MS: Bladder issues stats are over 80%

[supermum_ms]

Hey Guys and dolls

The statistics on bladder issues are pegged at being at least 80% in MS but it's one of the least likely issues to be raised, so lets rip the band-aide off together, and talk about this problematic pink elephant and help each other......

I will first admit that whilst I am typically willing to discuss anything with anyone, because i'm definitely not shy or feel embarrassed about the human body but for some reason, i'd rather rip my tongue out through my eyeballs, than have a serious open discussion with my sweety pie-older-male-doctor about my bladder, bowel and lady parts. I've long past reached the stage where i can honestly keep putting it off but still that is exactly what i'm doing and i need to get past this mental block and just put on my big girl (incontinence) panties and deal with it!!  

I think I posted back around September 2014 about dealing with bladder issues, it was just heating up over here and i really, really, REALLY wanted to blame it all on the heat, like i did the first time urine was running down my leg without any normal warnings the summer before. Whilst we were away over the Christmas new year period, i ended up having to put a chair in the water and remain there as much as possible, because my bladder was just continually trickling away. So yes heat effects my bladder but i'm deluding my self if i overlook everything else....

There is definitely no pressure behind the leaking, the urge incontinence i'd been dealing with for years, was now not even letting me get to within koo-wee of the bathroom, it had changed to become an instant trickle and a desperate race to minimise how much clothing I had to change, on a good day I at least saved my shoes. lol Seriously it's like my bladder mechanics has gone haywire on me, i can have a coughing fit, laugh (multiple times a day for moi) or what have you and i've never once leaked, this type of incontinence has no trigger, no rhyme or reason it just happen's.  

I have tried every and i do mean 'every' known tip and trick, behavioural technique there is and even when i'm like a dog with a bone and not giving it up, still nothing non medical has helped get this train back on it's rails, even a smidge!

I had a date night, so went out and bought the better reviewed incontinence briefs because of how discrete they are claimed to be............okay, size small was still gigantic for my size, no joke they came up to my collar bone and were as discrete as wearing a loaf of bread. It was suggested that i'd be better off down sizing to kids transitional pull ups ie nappies NO WAY will it help my head space to be wearing kids nappies.......and i'm sure it wouldn't do much in the romance department either lol err kind of you to suggest it but hell no!

So now i've just discovered i'm wearing wet clothing, i'll change for the second time today and leave the door open to you :D

Cheers........JJ

[jensequitur]

Just weighing in... since the birth I've had less problems with incontinence. Instead of just peeing when my bladder's full, I can actually make it to the bathroom. I also don't wet myself when I cough unless it's a deep cough. I still have problems with relaxing the bladder enough so I can pee, and I'll have to push. I'm still wearing overnight pads 50% of the time.

I think the main problem with incontinence is that what's the point of talking to the doctor? It's not like they can give you a pill and fix it. No, it's self-cathing, and I don't want to go there. They cathed me in the hospital when I wasn't peeing enough and that was extremely painful.

[essdipity]

The stimulator referenced in the article is something placed on the abdomen as needed. Nothing internal.

ess

[torikat32]

Had my uro appointment today botox #3 in June. Even though it didnt completely freeze my bladder it really helped with the oab symptoms.  We also talked about the spinal stimulation thing sorry forgot the name but she  doesn't know if it will work because MS effects the nerves and this stimulates the nerves and you wont be able to have a mri from neck down may not be a good thing. She said there has not been alot of research done on this and ms go figure but will do botox and I can do it every 6 months for life if need be

[essdipity]

The website you reference is excellent in explaining how the bladder works, or doesn't work.

I have never heard of the bladder stimulator, which can always be used just as a vibrator, if worse comes to worst.  ;-)

Thanks for posting this.

ess

[ConfirmedRachel]

Grr, meant to end by saying I really hope it helps!

N xx

[ConfirmedRachel]

Hi JJ

Not sure if this will be of any help as I'm sure you've done heaps of research already. It's the UK MS Society booklet on the subject, 1st line and beyond.

http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/Managing-bladder-problems-Feb-14.pdf

[supermum_ms]

I have to admit to being a bit unimpressed with the information available on bladder, bowel and sexual dysfunctions. Though that could be because it's all standard stuff and once all the tips, tricks, behavioural modifications, dietary changes, water consumption etc etc have been done and dusted, the solutions basically are limited to incontinence products, meds, cath, botox and one other that i can't recall the name of.

This msif pdf is actually not bad, unlike a lot of the others this one seems to be combined with the basic explanation of functions, standard first line treatments, medical treatments and it has disclosed finding from a large 2014 world wide research project, with a few patient questions and answers at the very end, so all in all it's worth reading.....  

http://www.msif.org/wp-content/uploads/2014/09/MS-in-focus-24-Bladder-and-bowel-issues-English.pdf

Cheers......JJ

[slaytheday]

Hey J.J.  

