Getting a valid diagnosis: my own experience

[Slomo]

I thought I'd add my own diagnosis here too. Though it's more like a fraught journey to getting one. Sorry, it's a long story.

First off, I'm convinced that "OAB" is urologist code for "we recognize something is going on with your urine retention and/bladder, but we don't know what. So, let's throw pills at it and see if it makes you go away". Never settle for an OAB diagnosis, or more pills, it does nothing for you.

So I started off with a major auto accident that put me into a wheelchair for 3 months and then a long leg cast for 3 more. I found I couldn't make it to the bathroom in time, so my urologist said it was just my limited mobility. Official diagnosis: functional incontinence related to mobility. Nothing to worry about or look into, and that I should manage with diapers for the time being.

About 6 month later my mobility slightly returned, yet I was still having problems making it in time. A new urologist, and I got a new diagnosis of OAB. And began trying a different pill every 3-6 months. I was also subjected to multiple urological diagnosis tests. Of note here: this test has you empty you bladder and measures output rate and volume. Then they put a catheter in you, and slowly fill our bladder. You call out when you feel it and again when full. Then they have you pee past the catheter as much as possible to measure pressure, rate and volume. Me though, i could never pee past the catheter so that always invalidated the test.

All this occured during at least another 5-7 years. I moved, twice, so add another new urologist each time, but no actual changes. And had an insurance change too, so more of the same yet again.

Eventually I was fed up with the non-support I was getting and switched urologists- yet again. This doctor actually talked to me to come up with a new diagnosis, but also made sure to include another diagnosis test- which i again failed for results. New diagnosis, Severe Urge incontinence. Followed up by even more pills every 3-6 months. Uuugh.

Another point here, with all the pills. I found if I refused any more pills then every single urologist would get stuck on that one pill. Likely thinking it "would work" if only I gave it a real try. They'd be so hung up on that, they couldn't look past it and move on to something else. So, after many refusals I found it was faster and easier to just take them and prove they don't work, or worse ad bad side effects.

Eventually, after 18 plus years I landed at the Mayo Clinic in Florida. Finally I had found a urologist who would listen to me once again. He deduced the reason why I failed the test was two parts. First the catheter used in the tests was too big for me. And second I was experiencing too much pain to just bear through it. So, one strong pain pill before hand, and a child's size 8fr catheter and I barely got through it. My internal bladder pressure was literally off their normal chart space. In fact, it registered 3-4x higher. 

New diagnosis, Sever Urge Incontince coupled with a Neurogenic Dyssynergia Sphincter (basically, my muscle wiring was crossed and instead of relaxing to pee my muscles was clamping down instead). Gee, go figure. But FINALLY, a proper diagnosis.

From there we then determing my sphincter had to be bypassed, and my bladder couldn't be allowed to fill. That was the only way to alleviate both diagnosis, and that no pill would have ever helped me. He was concerned this would make me incontinent though, and hesitated. Up until I pointed out I had been incontinent, and needed diapers, for the previous 18 years. The surgery would though alleviate my inability pee, completely remove my painful urges, and greatly improve my quality of life.  I was then scheduled for what would be the first of 15 surgeries to get me there.

 

In the end it took me out 20 years to get the right diagnosis, AND to get me properly treated. So if you've read this far, my advice is DO NOT SETTLE, not for an OAB diagnosis, not for more pills, and definitely not another quack urologist who isn't even willing to spend the time and listen to you.

[rayhill]

Wow, that's quite a journey! I'm glad you finally got a correct diagnosis. And also WOW - 15 surgeries. That's a lot! How has life been since getting the proper treatment?

[John Davis]

On 4/4/2023 at 11:39 AM, Slomo said:

First off, I'm convinced that "OAB" is urologist code for "we recognize something is going on with your urine retention and/bladder, but we don't know what. So, let's throw pills at it and see if it makes you go away".

Sadly, this is so very true!

--John

[Slomo]

On 4/7/2023 at 2:41 PM, rayhill said:

Wow, that's quite a journey! I'm glad you finally got a correct diagnosis. And also WOW - 15 surgeries. That's a lot! How has life been since getting the proper treatment?

