Ask Me Anything: What You Need To Know About Peeing Your Pants.
30 Comments / Ask me anything. Seriously, anything., Bladder / By Tripping / April 5, 2018 December 10, 2021
Recently, I asked fellow Trippers to send me the deep, dark questions about multiple sclerosis that need answering, and you guys didn’t hold back. I got so many great questions that I decided to split them into a few posts. As always, talk to your doctor. This isn’t professional advice. This is more like a psychic hotline that somehow knows the letters M and S mean something to you, and then predicts you will fall down the stairs. Spooky, right? But not medical advice!
Your first questions were about one of the more distressing symptoms of MS, which also happens to be among the most common: the messed up bladder. From retention to incontinence, if you have MS, chances are your bladder is trying to ruin your life. If you’re among the fortunate few whose bladder isn’t a controlling jerk, well, start doing your kegels just in case.
Nobody wants to talk about bladder issues, but I am here for you. As someone who has peed her pants in so many inappropriate places, I’m taking one for the team, and spilling my secrets on how I’ve dealt with it.
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| Where were you when I needed you? |
Cheryl B asks:
Are there any medications that are successful with treating bladder issues (I wake up every two hours during night/bedtime to go to the bathroom). My neurologist only recommends self-catheterization and I do not want to do that.
Anonymous cuts right to the chase:
Diapers or catheter? My MS incontinence is pretty much the least sexy thing I can think of, so I don’t really want to talk to my husband about it.
Answer:
Ladies, I hear you. Double-voiding and limiting caffeine might work for some is a bullshit solution. I wish it were as simple as a pill; I know that catheterization sounds extreme, and just typing the word diaper hurts my horcrux, the idea is so appalling to me. Then again, so is publicly losing my shit. The point is, this thing is complicated.
I have no experience with diapers, except I’m pretty sure I was a baby once. As an adult who likes to wear skinny jeans, and (no judgement), isn’t into kink (ok, some judgement); I’m not a fan. I realize I have to get over myself, because I don’t wanna contribute to stigma around the tools we must learn to love in order to blah, blah our best MS lives. So, let’s agree that diapers are helpful for some, and fucking call them something less…diapery. Like sparkle pants or les couches fantastiques.
Because even merde sounds better in French.
If you’re a regular reader, you’ll know that the clear winner for me is self-catheterization, which sounds terrifying, but is really just a fancy way of saying ‘tapping the keg’, which is just a trashy way of saying the “gold standard for medical bladder emptying” which is wikipedia’s way of giving me first prize for peeing. Medically.
Okay, maybe medical bladder emptying still sounds terrifying; or at the very least, confusing, but as a long-time practitioner, I can tell you it has liberated me (like for realz, not in the Zamboni way, if you’ve been around long enough to remember those dashed dreams). You can read my love letter to Cathy here.
Catheterization is not without its cons. I need regular antibiotics to ward off UTI’s and supplies can be hella expensive. Plus, I obsess over antibiotics messing with my gut biome, but that’s a topic for another day. Self-cathing isn’t for everyone, but not because it hurts (it doesn’t), or because of stigma (fuck that).
But wait! There’s more.
Before committing to sparkle pants or making friends with Cathy, most people with MS will try one or more of a number of medications whose goal it is to keep your pee inside you. Again, everyone is different but these drugs were not helpful for me. Preventing urgency made my retention worse, and caused side effects like dry mouth and constipation. If you think dry mouth doesn’t sound so bad, it’s because you’re not open-mouth kissing me, and if you think constipation is NBD, I’m so happy for you; you probably don’t have MS.
Another option for wrangling your bitchy bladder is botox, which I have not experimented with, but have heard good things about. This is probably the most aggressive way to go. If you’re gonna get botox, you have to have first failed on the meds, and be willing to use a catheter full-time, because once you botox you can no longer freestyle at all.
The good news is, you have options, so explore them. Many, like me, have been able to get this under control. Don’t suffer. For gods sakes don’t stop drinking.
Okay, but what about bringing sexy back?
