MS and Bladder issues at the age of 20
Like the title implies, I am a 20 year old girl with MS. I just got diagnosed with it in january of 2024. I have been having the issue of not being able to pee sometimes, for years but didnt give it much thought. It just so happened that i spent a while in the hospital because of psychological issues, and i ended up having the problem again and mentioned it to the nurses. They helped me with that but also made an appointment at the urology apartment of the hospital. I had this this week and it ended up being a catastrophe. They told me they think i have a weak bladder because of MS. And thats the reason i sometimes cant use the toilet. Apparently I also have too much urine left in my bladder after I do use it. This all is so very embarissing for me, and if that wasnt enough they told me I should learn to use a katheter and use it multiple times a day. I feel like its so very unfair to have such problems at the age of 20. I would love to just ignore it exists and pretend like nothing is wrong. To be honest right now i dont care about the consequences. I dont want to have this shit.
You know what,
? You're right. It's not fair. And it just plain sucks. MS is a jerk and it doesn't fight fair. You shouldn't have to deal with this. No one should.
But.
That's not the choice before you.
I know dealing with bladder issues can be embarrassing, especially as young as you are. But no member of this community is going to bat an eye at anything you share here. From bathroon issues to bedroom issues, we discuss it all. And why not? It's what you're dealing with and every person needs a good place to talk about the nitty gritty of life with MS.
I do want to offer you some hope, though. And not in a 'toxic positivity' kind of way. I won't lie and say dealing with any of this is easy, but, it can get better. And you will get better at managing this. While self catherization is an option, there may be other ones, so when you are feeling up to it, feel free to do some research and see what's out there, treatment wise. Here's some information that I thought you might find useful on this topic (bladder health) -- https://multiplesclerosis.net/living-with-ms/embarrassing-questions-interview-urologist. Also, we have a number of members and contributors that were diagnosed in their twenties (or teens) and they can relate to what you are going through (here's just a couple -- https://multiplesclerosis.net/community/experts/calie-wyatt and https://multiplesclerosis.net/samantha-salvaggio).
You can do this. Even if you don't want to. And there are days where you are totally allowed to be like, "Nope. I'm just not feeling it today." Being newly diagnosed is tough, but you will get through this.
Please know you are not alone in this. We're here for you, in any way we can be.
Best, Erin, Team Member.P.S. Here's one more link I wanted to provide, but the links are being a bit wonky today -- https://multiplesclerosis.net/living-with-ms/5-pieces-of-advice-for-the-newly-diagnosed.
oh do I know how embarrassed you feel! I started my MS journey with urinary problems and I sometimes cringe just remembering how embarrassing it all was. I even remember the first doctor who saw me for urinary problems and what she said to me that day 50 years ago (I'm old, don't mind me!). She said, "You'll never take going to the bathroom for granted again." Yeesh! And i was in my twenties when that first episode happened.
MS is never fair. At any time, at any age. I'm sorry this hit you so young, and that it's going to be with you for years and years. When I was diagnosed, there wasn't anything doctors could do for MS; I didn't start on a disease modifying therapy until I had lived twenty three years with the disease.
As Erin says, you are not alone. We're here for you, and it's not just us who work for Health Union. You'll meet peers in our community, and they will be the ones who meet you where you are and I bet, provide the most meaningful support. But even those of us who have lived with MS for way longer than we ever expected have support to share.
You've come to the right place. I'm just sorry you have to be here at all.
