Some Thoughts About Controlling Your MS Bladder
Photo by Shutterstock Though it may not make sense, staying hydrated is good for the bladder.
There are two types of people with MS: Those who have bladder problems and those who will have them. That may be an oversimplification but I’d be willing to bet that you, like me, have had that gotta-gotta-go problem too many times to count. Sometimes you make it to the loo, sometimes you don’t. And if you do make it in time, the urgency might then become a now-I-can’t-go problem.
So I want to share some excellent information about bladder control that comes from Prof. Gavin Giovannoni at Bartholomew’s Hospital in London. The full blog post is pretty long, so here are the basics.
Two muscles are the key
The bladder has two muscles that need to be coordinated for it to function normally. The detrusor muscle relaxes or contracts to allow the bladder to fill and expel urine. The sphincter muscle works like a valve to control the flow of urine out of the bladder. But we all know that MS messes with the signals from the brain that control muscles like these and so …
Bladder frequency and urgency
Frequency, according to Dr. G, is the most common urinary problem associated with MS. It happens because the detrusor muscle can’t relax. It goes into frequent spasms and acts like the bladder is full even when it isn’t. So, you feel like you have to urinate, day and night, even though there may not be much urine in the bladder. Going hand-in-hand with frequency is urgency … the feeling that you need to go right away.
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Hesitancy
Hesitancy is caused by a sphincter that’s not coordinating with the detrusor. You want the valve to open but your MS is keeping it from getting the message. You want to go but you can’t. Or the sphincter closes, midstream. Or it decides to finally open just as you decide to give up and leave the loo. You can also blame dribbling on the sphincter.
Treating bladder problems
For hesitancy, Dr. Giovannoni lists several treatments, including alpha-blocking medications such as tamsulosin and a nonmedicinal treatment like a bladder stimulator. It’s placed over the pubic area to relax the sphincter. Pressing on the lower abdomen can also help. (I’ve used this technique). He even mentions running water in the bathroom sink to help relax, though he admits this can be a bit of a problem in a public restroom.
Oxybutynin is one of the medications used to treat frequency/urgency. But, says the professor, this class of medication often causes dry mouth, can make you constipated and can exacerbate cognitive problems. It can also result in your bladder relaxing too much, resulting in urinary retention. Dr. Giovannoni prefers a new medication called mirabegron.
I’ve read a lot of chatter on social media about Botox. Injections of Botox into the bladder paralyzes its muscles, reducing or eliminating urgency and frequency. Urine is removed using self-catheterization. Many people with severe bladder problems are strong proponents of this treatment.
Avoiding urinary tract infections
Bladder control isn’t only about comfort and avoiding embarrassment. It’s also about preventing urinary tract infections.
According to Professor Giovannoni, “The more infections you have, in particular, severe infections, the more likely it is your MS will progress.” So, you want to empty your bladder. But there’s something else you can do to avoid urinary tract infections: drink water, lots of water, to flush the bladder. That may be seen as counter-intuitive to people who have frequency and urgency problems, but when I drink more water, my frequency and urgency reduce. It’s hard to do, but I try to drink more water, not less.
Any hints?
What do you do? Please share your suggestions in the comments box.
You’re invited to visit my personal blog at www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Gawie Marx
Please wright about erectile disgunction in MS
Ed Tobias
Thanks for your comment, Gawie. I'll consider that for a future column.
Ed
Alan Abramowitz
I've now had diagnosed MS for over 30 years. A little over 3 years ago I finally had the Botox injections for bladder control. WOW!!!! What a game changer. No more waking up every 45 minutes to go to the washroom at night, no more rushing for a washroom, no more ALWAYS finding out where the washrooms are whether that be in a restaurant, shopping mall, theatre or ANYWHERE we went. The utter urgency, frustration an embarrassment were gone. It took me several years to finally get up the nerve to have this procedure but I promise that my life has changed ever since and totally for the better. I had tried every possible drug out there but the side effects were brutal. No more waking up in the night to go to the washroom or trying to seek out the closest table to the washroom or wondering whether or not I should go to any and every washroom as I passed it.
Totally recommend Botox if this issue is effecting your life.
Ed Tobias
Thanks for all of the info, Alan.
Does this require you to self-cath? If so, how difficult is that for you?
Ed
Nancy
I had the injections done about 6 months ago. I have never had to self cath. It was a real life changer. I really didn’t know how much bladder issues had changed my life!
Mark
This is very helpful, thx Alan
Mark
I suffer from this badly ... To reduce embarrassment I do the obvious things, namely drink less coffee, drink less going into evening. I also use a catheter.
I become anxious when traveling and doing particular things ... This makes my urgency worse.
Mark
As a man I never thought about sitting to urinate. My wife suggested this and it does help. For some reason sitting to urinate helps me to completely empty my bladder.
Ed Tobias
Good tip, Mark. As a man, I agree. :-).
