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PostPosted: Sat Dec 15, 2018 7:17 pm 
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Posts: 45
I’ve had ongoing issues with symptoms of OAB over the last year. Night time accidents returned as week a year ago after about a two year absence. The urologist gave me mybetriq which helps during the day to some degree - but it’s very up and down, super variable in terms of how much urgency I have, how much frequency, and if I have accidents or leakage. It’s so confusing to know what causes symptoms to get worse or better. Some days I feel as though I’m totally normal and crazy for having gone to the urologist in the first place. Other days, like today, I feel like I need to be in full blown diapers all the time.

It was pretty scary actually - exposing. I have graduated to the place where I only wear a male pad or a pull-up when I’m out and about in places that are unusual to me, if I don’t already know what and where the bathrooms are, etc, or when I know I’ll not easily be able to access a bathroom for an hour or two at a time. I generally don’t need to wear anything at home because I can run to the toilet at the first sign and it’s all good.
Well - today I was at work talking to some colleagues in a circle of four men in a hallway. I had had a slight urge a few minutes prior but did some deep kegal squeezes and the sensation had passed. After doing a small 2 minute task with these men, after I had that urge, then standing in the hallway, an urge returned that I honestly don’t know how I kept from flooding my pants. It was awful and scary. They were talking to me and all I could do was nod and smile and plead with myself not to let it happen right in front of them. I was only wearing a male pad and brown lightish tight fitting pants. It would’ve been terrible.
A few spurts came out but I was able to make it pass and that was that.

Ironically, I wouldn’t have had such fear had I been in a regular diaper or even a heavier duty Ns pull-up. But then I am anxious about people noticing that I have a diaper. Ugh. It’d be so much easier to just have pills that work all the way or at least in a reliable way even if the effect was limited. Not being able to know how my bladder will behave is anxiety ridden.

I’m sure I’m not alone - just wanted to share the emotional weight of this stupid thing - at least for me.


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PostPosted: Sat Dec 15, 2018 7:45 pm 
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Joined: Wed Sep 17, 2014 6:32 pm
Posts: 98
wwboy wrote:
I’ve had ongoing issues with symptoms of OAB over the last year. Night time accidents returned as week a year ago after about a two year absence. The urologist gave me mybetriq which helps during the day to some degree - but it’s very up and down, super variable in terms of how much urgency I have, how much frequency, and if I have accidents or leakage. It’s so confusing to know what causes symptoms to get worse or better. Some days I feel as though I’m totally normal and crazy for having gone to the urologist in the first place. Other days, like today, I feel like I need to be in full blown diapers all the time.

It was pretty scary actually - exposing. I have graduated to the place where I only wear a male pad or a pull-up when I’m out and about in places that are unusual to me, if I don’t already know what and where the bathrooms are, etc, or when I know I’ll not easily be able to access a bathroom for an hour or two at a time. I generally don’t need to wear anything at home because I can run to the toilet at the first sign and it’s all good.
Well - today I was at work talking to some colleagues in a circle of four men in a hallway. I had had a slight urge a few minutes prior but did some deep kegal squeezes and the sensation had passed. After doing a small 2 minute task with these men, after I had that urge, then standing in the hallway, an urge returned that I honestly don’t know how I kept from flooding my pants. It was awful and scary. They were talking to me and all I could do was nod and smile and plead with myself not to let it happen right in front of them. I was only wearing a male pad and brown lightish tight fitting pants. It would’ve been terrible.
A few spurts came out but I was able to make it pass and that was that.

Ironically, I wouldn’t have had such fear had I been in a regular diaper or even a heavier duty Ns pull-up. But then I am anxious about people noticing that I have a diaper. Ugh. It’d be so much easier to just have pills that work all the way or at least in a reliable way even if the effect was limited. Not being able to know how my bladder will behave is anxiety ridden.

I’m sure I’m not alone - just wanted to share the emotional weight of this stupid thing - at least for me.


While, we agree that a NorthShore Pull-On or NorthShore DynaDry Supreme Liner help relieve anxiety in these situations, it does sound to me like you need to return to the Urologist for some more guidance. There are many possible treatments, many of which may not involve medications. Only a licensed healthcare professional can work with you to find the best combination.

