Worsening bladder issues

[Cira]

I've had bladder problems for a couple of years now. I have a 2yo son, and I always blamed my bladder problems on having kids, since I first noticed a problem when my 2yo was about 6 months old. Now, I'm not so sure, especially considering that I suspect (in retrospect) that MS first appeared in my life during this time.

Anyway, for the last couple of years, I've had a problem with urgency. One moment, I feel absolutely no urge to go. The next minute, I feel the urge so intensely that if I don't get to a bathroom right away, I risk leakage. Like many, I sometimes leak a little when I cough, sneeze or laugh really hard. My MS specialist & I discussed the issue a little when I saw him for the first time last month, but I didn't really consider it a big issue. I manage it with planned trips to the bathroom (since I often don't feel the urge until it's intense) and carry pads. Not fun, but not a big deal to me. He didn't seem too concerned, either, since it wasn't too bothersome to me & because I didn't seem to have any issues with not emptying completely.

Well, now things seem to be getting worse. I woke up this morning & went to the bathroom. I seemed to be having trouble emptying...Just when I thought I was done, I started again. Something told me that I should probably wait a minute more after that, so I did & sure enough, a little more came out. I probably stopped & started 4 times before I was finally done. About 30-45 minutes later, I suddenly felt an intense need to urinate. I hadn't drank anything at all since I'd been up. I went running to the bathroom & ended up leaking a little on my way there. I went a fair amount, too, when I got there.

Now, I'm starting to wonder if my bladder issues are MS-related after all. Lots of other things have reared their ugly heads these last few days - why not this, too, I guess? Sigh.

[CaroleL]

Cira,

I've had bladder issues similar to yours. When I feel a sudden urge I have to roll fast. Lol! I'm in WC. I don't always meek it on time so I get a bit of leakage.

Usually, once I'm in position, I get a weird pain in my armpits down to my wrist before I can release the urine. Once I think I'm done, I'll give an extra squeeze and more comes out.

I usually try and go every half hour because I drink a lot of fluids.

I try and wear panty liners but I don't like them. I prefer to let my parts breathe. I may end up in diapers though because I have the same urgency with bowels. I've had a few misses there too.

[kebsa]

rather than worry about it or wait til things get less managable (as you say you think its getting worse) why don't you tell your doctor about it, you can see eiher a urologist or a urogynacologist and they can do some tests- starting from simple ultrasound in th office straight after yo have been, that tells them if you are emptying well and if not how much is left as residual- you may not have been emptying fully for a while as we cannot always feel that- and that left over urine increases your risk of UTI

they can also do what they called urodynamic testing- if you google it you can find pretty good explanations of what they do, and while its sound unpleasant it is not that bad, especially if you have been through childbirth- its certainly not painful. from the readings they get from the various monitors they can tell whether its the bladder sphincter, the detrusor muscles an combination etc and that helps work out the best options for treatment- it could be to do with pregnancy, ms or even a bit of both and your MS does not have to be severe before it is an issue- i started with urgency but i could not pass anything til that urgency ocured, then i would just get to the bathroom (i am chair bound but that was a pre MS thing) and as soon as i stood to transfer i'd lose it! that was so annoying!! anyway the test showed for me i was getting up to over 1 1/2 liters of fluid and still no sensation so would have had more urine than that before that urgency occured- i was diagnosed with neurogenic bladder - i have low back problems, nerve damage and crush fractures to a couple of vertabrae and thay may part of the issue for me. but i think my urologist said it well, we do not pay enough attention to this problem, to many women wait till things are really difficult manage before seeking help and she said some other medical professionals are just as bad in not following through if it is raised by a patient. I had mentioned it to my first neuro and he just changed the subject, it was when i changed to a new guy he instantly said we needed to follow up. his logic was that even mild problems increased chance of UTI, and UTI could bring on pseudo flares and make you feel pretty rough and it just was not necessary- good logic

[Cira]

Kebsa- Thank you sooo much for all of that info. I definitely had planned on talking to my doctor about it. I know that not emptying completely is a problem. I haven't had any problems emptying (that I know of) since the day I posted, but knowing that I may not be able to feel it concerns me. And you're right, I've probably ignored the urgency too long as it is.

[suziq38]

You all have good thoughts and ideas, but none of us are doctors.

My doctor didn't think much about it, but my urologist discovered that no one had ever given me a urinalysis since I first reported the stress incontinence.