Ed
Christopher
It stretches out and tilts the pelvic floor muscles, plus the downward pressure from the abdominals, making it easier to urinate.
Barry
Can work. But I have also found that sometimes I get frustrated whilst sitting down (in not being able to urinate), then when I ‘give up’ and stand and pull up strides etc I can then urinate - standing. But totally agree, sitting can also work really well (especially at night when you may have balance problems). Whatever it takes.
Anna Chafe
Botox, Botox, Botox! I too have had Ms for over 30 years. I can now drink as much as I want during the day and not have to go every 5 min. and no leakage. Drinking now helps with constipation!
Good luck everyone as to what you decide but what do have to lose. ?
Cyndi
Do you have to self catherize? How often? Botox procedure done in urologist office or by neurologist? Thx for sharing!
Cyndi
Urgency & frequency issues now dictate my life. It has now become my most significant fear/anxiety about traveling. Presently, it is my greatest hurdle in planning a trip to Normandy. Being in a foreign (to me) country with unknown ready access to bathroom locations is an overwhelming stressor to me - sad but true. I’m seriously considering Botox but do not want to have to cath or risk UTIs (especially since I don’t have that problem now). No answers here… Just my comments.
Ed Tobias
Hi Cindy,
I understand your concerns. I've traveled in Europe quite a bit over the years. I keep wear Depends (for men) and keep some extras with me. If we're touring special places we've hired a car and driver/guide. It's more expensive than a standard tour but it allows me the flexibility of being able to stop and go when I need to. Telling the guide of my special need, in advance, allows him or her to be thinking of where the bathrooms are, taking that stress away from me.
I don't know if that will apply to your trip but it's certainly helped me. Also, check out the smart phone app called "Flush." Really! It locates places to go, worldwide, and it's free.
Cyndi
Thanks -- love the tip on Flush app. In process of selecting driver/guide for Normandy and have just informed him of my less than special "special" needs -- we'll see if he's still interested. Two weeks in UK couple years ago with no problem...but that's the UK. Debating on trying Botox before trip - am just suspect on hoping it will be the be all, cure all. With MS I no longer believe in such an easy one step answer. Thanks again Ed.
RG
Cyndi, I read about 2 apps WC/Toilets is one, and Toilets Finder is the other. This article is pretty funny (and worrisome!) regarding different toilette designs.
http://frenchmamma.com/2012/02/02/french-public-bathroom-instructions-for-women-i-am-to-do-what/
Checking in on pee place.com
https://pee.place/en/l/Frankreich/Metropolitanes-Frankreich/Normandie
Have an awesome trip! I know you'll be prepared so once there, put the pee places aside and drink in the ambiance!
Cyndi
Thanks RG! You've inspired me to make this trip happen and stop worrying about where is the next pee place.
Tom
My urinary traits returned to 95% normal after two weeks on 100mg Biotin three times per day. I started in 2015 and have continued.
Donna F
I tried Botox. On one hand, it was liberating- no more indwelling catheter, hoses, and bags! On the other hand, it was awful. I am unable to walk and transfer on and off the toilet. I could not catheterize myself while sitting on the toilet. So, it meant getting on the bed, pants off, and being intermittently catheterized by my husband at least five times a day. Frustrating! To drink sufficient amounts of water (I require much) I was also soaking many diapers between catheterizing. It pretty much confined me to the house or dehydrating to be able to go anywhere. I did not get a repeat injection of Botox.
JONI MERCADO
Are there any bad side effects from the Botox treatment & how often is the Botox treatment needed?
Liz
Hi no side effects, lasts for 9 to 10 months, done by urologist, takes about 40 mins max, excellent but a uti will stop botox working
David Anderson
I’ve had excellent results with Myrbetriq although it is pricey. I take it every other day with good results.
Kimberly
This has been working for me. I wipe with toilet paper and then I can go. I wipe, go, wipe, and go again. I don't know if it'd work with men but it helps me to go.
Jeff Gregory
To all neurologists. The human genome - mapped. The medical community is capable of thinking outside the box. Re programming the Lingo-1 Li81 FAB Complex using Leucine as a way to communicate and BIIB033 as the blocker. Key - mathematics. Variable dosages. Think of the human brain as the hard drive. Lingo-1 sequence as the software. 601 signals. Nothing is broken. Figure it out.
Paula. Mieczkowski
Really Jeff? Explain in English what you’re saying.
Stacy
?? !!!
Sue Morris
For many years I had dreadful continence problems (mainly due to retaining about a pint of urine) which prevented me from leaving the house for more than an hour if at all. I was having to change so frequently that I couldn’t keep up with the washing.
I also experienced muscle spasticity in one leg making the simplest of actions (eg getting in/out of bed extremely difficult or impossible without help.
All that changed overnight when I started taking CBD oil. It’s nothing short of miraculous- I honestly can’t recommend it highly enough.