15 surgeries was just for my urinary problem. I've had over 2 dozen when including my legs, knees, and nasal problems. But yeah, wow is right. But I can at least say I'm stable, and can still walk short distances.

[Brian]

@Slomo

I consider myself lucky, because I've dealt with cerebral palsy all of my life!  When I was 46, I started having problems with incontinence, and then I ended up finding out that some of the things that were happening were happening way too fast And I was unable to take care of it quick enough. when I started having these problems along with diverticulitis I BS and accidents, I decided to go to the doctor and have it taken care of or at least get help for it three years later one of the things that I made sure to say was that I didn't think it was necessary for me to go to urologist, but the state was trying to tell me that that was one way to get help. I told the state that I already had cerebral palsy, and that incontinence is one of the conditions that could come from it, and apparently whatever my doctor was able to prove by writing up the authorization, as well as the medical record sent, I was able to get the diapers I needed, without having to go to a urologist, And all I did was tell Medicaid exactly what was wrong, and they had me do homework to find the five diapers that I liked, in order from one to five. The first one I chose as the top choice was the Mega Max in the approved at, And based on me having accidents for almost two months using the cheap stuff, they were able to quickly determine that I was right.

When you have incontinence, it can be quite hard to be able to deal with. sometimes you don't understand what's going on or why you're dealing with it, but all you know is one day you're fine, and everything is awesome, and the next thing you know you're having accidents all over the place, and you need to figure out how to deal with it. you may not be able to act fast enough to be able to deal with it, so you end up with embarrassing situations. because of all of my embarrassing situations, I finally realized that I can't help it, and it was part of my disability, and I chalked it up to the fact that things are changing. also, when you eat certain things, stuff happens so quickly you can't respond fast enough.

One of the things that I found ,  was the fact that I asked the doctor to place on my medical records diagnosis that confirmed incontinence both ways. this way no one would be able to question my need for diapers, or request to use them if I were in a medical situation where one would be required. Having a diagnosis that gives me the opening to use diapers to deal with incontinence really help me to deal with the situation in an appropriate way. the only way I could think of to deal with it would be to deal with diapers, because it helps me in more ways than one, And I've already explained that it helps me with the feelings and all of the urges and things, but having the right the right diagnosis will make sure that people understand that I am incontinent, even if a lot of the times I could still make it to the bathroom, it's just inconvenient to be getting up every few minutes to go to the bathroom, or trying to fight the obvious, which is not a good idea.

Because of my disability status, it was quite easy to understand my reasoning for wanting to do it. I want to make sure that I have the right incontinence supplies for my needs before I turn 60 or 70 years old, when it might be harder for me to be able to get what I need. it also helps me deal with the feelings and the urges, and puts it in a way that I can deal with it, and it helps me to relax and keep my cool as well as to allow for me to lower the stress level. when you are in continent, sometimes the stress can be extremely high, but if you're able to deal with the incontinence and the use of a diaper all the time, then it's no big deal to those that are veterans of the condition. I can understand why some people would be annoyed if they don't have the right diagnosis, because the right diagnosis would help them to be able to get what they need. I was very lucky that my doctor was very understand knew of my disability, because I've had him as a doctor for 25 years, and he knows that I wouldn't ask for something that I didn't need. when I started having accidents and I kept on having to get up in the middle of the night, or have messy beds or whatever it is that is causing the issue, I knew that there was a problem, this was not something that was fun. Once you can deal with your incontinence and the need for diapers, then you can add the fun to it, but when you have problems and you think there's a medical reasoning for it, and your checked, everything should be OK. I didn't want to go to urologist because I already have a condition that would be a subcondition, being that I'm incontinent, and my proximate cause in my mind was the CP, because CP deals with all of the muscles and your skeletal system, and sometimes people have problems with their bladders or their bowels because of electric impulses that cause their muscles to expand and contract without they're able to be controlled. I'm lucky that I have good supportive people that love me and understand my reasoning, and I'm glad I made the decision, because I'm feeling better about myself because I made that decision. I keep saying that I'd wear diapers for the rest of my life, because they help me in ways that are sometimes indescribable, but I'm sure everyone here knows me, and understands my reasoning

