in NM disease (in fact some medical papers I read said it actually shows normal cell ‘strength’ as such for MD people) – the bladder and rectum (and vagina in the middle) are held in position by muscles and tissue which are known to be a lot weaker in people with MD. My abdominal muscles are very weak and pelvic muscles. Google pelvic organ prolapse and MD comes up a lot as a huge risk factor.

    Essentially, some incontinence (both types) can start to show up because of prolapsed pelvic organs. My specialist in MD had ignored the problem for years and their seems to be a reluctance to engage with this. The prolapse causes kinks and bulges into tissues it’s normally kept away from. Men can get it but a lot less so I gather.

    It appears all my organs are now prolapsing and I’m off for scans to check it out – for ladies this is usual gynaecology. If you want to know how you can tell yourself ladies DM me!!

    I also googled potential treatment and that was not particularly positive for my level of MD :-/.

    Of course other things can be going on – infections, tumours etc …. their was a big list.

    I think my long term problems in this area are definitely MD linked – at least that’s the conclusion I’ve come to.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #84728
    Re: incontinence

    I am having similar issues in that I can wee a lot then twenty minutes later have the feeling of urgency again. I am convinced something is pressing on my bladder. I also have a tilted pelvis with some rotation too and it seems to be getting worse. I am going to mention it to my Neurology consultant at my appointment at the end of the month. It is starting to get me down :(

    I seem to have very good muscles and bladder control it’s just I don’t seem to empty it properly and if I have to hang it can give me pain and often leads to neck and headaches because I tense up and don’t breathe properly. Interestingly, I can tolerate the bladder pressure more if I am on my ventilator?? More relaxed and breathing properly I should imagine…

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #84729
    Re: incontinence

    Like quite a number of us, I too have difficulty getting to the loo and de-briefed, quicly enough. I am convinced that there is a

      hormone element [gets worse closer to my period, unless a puffed uterus is what is squashing the bladder],

      a psycholgical element

      Positional adjusting element – I maybe laying down thinking no need to pee, sit up and think hmm better head that direction, then stand and cripes I am gonna pee myself, as if the shift in liquid and gravity makes for leakage.

      Muscles element -whether our backs are curved and shifted, our muscle strength to get about quickly enough.

    I sometimes say to my pal as i am about to stand, it is so hard to pull and push the same muscle at the same time.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #84730
    Re: incontinence

    Apparently their is a wet hand and rain test…. the neurones are really stimulated to cause a ‘release bladder’ function if a) you auditory neurones fire on hearing water (so when it’s raining or you turn on a tap you can actually cause an automatic wet yourself response) and (b) the old trick of putting your hand in water causes the same thing as in you can make someone wet themselves when drunk by immersing their hand in water.

    It really does work and some hospitals play sounds of water to test – so if you can’t go – dip one hand in water whilst on the loo – or turn on the tap. If you don’t want to go so urgent avoid wet hands etc! Bizarre really.

    I also discovered that bladder problems can be related to hormones and cysts or fibroid type things in ovaries – whether the physical size of these also pushes on the bladder I don’t know.

    Slow transit of food through the gut and constipation can also block the bladder or push on it as some of the advice is to control constipation – but that’s a constant with me. My bladder is a lot better if I have bad diarrhoea – so that’s not very helpful really as a solution! Such a pain!!

    I got disheartened to hear that one solution is to self catheterise but my finger dexterity and arm weakness means that’s out. Surgery is really dodgy – getting me down too. I seem to be running out of options to control everything.

    I have pelvic tilt and twist too – if I lay down I get loads more pressure but sometimes it eases of after a while. I also get period like cramps when my bladder won’t empty – fun fun fun!!! Will let you know what my docs say in case it’s helpful.

    I am wondering if sitting by my bubbling aquarium is making it worse – funnily enough this all started when I installed my fish tank lol. :lol: :idea:

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #84731
    Re: incontinence

    I too have toileting troubles and I am very fed up with it! Also I am menopausal which doesn’t help. I have the urge incontinence and the stress incontinence. Sometimes when I pee hardly anything comes out and then 10 mins later I have the feeling of wanting to go again.So to get rid of that I go to the loo and there is hardly anything there. If I have a cup of tea or glass of water I’m going to the loo about every 15 mins for the next 1 -2 hours. How can 1 drink produce so much wee LOL? It’s not so bad if you’re at home but harder if you’re at someone else’s house. So I tend not to drink at all if I know I am going to be elsewhere which is really bad as I am permanently dehydrated. I mentioned it to my consultant but as I was also constipated they thought that maybe that was putting pressure on my bladder. But no two days are the same so I just go with the flow (no pun intended) and cope as best as I can. I think there as tablets available to stop the “urge” but I really don’t want to take them but I will see how it goes.

    Valerie
    Participant
    Posts: 166
    Joined: 15/09/2010
    #84732
    Re: incontinence

    @valerie wrote:

    How can 1 drink produce so much wee LOL?

    I know that feeling! I’ve tried looking for patterns between drink/food with high water content/meds/constipation and nothing seems to link to food and drink! One minute a cup of tea is fine – then the next one has me running for the loo! Same with caffeine free drinks – boiled water has same effect!

    Mind of it’s own pretty much.

    One thing I hate is struggling to get in loo when I’m out, then get clothes off and transfer etc etc – only to find that the ‘got to go’ suddenly turned into ‘nothing happening’ ….. what a waste of energy! :cry: It’s not like we have much spare!

