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
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Lisalou19
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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 😉
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..?!?
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.
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.
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
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
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.
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.
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.
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
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Excessive and continuous bladder trouble......
Alternative radical approachs to treating auto immune diseases and other illnesses. 
Causes of autoimmune conditions. No studies done?
Covid and antiviral medication 
if my diagnosis & treatment for SLE took years to arrive, is the prior progression of my condition at all reversible?
