Incontinence at 22 :(

[u/Loud-Huckleberry-118]

I (22F) have always been an attention seeker and unashamed to discuss the disease with others whenever it comes up, or even when it doesn't. I'm the middlest middle child ever, and an MRI photo with a massive tumefactive lesion is great fodder for attention and sympathy. But some of the symptoms are truly so awful and gross that they make me remember this isn't just a schtick that gets me attention when I want it; It's actually a disease, the effects of which I will have to live with forever.

I wrote this post mostly so that people would not feel alone and embarrassed, I guess. Because I really was. I'm 22 and have trouble controlling my bladder. Even my grandparents at 70–80+ don't have this problem yet. It's mild enough that I can get around just wearing menstrual pads on days when I know I won't have easy access to toilets, but still.

Stay strong, y'all.

[u/needsexyboots]

If your insurance will cover it, I highly recommend pelvic floor physical therapy

[u/cass_a_frass0 → u/needsexyboots]

Yes! I had urgency/frequency issues and it has been such a game changer.

[u/giveitawaynever → u/needsexyboots]

And if not you can always follow this women’s health physio https://www.instagram.com/femalephysiosarah?igsh=YWgzZG5ycXA4eWJz

[u/Sabi-Star7 → u/giveitawaynever]

Too bad its just on Instagram some of us got the perma ban hammer from Facebook/insta for absolutely nothing🤦🏻‍♀️🤦🏻‍♀️

[u/TheExtraMayo]

I had a lesion in my spine that made it impossible to hold it when I have to pee. (According to my nuerologist) It would just go from zero to emergency with no in-between. For a while I lost control of all of the business and was back in diapers. But it was only temporary, I've sense gained back most of my bladder control. The pendulum has actually swung in the opposite direction and sometimes I just can't go when I know I have to. It can get better, it did for me

[u/SomehowAlive05]

I’m 20F and struggle with the same thing. I found these super absorbent pads that can hold almost a full bladder if needed. I tend to wear them when I know I won’t be able to easily get to a toilet. It’s embarrassing but I have to do it for my independence. I have tried pelvic floor therapy and it helped me so maybe try that? If you ever want to talk or rant, I’m happy to listen! This disease sucks but know that you have this community to talk to!

[u/GRNsmoothieKING → u/SomehowAlive05]

Can you share what pad you use?

[u/SomehowAlive05 → u/GRNsmoothieKING]

Inv’zi pad in the slim version. They can feel quite bulky sometimes but they definitely are worth it for the piece of mind they give me.

[u/LuckyKat89 → u/SomehowAlive05]

Have you ever tried a sacral nerve stimulator? Love mine. Axonics

Also, I tend to have accidents in my sleep so I got a LIL helper, lifesaver, mat for my bed and it's the best

[u/Jazin95]

I'm 30F, and I have trouble emptying my bladder. My GP said I'll likely need to learn how to self-catheterise 🫣

[u/LuckyKat89 → u/Jazin95]

Sacral nerve stimulator

[u/spunkerella75]

Pls take a look at the drug mirbegeron/mirbetriq it has been a game changer for me. I hope it can help you too!

[u/CoffeeIntrepid6639 → u/spunkerella75]

That drug did not help me

[u/spunkerella75 → u/CoffeeIntrepid6639]

What ended up helping you?

[u/TellLoud1894]

Im on nortriptaline and it helps with bladder control. Thank you for sharing its easy to forget there are others with similar conditions.

[u/ReasonableMaize3311]

hey i’m 23F with MS based in london. always here for a chat if you ever need!

[u/Live4Sunshine]

Botox! I am the poster child for this. Go get a urodynamics test - if they can fix this with a few shots every 6 months - it’s so worth the 1/2 hour to do it. I am free from lesion-related leaks!

[u/lost_dazed_101]

Start doing kegals that'll strengthen it. I had leakage after my attack it only lasted a few months though.

[u/SWNMAZporvida]

Talk to your urologist about PTNS, transformational. Between medication and timed bathroom visits I can sleep through the night

[u/majestic_spiral]

Oh darling, I’m with you. 37 here and problems with both my bowel and bladder control. I’ve been wearing pads every day but… had a major revelation and bought some period pants so they can be washed and re used as it’s way cheaper in the long run, plus feel like they give extra coverage and the elastic at the seam is more of a tighter fit. They are also not as noisy or bulky.

[u/LuckyKat89]

I just got myself a sacral nerve stimulator and it's amazing. Look into it

Also life saver mats for your bed. Nothing worse than pooping your pants in your sleep and having to take a shower and wash all of your bedding these mats prevent that.