It turned out that I had a staph infection, and they treated it with Cipro.

This improved somewhat, and I also went to a PT that specialized in kegel training.

These tow treatments helped a great deal.

[cosake]

I also highly recommend a referral to a urologist or urogynecologist. I found the urogynecologist (female) more helpful for me than the urologist (male). The urogyno really spent the time to listen to me and my symptoms, did testing, and asked great questions to get to a diagnosis (IC). Then she was also integral in diagnosing my bilateral kidney stone blockages as well.

There could be any number of things going on that you need to get checked out for, and some may need to be treated asap.

Good luck.

[eveleen12]

You have symptoms of urinary incontinence. In this problem, there is small leakage of urine during coughing, sneezing and laughing. You are using pads, that's good and will protect you from getting wet. You should start your treatment soon. Though there is no guarantee that you will be out from this problem, but there is a hope.

[nursefairy]

I feel you on this one!!! I had the same issue and, like you, I blamed it on weak muscles from having children.

At first it was a little leaking but then it was too much for the sanitary pads so I finally spoke up. It became more like Niagra Falls.

I went to a Urologist that specializes in MS. We did Urodynamic testing and he suggested Kegels. I also started on Detrol. I no longer have to wear any pad

[Kimba22]

Don't make my mistake and procrastinate

I urge you to please see a urologist/urogynocologist! I wish I hadn't procrastinated so long before adding this dr. to my list. It may have prevented the major health crisis i had last year ... which also lead to relapses, complications, and progression of my ms.

Needing to go again so quickly shows you aren't emptying completely & retained some urine. This can lead to a UTI. This can be a relatively minor event treatable with a short course of oral antibiotics or a serious one resulting in hospitalization (or worse).

Once I had a UTI that went to my kidneys and spent 10 days in the hospital on an IV antibiotic. I've had a couple that lead to a relapse that sent me to the hospital and rehab. Twice last year they lead to sepsis (blood infections). Once the sepsis lead to endocarditis (heart infection). The "vegetation" of the endocarditis attached to my pacemaker, which lead to surgery to remove it.

I'd had a surgery that put me into a major relapse 5 months previous to this, then a UTI that put me into another one 2 months prior to the endocarditis. I was already down twice and still recovering with rehab. when this happened.

The endocarditis and surgery really knocked me down & lead to another relapse and inpatient rehab. Then more rehab in a sub-acute facility.

3 months later I had a UTI & sepsis again ... this time it was even harder to treat, compounded when I fell in the hospital and broke my hip. Another surgery, more rehab, and another setback with my ms.

With my luck, I didn't want to damage my kidneys and end up on dialysis! So, I finally went to a urologist. He's done bladder & kidney ultrasounds , the urodynamics test (which really wasn't a big deal), and a cystoscopy. I self cath now after I go to completely empty my bladder. I'm always surprised the times quite a bit of urine is still left in my bladder. I am on a timed schedule of every 3 hours to avoid the unexpected urgency and accidents. And, I haven't had a UTI in 4 months!

My bladder issues almost resulted in a need for permanent placement of an indwelliing catheter. So far, so good and I haven't had to go there.

Please, find a specialist now when you are early into this game. They can help you manage incontinence so it doesn't take over your life .

Best wishes,

[owlnona]

I've had all those tests & was found to have a " Neurogenic" bladder.
Long story short (LOL) my urologist was & is fantastic,sent me for training in "Self cathing" which I now do several times a day as I can't feel my bladder,I live a full life & no more leaks,as I can "Cath" even when out!.
See a urologist as they can help,I have the one my neuro recomended,for almost 8yrs. now.
God Bless, Keep us posted owlnona.

[rdmc]

I urge you to please see a urologist/urogynocologist! I wish I hadn't procrastinated so long before adding this dr. to my list. It may have prevented the major health crisis i had last year ... which also lead to relapses, complications, and progression of my ms.

Needing to go again so quickly shows you aren't emptying completely & retained some urine. This can lead to a UTI. This can be a relatively minor event treatable with a short course of oral antibiotics or a serious one resulting in hospitalization (or worse).

Once I had a UTI that went to my kidneys and spent 10 days in the hospital on an IV antibiotic. I've had a couple that lead to a relapse that sent me to the hospital and rehab. Twice last year they lead to sepsis (blood infections). Once the sepsis lead to endocarditis (heart infection). The "vegetation" of the endocarditis attached to my pacemaker, which lead to surgery to remove it.

