MS and Bladder Incontinence............... - My MSAA Community

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MS and Bladder Incontinence.............. A living nightmare!

Fancy59 profile image
Fancy59CommunityAmbassador
24 Replies

Bladder and continents. 2 words that strike fear in the Hearts of many of us who have MS. MS can cause problems with Bladder incontinence when lesions strike specific areas of our central nervous system The result can be Bladder Incontinence. Until recently there were a few tried and true methods to deal with this mess. Some people swore by doing Kegel exercises to strengthen the muscles in the bladder. Others took supplements to do the same thing in a different route. But many of us turn to the use of incontinence underwear and pads.

My 1st mistake here was to attempt to use the dispoable underwear and pads offered at the local retailers. Oh these work just fine for some people but not for those of us whose MS causes the bladder to suddenly and totally purge its entire contents. I spent several years fighting this and being embarrassed when my super heavy pads simply could not contain my urine output. I got very creative at using my jackets and sweaters to hide the wet stains on my pants. As the laundry piled up with sometimes 4 and 5 changes a day in clean clothes , my wallet also seemed to spring a leak as these items were rather expensive, especially when you required 5 and 6 changes a day.

For those of you who found a way, I salute you. For the rest of us it seemed we were doomed to be embarrassed as if we were a two-year-old In the process of potty training.

A caregiver of mine told me a client of hers had used just about every incontinence underwear on the market and it found that some of the ones you bought online were a lot better and cheaper than the ones at the stores. I settled on Tenna extra heavy duty and it cut down on the leaks and was significantly cheaper, but I was still incontinent. One problem solved and 1 problem to go.

My neurologist then stepped in and sent me to a urologist that's specialized in incontinence.

The solution she suggested was to inject Botox into my bladder. ( I know, what a waste. If I want to use botox I want it on my face right!) After a barage of test, some that weren't very pleasant, it was decided I was an excellent candidate for botox. How could botox decrease my incontinence of my bladder, I asked the the doctor. Here is what she had to say

Botox injected in the bladder helps by:

1. It helps to relax the bladder and by doing so increases the bladder's size so you can hold more urine and have to pee less frequently. Much like it does to the wrinkles on your face it helps to relax the face muscles and plump the skin thus getting rid of the wrinkles.

2. By relaxing the bladder it also cuts down on the frequent sudden urges to pee that are often uncontrollable.0 These are caused by spasms in the bladder and the rectum that causes the sudden urges.

I had the procedure done last Tuesday so about a week ago. The urologist told me what take about 2 weeks for the botox to become effective. Believe it or not I've already seen positive effects from the botox. There has been several days in the week that I haven't had to change my pullup once since it's stayec clean the entire day.

There is a follow up ultrasound about 2 weeks after the botox is injected into the bladder to make sure you are emptying your bladder completely. Of course we all know that if you retain urìne in the bladder it can cause UTIs. In addition sometimes the botox works too well and a person cannot empty their bladder because the botox simply ties the bladder up. In these cases then a Catheter must be inserted Into your bladder to help the bladder release the urine. Typically the urologist said the over active retaining of urine only last for a week or 2 until the botox's strength wains a bit and then normal bladder function returns. All of these risk factors are looked at and your success or failure rate of using botox is determined during the testing they do prior to the procedure.

The great news is everything is covered by medi care and you only have to have the new injections of botox into your bladder approximately every every 5 this 12 months. It varies of course from person to person and bladder to bladder. Oh and the last thing I forgot to mention is that the injections only feel like slight pressure or cramping because they numb the bladder prior to injecting the botox into it.

To this point overall I would rate botox a great success for my bladder. Of course everyone is different so speak to your neurologist/urologist to determine if it's a viable option for you. Knowledge is power. Never stop learning. Fancy 59.

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24 Replies
bxrmom profile image
bxrmom

Great info Fancy59 ! Glad the botox seems to be working for you! Keep us updated on how it goes for you!

NorasMom profile image
NorasMom in reply tobxrmom

Ditto. I'm still at the point of only needing long pads, but I like to know my future options. Please keep us posted!

DM0329 profile image
DM0329

Boy can I relate to your post! FWIW, bladder issues are among my biggest complaints, too! 😅🤞

Sandydemop profile image
Sandydemop

hi Fancy59 , so happy for you! i love a happy story. i just sent to Tena for a sample kit of disposable underwear. I've been buying them from stop and shop and if this does the same or better for less, i'm in for that. I spoke to my neuro about botox and she said: "Not yet." first she wants me to try a temp catheter. go from least invasive to most invasive. anyway that's where i am for now. thanks!

Fancy59 profile image
Fancy59CommunityAmbassador in reply toSandydemop

Sandydemop, my primary care doctor is dead set against cathertizing your bladder if you do not have to. She says it leads to UT I's and other infections if you're not extremely careful. Ask your neurologist about this and it would not hurt to get a second opinion from a urologist just to check on It. Just a thought. Fancy59.

whwiechm profile image
whwiechm in reply toFancy59

I've been using catheters for 5 years now and have had two bladder infections. I am very happy with them, although for women it is obviously more difficult than it is for men. I have a problem with using Botox in that the name stands for botulism toxin, which does not sound like something I want in my body, but if it works for you, that's great.

