Overactive bladder and autoimmune illnesses???

[Lisalou19]

For a while now I’ve had issues with my bladder, something made worse by flares.

I’ve never been able to make sense of why it gets worse but I’ve also never suspected that having 3 children was to blame for constantly needing to use the toilet which increases ten fold with my flares and often resulting in accidents 😳

Yesterday I had my long awaited urologist appointment and was diagnosed with an over active bladder and started medication.

I wonder how many others have been affected by this here: constantly needed to pee, sudden urge to pee, lack of control during flares and now wonder if our nerves go crazy during flares or is it muscular???

Your bladder experience is much welcomed here . I feel content that this new medication will make this symptom easier 🤓xx

[Lupiknits]

Hmm .... currently going through bladder stimulation treatment to help urge incontinence. My good old bowels are in the same way. There’s no clarity whether there’s any connection with my lucky dip auto immune disorders and the fact that the muscles on one side of my pelvic floor have dodged their responsibility to uphold me.

My mantra is “never mind why, let’s fix it” . I hate it. I’m not a bit happy, but there you go 😉

[Lisalou19 in reply to Lupiknits]

😔. I know you are affected by this issue quite badly.

What does the stimulation treatment involve?

The positive thing is that this can be corrected, right?

X

[Lupiknits in reply to Lisalou19]

Yes, it seems it can be improved greatly for me, I hope, via stimulation then feedback. I’ve just started this and it’s likely to take some time.

There are medications to try before reaching this point though. Do try them!

[Lisalou19 in reply to Lupiknits]

I do hope this treatment works for you and you get some normality back in your life

X

[maye1]

I’ve had instances of retention and incontinence (lack of control) when I had a slew of other symptoms. A neurologist said it was stress incontinence (which it was not). It resolved on its own so I haven’t investigated more but I always wondered if it was because the bladder is made of connective tissue..?!?

Hope your’s improves with the meds pronto!

Xx

[Buckley123]

I get this too I thought it was down to having three kids xx

[Jmiller623]

I think it’s urge incontinence secondary to neuropathy. My GI doc helped me pick up on this. I think the nerve fibers that control your bladder and/or sphincter get inflamed causing bladder spasms or sphincter spasms and incontinence. Most medications that treat this quiet the bladder spasms or target alpha receptors to keep the sphincter tight so you gain more control.

I am realizing that lupus has a few flavors. One seems to be neuropathy likely secondary to vascular or proclotting mechanisms causing nerve inflammation. Nerves need blood supply too and this seems to be compromised in lupus. For some reason the autonomic system get hits pretty hard and this takes a toll on the nerves that control the squeeze in your blood vessels. You get a chicken and the egg scenario with the blood vessel effects nerve effects more vessels scenario. I’d guess fibromyalgia is caused by inflammation of the soft tissue nerves which would cause spasms and inflammation everywhere.

Some people have pelvic floor training or biofeedback to help control excretory functions but I think this works best for stress incontinence. Not really sure if it has any benefit in urge. Ob/gyn or urology could best answer this.

[Lisalou19 in reply to Jmiller623]

It was recently mentioned to me I may have small fibre neuropathy. Would make complete sense. X

[Jmiller623 in reply to Lisalou19]

🙌👏🎯

[KayHimm in reply to Lisalou19]

Is the medication helping? The urologist told me it would help even if it was autonomic neuropathy or age-related. She was right!

Hope the same for you!

Xk

[Lisalou19 in reply to KayHimm]

I think it’s too early to tell

Although I’ve not done an OMG moment since I started.

I also have to rock backwards and forwards when on the toilet to encourage my bladder to fully empty. I hope there’s no secret cameras anywhere 🤣xx

[KayHimm in reply to Lisalou19]

And no 🎥 here! I think the medication can take a while to get the full effect. The Toviaz I take does seem to be even more effective now. You may have a three-prong approach with the steroids, DMARD and Myrbetriq, right?

Those Myrbetriq tablets are worth more to American women than their Botox. The drug is $411 a month or $4932 a year to not wet your pants in the street.

Xk

[misty14]

I too Lisalu have problems with my bladder at times and it's been put down to inflammation of the nerves. I do find steroids help so you might too!. Hope your pills work as well as its an added extra we can do without!. Keep us posted how you get on. Xx

[Lisalou19 in reply to misty14]

100% will do

Xx

[loopy-lou]

I too have bladder problems but have again thought it was age and having had 3 children. Some nights I have to get up 3-4 times. I realise from reading the above posts that it is not normal. I recently had a relative say I can't need to go again as I have just been! However, I really did need to go again. I hope your new medication works for you. Please let us know as I think I need to sort this out too x

[Lisalou19 in reply to loopy-lou]

You know it was about 3 years ago that someone whispered in my ear that they thought I needed to go doctors because of how often I needed a toilet.

For us it becomes normal so we don’t really realise it’s impact.

It’s onky since I flare pretty much continuously that I realised how much it was impacting my life. I deffo recommend opening up about it. Xx

[KayHimm in reply to loopy-lou]

You should not have to live with this. There are really good medications now for women with this issue. Talk to your GP about a urology referral. There are urologists who actually specialize in just this problem.

K

[loopy4me]

I have been peeing like mad most of my life. Started taking Plaquenil about 20 days ago and I notice I am not peeing nearly as much. I don’t think it is in my head because my wife noticed it first. So I am happy about starting the medicine now. I guess I refuse myself to believe I have lupus or mctd.

[Jmiller623 in reply to loopy4me]

Yes. Yes. Yes. I used to urinate something like 10-12 times a day. Frequent UTI as teenager. I’d always joke with colleagues that I had diabetes or something because of frequent pee breaks. Started Plaquenil and now at something like 6 times a day. Much better. All these little things I always wondered about have improved on Plaquenil.

[loopy4me in reply to Jmiller623]

I feel weird peeing only every four hours instead of every hour or two. My kids have similar problems and told them to keep an eye on it. I am very happy with the Plaquenil so far. Not even a month in and notice differences in urination, less pain in hamstrings, jaws, and bottom of feet

[Lisalou19 in reply to loopy4me]

So happy to read such positive comments. It’s great to read a difference can be made xx

[stiff19]

I have started to get this and wonder if weak muscles? I’ve also started tinkling when coughslso bloated tummy 😩 if it doesn’t rain it pours