Anyone like me (mostly overactive bladder)???

PCBaby said:
Regardless of what you think about the eventual efficacy of meds, I assume you have no medical training. So I will take my urologist's advice on the appropriate course of action.

I was actually a combat medic with the Royal Marine Commandos, then a paramedic and eventually a paramedic instructor in civvy street so I do have some medical knowledge. Secondly, I have been through just about every med in the book via my urologist as well as having everything from the normal urology run-ups to pet, cat and MRI scans, so again I do have some idea of what I'm talking about. i always find it best never to assume anything about a person.

Pull ups are fine, but if you sit in a wet one for a while it will leak, if you cannot get to the bathroom in time and your penis is pointing upwards they will leak. And yes I have used pull ups. My other options apart from nappies are an in-dwelling catheter and as my body doesn't process calcium normally this would lead to frequent UTI's, blockages and kidney infections. Relaxed I'm too small for a condom cath and the other option is a urostomy which because of other health problems is out of the question.
But you are neither a physician nor do you have training in urology. All you know for certain is what has or has not worked for you. Your experience with meds doesn't predict anyone else's. So, you are doing a disservice to anyone by discouraging their use. And, you may not have bladder control along with OAB. But I have had OAB for several years, and still have good control. Again, there's no reason to expect that your experience is predictive of mine. Your suggestions for bed pads are off the mark, because as I have said, I am not incontinent, and do not wet at night.

Regardless, I trust my board-certified urologist to recommend the best course of action to relieve the OAB.

Maybe you like to wear a diaper. That's fine. I don't. I would prefer to pee normally whenever possible, even if it is frequently. But I would like something in place to handle difficult or awkward situations. I think a pull up works best for most of those scenarios. You say a brief can be "retaped at least once", which suggests that the more it is retaped, the more likely is the tape to fail. If I wear a pull up, I might pee normally 4 or more times before either using it or simply removing it. It doesn't sound like that will work with a brief. I expect that I will occasionally wear briefs. That will be when I expect to be in situations where access to a bathroom is unpredictable for several hours.

A lot of folks mention how much more difficult it is to change a pull up. In my situation, it's not really that hard. I normally wear loafers. So I can slip into the handicap stall in the bathroom, where my feet are not visible, and quickly remove shoes, pants and pull up. Since I usually just need it for 1-2 voids, a pull up with that capacity is a lot smaller than say a full Megamax. I can more easily hide a lightly filled pullup than a full brief.
 
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But you are neither a physician nor do you have training in urology. All you know for certain is what has or has not worked for you. Your experience with meds doesn't predict anyone else's. So, you are doing a disservice to anyone by discouraging their use. And, you may not have bladder control along with OAB. But I have had OAB for several years, and still have good control. Again, there's no reason to expect that your experience is predictive of mine. Your suggestions for bed pads are off the mark, because as I have said, I am not incontinent, and do not wet at night.

If you are going to quote me at least have the decency to do it correctly. I did not and never have discouraged you or anyone else from taking meds, I merely said that other meds in the same group would probably be ineffective. I've also been dealing with this problem from birth so I may well have more insight into this than you do. I offered advice, you decided to throw it back. If you don't like an answer simply ignore it or don't ask the question in the first place.
 
[
Maybe you like to wear a diaper. That's fine. I don't. I would prefer to pee normally whenever possible, even if it is frequently. But I would like something in place to handle difficult or awkward situations. I think a pull up works best for most of those scenarios. You say a brief can be "retaped at least once", which suggests that the more it is retaped, the more likely is the tape to fail. If I wear a pull up, I might pee normally 4 or more times before either using it or simply removing it. It doesn't sound like that will work with a brief. I expect that I will occasionally wear briefs. That will be when I expect to be in situations where access to a bathroom is unpredictable for several hours.