  You're to be commended for broaching this subject.  I read what you had to say and thought "kindred soul sister"!

  I've had this peeing problem about 3 years now.  I'm going broke on buying "funderwear" although I buy Assurance brand from Walmart & don't have the size issue you do.

  The word "incontinence" doesn't cover this.  We need a new term for having 2 seconds warning before flooding starts.  I have tried 4 medications so far but I'm seeing urologist this week.  I've had many tests of bladder & it seems to be the healthiest body part I have.  I will look up botox beforehand.  

  I sometimes change all of my clothes except top 2 - 4 times daily and/or nightly. Lots of laundry gets done here.  Bless my lady's heart.  I can barely walk.  When I go out I use a wheelchair.  I don't go out much.  Drs. appts. are my social life.

  Anyhow, I don't know if this common MS problem is caused by brain or spinal lesions.  I do know the medical community should be doing something!

Blessings,
  Melinda
  
  

[supermum_ms]

I have learnt.......

Listen bladder, ain't no mountain high,
Ain't no valley low, ain't no river wide enough bladder
If you need me, call me, no matter where I am,
No matter how far from the loo; don't worry bladder
Just give me the urge; I'll be there in a hurry
You don't have to worry,

Oh baby there ain't no mountain high enough,
Ain't no valley low enough,
Ain't no river wide enough
To keep me from getting to the loo....lol

Cheers........JJ

[aspen2]

LOL!

[essdipity]

I sent an email memo to my bladder:

     To:  Urethra Franklin
From:  Me

Gimme some R-E-S-P-E-C-T!!

Still awaiting a reply...

[karryon55]

I seem to have been through every possible bladder problem since my early 20's. I initially suffered the inability to pass urine at all which meant I had way too many indwelling caths in my life. This seemed to have settle since my late 30's but I've since suffered from incomplete emptying, frequency and nocturia.

I tried my best to retrain my bladder with the frequency but then sometime last year I lost all ability to know if I needed to go at all (lack of sensation & signals from the brain) which the took me back to retention and incomplete emptying. I learnt to self catheterise and have not had any infections since. I had been having constant UTI's since 2012 so being free of them has been a wonderful feeling.

I have since developed the urge incontinence which has to be the worst of all because I am only given seconds between I want to go and oh no I'm going which was new to me. This has settled down in the last few weeks and I'm now back to not having any feeling or desire to go so I have to time my self caths so I don't keep stretching my bladder.

Now I thought it wasn't possible to have been through most of the neurogenic bladder problems and thought maybe I was losing the plot but I met a lady in hospital who has the same mixed bag as me.

The bowel has been a problem for me since my late teens where I have suffered constipation. My surgeon has said it has never been about fibre for me rather I'm just not getting the messages to go. I recently (last 6 months) have been getting diarrhea so I thought I had just had a complete change in bowel habit but unfortunately I am still constipated or rather have impaction, fecal loading with overflow.

This I can't seem to get to settle as I still have diarrhea daily, abdominal pain and cramping so I am going to ask my GP what I do from here. I don't know if I'm impacted still or not.

When it comes to sex I guess as I've been single since my 20's and have had no sex drive since I am lucky in that regard. I seriously could have worn a habit and become a nun lol. :D

I am awaiting another urodynamics testing but I'm not holding my breath. Oh and the bladder or urethra spasms are an absolute nightmare and I sympathise with those who get them.

Great topic JJ!! I think most can relate in some way and the humour is always helpful. I didn't try that as I'm not very funny.

Take Care,

Karry.

[supermum_ms]

Humour and optimism has got me and mine through everything, not sure what my life would of been like with out it to be honest.....

Ess i've seen some public bathrooms that were so so bad, that i've been compelled to walk out of the petri dish and not risk getting involved in the 'how disgusting can humans be' social experiment. I'd rather wet my self than expose my lily white bits and pieces to that much environmental pollution, it boggles my mind how they can even get into such a disgusting state!  

If you are female, UTI's can basically come with the territory, simply because of the close proximity of the female anatomy, bladder and sexual dysfunctions in females becomes extremely common after childbirth. Female related dysfunctions can be hormonal, weakened pelvic floor, trauma, physiological,  etc with related bladder issues usually things like UTI, cystitis, prolapse, behavioural, nocturnal, stress incontinence etc.

