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147426 tn?1317265632

Adventures in the Sand Box

Two years ago, right after I was diagnosed I went to the MS Continence Clinic because of worsening urge incontinence.  The wonderful, patient and compassionate uro-gynecologist asked me a hundred questions and examined me and told me that she could offer me meds for the problem or have me go through Behavioral and Physical Therapy, which helps a lot of women, even those with neurologic problems.

Hmmm, I sat there and quickly imagined little Kegel barbells, working up a sweat with the ThighMaster, and aerobically cracking nutshells between my knees - all the time with a therapist peering up my skirt and cheering me on enthusiastically.  This all seemed a bit sordid, so I passed on the otherwise enticing opportunity.

In the meantime I soldiered on enjoying the vast variety of my MS's manifestations, but clearly aware that the problem with my Urge's had passed from leaks here and there to times that would parallel the thrill of Niagara Falls.  Tena and I started to become close acquaintances.  I knew I would have to face the doctor and admit that I needed her drill sargeant and pep squad.  I saw her again last month.  This time she offered me a trip on the Urodynamics Thrill Ride and told me that my sphincter was spazzing at the same time my bladder was.  I had Detrusor-Sphincter Dyssynergia.  "What did I want her to do this time", she asked.

It was honestly hard to say that I thought I needed a spot on the Reality TV show - 'How Long Can You Hold It?"   which has been a poplular offshoot of the old Candid Camera.  She agreed.

So week before last I showed up for the show.  I was alone in the waiting room.  Good.  I was the only participant.  At least no one was going to make me look bad.  Ann, the PT was nice.  Too nice - it made me suspicious.  What was she hiding?  Just how awful was this going to be?  I was getting cold feet.  It's hard to slither out of the room when there are three other people in the office and they are all looking at you.  Yuck, I was going to have to go through with it.  Ann reassured me.  Today was only a long talking visit and a check of my back.  That seemed doable.  Hah!  She only said that to get me to let my defenses down.  We talked and I answered all of her questions.  When did I leak?  Where?  How Often?  Doing what? (Uh....while rushing to the bathroom???  Ya think?)

I was all comfortable.  This was going to be easy.  Then Ann dropped the bomb.  Well, she said, "Your bladder is running your life.  You have got to regain control over your potty training.  Yes, we did want you to run to the bathroom when you first felt the urge - but, honey, that was when you were 3 years old.  You're are older now and you need to learn to have more mastery over this basic function."

I sat there impassively, but that voice inside me - the little voice that always speaks the truth was screaming, "NO!!  NO!!!  You don't understand!!  I have MS!!  Something is wrong with me!  My nerves are broken!  This isn't a "behavioral" problem!  My bladder is NOT leading me around by the nose!  I wouldn't let that happen!  I am smart and educated!  I am special!  I AM MASTER OF MY OWN DOMAIN!!!"

"Okay" I told Ann

Ann nodded seriously.  "This is what you need to do.  Everytime you feel the strong urge that sends you lurching, lunching and leaking toward the bathroom, you must DENY it.  You will stand still and do whatever it takes to let the urge pass.

My little voice - sarcastically, "Yeah, like that is gonna happen"

"Okay," I tell Ann.

She continues, "Do whatever you need to - hold yourself, cross your legs, even leak.  But you must wait until the urge quiets down, which it will do.  When the urge is quiet and you can walk normally, you may walk to the bathroom.  If the strong urge returns, you must stop and wait again until it quiets.  Then you can move at a regular pace to the bathroom."

My little voice is not convinced, "And you will come mop up the floor, I presume?"

"Okay," I say.

Ann speaks more animately, as if emboldened.  "After some time of this - not long for some, longer for others, the bladder learns that it is not going to have its way and it will only get relief when it is not hounding you to rush."

My poor little voice has started wandering off, its spirit broken, "When do we get graham crackers and milk?  Can we have a nap then?"

"I see,"  I hear myself answering.

Ann says that I will have to do this until the next time she sees me.  

"oh, joy..." (did I say that aloud??)

"And then," she continues, "I'll do an exam, and we will begin the exercises."  

I am whipped.  Bring on the Kegel barbells, the ThighMaster, and the peering cheerleader.  Ah, h ell!  Bring on Suzanne Somers, too.  She probably doesn't leak.

Then I got the flu.  Fluids and too much time in bed.  STrong urges, scenes of Niagara Falls.  Was it all a bad dream?  Well, unfortunately as the delirium lifted, I realized that I had, indeed, made a pact with the devil.  So, I began the surrealistic exercise of ignoring the location of the bathroom when my bladder began tantrumming.  I would show her! My problems weren't in my head.  Her stupid plan wouldn't work!