A lot of folks mention how much more difficult it is to change a pull up. In my situation, it's not really that hard. I normally wear loafers. So I can slip into the handicap stall in the bathroom, where my feet are not visible, and quickly remove shoes, pants and pull up. Since I usually just need it for 1-2 voids, a pull up with that capacity is a lot smaller than say a full Megamax. I can more easily hide a lightly filled pullup than a full brief.[/QUOTE]

This is what I do, I stand at work all day, I also have to make many trips to the bathroom to answer urge, I can relive a bit in my pull-up and cut trips down from 5 or 6 a day to 2 or 3. I have fair control and if i release a bit the urge goes away for a while. I know weather I am getting to leaking point and the fact that I don't have to sit down I don't worry about press out , if i have reached near capacity I will remove the pull up on my last trip of the day and put on a spare that keep on hand but I don't have to do that very often.. nighttime I wear a diaper so i am not up and down all night.
 
ltaluv said:
As far as meds go, you'll find that people for whom meds work well don't generally end up inhabiting incontinence support forums, so it's perhaps understandable that many here have had less-than-ideal experiences with meds. I would encourage you to try what meds your urologist suggests, but realize that there is a significant subset of patients who do not respond well or have too many side effects.
I think you are right about those who frequent this topic. But there isn't really another topic that quite matches my condition, so I thought this was the best place to ask. "Diaper Talk" is OK for questions about products. But I think it has a higher proportion of people who wear diapers due to preference rather than medical condition. So I don't expect those who want to wear diapers -- and especially those who enjoy bulky, noisy ones -- to critically consider options for someone like me whose goal is to not wear at all if possible, to use it for voids only when necessary, and to wear the least bulky product that accommodates the circumstances at hand.
 
PCBaby said:
But you are neither a physician nor do you have training in urology. All you know for certain is what has or has not worked for you. Your experience with meds doesn't predict anyone else's. So, you are doing a disservice to anyone by discouraging their use. And, you may not have bladder control along with OAB. But I have had OAB for several years, and still have good control. Again, there's no reason to expect that your experience is predictive of mine. Your suggestions for bed pads are off the mark, because as I have said, I am not incontinent, and do not wet at night.

If you are going to quote me at least have the decency to do it correctly. I did not and never have discouraged you or anyone else from taking meds, I merely said that other meds in the same group would probably be ineffective. I've also been dealing with this problem from birth so I may well have more insight into this than you do. I offered advice, you decided to throw it back. If you don't like an answer simply ignore it or don't ask the question in the first place.
OK. You said "if the meds your Doctor has prescribed you aren't working than other meds will also probably be unsuccessful". I don't find those words encouraging. I said that I had been trying medications and had not seen an improvement. But I've only taken them for a few weeks. I haven't given up on them. When you say other meds will be unsuccessful, are you referring to just anti-cholinergics, or are you also including Mirabregon, which is a works by a completely different mechanism?

My initial post sums up what I was requesting, which is insights from people who have the same condition as me. And that is OAB without incontinence. I have OAB-dry. You apparently have OAB-wet. I realize that your intent is to help. But you don't have the same condition. Your responses are more relevant to yours than mine. But suggesting bed pads and wearing diapers overnight are especially irrelevant to me. I have not wet the bed since I was a child (which is well over 50 years ago).

I have options that OAB-wet sufferers do not ( like often not wearing a diaper at all). I understand the pluses and minuses of pull ups. But since I am not incontinent, I don't have to rely on them to catch everything. My intent is to use them only when getting to a bathroom is awkward or unpredictable. I'd like to hear ideas and experience from people in that same situation.
 
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chamberpot said:
[
This is what I do, I stand at work all day, I also have to make many trips to the bathroom to answer urge, I can relive a bit in my pull-up and cut trips down from 5 or 6 a day to 2 or 3. I have fair control and if i release a bit the urge goes away for a while. I know weather I am getting to leaking point and the fact that I don't have to sit down I don't worry about press out
I guess I am fortunate that leaks are not an issue for me. I never reach that point unless I've held my urine to a point of extreme discomfort. And that is usually quite some time after the initial urge hits me. As I've said, I can usually get to a bathroom in plenty of time, assuming one is not too far away, and it is convenient and not awkward to do so. But sometimes it is not. For example, I was having dental recently, and the urge struck while I was in the chair, and before the dentist was finished. Thankfully, I had worn a pull up. So I used that, first releasing a little bit at first to relieve the urge. Then after giving it some time to be absorbed, I released more. Following that, I went home (which is what I would have done anyway) and changed.
 