Keep in mind that Urge and Overflow incontinence are not unexpected or necessarily a sign of a bigger issue, because they are associated with the more common bladder issues, though sometimes it's a combination of issues or a domino effect.......ahhhh what came first the chicken or the egg :D      

If you are male, whilst i have worked out the male anatomy in no way, shape or form looks or works the same as females (doh) males do not 'generally' experience bladder and sexual dysfunctions as commonly as women do, but when males do experience these issues, the attention it generates is totally different, possibly due to the limited causation and low commonality in males compared to females.  

That is actually a very good point, the medications you take for one issue, could actually be effecting your bowel, bladder and or sexual function, so it's probably a good idea to know if this is a possible situation, and if it is, i'd recommend you consider discussing and finding out if there any alternative options which are suitable to your needs.....

I have been on a journey of understanding but it's very late over my side of the world, so until tomorrow :D

Cheers........JJ

[torikat32]

I have over active bladder have failed botox twice now. After all the uro testing I have a smaller than normal bladder size and now with the oab I have retention as well. The postions I have to put my body into to go pee is crazy. Self cathing has been ok. Bowel problems like most have been once a week and then its gut wrenching pain whe I feel the urge to go. A few weeks ago at a family dinner I pooped my pants no warning or anything I see uro Wednesday so will let her know. As far as sex irs been 3yrs hubby doesnt bother asking anymore no desire no energy you name it . Uro said next step is bladder augmentation im not going there if I can help it.

[HVAC]

I wet the bed this week. I woke up soaked. I have to pee the minute I think of it. It is instant. I try to go every half hour or so. I do wear depends at times.

Alex

[aspen2]

So funny -- thank you!  My bladder issues are in the mild-moderate range at present, however for six months last year I was investing in TENA big time ... until I had to get an indwelling cath because I couldn't ... umm ... always an adventure.

And don't get me started on the urodynamic testing!!!

[4happygnomes]

I love all your candor and humor!  At least if I had a dx, I could blame my low libido on MS!  It's a good thing we had the 4 kids when we did, because if we waited any longer...we would be childless...'cuz we all know where babies come from, and it isn't from the stork!  ;-)

[doublevision1]

My only problem in this realm is urinary hesitancy caused by nortriptyline. It's not quite as bad as when I took amitriptyline. When I miss doses the problem goes away. Unfortunately I need the drug to manage neuropathic pain. It's a lesser of two evils situation.

[Joiedecour]

You all have such amazing attitudes, and honesty, not to mention sense of humor! I had one emptying problem, which happened after I'd just been to bathroom, so I called in about it. My primary did a test for UTI and then pretty much ridiculed my concerns so I totally identify with anyone not wanting to share with docs especially male docs. I felt so humiliated I changed primary and haven't told another soul.

[supermum_ms]

Oh baby don't i know it, lol your speaking to a paid up member of the not interested in sex club, though an unexpected SURPRISE once the drought was suddenly over, was a period of heightened sex drive..........which lasted up until ooooh September last year when i sprung a leak :D  

I know i'm really into brain plasticity but lol i think my rewiring might have got a tad confused, i'm reacting from the absolutely unexpected things ie gentle massages and lol who knew touching one lady part could set your leg off a jerking, err well hubby does, poor boy must be sooooooo confused ROFL.

I'm all over the place, some bits and pieces are overly sensitive and others have lost sensation and then i get weaker and weaker the hotter hubby gets, sex has become a humorous game of chasing O's before she burnt toast, lol i've sometimes fallen over on my face cause my legs gone again :D
      
Keeping it real........JJ

[Corriel]

Cool topic! Lol.

I am starting to re-evaluate my overactive bladder which I have had since before my dx.

I urinate 12 times a day with minimal coffee and water and as soon as I try to drink more fluid I pee about 23 times a day. I am starting to get concerned about my kidneys because I must be dehydrated most of the time.

More than a little leakage usually when it is time to sprint (as much as I can anyway) to the nearest bathroom.

I have had IBS with diarrhea for years and the incontinence there has caused me some horribly embarrassing incidents (twerking the hand dryer in the ladies room to try to dry my pants at work was a highlight).

I probably should mention these to my neuro or GP but I always seem to have more pressing issues to discuss.

Sigh, life sure gets complicated fast. :-)

Corrie

[essdipity]

Well, I have a helpful way (for me) to avoid talking about such issues to doctors, other than mentioning I have them and they're worse/better/the same. I just dump all this on my uro-gynecologist, a woman. I don't think my neuro, for instance, is very comfortable in this realm, so once I remind him I have medical intervention for this, I imagine he feels he's done his duty and we can drop the subject.

As for the uro-gyno, well, that's what she signed up for :-)  I remind myself of that often, especially when it's time for the dreaded quicko rectal exam. Though that part has never actually been a problem for me, one never knows, and I consider that anyone who goes in for that kind of work deserves whatever might happen :-)

In any event, my bladder has a mind of its own. It's sneaky to the max. I do get warnings, but the interval between warning and disaster can be 2 seconds flat. At home I run as best I can. In public, several times I haven't made it, though only once was it quite possible I made a spectacle of myself. Quite often my bladder lets me know I've emptied it, so all's well, only to call me back for another flood 10 minutes later, etc. Not funny, bladder!

