New and need help!!

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Hey everyone!

My name is Matt and I’m new to all of this and was looking for some help. A little about me; I’m a healthy 29 year old that recently was told I have urge incontinence/overactive bladder and I have a few questions if anyone on here could help me I’d really appreciate it!

So about 4 months ago I started dribbling quite a bit after I would pee. I thought no big deal as I’ve always heard “No matter how long you shake and dance, the last few drops end up on your pants.” Not long after that began I started having sudden intense urges to urinate and all of a sudden I would be going and I could kinda slow it but not completely stop it.

So I went to the urologist and had a bunch of test done and everything came back completely normal. They gave me Myrbetriq which hardly worked and gave me the worst headaches I’ve ever experienced. They then took me off of that and put me on Vesicare which did not work at all.

My questions are:
1. Is it common to have all test come back normal and still have these problems?
2. What would y’all recommend I do?

Thanks for any help!

 

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Hey Matt,

Welcome. You are going to find a lot of help here. I myself am 34 and have OAB as well. I have no other medical conditions other than some significant bedwetting issues (and have my whole life).

I have been to many doctors as well and their response was pretty much the same as yours, "tests are normal and it shouldn't be happening." It can be frustrating.

I have just resorted to wearing diapers. I think most of us with incontinence/OAB find it more comfortable than any solution the medical community recommend. I personally don't mind it as much now, but diapers as an adult certainly took some time for me to adjust to. I would recommend you find a really high quality diaper that works and fits well. It will help you feel more secure and not worry so much about sudden voids.

Best of luck to ya!

DD

 

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Don’t give up!! Keep working with your doctor and try to find some medicine that works. Also discuss inter stem devices with your dr. To see if that could help. (Basically it’s a device implanted in you butt that helps control the nerves to the bladder. ). I know it may not feel like it now but there are a whole lot worse things than wearin a diaper. Good luck to you.

 

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I have urge incontinence that is the result of a surgical mishap when I was 14 years old. I’m 75 now. So I’ve been dealing with bladder-control issues for a long time. Despite having undergone every test you could imagine (and then some), urologists have never been able to figure out the precise cause of my problem. They say that it must be due to issues with the nerves that control my bladder, but the exact nature of the problem is unknown. The notion that the nervous system is involved is likely true because I have little sensation about how full my bladder until I get a sudden very intense “urge” to urinate which quickly becomes irresistible and painful and leads to my bladder emptying itself uncontrollably. So I wear a diaper 24/7. I’ve tried using an external catheter and leg bag, but I prefer diapers.

 

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Hello. I'm 38 and have neurogenic bladder. I will sometime go and not even know it and other times I have little time to make it to the bathroom.ive Ben through so many tests that all came back mostly normal. The neurologist said my nervebresponse in my left leg is slightly low. I was literally a pin cushion that day. To manage I've tried all the meds and they have either had bad side effects, didn't work, or stopped working after a few months. I've tried Botox in my bladder to calm the spasms but that ended up working too well and I had to be catheterized to urinate. I couldn't use a leg bag because they would just slide down my leg no matter how tight I made them. So I just let the cath go into a diaper. I've been in diapers for a long time and they are just part of everyday life. No one notices them. I use a brand called confidry 24/7. They are the best on the market.

 

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Ask your Doctor about InTone MV.

 

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I have OAB and have had the whole battery of tests done and nothing was found. Doctor said my symtpoms all match OAB with urge incontinence but they couldn't replicate a leaking episode or obvious detrusor spasms during the tests. I tried all the meds too. Nothing worked and/or the side effects were too much. I just wear diapers now and though it's a very difficult thing to adjust to, it becomes very manageable.

 

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I have OAB and admittedly haven't seen a doctor about it in a long time. How much control I have tends to vary from some days having no control issues to other days having frequent large accidents. I have been on meds in the past and they helped some but the side effects were too much. I manage by wearing protection when I need that whether that be diapers, pull ups or pads. I would recommend trying to find absorbent products that work for you

 

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Thank y’all so much for the advice and encouragement! Do most of y’all wear the pull on’s or tabbed style? Ive been wearing the real fits but I’m afraid to be more than a few steps from a bathroom. Again thank y’all!!

 

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I use a mixture of premium pads with mesh pants, pull-ups and diapers depending on that day's situation. I would recommend looking online for products and getting higher quality products than you can get in stores typically they can handle more and are more comfortable IMO. If you have any questions feel free to message me

 

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Thank y’all so much for the advice and encouragement! Do most of y’all wear the pull on’s or tabbed style? Ive been wearing the real fits but I’m afraid to be more than a few steps from a bathroom. Again thank y’all!!

Pull ups are worthless. So are cloth backed diapers. Pull ups sag and the weight of the urine make them slide off/down and you'll leak. Pull ups and cloth backed diapers suck at containing the smell. A good plastic backed diaper like dry 24/7 or better dry will keep your skin in better shape, contain he smell, not leak, and last far longer.

 

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Thank y’all so much for the advice and encouragement! Do most of y’all wear the pull on’s or tabbed style? Ive been wearing the real fits but I’m afraid to be more than a few steps from a bathroom. Again thank y’all!!