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #84733
    Re: incontinence

    something that really gets me down about it is clothes shopping. Every item right down to your drawers has to be thought about from the point of view of a evacuation plan. “Is it too tight” “is it too loose” “do they ride too high or too low” can one work the buttons :roll: alll before you can deicide if it actually looks good on you.

    I decided not to take the bladder pills as my episodes co-inside with clothing I cant escape from. and it most likely the hip tilt and muscles rather that the bladder function itself as they timed it and it was emptying as normal.

    What copying strategies do youz employ to avoid or minimise… dribbles.. apart from the radar world toilet map. :oops:

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #84734
    Re: incontinence

    @catatude wrote:

    apart from the radar world toilet map. :oops:

    Naa, that lacks absorbency.

    My plan is really just watching what I drink and when, and hope.

    So with you on the clothes situ, every item goes through a questionaire and if there is a hesitation on a question or a no, then ove along, nothing to see here.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #84735
    Re: incontinence

    I read articles on the net today and it had some medical info on pelvic muscles and angles that might be useful so I hoovered up bits and though they might be useful (bit jargonistic).

    Muscles of the Pelvic Floor re incontinence…

    The ability to retain and expel stool is dependent on the muscles of the pelvic floor. The pelvic floor muscles ‘hold’ your organs where they should be and aide in many actions such as childbirth and having a bowel movement. These muscles are under voluntary control. The two major muscles of the pelvic floor are the levator ani muscle (which makes a dogs tail wag) and the puborectalis muscle.

    About Levator Ani muscle:

    The striated muscles of the levator ani form an important element of the structural support mechanism in the pelvis.

    The levator ani muscles arise from the pelvic sidewalls and run downward to form a funnel in the pelvis, helping to support the anal canal, the urethra and in women, the vagina. These muscles are in close contact with the sidewalls of the pelvic organs.

    Angles of the body which can cause constipation… (the angles no one seems to know about!!)
    (Wiki has pictures)

    The puborectalis muscle provides a ring of support around the anal canal at the small end of the funnel made by the levator ani muscle. It has a “U” shaped configuration creating an angle between the anal canal and the rectum. Under resting conditions this angle is 90°, but during straining and moving your bowels this angle moves to 135 °. If these angles are not correct, it may become more difficult to have a bowel movement.

    Constipation and lack of muscle strength:

    The levator ani and the puborectalis need to coordinate properly in order to expel contents from the anal canal. If you don’t have full control over your pelvic floor muscles … you may develop constipation.

    When the muscles aren’t working properly, they can block the anal canal, making it very difficult to have a bowel movement. This can be called an outlet obstruction and pelvic floor / rectopubalis dyssynergia. It is like pushing through a closed door.

    More on muscle weakness…

    Pelvic muscle weakness can be a cause of bowel incontinence. The puborectalis provides a ring of support around the anal canal. The levator ani connects to the sidewalls of the pelvic floor organs and funnel down the pelvis. If these areas become weakened … stool can slip through the musculature and out the anal canal.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #84736
    Re: incontinence

    Wow what a Tour De Force.

    Thanks Louise.

    When you put it all together like this it is all just do logical. Especially the last
    paragraphs. Why is there not more consensus on this from the Medicos?

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #84737
    Re: incontinence

    i have limb girdle md type 2a ,and am 37 years old,in the last 6 months or so i have been wetting the bed almost every other night,my neurologist agrees with me that my md is most likely the cause,but i agree with all of you who have said that is a really hard subject to get anyone to talk to me about,im not sure why this is but for those of us effected its a topic we cant ignore,luckily i am blessed enough to have a spouse who is VERY supportive about the issue,so i hope by having those of us effected with this problem brave enough to openly talk about it,it will help me out with not only the issue of bladder control itself, but as well to find some support of the mental trauma this can cause as well (especially being so young its hard to find others my age who are not only supportive in regards to the issue itself,but i also hope to talk to others openly without the worries of being teased or made fun of) anyway its a great start for me here to even find others like you all who were brave enough to talk about this issue and confirm that it is not just me who is having this issue,so i thank you all for the instant relief you all have provided thank you all for your bravery/honesty-nathan

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #168674
    Reply To: incontinence

    I know this is an old post but I’m just wondering if anyone knows of any developments in the understanding, recognition or treatment of this issue? My daughter is 11 and has had both bowel and bladder incontinence intermittently since around age 6 which has become worse as she has gotten older. On paediatrician’s exam she did not appear to be constipated so it has been put down to a psychological problem. She has only just been diagnosed with FSHD and I can’t help wondering if the two could be connected.

    linmac6
    Participant
    Posts: 0
    Joined: 24/06/2018
    #169415
    Reply To: incontinence

    I have FHSD, and touchwood, no sign of either type of incontinence. But that is just me. I take it that you have looked at any type of psychological problem with her, ruled out stress, bullying etc. If not then you should try your best to speak to her, one on one to try and discover not only if there might be a mental trigger for this, but also how she feels about the problem. That may well give some insight into the origin. Personally I would be surprised that such things are causing fecal incontinence as it would not be the best way to attract attention to others and to herself. Whilst FHSD may not necessarily follow the text book pattern, as in my case, you may do well to raise this with her neurologist to get their take on the problem to see if there is any ‘loose’ muscles that may encourage this.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
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