Bobsled said:
I guess I am fortunate that leaks are not an issue for me. I never reach that point unless I've held my urine to a point of extreme discomfort. And that is usually quite some time after the initial urge hits me. As I've said, I can usually get to a bathroom in plenty of time, assuming one is not too far away, and it is convenient and not awkward to do so. But sometimes it is not. For example, I was having dental recently, and the urge struck while I was in the chair, and before the dentist was finished. Thankfully, I had worn a pull up. So I used that, first releasing a little bit at first to relieve the urge. Then after giving it some time to be absorbed, I released more. Following that, I went home (which is what I would have done anyway) and changed.


Bobsled, folks have been taking the time to offer advice based on their experiences. While it may not be exactly like you, maybe some of their suggestions can be utilized to your benefit. Whether OAB-[DRY|WET] the common factor are the urges and frequency. It seems thanking them for their responses and reflecting upon it seems like the polite thing to do.

Some additional information/suggestions that have helped me:

1. drink small quantities on a semi-regular schedule rather than large amounts less frequently.
2. concentrated urine can irritate the bladder and cause more urges and discomfort
3. lose some weight, assuming you are overweight
4. determine if certain foods create more frequency and eliminate them from your diet - acidic foods, caffeine, chocolate, spicy foods, carbonated drinks
5. manage your stress as this can cause increased urges.
6. choose when to hydrate - day vs evening (work vs. home)
7. talk about it in a support network/forum as it helps with the mental math.
8. loose clothing is better than tight fitting - at least around the waist.
 
Bobsled, you seem to know what solution you want to use for your issues, and you seem rather critical of those whose advice does not match your chosen solution, so I'm not sure what you want from this group. In your first post, you expressed frustration that a pull-up might only hold 1-2 voids and might not be easy to change discreetly, but when others have suggested that briefs might be better at these things you have criticized them.

Further, my bladder issues are essentially identical to what you've described of your issues, as I mentioned in my first post on this topic. I suggested that briefs might be worth considering, and I explained why. You repeated that pullups are working fine for you, and complained that the suggestion of briefs was coming from people who are looking for an excuse to wear them 24/7. I've pointed out that I do not want 24/7, nor am I looking for an excuse, but that seems not to have swayed your opinion.

So, if I may be so bold as to ask, what DO you want from this forum? Are you looking for affirmation that you're making the best choice? Are you simply trolling to see how much discord you can stir up? If you will tell us what you want, it will be easier to help you.
 
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PCBaby said:
But you are neither a physician nor do you have training in urology. All you know for certain is what has or has not worked for you. Your experience with meds doesn't predict anyone else's. So, you are doing a disservice to anyone by discouraging their use. And, you may not have bladder control along with OAB. But I have had OAB for several years, and still have good control. Again, there's no reason to expect that your experience is predictive of mine. Your suggestions for bed pads are off the mark, because as I have said, I am not incontinent, and do not wet at night.

If you are going to quote me at least have the decency to do it correctly. I did not and never have discouraged you or anyone else from taking meds, I merely said that other meds in the same group would probably be ineffective. I've also been dealing with this problem from birth so I may well have more insight into this than you do. I offered advice, you decided to throw it back. If you don't like an answer simply ignore it or don't ask the question in the first place.

You don't have to medically trained to pay attention. We have literally had thousands of people come here and other sites, over many decades. And nearly every single one of them has said the same thing. Some meds will work partially, but none of them are even close to 100% effective. Nearly 100% of them will have negative side effects though.

Now is that enough of a sampling to say they never work? Of course not. But it is more than enough to establish a clear pattern and dictate a very common expectation. No medical training required.

And we're not looking for an affirmation. We've already gotten that time and time again. What we ARE trying to do is to help people like you to understand meds likely won't do much, and in all our combined experience we have found diapers work the best. Especially so for people like yBobsled who have said pullups aren't working and are looking for something better. Ie. The obvious answer being diapers, not meds.
 
ltaluv said:
In your first post, you expressed frustration that a pull-up might only hold 1-2 voids and might not be easy to change discreetly.

So, if I may be so bold as to ask, what DO you want from this forum? Are you looking for affirmation that you're making the best choice? Are you simply trolling to see how much discord you can stir up? If you will tell us what you want, it will be easier to help you.

I did not express frustration with pull ups. I was listing the pros and cons of them (and briefs).