The first time I did the bladder-defying routine it was pretty dicey.  I'm glad I was alone.  But, after a minute or so, the spasmy, urge to run subsided and I could walk upright to the proper room.  So I did it again and again.  After a couple days I realized that the urges weren't happening every hour on the hour.  Eventually I could silence them with a simple "Hush!" using the little, inner voice (who even seems pleased at her new-found power)  Please do not press her for authentication of all this.  She would never admit it.

I will say that about 1 in 10 times none of the practice works.  I lose it all no matter what.  I can't say yet what the difference is between the urges that respond and the Urges that cry out, "H ELL NO! WE WILL GO!!"  But, all in all I have a much less uncertain and chaotic life now.  It seems that we can get all messed up with regard to responding to our bodily needs.  Having a body that does just what it wants to so much of the time and so little of what I want it to, I just believed that all of my urge problems were neurologic.  It is a little embarrassing to admit all of this, but a little empowering, too.  I'm still not looking forward to having Suzanne Somers cheer me on cracking nutshells using the ThighMaster, but I will give it a go.

30 Responses
572651 tn?1530999357
Just when I was ready to power down for the night, you posted this insightful -now I wasn't peeking - tale of mastery and domination.  Does it require leather and whips ?  LOL - sorry kids, if you're reading this you better be able to take a joke.

Thanks for sharing in detail - perhaps I will drag out my willpower and try it as well again. I have tried the stop and focus technique, quite unsuccessfully.

Please add a link to this page to that new HP I started of favorite posts so we can find it again and again.

Gotta go,
152264 tn?1280354657
Quix--How amazing that you can take an awful problem like this and make it so darn funny--you are a great writer!

Between the laughter and the horror while reading this, I had visions of puppy training, the piano scene from "Sybil," and my own continual nightmares of being unable to find a bathroom and letting it go on couch cushions.

Congrats on getting some control over your problem!

Gotta go (really),

739070 tn?1338603402
Quite insightful and as usual, very well written. Truly love the sarcastic little voice! You named your testing the Urodynamic Thrill Ride. I named mine (Insert hospital name)"s Little Shop of Horrors since the 'ride' seat was very reminscent of a dental chair and Little Shop of Horrors immediately popped into my mind...minus the drill.

Anyway, I plan to try the techinque you described so perhaps I can avoid the long talk about how we let our bladders control us..yadda, yadda yadda.  After survivng 6 of the 12 scheduled doc visits on my current calendar, I can perhaps skip the bladder babble and retrain my myself.

Thanks for sharing!
562511 tn?1285904160
Thanks for writing about your "adventure." It made me laugh out loud.  The title was intriguing too.  Perhaps you should write a book of memoirs of an MS'er.  
405614 tn?1329144114
"An excellent read!"

"Be sure to read "Adventures in the Sand Box"; an inspiring Tena to triumph story of personal strength.  I laughed, I cried, I peed myself!"

Thank you, you're awesome.

293157 tn?1285873439
this is so funny... I thought you were joking around at first...then I picked up that it's for real... well, even I will try this...and I'm not Dx...but seem to run alot of times to the bathroom...or don't make it there..

thanks for this... and I'll let you know how it goes...

can't wait for Part Two....

take care
634733 tn?1316625992
You are truly inspirational - and never fail to make me smile with that dry wit. Who says that English humour is different to American - I see no differences in this place.

Thanks for the grin and loads of luck with the 'potty training' - but I'd drop the fantasy about Suzanne Somers  - tee hee hee.

195469 tn?1388322888
Thanks dearheart for the huge laugh...and, by the way, I laughed so hard I peed my pants.  Thanks so much...LOL

559187 tn?1330782856
This was a great telling of an a tale many of us can relate to.  I read your post last night and laughed my head off.  I woke up this morning still smiling about it.  You have a way of putting things, even things we aren't always comfortable talking about in a humorous and insightful way.  But, really, Suzanne Summers"  I haven't heard anything about her for years except her exercise thingie.  

I also wish you victory over the bladder ans sphincter and hope maybe that I can get mine to learn a thing or two with mind over body exercise.

Thanks for sharing this wonderful adventure.  You are such a good story teller.  

Avatar universal
Thank you for that, I'm reading it at work and I laughed so hard I NEARLY peed my pants but hushed my bladder and denied the urge!

I also look forward to part 2

198419 tn?1360242356

This is wonderfully written - and in a manner we can all relate to.  Something we can all try to do now that our Master gave it a whirl! Yay!

This has inspired me to finally go now to the PT my Urologist suggested for the spasms.  He mentioned something about stimulation ( oh boy) and how they can manually contract things to "teach" us how to use the right muscles to hold, etc.