If you find that your current urologist is not that interested in helping you more than the current prescription...don't give up...there are many urologists or continence nurses that specialize in this area and will be able to help you without judging you for your issues.

There are continence nurses that see patients directly. To help find them, look for titles like:
Advanced Practice Urology Clinical Nurse Specialist
Urologic Clinical Nurse Specialist (CUCNS)
Urologic Nurse Practitioner (CUNP)

I would also suggest discussing with your primary physician and ask for referral for someone like this who specializes in this. Not all Urologists are experts in all aspects of these conditions.

All the best.


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PostPosted: Sun Dec 16, 2018 12:26 am 
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Joined: Wed Mar 22, 2017 8:01 pm
Posts: 358
Location: Florida
wwboy:
You definitely are not alone, what you are describing is very similar to my situation about 4 years ago. After a few minor "accidents" and a couple of other near misses I decided to quit trying to second guess my incontinence and wear appropriate protection full time. Initially I used pads but soon found I couldn't really rely on them. I then went to a medium quality pull-up which worked great for a while but as things progressed I started adding a Male Guard (pad) to the pull-up. This worked great as I was able to easily and discreetly change out the pad in a bathroom stall as needed and after a few changes just use the pull-up. This combo was also quite discreet. Once I went to the pad+pull-up combination my anxiety level dropped to near zero.

All this said I totally agree with Adam that this is possibly only a temporary solution and your situation should be discussed with a healthcare professional.


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PostPosted: Sun Dec 16, 2018 9:00 am 
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Joined: Sat Nov 02, 2013 8:28 am
Posts: 152
wwboy, I feel your fear. I too think I can go unprotected at times. But, when I do I become very anxious. On occasion, I try to wear traditional briefs when at home, but that doesn't always work. I never venture out without wearing a diaper. I have tried many different kinds of meds, but they didn't work well plus the side effects were not pleasant. In addition, I 'm now going through some heart issues and don't want to mess things up with a variety of drugs. I'm almost, but not quite, ready to accept diapers as my "new normal" kind of underwear. My heart problems are now my new priority. Incontinence and needing to wear diapers is not as big a deal anymore.

Dennis


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PostPosted: Wed Dec 19, 2018 9:33 am 
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Joined: Wed Mar 28, 2018 11:03 pm
Posts: 45
NorthShoreAdam wrote:
wwboy wrote:
I’ve had ongoing issues with symptoms of OAB over the last year. Night time accidents returned as week a year ago after about a two year absence. The urologist gave me mybetriq which helps during the day to some degree - but it’s very up and down, super variable in terms of how much urgency I have, how much frequency, and if I have accidents or leakage. It’s so confusing to know what causes symptoms to get worse or better. Some days I feel as though I’m totally normal and crazy for having gone to the urologist in the first place. Other days, like today, I feel like I need to be in full blown diapers all the time.

It was pretty scary actually - exposing. I have graduated to the place where I only wear a male pad or a pull-up when I’m out and about in places that are unusual to me, if I don’t already know what and where the bathrooms are, etc, or when I know I’ll not easily be able to access a bathroom for an hour or two at a time. I generally don’t need to wear anything at home because I can run to the toilet at the first sign and it’s all good.
Well - today I was at work talking to some colleagues in a circle of four men in a hallway. I had had a slight urge a few minutes prior but did some deep kegal squeezes and the sensation had passed. After doing a small 2 minute task with these men, after I had that urge, then standing in the hallway, an urge returned that I honestly don’t know how I kept from flooding my pants. It was awful and scary. They were talking to me and all I could do was nod and smile and plead with myself not to let it happen right in front of them. I was only wearing a male pad and brown lightish tight fitting pants. It would’ve been terrible.
A few spurts came out but I was able to make it pass and that was that.

Ironically, I wouldn’t have had such fear had I been in a regular diaper or even a heavier duty Ns pull-up. But then I am anxious about people noticing that I have a diaper. Ugh. It’d be so much easier to just have pills that work all the way or at least in a reliable way even if the effect was limited. Not being able to know how my bladder will behave is anxiety ridden.

I’m sure I’m not alone - just wanted to share the emotional weight of this stupid thing - at least for me.