I'd had a surgery that put me into a major relapse 5 months previous to this, then a UTI that put me into another one 2 months prior to the endocarditis. I was already down twice and still recovering with rehab. when this happened.

The endocarditis and surgery really knocked me down & lead to another relapse and inpatient rehab. Then more rehab in a sub-acute facility.

3 months later I had a UTI & sepsis again ... this time it was even harder to treat, compounded when I fell in the hospital and broke my hip. Another surgery, more rehab, and another setback with my ms.

With my luck, I didn't want to damage my kidneys and end up on dialysis! So, I finally went to a urologist. He's done bladder & kidney ultrasounds , the urodynamics test (which really wasn't a big deal), and a cystoscopy. I self cath now after I go to completely empty my bladder. I'm always surprised the times quite a bit of urine is still left in my bladder. I am on a timed schedule of every 3 hours to avoid the unexpected urgency and accidents. And, I haven't had a UTI in 4 months!

My bladder issues almost resulted in a need for permanent placement of an indwelliing catheter. So far, so good and I haven't had to go there.

Please, find a specialist now when you are early into this game. They can help you manage incontinence so it doesn't take over your life .

Best wishes,

Wow Kimba...I wondered why you disappeared from the board for awhile. We were back and forthing on a pump thread, and then you were never around. Now I know why Sorry to hear about all your troubles, but glad to hear you've found something that works.

I totally agree with you about seeing a urologist. I've had a couple of those hospitalizations with IV antibiotics for UTI. Mine were more because I had bacteria cultures that were resistent to oral meds. Another good reason to remind everybody to always get a culture when you have a UTI. I have antibiotics on hand and test strips, but before I start on an antibiotic, I drop a sample off at the urologist so they can culture it, or go to the walk in on the weekend, because a culture is pretty vital. More than half the time, they end up calling me and tell me it's a "bug" that would respond better to another antibiotic, so I switch.

Cira, a urologist or urogynecologist, can get to the root of the problem. It might not be your MS, it could be prolapse from delivering the baby, probably is MS, but only a medical professional can tell you, and give you a strategy for dealing with it and meds, if needed.

In the meantime, get a bladder control pad and wear it. Unfortunately regular pantiliners might not handle it. But they make very thin bladder control pads, and it's better to be safe than sorry.

Hope you get some answers.

[Kimba22]

rdmc,

Hi again! Sorry I "disappeared" from your thread. Of course, now I'm worried about the surgery to replace my baclofen pump in a year or two after all this. Besides the initial relapse after my pacemaker surgery, I had 5 UTIs in 9 months. I ended up in the hospital on IV antibiotics for all of them.

My MS Specialist yanked me off Gilenya after the 2nd UTI that caused sepsis and endocarditis, because he felt my WBC count was too low. Another neurologist (mine is out of a different hospital than I was in) pulled me off Ampyra my 3rd UTI. Even off those meds, I still got two more UTIs... and the fourth quickly turned into another blood infection.

I never imagined so many complications, initiated by UTIs. 12 months of hospitalizations and in-patient rehab... 6 more months of rehab after i finally came home ... I'm still not back to where I was 18 months ago.

I figured I was managing my bladder issues "good enough" with pads and a rx for Detrol LA from my PCP. Well, in retrospect, I wasn't .

All of this didn't just affect me, it affected my family. It was really hard on all of us, especially my daughter. I still can't believe I missed a year of her life.

My advice to everyone is to see a urologist if you have ANY urinary issues! All I went through was NOT worth it!

[Cira]

Thank you all for your replies. And Kimba- bless your heart. You've been through a lot with the UTIs and complications. I would be a fool not to learn from your story.

I see my neuro on Wednesday & I've convinced myself to suck it up and talk to him about this. It's weird, my urgency has lessened but if I don't plan a trip to the bathroom, I can easily go 8-10 hours without feeling any urge, even when I've drank quite a bit. Probably not a great sign, especially given that I am absolutely certain I am having a flare. I dread the urologist, but I know that I need to take care of this, so I'll be talking to my neuro about a referral.

[Kimba22]

Hi Cira,

I'm glad you plan on talking to your neurologist. Hopefully, he/she has recommendations for a good urologist.

8-10 hours is TOO LONG. You should be going AT LEAST every 4-6 (absolute max). Besides risking a UTI, your bladder will get weaker if you keep retaining too much urine.

Best wishes,



Best wishes