What do I want? Exactly what I stated in my first post, which is perspectives of people with the same condition on how they use pull ups or diapers. You are one. And you mention the challenge of changing pull ups while wearing work boots and pants. That is a useful bit of information, because I can make it less challenging for me by wearing loafers, rather than laced shoes. Also helpful is is chamberpot's post, in which relates how pull ups work for him and why. This was not a general question asking everyone whether they prefer pull ups or briefs. There are plenty of discussions about that in other posts. This was for non-incontinent OABs. So when I get responses from people who are completely incontinent - especially irrelevant ones about bed pads and overnight diapers - that is what causes frustration.
 
My problem is almost entirely OAB. Pain when my bladder is “full” - which is only approximately 100-300ml in general. Intense urgency that only increases if I think about it or go near a restroom or, horror of horrors, walk quickly to a restroom. If I’m stressed, it also flares up and is more painful. It’s weird though, I can also go a few days or even a week without hardly noticing.

I’m on Mirabegron right now which I think really helps although it doesn’t solve it. If I go off the meds for a week, i notice a huge difference in leakage, etc. I have wondered if the meds have predisposed my bladder to be more sensitive when they don’t have the meds in my system...
 
cm90210 said:
My problem is almost entirely OAB. Pain when my bladder is “full” - which is only approximately 100-300ml in general. Intense urgency that only increases if I think about it or go near a restroom or, horror of horrors, walk quickly to a restroom. If I’m stressed, it also flares up and is more painful. It’s weird though, I can also go a few days or even a week without hardly noticing.

I’m on Mirabegron right now which I think really helps although it doesn’t solve it. If I go off the meds for a week, i notice a huge difference in leakage, etc. I have wondered if the meds have predisposed my bladder to be more sensitive when they don’t have the meds in my system...
I am also on Mirabegron. I started taking 25 mg a day it a few months ago, and increased to 50 mg. It seemed like it helped me get through the morning, but I still seemed to have frequency in the afternoons. I stopped taking it, and my doctor scheduled me for a urodynamics test. Things seemed to get worse. I wanted to take it again, but the he wanted me to wait until after the test, as it could influence the results. The test showed that I have significant spasms when my bladder is holding no more than half capacity. I started taking it again about three weeks ago. In retrospect, I wish I had kept a diary with my volumes before the first time I took it, and just before I stopped. But this time, I am tracking volume.

I get some intense urgency that often subsides if I wait (I still feel some need to pee, but the pain does go away for a time).. I haven't really figured out if anything in particular is effective at doing this, though sometimes exercise seems to allow me to go longer between voids.

300 ml would almost be a dream for me. More typical for is 100 ml +/- 20.

Have you ever tried bladder training exercises? Healthy bladders are capable of holding a lot more than we are using. So I am wondering if there is any hope of training it to use its capacity.
 
[QUOTE="daylight, post: 1607461, member: 46103]"
Some additional information/suggestions that have helped me:

1. drink small quantities on a semi-regular schedule rather than large amounts less frequently.
2. concentrated urine can irritate the bladder and cause more urges and discomfort
3. lose some weight, assuming you are overweight
4. determine if certain foods create more frequency and eliminate them from your diet - acidic foods, caffeine, chocolate, spicy foods, carbonated drinks
5. manage your stress as this can cause increased urges.
6. choose when to hydrate - day vs evening (work vs. home)
7. talk about it in a support network/forum as it helps with the mental math.
8. loose clothing is better than tight fitting - at least around the waist.[/QUOTE]
All worthwhile suggestions, some of which I've tried. Most people who look at me would not describe me as overweight (5' 10" & 165 pounds). I have weighed less. But I've had these issues when I did. So this probably is more effective for someone who is obese.

I haven't been able to identify a food or drink that is an irritant. I don't drink caffeinated or carbonated beverages. Alcohol only on weekends. And foregoing spicy foods, chocolate, etc. never seems to have an effect.

Managing fluid intake is the biggest challenge. Drinking more makes my urine less concentrated. But I go more often. I've been measuring volume, and it doesn't seem to change much when it is less concentrated. When I had my urodynamics test, they pumped fluid (which I assume is not an irritant) into my bladder and had severe contraction with a half full bladder.

I don't feel particularly stressed - except by my bladder issues.

I think finding the ideal pace for fluid intake is my holy grail.
 