Thanks Doc Q!!!!!!!!!!!!! Thank you for taking the plunge!

648910 tn?1290663083
Quix you are too funny.  I look forward to the next chapter.

Laughing, terry
721523 tn?1331581802
Being a college teacher, I can attest to the fact that it workd.  My problem is when I lie down.  Can't seem to ignore it.  I know that if I lay there, I will eventually have to get up, might as well do it while I am awake.  up to 6 times!
Avatar universal
Hi- I am new- I recently learned I have a reaction- issue with histamines- foods-drinks tons of things have it or make your body produce more- this causes your bladder to spasm- its in a chemical in soft drinks- fruit juices- its amazing- when I watch what I drink I am normal - this is a norm problem with people with ms- I read about it on www.*********.net anyway just thought I would share

572651 tn?1530999357
*bump* so everyone can read this tale and can learn that URINE CHARGE!  sorry, I couldn't help myself.

147426 tn?1317265632
Oh, Lu......that's even too sick for me.....lol

(and it took me forever to figure it out)
721523 tn?1331581802
Humor is the best way to deal with things, don't you think?  Just don't laugh too hard....
738075 tn?1330575844
So funny!  But it's true - the "hush" works for me most all the time.  As I'm running for the porcelain pagoda, and it feels like I'm not gonna make it, I stop, stand up straight, close my eyes and say to myself, "you can do this - you can make it".  I' don't start moving again right away, and I can feel the spasm pass.  Then I walk in a calm manner and take care of business.  Often I can stop my leg spasms with this little meditation, but not always.  Thanks for being so darn funny.  A great sense of humor definitely helps!

147426 tn?1317265632
Thanks, guys for your nice words.  I have thought of releasing a book of essays.  Thinking of a couple potential names

"Lies My Neurologist Told Me"

"Alice in NeuroLand"

Nancy - I also have vivid dreams of searching for bathrooms and relieving myself in inappropriate places.  

Opie - You bring up a point that "Ann" was very firm about.  We must not relieve ourselves to prevent problems later.  So no more going to the bathroom just because we are awake.  I dare not tell my mom of this breach of her most sacred teaching - getting empty before ever leaving the house.  Mum's to word to Mum.  Ann says that by urinating when we don't really have to is just more inappropriate response to the bladder's sensation - or lack of sensation - that it is full.  This is a hard one for me.  But, last night I awakened and did not have much of a sensation of fullness.  For the first time in - well, forever - I went back to sleep without a trip to the Pagoda.  It worked out okay.  I learned that the sky really won't fall if I don't take every opportunity.

When you are on your back, try pressing against the urethra to give yourself an idea of where to send your "Hush" messages.  See if that allows you to quiet them.  Also, accept that for a night or two you might have to awaken more if the urge hits.  Don't let the "inevitabililty" of it drive you to get up while you are still awake.

gogreece - You are completely right about bladder irritants.  The classic foods that cause the bladder to be jittery are citrus and caffeine.  But, I suspect there are others also.  Oh, and a very bad solution is to stay a little dehydrated to keep the urges from developing.  Wrong!  Concentrated urine is very irritating to the urethra.  This can cause the urethra to spasm and wreck the whole deal.  Stay normally hydrated.

I see the PT again tomorrow.  Suzanne Somers' appearance is not confirmed.  Second Chapter to follow.

721523 tn?1331581802
Keep us posted!  And don't hold it against me that my name is "Ann".
147426 tn?1317265632

Okay, I saw Ann again last week, and she was thrilled that my little voice is harnessing my bladder and honored that I had immortalized her in an essay.  She wants a copy.

Notice:  This is a very frank and graphic discussion of the mechanics of assessing the strength of our most intimate muscles.  Please do not read if this if it would embarrass or offend you.

The next phase in the Bladder Retraining is strengthening the pelvic floor.  This is the classic Kegel Exercises.  Before I get into the nutshells and bolts of the visit I want to explain why having a strong pelvic floor is important and what the pelvic floor actually is.

I don't intend to get technical here nor is this planned to be humorous.  My little voice got all out of control and began making gross comments while I was planning this, so I sent her and Dr. Kegel out to make whoopie.  I can hear them giggling as I type.

Think of the pelvic floor as those muscles that keep our undercarriage in place.  They are the muscles that squeeze together and both voluntarily and involuntarily.  They nip off the flow of urine, tighten the vagina, and tighten the anus.  You can picture them as making a double figure-8 around the urethra, the vagina and the anus.

One way to identify them is to tighten up down there as though you are tring to keep from peeing or to tighten your rectum.  When you sneeze, laugh or cough, the pelvic floor muscles tighten reflexively (involuntarily).   As we age several things can happen to weaken the pelvic floor.  Childbirth is one of those things, but a study of nuns showed that older nuns have as much problem with weak floors as do women that have given birth.  Obesity, gynecological surgery are among other things that can weaken the floor.