it is also important to get the proper diagnosis and to put it on your medical records. This is because there may be a time when you have a situation, and when you ask for a diaper for example, if it's not on your medical records they might tell you that it's not a good idea. I remember when I had my appendix out, and I was having these disasters accidents because of the medicine I was on, and I finally got sick of it cause I was constantly making messes in my bed, so I finally gave up and asked for a diaper, and they told me that that would not be a good idea because that would that would probably cause me to have an issue, and it's easier for them to just clean up the mess. I told them that I wanted to be comfortable and not have to worry about making a mess, but they said that wasn't for me to worry about That was for them to worry about. having the proper diagnosis can be something that will take time, but once you do have the proper diagnosis and the proper tools, you're able to deal with it Because as I said once you're able to accept that you wear diapers or that you've decided to do a treatment that makes sense, then you're able to decide how to move forward, and if you chose to do things with diapers, then you might be able to add the fun afterwards, because if you're wearing diapers for example because you need to, people may decide that they need to use ones that are colorful, because they don't wanna be wearing clinical white clinical white, because that's boring and you might as well wear diapers that are markers of your personality, and who knows you might end up being able to get a pretty girl to give you a wink or something someday you never know he he he he he he he he he he he😊😊

also, having the doctor check you and being able to have the right diagnosis can help you when you're dealing with the insurance company. if you have the right documentation and you have the diagnosis correct, no one is going to tell you that you can't get diapers because you don't have the proper diagnosis. I don't know of any company that would deny you coverage because of having the proper diagnosis on your medical records. they might try to fight you, but there's nothing that you can do to fight something something a doctor says if there is proof of your condition. I'm glad that I have the proper diagnosis now, and I don't have to worry about it anymore nor do I have to fight with the insurance company because I have proven my need for diapers, and I've proven the reason why I want the diapers I have, because I am incontinent both ways and severely incontinent, and I have friends that also suffer the same problem, and they know that the cheap diapers don't work for them, so they have to use ones that work for them And as I keep saying Diapers that work for somebody else may not work for you, it depends on your usage and your diagnosis.

As I said You should always try to make sure that you have the proper diagnosis, and don't let anyone tell you that you don't suffer from what you think you suffer from! if you have incontinence, there's a reason for having incontinence, whether it be because of medical reasons, psychological reasons, or whatever, there are reasons that things happen, and as long as you have the proper diagnosis and your doctor's support as well as those that know your situation, incontinence is easier to deal with, because you accept it, and you don't have to worry that somebody is not accepting of that particular diagnosis. I ask my doctor because of my doctor will retire in May if getting a new doctor is going to make a difference in how things run, such as will the doctor think that I'm not incontinent or want to send me to these specialists even though he's a newer doctor, and I was told no way, because everyone knows that I'm incontinent and my situation, and my situation makes sense to the doctor as well, because I don't want to deal with all of the craziness if they end up thinking that I'm not incontinent, because I am!

I always remember my friend who told me that the doctor works for you, and that is the most important thing. I know from experience that I would not ask the doctor for something that I didn't think I need it, and that is what our relationship is based on: trust and my ability to make decisions, and if I question those decisions, that I ask him for advice, because he knows the medical end of it, knows how medicines interact with other things, and be able to tell me right off the bat if he thinks it's a good idea. one of the things that we agree on is that he would not prescribe a narcotic without a reason, and he would warn me about particular medicines and how they're used If for example they cause side effects that may not be good ones, but it's a necessary evil.

if you have the right diagnosis, the right medical team, the right support, and the right equipment, you can manage incontinence quite well. It all depends on your ability to manage it, and how you do it, and that makes a big difference. no one should be afraid of incontinence, and in my case I have embraced it, because it is a part of my life and there's nothing I can do about it, so why not go all the way down like in a submarine, all the way to the bottom and then take all the help you can get and use it. there's nothing to be ashamed of and there's no reason to feel any less of an individual because of your incontinence, it's just something that happens, and I know it can be hard for some people that may deal with it, or maybe diagnosed for the first time, but if you have the right support team and the right equipment, and the right mindset, it is a lot easier to deal with. daily diapers help me to get that mindset into my mind, so I don't have to worry about it, because my diapers deal with two situations, and I'm glad that I made a decision I made.