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chamberpot said:
[
Maybe you like to wear a diaper. That's fine. I don't. I would prefer to pee normally whenever possible, even if it is frequently. But I would like something in place to handle difficult or awkward situations. I think a pull up works best for most of those scenarios. You say a brief can be "retaped at least once", which suggests that the more it is retaped, the more likely is the tape to fail. If I wear a pull up, I might pee normally 4 or more times before either using it or simply removing it. It doesn't sound like that will work with a brief. I expect that I will occasionally wear briefs. That will be when I expect to be in situations where access to a bathroom is unpredictable for several hours.

A lot of folks mention how much more difficult it is to change a pull up. In my situation, it's not really that hard. I normally wear loafers. So I can slip into the handicap stall in the bathroom, where my feet are not visible, and quickly remove shoes, pants and pull up. Since I usually just need it for 1-2 voids, a pull up with that capacity is a lot smaller than say a full Megamax. I can more easily hide a lightly filled pullup than a full brief.

This is what I do, I stand at work all day, I also have to make many trips to the bathroom to answer urge, I can relive a bit in my pull-up and cut trips down from 5 or 6 a day to 2 or 3. I have fair control and if i release a bit the urge goes away for a while. I know weather I am getting to leaking point and the fact that I don't have to sit down I don't worry about press out , if i have reached near capacity I will remove the pull up on my last trip of the day and put on a spare that keep on hand but I don't have to do that very often.. nighttime I wear a diaper so i am not up and down all night.[/QUOTE]

That really depends on the type of diaper you use. Most good or premium diapers have a decent waist band. This allows you to pull the front of the diaper down enough to use the toilet- without having to remove a tape. In fact, most premium diapers have enough elasticity to completely pull them down, just like a pullup. Which of course makes having to remove a tape a moot point.
 
Bobsled said:
[QUOTE="daylight, post: 1607461, member: 46103]"
Managing fluid intake is the biggest challenge. Drinking more makes my urine less concentrated. But I go more often. I've been measuring volume, and it doesn't seem to change much when it is less concentrated. When I had my urodynamics test, they pumped fluid (which I assume is not an irritant) into my bladder and had severe contraction with a half full bladder.

I don't feel particularly stressed - except by my bladder issues.

I think finding the ideal pace for fluid intake is my holy grail.

IC is hard. Keep working with your Dr and certainly explore timing/training/etc as well. Timing and training are similar but there are a lot of variables to balance - weather, activity level, food/fluid intake, mental state (stress, tired, ...), physical state.

- Stress of dealing with bladder issues is not to be discounted lightly. You (I) are always on red alert and that is hard on the body. Find ways to reduce it. Exercise/Yoga helps me. Protection choices too - what some of the others are alluding to with their suggestions of more pulp or sap as it maybe. I know you are not there so, a point to consider - changing a pull-up is a PITA since it involves disrobing from the waist down. Another strike is being of the inferior gender (male), directional issues can arise.

- Charting ugh. Having charted (log) for three different Uros as well as for myself. I find myself tending to be over-aware of my drinking and going when in log (debug) mode. Consequently, I do better when I don't record every moment. A lot of mental math, i.e. keeping busy -> reduce mental triggers ('do I need to', 'is there anything in my bladder', 'my bladder aches', blah-blah-blah). Also, I vary my fluid intake around times I'm not in peak work mode. I'm still not the best at it (like it appears with you as well) and end up pinging between under and over hydration. Thus, apparently left to cycle forever between a headache and wet. Not really, but it feels like it.

- Also, in the past I tried Tamsulosin for the bladder spasms, it helped. I am not taking anything at the moment as I'm kind of a minimalist when it comes to Rx though I may consider trying it or something else again.
 
My Incontinence is actually caused by spinal and nerve damage and as such I don't have OAB (wet or dry), I have total loss of bladder loss and am not aware when I need to void or indeed am voiding, During the early stages I did try pull-ups, but they wouldn't hold enough or absorb fast enough leading to leaks, rashes and other problems that are more properly diabetic related. I don't want to wear nappies 24/7 and would give my right arm for just 24 hours without wetting myself anything up to 12 times. You could try ISC (Intermittent Self Catheterisation), or an indwelling catheter or a condom catheter all of which are much easier to manage than pull-ups or nappies. As Italuv has already commented you seem to be looking for people to agree with you, rather than be open to other suggestions or ideas. If you are looking for validation then yes, you have a form of incontinence, which may or may not get better or worse. One thing you haven't mentioned, have you had the full run-up of diagnostic tests and if so what did they show?
 
