Urologist appointment did NOT go well. ☹️

[alimitchell1]

I had a urodynamic test done on Wednesday to set a baseline for bladder function, since I was diagnosed with progressive relapsing ms in January. I was totally in shock with what the dr found. Atonic bladder and bladder sphincter dyssynergia. All of that means I have to self catheterize on a schedule every day. He went so far to say this is my new normal. I’m so mad...and sad. I have to do it because I could be damaging my kidneys if I don’t. Any suggestions to accepting this and making it my new normal?

[Tinker-Belle]

I could never get the hang of catheterizing. There is a tool...some sort of guide...that is supposed to help make it easier. I'm sorry you are having to deal with this. I know it's no fun at all. Talk about this with your neurologist, too. He/she may have other suggestions or recommendations.

[alimitchell1 in reply to Tinker-Belle]

Thanks. I will definitely discuss this with my neurologist when he gets back from a 3 week vacation.

[Tinker-Belle in reply to alimitchell1]

Good gracious! I'm envious of him. Good luck in the meantime. I hope it goes much smoother than your expectations.

[CalfeeChick CommunityAmbassador in reply to Tinker-Belle]

If you have a good relationship with your pharmacist, you may want to discuss help suggestions there. I'm spoiled, there are many female pharmacists at my pharmacy.

[Tinker-Belle in reply to CalfeeChick]

That's a great idea.

[Doubled51]

So sorry about the cath and bladder problems. I’ve got an appt with my neuroA Monday. I had to catch for about 6 months about 3 years ago. After you figu re out how things work it gets easier. But I’m man so I don’t have any info from your end.

But good luck in it all.

Donnie

[MarkUpnorth]

Sorry for the news. Give it a bit before you make any conclusions you may not be happy living with. It sounds like a real pain in the neck, sorry wrong anatomy, but so is having to empty so many, many times an hour days, and many, many times a night. No, not a UTI. Had those, done that, and have that under control. And each time, no matter how urgent it may seem, so many times I have to massage the bladder area to get it going, twice a pee session, to make sure the lime sized bladder is empty. It took years to get this crazy ritual down so that it doesn't cause other problems. So, you get over it and do it. M.S. is a pain in a lot of things. Figure it out for yourself what you're willing to do, and how to mentally get used to it and move on. BUT, before you do, see other doctors and get their opinions on what CAN be done, to as to be sure you have chosen the right path for yourself. I saw 2, no 3 urologists regarding my issues. I even had a couple surgeries in attempts to correct bladder issues, and I'm talking about different anatomy, talking about uncomfortable catheterization. I've been on all the urological meds. One did this, one did that, all created other problems (all side effects worse than the original problem(s)), so I chose urgency, high frequency, massage when necessary to keep it emptying. And oh yeah, drink a lot, all day, to keep things flushed out. I'm over the whole thing about it being counter productive to drink so much with bladder issues, especially since I knew someone who died not to many years ago from dehydration because she didn't drink enough because it was so hard for her to get to the bathroom. No problem peeing, just getting there. (I still think..., she lived in the desert..., died of dehydration...... Had nothing to do with the lack of water,....but it did? And the tap was free flowing with all the water one could ever use?

I've been on all the urological meds too. One did this, one did that, all created other problems (side effects worse than the original problem). So after years and years of all that trying to fight urinary imperfection, I chose urgency, high frequency, with manual massage as necessary, and yes, lots of fluid intake, to keep things flowing. You do what you have to do.

Yep, the anatomy is all barely functional. I ran each of my cars from new to several hundred thousand miles each. One nearly a half million. At the end, they all start to break down. So I will keep on going, and going, whatever it takes. Just try and ignore it, focussed on more important things, like for me, Are The Fish Biting?

[CalfeeChick CommunityAmbassador in reply to MarkUpnorth]

MarkUpnorth Just reading your reply, I drank half of my bottle of water! I am fortunate to not have to use a catheter, but do agree, all thing MS are life changers. We just have to adapt, and try to move forward. I have 2 different meds that I have to take each, one at a time with hopefully a bottle of water every morning, before I can have any coffee, etc. so my mornings are tied to lots of water for meds to absorb, then I can start my day.😊

[alimitchell1]

Thanks for the advice.