Pull ups are worthless. So are cloth backed diapers. Pull ups sag and the weight of the urine make them slide off/down and you'll leak. Pull ups and cloth backed diapers suck at containing the smell. A good plastic backed diaper like dry 24/7 or better dry will keep your skin in better shape, contain he smell, not leak, and last far longer.

I have to disagree premium pull ups like Northshore and Abena's work pretty well for me and can take at least one large accident or two with a booster pad

 

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Interstim is not recommended by everyone. Some of us have muscle and skeletal injuries. I wear menstrual pads with wings that have maximum absorbency. No wings no protection. I carry zinc oxide for occasional rashes. Meds made me worse so they discontinued those. What works is biofeedback, fluid management, double voiding, timed toilet trips and relaxation methods while urinating to properly release more while on the toilet and not letting lengthy work or fun distract from the needed voiding schedule whether you feel the need to go or not and cold body temperature management. My urges have gone down with my timed trips combined with conscious relaxation. I dont have to cath as much as I used to. My pessary has completely ended the in between dribbles but that's for women only. Timed toilet trips has reduced my stress cough or sneeze overspillage from having too much urine in the bladder when I cough or sneeze by keeping the bladder reservoir fluid level down with timed toilet trips. Managing work, home, traffic and other stress is important. Relax and let it flow. Heat pads help me to relax muscles. I use ice sometimes to stop muscles from spasming in my low back and reduce inflammation around injuries.
I get a strong urge IC when I am shocked physically or emotionally or because of a sudden cold body temperature wave and I haven't done my timed toilet trips with relaxation methods and double voiding. So I treat my body for shock instead of shocking it further.

 

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Hi Matt, and welcome to the forums. I’m 36 and mostly healthy other than my bladder stuff (interstitial cystitis and OAB) most of us have been through the battery of tests and come up without any sure cause for our issues. I was worried they would take me for a fraud (maybe they did!!) at the same time my bladder issues started I was having some extreme mental health issues, I developed severe anxiety and was also diagnosed as being Bipolar II. It was an awful lot to take in at once. I tried all the medications they gave me. I pretty sure there are 7 or so meds for OAB, mostly in the anticholinergic classification of meds, I think I tried 4 of them before I gave up on pills. I was wearing pads, pull-ups, and diapers anyway, so why take meds and deal with the side effects if I’m still in diapers? During that same time my OAB/interstitial cystitis got so bad the only option the urology team could come up with was to insert a Foley catheter in the ER. I was given a prescription for Foley catheters and related supplies two days after that and have been a regular foley user (and still in diapers) ever since. That was 3 1/2 years ago. Is there light at the end of the tunnel? I don’t think so, but I know when my foley goes in, I will have instant relief from my bladder symptoms. For me it’s like a “magic pill” that makes all (most) of my problems go away, or at least temporarily. My advice to you is to experiment with different levels of protection (pads, pull-ups, diapers) or whatever you think you’ll manage best with, and try different brands to find your ideal product. It takes a lot of trial and error, but I’m sure you’ll find your best fit. As always, we’re here to help, I have products that work well for me, though they may not work well for everybody. There is no one size fits all.
Good Luck
-Paul

 

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I was worried they would take me for a fraud (maybe they did!!)

This was a big concern of mine. My ex actually thought it was all in my head because the doctors couldn't/can't find the reason for my incontinence. They know my bladder is spasaming like crazy because they've seen it in action through tests, but she still wouldn't believe them or me (despite being there during the tests).
The other thing is that almost every support forum I've found are diaper fetish based. I see some positives (possibly finding a partner who is accepting of my condition, finding better diapers, tips and tricks to manage, normalization of wearing?) but there are definitely negatives (bull sh*t stories, giving our condition a bad name in the eyes of the public).

 

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Spaz you brought up legal issues and you are not the only one with that problem. IC falls under Urology which is a medical area.
Mental uses a book called the DSM with its current updated number for latest the edition out. Sounds like your ex just is angry and wants to say you are a mental case to the court for a divorce win.
Many people have this problem.
You could try finding a Judge that wears diapers or pullups or pads.

 

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I would definitely recommend persevering and pursuing managing your condition of incontinence with your primary care doctor until both you and your doctor are satisfied that you have come upon a mutually agreed-upon solution for managing your condition. Often, I do not believe that a lot of invasive, and even painful, tests will ultimately produce good results for anyone. For me, I simply had to swallow my fear and embarrassment, and have the courage to talk to my doctor about my condition of incontinence about four years ago. He prescribed pull-ups at first, which promptly leaked like a sieve. I have found that keeping things simple is key. For me, that means wearing adult diapers every day that are highly absorbent, fit well, and are comfortable, as well as stay attached to me and snug. I didn't need a lot of fancy medical testing. It was a simple case of diabetic neuropathy that affected the nerves of my bladder, causing urge incontinence. So, be brave, hopeful, and confident, and never ashamed. Incontinence does not have to rule your life - you can overcome it! Hope this helped you some. Take care!