While, we agree that a NorthShore Pull-On or NorthShore DynaDry Supreme Liner help relieve anxiety in these situations, it does sound to me like you need to return to the Urologist for some more guidance. There are many possible treatments, many of which may not involve medications. Only a licensed healthcare professional can work with you to find the best combination.

If you find that your current urologist is not that interested in helping you more than the current prescription...don't give up...there are many urologists or continence nurses that specialize in this area and will be able to help you without judging you for your issues.

There are continence nurses that see patients directly. To help find them, look for titles like:
Advanced Practice Urology Clinical Nurse Specialist
Urologic Clinical Nurse Specialist (CUCNS)
Urologic Nurse Practitioner (CUNP)

I would also suggest discussing with your primary physician and ask for referral for someone like this who specializes in this. Not all Urologists are experts in all aspects of these conditions.

All the best.


Thanks for taking the time to reply. I appreciate it. I do plan to continue seeing urologists. My general doctor does know about the issue and the medication I’ve been taking. I actually got s referral from him to see a higher level urology specialist in Portland not long ago but that doctor wasn’t able to give me any more advice or hope than the urologist in my town.
Both seem to think that an interstim implant or Botox is the next logical step to try. I feel as though I’m not st that place yet and like those are too extreme. The people I read about online who have those procedures or watch on YouTube are folks with major neurological disease like MS which I don’t seem to have - or other irrelevant challenges to my situation, like being a post-childbirth female.
Anyways, I’m continuing the path. Some days are better than others — yesterday for example, I had virtually no symptoms to speak of!
Ugh, it’s so maddening.


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PostPosted: Sun Dec 23, 2018 5:13 pm 
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Joined: Thu Nov 02, 2017 11:59 am
Posts: 259
Location: Florida
wwboy wrote:
Not being able to know how my bladder will behave is anxiety ridden.

I’m sure I’m not alone - just wanted to share the emotional weight of this stupid thing - at least for me.



Anxiety is normal for those of us living with incontinence, what you feel is normal! keep seeing the doctors to hopefully find the cause and eliminate the bladder symptoms, secondly is find a product that can help you manage the leakage that you can trust will provide the protection YOU need once you find a product that will work it will give you some peace of mind for the moments that you need it and that will reduce your anxiety, having lived with incontinence issues my whole life I can say that the anxiety does not fully go away it will always be there in the back of your mind but it is manageable! if you need help with the anxiety the doctors might be able to offer some additional help.

Don't worry about people noticing if you need a "diaper" people do not pay that much attention! as long as it does not show or can be heard you will be fine!

_________________
Incontinence does not Define NOR limit you!
www.realworldincon.com
realworldincon@gmail.com
#realworldic on Facebook and Twitter


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PostPosted: Sun Dec 23, 2018 9:43 pm 
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Joined: Wed Mar 28, 2018 11:03 pm
Posts: 45
realworldic wrote:
wwboy wrote:
Not being able to know how my bladder will behave is anxiety ridden.

I’m sure I’m not alone - just wanted to share the emotional weight of this stupid thing - at least for me.



Anxiety is normal for those of us living with incontinence, what you feel is normal! keep seeing the doctors to hopefully find the cause and eliminate the bladder symptoms, secondly is find a product that can help you manage the leakage that you can trust will provide the protection YOU need once you find a product that will work it will give you some peace of mind for the moments that you need it and that will reduce your anxiety, having lived with incontinence issues my whole life I can say that the anxiety does not fully go away it will always be there in the back of your mind but it is manageable! if you need help with the anxiety the doctors might be able to offer some additional help.

Don't worry about people noticing if you need a "diaper" people do not pay that much attention! as long as it does not show or can be heard you will be fine!


Thank you for your response. Yep, it’s encouraging but also doesn’t relieve it as you’d expect.

Oddly enough, I visited a doctor I see only once a year as a follow up to Bariatric surgery I had some years ago. She freaked out (in a good way) about my bladder problems and wants to refer me to another urologist. She also ordered a 24hr urine sample test and a PSA test (which came back at 3...seems a little high considering I’m only in my late 30s). We’ll see if I can figure out the cause of the OAB symptoms. The last couple days have been much better regarding leaks and urgency.

So strange how it comes and goes like that.


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