Another issue I have is an aversion to public facilities. I don't know why, as many are quite clean. So if I'm out somewhere and don't feel any urges, I figure I'm in the clear. Several times this conclusion has proved foolish in the extreme. I'm constantly making mental notes to self: Find a restroom regardless.

There are times when my bladder decides to be shy. Then we have lots of starting and stopping, with me sighing, 'Let's just get on with this!.' Of course that doesn't help at all. But all of these annoyances are as nothing to me in comparison to the mean streak my bladder most definitely has. Then it starts to spasm so painfully. I'm accusing the whole waterworks here, probably unjustly, when the real culprit is the urethra. Yikes. This is only an occasional thing, thank heavens, or I'd be in big trouble.

Many years ago I had all the uro testing, using all the machinery, printouts of charts and all. I flunked big time, not to mention the indignity of it all. Afterwards I took myself out to a lavish lunch to make up for it.

I'm lucky that if I'm quite careful I can avoid disasters such as those described, and haven't had to go the botox route, which has been very helpful to some people here. Quix used to post often about her mops and buckets and suitcases accompanying every outing with complete changes of clothing. I'm not sure if she's doing the botox thing, and in any case that's up to her to comment on, or not. But I would certainly try it if push comes to shove, or rather if accidents come to disaster.

Bladder problems are part of what I consider my background MS. Other issues in this category are my relentless overheating and subsequent major perspiration around scalp, face and neck. I also have extreme dryness of eyes, nose and mouth, also attributed to MS after a huge amount of testing. I have meds that help this last thing somewhat, but I have to be careful or I'll set off the sweating. Then of course the relentless fatigue, the poor sleep, the (relatively minor) problems with my right leg, dizziness and balance stuff. And a few more odds and ends. These things are with me every day, my new or not so new normal. How I hate that phrase. Sort of smug, isn't it, always offered by neuros who have none of the above.

It's when something truly new is added and sticks around that I know I'm in a relapse. For me, though, such things come on subtlely and very gradually get worse, till they very gradually get better. Often there are 4 or 5 months in between. 2014 was a nightmare, but thus far 2015 has been pretty tame. I'm hoping Tecfidera is the difference.

There's my whine for the moment. I don't indulge too often, but I'm quite capable of a major mental tantrum, and it's very freeing.

ess

[bbassel]

This was a great topic to wake up to! Lol. I haven't wet myself but have come very close.

The worst was recently having aan ultrasound of my lady part. First I had to drink lots of fluids and then hold it. At this time a nice technician is pressing very hard on my abdomen.

I had to have two pee breaks in ten mins. Not fun.

I also have problems with bowels and sometimes it is once a week as well. Crazy.

I just wanted to add that I have no desire for anything sexual either. I am luucky it is just me and I don't have to go there.

All the best,

Barb

[immisceo]

The week before I landed in hospital for an MS episode in 2010, I wet myself for the first time since I was a toddler. Twice.

Looking back, it's surprising how little I thought of it. Probably because I was in my own single-story home, so nothing too distressing happened. Plus, I'm a bit of a dab hand at explaining things away. Those have been the most obvious issues on that end of things. But oh. my. god.

the constipation. That's been my more obvious 'below the waist' issue. I'll sometimes realise it's been a week. Like you, I've done my bit. Upped my fibre, upped my liquid intake, taken gentle laxatives. I've just gotten used to the fact that more times than not, when the urge finally comes... "There Will Be Blood".

As for your issue, I know Laura had a good experience with botox. Is that on the table for you? I think the days of baggy breeches are numbered. We can but hope!

As for other things that get short shrift in MS discussion, SEX. I basically feel spayed. My husband and I are fine. No financial worries. Fulfilling jobs. Love and affection. No kids. And yet... I'm just not up for it. Like, ever. Talk about guilt! My husband never forces the matter, obviously, but it makes me feel like an inadequate wife and basically sub-human. Here's this thing that makes the world turn, and everything is lined up for me to have a worry-free, fulfilling sex life, and it's just not there.

Zero drive, zero lubrication, precious little sensation. I acknowledge that erectile disfunction is more obvious, but I wish people wouldn't neglect that women who are unable to 'perform' also have a crisis of identity! Especially when that ol' wives' tale about women hitting their peak in their mid thirties is quoted so often.

So, yes. This little saunter down the darker corners of MS reality is a welcome addition to the conversation. MS below the waist: It's not all about legs.