PCBaby said:
One thing you haven't mentioned, have you had the full run-up of diagnostic tests and if so what did they show?
Actually, I have mentioned twice in this thread that I had a urodynamics study. I've also had a cystoscopy. My bladder is generally healthy. I have some calcification of the prostate, but am not retaining urine. But I do have severe bladder contractions when it is half full or less. Overactivity is my problem. Everything else works properly.

Overactive bladder syndrome is not incontinence. Some people with OAB have urge incontinence. I and a lot of others do not. When I first sense an urge, I always have a lot of of time to get to a bathroom. Sometime, I can grit my teeth for a bit, and the painful urge will subside temporarily . I did that this morning for well over an hour, with strong urges coming as often as every 3-5 minutes. I can hold it in for a while withou leaking. But eventually the pressure will get to be too much. Even a person with a healthy bladder will wet if they wait too long.

So my question has always been about how people with OAB Use protection to handle situations where getting to a bathroom may be problematic or highly inconvenient. Most of the time, I would rather deal with the hassle of frequent urination, than the hassle of using and changing a diaper all day. But I know there will be occasions where having some protection in place will give me peace of mind.
 
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Bobsled said:
[QUOTE="daylight, post: 1607461, member: 46103]"
Some additional information/suggestions that have helped me:

1. drink small quantities on a semi-regular schedule rather than large amounts less frequently.
2. concentrated urine can irritate the bladder and cause more urges and discomfort
3. lose some weight, assuming you are overweight
4. determine if certain foods create more frequency and eliminate them from your diet - acidic foods, caffeine, chocolate, spicy foods, carbonated drinks
5. manage your stress as this can cause increased urges.
6. choose when to hydrate - day vs evening (work vs. home)
7. talk about it in a support network/forum as it helps with the mental math.
8. loose clothing is better than tight fitting - at least around the waist.
All worthwhile suggestions, some of which I've tried. Most people who look at me would not describe me as overweight (5' 10" & 165 pounds). I have weighed less. But I've had these issues when I did. So this probably is more effective for someone who is obese.

I haven't been able to identify a food or drink that is an irritant. I don't drink caffeinated or carbonated beverages. Alcohol only on weekends. And foregoing spicy foods, chocolate, etc. never seems to have an effect.

Managing fluid intake is the biggest challenge. Drinking more makes my urine less concentrated. But I go more often. I've been measuring volume, and it doesn't seem to change much when it is less concentrated. When I had my urodynamics test, they pumped fluid (which I assume is not an irritant) into my bladder and had severe contraction with a half full bladder.

I don't feel particularly stressed - except by my bladder issues.

I think finding the ideal pace for fluid intake is my holy grail.[/QUOTE]

Oh, just saw this. You do know the total volume with each void is likely to unchange, right? This is because your bladder will react to it being full (or half, or whatever) at nearly the same level- every time. What you really need to be tracking is total volume PER DAY. Yeah the volume with each void will be similar, but when staying well hydrated you will be going more times per day. Yes, that means you will have more voiding occurrences every day, but you urine will be less concentrated, and will smell less as well.
 
Slomo said:
All worthwhile suggestions, some of which I've tried. ]

Oh, just saw this. You do know the total volume with each void is likely to unchange, right? This is because your bladder will react to it being full (or half, or whatever) at nearly the same level- every time. What you really need to be tracking is total volume PER DAY. Yeah the volume with each void will be similar, but when staying well hydrated you will be going more times per day. Yes, that means you will have more voiding occurrences every day, but you urine will be less concentrated, and will smell less as well.
What I am hoping to accomplish by measuring my output is the effect of the meds. They are supposed to relax the bladder. So if they do work,, my average void volume should increase. Mirabregon is supposed to take 4-8 weeks. I’m not even halfway to 8 weeks yet. So I need to give it time.

I still do need better pacing, because my time between voids ranges from 5 hours to 15 minutes. That doesn’t include overnight, when I can go 6 hours or more. But 5 hours means I probably should have had more fluid.
 
Have you tried PTNS, aka anklestim? It's minimally invasive (just a needle inserted near your ankle during the procedure) and helps some people with OAB.
 
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