Anonymous, like a lot of us, wants to keep things sexy in a decidedly unsexy sitch. And here’s where the emotional cost of MS comes into play. I get it. Feeling diminished by this disease is balls. I don’t even like getting dressed with The Banker in the room because I don’t want him to see me wrangle my twisted, dead-weight legs into my lululemons, as I fail to keep from sliding off the bed and have to use a 17-step procedure to pull myself up again. No. I need to trick him into thinking I’m a graceful ballerina while I tell myself he hasn’t noticed my Frankensteinian gait because I’m wearing a push-up bra.
MS might be fucking up my body, but I still need to feel, and be seen as, capable, strong, independent, and yeah, sexy. Hopefully Mr. Anonymous will support whichever way you decide to manage this, because trust me, it is manageable. And nothing is sexier than having your shit together. So to speak.
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Very informative, helpful & per usual , you are cracking me up & hoping I don’t pee my pants! ( dancing to the to the loo ?)
Only you could make a dysfunctional bladder hilarious!
As far as “sparkle pants” go, I’ve opted for calling them by their brand name. Anything but diaper. I only use them when I go out as an insurance policy. I’ve never had an accident while wearing them. Of course, now that I’ve said that, I will. At home I use pads. On the positive side, I have tried biotin with some success. It’s not a cure-all, but it has helped with urgency since I can’t run to the bathroom anymore.
I don’t like my husband seeing me uncovered. My skinny, shapeless, unsupportive legs are not pleasant to see.
Thanks for sharing your wit and wisdom!
We are taking a 2 1/2 week trip to London next month. “Lack of bladder control is my biggest nightmare. Do you recommend taking peeppads and loading my luggage up with them? We are taking my rollator and hoping to have a GREAT time.
Pee pads can protect the bed if that’s your concern. Have an amazing time!
Great post! Always informative and hilarious at the same time. I use Catheters which I find to be very easy to use. I was very scared in the beginning, but once I got the hang of it, I found it easier than putting in a tampon. I can even do it after a few glasses of wine. I also receive Botox injections every 4-5 months. I have it done in my Urologist’s office. It has absolutely changed my life. I never get up anymore during the night to go to the bathroom. I don’t need to use pads during the day anymore. I also take an anabiotic every day to ward off UTIs. Kathy
Thanks Mare. I hope you made it to the potty!
Thanks for reading, Linda!
Glad to hear you're having some luck with the biotin. I've been on it now for about 15 months and it's certainly not a care (what is?) but I have a good feeling about it. Plus my hair is shiny like a pony.
*cure (not care)
Thanks for sharing. The tampon analogy is so right. I remember how scary they seemed when I was like, 13. But they turned out to be brilliant, and easy; something you don't even think about, like caths!
I wear potty pads daily. They’re so hard to choose the “right one” in the store, standing in front of the shelves when your eyes are playing I don’t spy.
When CG has to buy, it’s hard to explain the “drops” code.
I feel like this is a job for Amazon Prime.
Don’t use the drugs – BAD. Ended up having a hardened bladder wall and in the hospital for a week. Now using a catheter – it’s not the end of the world and at least you don’t pee your pants!
Pull-ups at night and sometimes during the day with a pee pad on top – primarily for a long car trip when I am driving or someone else is. I buy my day time pee pads and pull-ups online – and I have several other things that I get shipped on a regular basis. So the pull-ups and pads are just part of a monthly pkg from Amazon. I live in Seattle, so Amazon is a local company. I have tried many types and have my faves for my size, build, and bladder needs. If I keep myself on a day time bathroom schedule of every two hours, things go pretty well. But as many people know, just making it to the loo sets the bladder off. I also use washable incontinance pads on my bed to make things easier to keep the bed tidy.
My best recent aquisition has been installing a washlet – or toilet/bidet combo. Nothing like heated seat, water, and air to keep things tidier. I highly recommend if you are in the market for a bath reno!
It rings true on all counts. Yes diapers are not sexy. But neither is wet wet look. Worst yet the ???look. I had a ??accident in San Francisco. Ugh!!! My partner was so sweet. She took me back to hotel took a shower and a nap with me. Got up went to concert. Had a good cry and laugh! We call them pull downs!
Botox + vesicare meds if need reinforcements + speedicath = changed my life and regained my independence and confidence
Speedicath is the bomb.
Enjoy reading. Humor is a must have, particularly with MS! I cath several times daily, have for over 20 years. What is speedicath?