Cheryl Bowman
Is the CBD oil still helping with incontinence? I might try it if you say it’s still helping!
him
Hello
Could you suggest what brand pf CBD do you take ? My daughter has incontinence issues .
Thankyou
Debby
I have found modifying my diet has helped with the frequency to go to the bathroom. I found cutting out salt from my diet helped straight away and stopped 'phantom'urges to urinate too. I also have cut out spicy foods and acidic foods as these seem to irritate my bladder. Keeping to these modifications makes the issue generally manageable with the help of medication too. Sometimes I just have a curry to enjoy something tasty and make sure I'm not going too far from a loo the next day!
Paula. Mieczkowski
Was in the clinical trial for Botox many years ago. In Pittsburgh PA. Lived about 25 miles from hospital. After the painless procedure got in car for trek home. I knew right I had received the Botox and not a placebo. Having MS I was accustom to wetting myself. Five miles into car ride I knew that I would have the urge to go. Knew this because the inj. of Botox requires plenty of saline. When I didn’t feel the warmth of the urine coming out I started laughing then crying tears of joy. Don’t remember exactly how much I received of the Botox with the first trial however it lasted 6 glorious months! Returning for post exam was such a joy. Forget the details of returning for the trials but all in all I kept up with the injections for many years. Actually over at least 15 years of happiness. Self catching is a no brained for all you rookies. Sure it’s painful for a few months but don’t give up! It’s so worth it. Inserting the cath on a schedule and being vigilant is imparitive. Once you insert it hold ur finger over the end and you will know when to pull it out because the urine will stop on ur finger. Removing it doesn’t hurt at all. Insertion does get easier. I’ve been doing it so long I no longer even use an unopened one every time I go. I’m just careful to rinse and return inside pkg. it comes in. You also in time get to know your bladder tolerance. By that I mean you’ll know you need to drink more water if the urine starts to be cloudy a little bit. Perhaps you drank a little more tea in the summer and it starts to become a little cloudy so you need to switch to more water. You got this. Hardest part is insertion. It’s going to hurt but your hand will let the cath enter. You will feel tightening of the urethra, you’ll relax then push a little more then you’ll feel the urine coming out. A million times better than an indwelling cath. That pain only lasts one minute. Don’t hesitate. Don’t spend another dime on all the pricey depends. You don’t have to continue if you can’t handle it.
Ed Tobias
Thanks for all of that detail, Paula. I'm sure it will be very useful to a lot of people.
Ed
Jilly
First off my bowel gave me no warning I needed to go, it was awful as I can't run to the toilet. I put up with that for a couple of years, then my bladder gave me no warning. I got really scared about that. I discovered OXYBUTYNIN for my bladder, taking away the feeling of urgency and it has helped my bowel as well. What a relief Oxybutynin has been for me.
Glenda
These are hints I learned awhile ago, so some may be dated.
1. Caffeine and Nutra-sweet (aspartame) are bladder irritant.
2. Water soothes the bladder.
3. Timed voiding helps (trying to urinate on the odd or even hours).
4. Wearing a incontinence pad helps and there are both male and female versions.
5. Clean intermittent catheterization (CIC) rarely causes infection.
Paula mieczkowski
Your most welcome. If anyone in our MS needs to discuss this topic or comment please feel free to contact me. Having had MS for 30+ yrs I feel confident I may be able to muster up some common sense answers or ideas or experiences. To all women out there.. if you have children, you got this!
Stacy
I’ve had the terrible urgency issues, hesitancy & some leakage. Fortunately, no UTI’s - I probably drink a gallon or more of water/day. I’ve always got my big Yeti cup with me.
I also try to time my potty trips - before I leave (w/ a pad) - and find out where the restrooms are wherever I’m going - which always seem to be located in the farthest back corner of huge places, like Home Depot! That’s ok b/c while pushing a cart - I can s l o w l y drunk walk back there?.
I also continually do Keegle (sp?) exercises in an attempt pelic floor strong.
Sorry guys, I don’t know how that would work for you.
Caro
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Kim
I have had MS for 25 years. The last few years I have had frequent UTIs. This year I have started having them about every 6 weeks to 2 months. Frequent urination, abdominal cramps and cloudy, smelly urine. I tried oxybutynin but nothing. Should I phone the neurologist about this? My GP is fairly useless. I’ve been reading about what different people have tried. Sure seems like a very common complaint of people with MS. Any other ideas? Any input would be appreciated.
Ed Tobias
Kim,
I'm sorry about the delayed response. I'm not a health care professional but as far as I know oxybutynin only helps control bladder spasms. You need an antibiotic to control a urinary tract infection. These infections can be caused by failing to completely empty the bladder. I'd certainly contact your neuro to discuss this. Be sure to ask about botox injections and self-catheterizing.
Ed