Bladder out of control

Support
1

I'm new to Fibro and I've been reading a lot and going to my Rheumatologist. Last week I had an infection, they found E coli in my urine and gave me meds, which seemed to help. Then this weekend I started having symptoms again and then tonight I could not control my bladder, I had the feeling of needing to go and got up to go and then I felt like I couldn't hold it and as much as I tried to stop myself I just went. I am so upset and hate this I feel like I am losing control of my body. The Dr told me when he first said that I have Fibro that this doesn't effect the organs or depilated you. Yet I feel like at times I have no control at all, in pain everyday, depressed cause as much as my family wants to be there for me they don't have a clue what it like or how I feel and when I am so bad with the pain, fatigue or headaches, etc. and have to miss work, they get upset. I am have such a hard time with this and feel like I don't have the support that I need from people who truly understand and know just what I'm going through. So frustrated!!

So what I really need to know now though is about the bladder control issue and if anyone else has had this.

Anything right now would greatly help, I need it.

Thanks!

2

Hi Dana,

Yes, I do. i just had a bout in December for a week or two where every time I coughed I also urinated. Add to that the fact that I was coughing nonstop for all of that time (thanks, Florida,) and you'll get the picture. I couldn't go out at all during that time and was constantly washing and rewashing pants and underwear. It was horrible and gross!

I hear that there is an over-the-counter patch available now that helps to control urination. If that interests you, please ask your doctor if it would be okay to try it (no drug interactions.)

I have some protection now from the problem because I use Nortriptyline for getting to sleep and it makes it harder for me to go, which is a good thing! Less leakage and down-right accidents. Except for December.

If your doctor is particularly stubborn, stuff a pair of your urine-soaked undies into a plastic bag and bring it with you to your appointment and ask if he'd like to see what is happening via the underwear? i'm willing to bet he'll back right off and give you something to help you.

3

Hi Dana,

I don't get urine/bladder infections but I do suffer from bladder control.

You're doc may be right in that fibro doesn't affect the internal organs but it does affect the muscles so with the bladder (I'm an ex-nurse!) we have sphincter muscles that control when we need to pee, but my doc said these muscles can weaken with fibro, just like after child birth, and cause some stress incontinence/urgency and leakage.

I have tried pelvic floor exercises but it hasn't made much difference. If I cough or sneeze with a full bladder I leak!! plus in the mornings if, on a rare occasion I sleep well, I find I sometimes dribble a bit whilst on my way to the loo.

When I'm going out, even if I don't feel like needing a wee I go anyway and make sure my bladder is empty before leaving the house, as I've been caught out a couple of times and needed to use a loo in a coffee shop etc.

If I'm going on a car journey I usually wear a pad, just in case!! But most of the time I'm ok as I tend to only be out for an hour or so, round the shops or a visit to the docs.

I know there's medication to help plus a little operation to tighten the sphincter muscles on the neck of the bladder, if you wanted to chat to your doc about these.

It's just something else we have to contend with!! But if it is becoming a problem in your daily life I'd have another chat with your doc re the options available to help you.

Plus, if you have frequent bladder infections, like some ladies do, this, over time can weaken those little muscles.

Mine might not be completely due to fibro though, I've had several gynae ops over the years and they inflate your abdomen with a gas to move the bladder & bowel out the way, so this can interfere with bladder control too.

I wish you luck and hope you get the help you want, what we ladies go through eh...lol.

Love Lucy xx

4

Hi Dana,
I have experienced something like you wrote of. Seems, my bladder gets irritated during a flare. I was complaining of bladder infections over and over, but my urine always came back clean. So I quit talking to the dr about them and tried some AZO. It worked! My instinct tells me that those bladder irritations are my body’s way of telling me, beyond a shadow of doubt, that I’m having a full on flare.

With that said, I now have time (had to quit my job) to fully investigate these bladder “irritations” to rule out life threatening diseases. So, today, while at my PCP, I’ll ask for a referral to a urologist to be sure it is just part of my fibro flares. If it’s something else, well then… One-day-at-a-time…

Dana, I would urge you to ask to see a urologist. Ruling out other problems often makes me feel better.
Best Regards, Kim

5

Ha Petunia Girl! I’ve gone to those extremes too! I’ve learned to do whatever it takes to make doctors listen!