Speedicath is by coloplast and it’s fab.https://www.coloplast.ca/speedicath-compact-eve-en-ca.aspx#PRODUCTCONDITION=&PRODUCTUSERPROFILE=&PRODUCTBRANDNAMEWEB=SpeediCath%C2%AE
I’ve self-catheterized for 40+ years. It give me the freedom to plan do.also let me be employed longer. Take antibiotics now with probiotics.
I have MS, but I have to wear diapers plasticpants day and night because if uncontrolled wetting.
I am postive to life, never sit down and get hurt.
I make the best oyt if it, also my wetting problems.
Now I accept my diapers and see what a fantastic good help this is!!
Unsexy fo sho! My love is a booty pincher and I *used* to be a commando commander for many many reasons, first and foremost my vag needs air LoL I keep putting off dr visits but this actually makes me want to go in. I have been wearing heavier and heavier pads and was thinking about moving up to the sparkle pants but it seems there may be more freedom in cathing, and it’s reassuring to hear it’s not as painful as I’ve always assumed. I’ve recently discovered that high emotion makes me go, not just laughter but sadness and anger too, wtf even is that?! But I’ve been wondering how does cathing prevent peeing yourself? I thought it was more for retention, which is also an issue for me sometimes, but still not as unsexy and embarrassing and publicly announced as this problem. Dr visits are such a PITA for me though,Ugh this disease
Retention and incontinence can go hand in hand. If you have retention you’re likely never emptying your bladder completely and accidents can happen when the bladder is stretched and over-full. I still remember the first time I cathed, thinking “So this is what an empty bladder feels like!” I had forgotten. IMO pads are not a great solution. There are options. Good luck!
I needed the insight your areticle and the remarks provided. I have been increasing pad size/density for a few months and still peeing my pants… at work, at a resort, at home, the list goes on. I’ve been on meds which have been increased and clearly don’t work. It’s Embarrassing and not sexy to have a brick pad on and still pee your pants.
All that being said, I will have bladder Botox/self cath on 7/8. I am so excited about having control over some aspect of my body.
PPMS has been a bitch. I’m still working and am thankful/essential, but always wonder how long my Brain/body will allow.
Good luck! I hope the botox/cathing opens up a whole new level of freedom for you.
I have been struggling with bladder issues for years and it’s beyond embarrassing especially when your young! I was basically told to wear a diaper or pad which made me paranoid If I did have an accident it wouldn’t catch it so right now I’m trying to find discreet pads that work. I already have a big butt so I don’t want to draw any more attention there lol I have been cathing but sometimes I still have urine left over or have to pee like half an hour later so I’m going for Botox in a couple weeks which to be honest terrifies me but I know none of the meds worked and caused more problems, like the ones you mentioned! Thank you for letting us know we aren’t alone! I just stumbled across your blog and it’s so nice to be able to relate to someone else going through the same struggles so thank you! ?
As newly diagnosed lady, you are by far my favorite connection in this thing.
Sparkle pants will become part of vocabulary on the regular.
My question to you, how do you deal with zingers/electrical shocks? Have you had the pain in your abdomen where it feels like you have tight pants on but actually you’re only in your underwear. Gah…
Figuring this out.
Your fellow sparkle pant queen,
Hillary❤️
Hi Hilary,
Sorry to hear about your dx, but I’m glad you found me!
I wish I had an answer for these kind of zingers. Or as I prefer to call it “Mind-fuck pain” because I’m always sure there’s an open wound somewhere on my body when this happens to me.
Hang in there!
Ardra
My problem is retention and constant uti’s. Like the one I have now. I asked my husband if he could rip my bladder out of me just now. I have never self catheterized but have the stuff to do so. I have only had one 5 minute session on self catheterization.
It took me a few days to get the hang of it, but it was life changing. Hang in there.
very very well done for talking about this ..i do NOT have ms..
BUT i have m.e..fibromyalia ..BOTH BLADDER AND BOWEL PROBLEMS
not afraid to say/not afraid to talk about them .. long list health issues
people never see the every day effects .there views/judgements are very Snotty Nosed ..i had a Catheter in for nearly two years ..FANTASTIC .GREAT DEAL HELP ….UNTIL ..BROKEN OFF INSIDE OF ME ..got me very Scared
my blog.http;//mark-kent.webs.com
twitter.supersnopper
mark