[Tinker-Belle in reply to alimitchell1]

You know, alimitchell1, markupnorth had a good point. Second opinions are often a good idea, too. I say that about this in particular because after I had a bladder screening years ago, the urologist office told me I needed to do the same thing several times a day, measure output, etc., etc. When I went back to my neuro with a urinary tract infection...not because of that...just happened to have one...he disagreed with what the urologist place told me. So, as Mark said, different doctors tell you different things. Or, at least they have me. I have to go through a lot of mental stuff and massaging of my lower belly area, too. And, often, just let out a , "Dear God, just let me go!!!!!!" Not sure that has any effect at the moment but it makes me feel better. Other times it's, "please, please, please help me get there in time!!!" Anyway, enough of that. Final bit of advice, the folks at the catheter supply place where I had gotten mine had nurses who could help answer questions and make suggestions. At the time, I was too embarrassed to utilize that. In hind site, that was stupid. Much of my learning is done that way. Wishing you a beautiful Sunday.

[alimitchell1 in reply to Tinker-Belle]

Thanks. I will discuss this with my neurologist. I’m in a big city where they just mail you the supplies, but I see from these posts that there are other people to contact for help. Thanks again.

[Tinker-Belle in reply to alimitchell1]

You are welcome. They just mailed me the supplies, too. In fact, they sent a sample set first. Who knew there were so many different kinds to choose from. Then, they sent a bunch. Good luck! Wishing you all the best on this sometimes very tedious journey.

[ItsChris]

I’m sorry Ali. I understand exactly how you’re feeling - same card I was dealt 10 years ago.

I can’t sugar coat things except to tell you that over time, it won’t seem as tragic and it will simply become your new normal. I know you likely feel overwhelmed, and I would have to say that it’s a normal response.

Biggest advice? Keep catheters everywhere! Even 10 years down the line there’s moments of being in a rush and forgetting to make sure you’re properly equipped. Better to have too many than too few

I used to feel embarrassed throwing them into the trash and knowing it was visible to others especially at work. If you are that sort of person, in time, that won’t matter either. I have actually found being open about these things, for Me, have been positive for my outlook instead of shameful.

[alimitchell1]

Thanks for the advice. I do feel overwhelmed and embarrassed. Good to know it gets better with time. I really don’t like having to plan my days around a cathing schedule. It’s just crazy how much my life has changed in a year and a half. I’m tough and smiling, but I don’t like it.

[CraigS]

A true pain in the....

I've been doing this for a while now, I had no idea that I had a problem until I had an MRI and was told that I was holding urine. Apparently, my bladder is like a 2- liter bottle! I don't get the notion until I'm about to spill over. So, I just scheduled regular trips to the toilet now.

I have no idea what it would be like for the ladies in this position (more male privilege) I do know that it's annoying.

It took some time to get used to, but what else can you do?

Deep breath..

[Babslover]

Hi alimitchell1: I had a female gynecologist surgically implant a bladder stimulator because years ago I was going to the bathroom 20 plus times at night. Needless to say I was not well rested for the next day. I was a bi... to my husband. Had the stimulator for a few years and now I only get up no more than 3 times at night. Hope this helps your situation. 😊

[StemSearcher63]

Hi ali! I can understand your reaction to hearing that you must cath. I came to that point of understanding after YEARs of not being able to sit for a movie, a church service or even a meal without having to stop & find a bathroom. My gynecologist realized that I was retaining urine even after emptying my bladder. He sent me for ultrasound that verified that fact & to see urologist who gave me a long acting bladder relaxant medicine to help the bladder relax enough to fill and the catheter to empty. It has proven to FREE me from the toilet. It is actually a good thing for me. Inserting it will soon seem just as normal as using a tampon. Get a mirror to get familiar with your target. It is liberating to be able to go out and not be worried about finding the rest room every 5 minutes. It is wonderful to sleep a full 8 hours! Good luck with this new challenge.

[alimitchell1 in reply to StemSearcher63]

Thanks so much. I can do this. I’m getting a little bit better at it.

[StemSearcher63]

Saw this clinical trial & thought of you..

mail.google.com/mail/u/0/?s...

[Kevin_McMillan]

alimitchell1 it sounds like we have a very similar problem going on! I'm on flomax which has helped but I'm still cathing occasionally, I was on a schedule to try to shrink my bladder because it is huge. It is stretched to two and a half times as normal. If you don't cath that is going to happen to you. I'm sorry you are dealing with this, I know this isn't fun but it's part of the evil!

[Hidden]

I was diagnoised a few months ago with Bladder sphincter dyssynergia, I never heard of that and not sure if it is associated with MS or not.