Why do we care if the pelvic floor is weak?  Well, it keeps our stuff from falling out, that's one reason.  A strong pelvic floor allows us to keep our urine from spilling out so we can stop investing in nutshells. When the floor is weak it causes Stress Incontinence.   It also aids in satisfying sex and helps us from losing stool at inopportune times.

We tend to squeeze all of the the muscles of the pelvic floor together, but we can squeeze the rectum apart from the muscle in front.

Weakened pelvic floor muscles are one of the primary culprits in "Stress Incontinence."  When we laugh, jostle, sneeze, cough, and bounce, if the floor does not tighten up, the increase in abdominal pressure pushes the urine out.

I also learned that the pelvic floor plays a role in helping to retrain our bladders not to be so spazzy in Urge Incontinence.  It turns out that when you feel the urge to urinate, but it is not the "right place," if you tighten the muscles of the pelvic floor it causes a reflex "relaxation" of the detrusor muscle in the bladder.  So this was the next step in learning to not be led around by the nose by my bladder - part of the "Hush" technique.  I let my inner voice hush the bladder into submission, but I also am learning to tighten the pelvic floor to add more signals to the bladder to help it relax.

My second visit to the Continence Physical Therapist was more than just talking.  After having me sign a consent, she examined me much like a gynecologist would.  I was prepared for this and I understand why she needed to, but I could imagine that some women would be taken aback.  She assessed the strength of my perineal muscles, by seeing if I could tell where she was pressing and also by how hard I could squeeze and by how long I could hold the squeeze.

I pretty much got an "F" on this test.  On a scale of 0 to 5 with "0" being no movement at all and "5" being able to crack nutshells, I rated a "1."  On being able to squeeze I could hold the first for 6 seconds, but then progressively fatigued until by the 5th try I couldn't squeeze at all.  I wasn't too surprised by this.  I noticed about the time of my first MS symptoms that I have very little feeling in my undercarriage and had lost the ability to squeeze.

So, my homework for this week was to do squeezing exercises with reps and sets.  I am to squeeze and try to hold for 5 seconds and do 5 reps and 2 sets.  I'm supposed to do this three times a day and I am trying.  Sheesh!  I hardly remember to take my pills.  I have post-its all over saying to squeeze, but half the time I read them and can't remember what they refer to.  But I am trying and I think I'm making good progress.  The sensation is becoming more definite.  My inner voice is convinced we are training to enter the Ms. Pelvic Floor Universe competition is is really jazzed.

Any of you can look up the Kegel Exercises online and get the basics on what to do.  Even though I know I have some neurologic deficit "down there,"  it is clear that I can strengthen something and help myself with my incontinence.   When you do the Kegel exercises, it is important that you do NOT squeeze your thighs together and you do NOT tighten your abdominal muscles.

I have to report that I have had NO episodes of urge incontinence in the last week.  My life is soo much different.  For one thing I can throw away all my nutshells.   I had no idea before all of this that there was so much I could do to help the problem.  I'm a little ashamed that I could have done all of this earlier, but I was so convinced that it was neurological.  And thank you to all the people that have told me (us) that they are trying the exercises and seeing some improvement.  Even a little improvement is wonderful when it comes to incontinence.

Well, I have to go retrieve my little, inner voice.  She likes to comment on things I write and is going to be p!ssed - so to speak - when she finds that I wrote all of this without her snide observations.  I think Dr. Kegel left her once he got his.

So, that is the latest in my efforts to better myself.  Not only are "urine control," but I am, too.

Next appointment is on Thursday.

739070 tn?1338603402
Thanks for "Part Deux" of your bladder boot camp experiences. You offer great explanations and advice. Thanks!

Off to do my Kegels.....

572651 tn?1530999357
You don't suppose Ann will want to charge us all a fee for her expertise and therapy lessons, do you?  This has been very helpful - I see my urogyno on Friday for my annual checkup but I'm sure we will be revisiting my bladder issues as well.  I do have issues still but not as frequently as before my acupuncture treatment and reading your retraining experiences.

Here's another assignment if you feel up to it - how about the interconnectedness between bladder and bowel problems and the pelvic floor?  I find nothing about those three topics together, but there has to be some connection.  I find the constipation issues impact my bladder in not so kind ways. Don't they all work off the same nerve bundle?  


147426 tn?1317265632
Thanks for your comments.  I still am afraid that my blurbs here were somehow offensive.  I really hope people were not put off by the topic nor my approach to it.

Lu - We have talked a little before about that topic, but I could try to put it together with some description of which nerves affect the two functions.

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