Fancy59 profile image
Fancy59CommunityAmbassador in reply towhwiechm

whŵiechm, Be very careful with the Catheter use. Those UTIs can be Very Serious if not caught quickly. I had a UTI at the end of September that I did not realize I had that led to an infection that got Into my blood. When the abdomen pain started It was very minimal and I still did not realize what was wrong. The next day when I started talking out of my head and went on responsive to everyone they rushed me to the hospital and the blood infection I had put me in the icu for 2 days because I was near death. That kept me in the hospital for 2 solid weeks and then I went to rehab for another 2 weeks and had to go home because the insurance kicked me out of rehab. That was the middle of September and I am just now coming back from that infection. It was a extremely bad experience. Believe me when I say you don't want to do it so don't template with those UTI infections. Fancy 59.

Fancy59 profile image
Fancy59CommunityAmbassador

Sandydemop, I forgot to mention that purchasing Tenna Disposable Underwear from the big online retailer save me bunches of money. Check around when you ordered them. You wouldn't be amazed how cheap you can get them if you look and dig a bit. Fancy59.

carolek572 profile image
carolek572CommunityAmbassador

This is timely info to share with the forum, Fancy59 ! Thank you and please keep us informed of any new progress. :-D

twooldcrows profile image
twooldcrows

thank you for the info ...so glad it is working for you ....thank you again for this info ....

BettysMom profile image
BettysMom

Have you considered intermittent self catheterization?

BettysMom profile image
BettysMom

Oh, I see you already commented on catheterization. Sorry.

palomino27 profile image
palomino27

I had a friend with MS, ironically before I had MS, die from complications from a catheter (UTI). Spastic bladder is the worse..

Fancy59 profile image
Fancy59CommunityAmbassador in reply topalomino27

palomino27, UT I's if left untreated because sometimes we don't realize we have them can lead to serious infections. In August I had a UTI that went to a blood infection because I didn't realize I had it and I almost died from it. Be very very careful of anything that could cause UTI in your bladder because they can become very serious. I won't take a chance of using a catheter if I don't have to because of the chance of infection in the bladder. Fancy 59.

palomino27 profile image
palomino27 in reply toFancy59

Sounds terrible. I'm avoiding the catheter as long as possible too. My doctor's seem to support this very much.Glad your ok!

I use a supplement called D-mannose to help keep UTIs away. It is extracted from the simple cranberry. It is considered controversial in the medical community whether it works or not,but seems to for me. No UTI blow-ups since taking it for 2+ years. It supposedly works by not letting the bacteria being able to stick to the wall linings of ones bladder and Ureatra. It does not kill the bacteria like an antibiotic.

One time, I thought I had the start of a UTI. I doubled the dose and it was harder to "hold it" and a bit of a burning feeling for a few days. Seems to be doing something LoL!

Fancy59 profile image
Fancy59CommunityAmbassador in reply topalomino27

palomino27, I've never taken the supplement you use but I am a firm believer in cranberry extract. I take a high dose of it affnd it helps keep the UTI away, At least most of the time period The two UTI I have gotten were right before surgery was scheduled and I had to get off my cranberry supplement because It wasn't approved by the FDA and I had to stop taking it prior to surgery about 2 weeks. Fancy59.

mrsmike9 profile image
mrsmike9

I'm so glad this is working for you! I was prescribed Oxybutynin for this same issue. That works really good for me. I talk 1 each morning.

Fancy59 profile image
Fancy59CommunityAmbassador in reply tomrsmike9

mrsmike9, I too was prescribed oxybutynin and I was on it for years Even though it gave minimal help to my blàdder. When I went to this urologist that I think it's very knowledgeable she said some of the new studies with the drug show that it builds up in your system and leads to very negative side effects over time On your cognitive abilities. All I know for sure is she said it was a fairly new study but the evidence was overwhelming that it was bad for you. So be careful with the oxybutyan and you might want to check again with your urologist or get a second opinion from another 1. It wouldn't hurt because you sure don't want to have something To cause you harm 2 or 3 years down the road. Fancy59.

Sandydemop profile image
Sandydemop in reply toFancy59

i've been on oxybutinin for a while prescribed by my neuro but i have never been to a urologist. maybe it's time for that!. thanks fancy

mrsmike9 profile image
mrsmike9 in reply toFancy59

I certainly will check. Thanks!

lbenmaor profile image
lbenmaor

I'm glad the Botox is helping!

Leslie

Lespauljoe profile image
Lespauljoe

I’m so happy you found some relief. I’m actually getting Botox in my leg every 3 months. It hasn’t made me handsome but sure has helped reduce my spasms! God bless!

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I ‘ve been taking prescription, OXYbutinin tablets 5mg and it’s helps allot. I still wear pads and have protective pads on the bed. There’s been a couple of accidents but it’s well worth it to me. I used to drink entirely too much fluids in the afternoon and evenings, which I’ve cut back on, that makes a big difference too. Tablets are twice a day. Hope it helps.

BlanketTime1 profile image
BlanketTime1

i'm happy you've had such good results.🤗

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