I'm also glad that our automated records record system can show anything that a medical professional needs to see in situations where my doctor is not right they are serving me. For example if I'm in a hospital and and a hospitalist is treating me He, he can look directly at my medical records and find out exactly what's going on, know that I have incontinence And then no one would question it, and they would probably offer me what they need to offer me. because of my medical conditions, I don't have to worry that somebody isn't gonna know what's going on, and they will know for example what I'm allergic to and what not, so they won't give me medicines that won't work. That's why I asked the doctor to make sure that the diagnosis of incontinence were on my records, because I don't want to have any one questioning it, I just want them to know it's there.

In my mind, incontinence is like a bump in the road, and how you go over that bump is up to you, but the way you deal with it will determine how you respond to it and try to help others. in my mind incontinence is nothing big, but you are to make sure that if you have a problem, that your doctor checks you out to make sure that there is nothing that is causing it, that can be corrected. people think that diapers are bad, but they're not, But when but when you are incontinent, you don't have a choice, and that is the most important piece. For some people they deal with incontinence by adding other pieces of the lifestyle, and they also deal with the incontinence by adding that piece of the lifestyle, running with it. this ends up putting them at ease, because they know that they feel better about it.

As I said take heart inconvenience isn't that bad, you just have to know what you wanna do with it, what your diagnosed with, what you want to do to solve it, and then get the help that you need to make it happen. don't be afraid to ask for them to place things like this on your medical records, because it can help you when you need it. this way no one can question the veracity of my request, and Medicaid won't hopefully back out, thinking that I don't suffer from it anymore. it's on my medical records, so they can't deny me. or they can try it 😂😂

Now that I have accepted incontinence, it's a lot easier to deal with, 'cause I don't have to worry about something that just comes out of the blue: because of people that are here on daily diapers and on incont.org there's a lot of people that I have met that deal with these types of these types of situations, and I'm darn glad that they're here to help others period Now that I understand what's going on, it's easier to help those in need, whether it be because they need experience, or they just need a shoulder shoulder to cry on or a person to confide in. some is the incontinence journey is harder for others to deal with than they realize, but it's not as bad as as people say. However, when people ask me about incontinence, and what it feels like, and what you have to do, always tell them that having incontinence means you wear diapers all the time because you don't have a choice, whereas you were a DL, that would be a little bit different, that's a way to deal with incontinence, just like being an AB would be, But the deal is that people who ask me about incontinence and wanting to be that way, I always tell them that what you're asking for is to wear diapers all the time, and when you are incontinent you may not have the choice of when to wear or white to wear, because you wear all the time, regardless of whether it's convenient, regardless of its summer winter fall or whatever, you wear all the time, without fail without stop! it's not all front end games and it's not all roses, as my friend would tell me, but people that ask need to be told the gods on his truth, and that is the incontinence is not all It's cracked up to be, So you shouldn't be wishing on yourself unless you understand what exactly will happen. you are basically saying you want to have no control, or limited control, and that's what incontinence means, you don't have the ability to control.

I'm glad that most people understand what people go through. here, people know what incontinence means and what it means in their lives, and they know that it is not often in games, and one of the things that I understand very well is that my decision was not made lightly, and I had to make a couple of decisions to tell a couple of my close family members why I made a decision I did. I love my life, and I want to be able to function to the fullest extent possible not worrying about when I go potty, or why I feel the way I do, or when I have to use the bathroom, and I can't get there fast enough. there's also safety concerns involved in it, so my decision makes sense. sometimes you have to weigh the positives versus the negatives and determine there are more positives in making the decision than there are negatives. once you realize that, it's a lot easier to deal with. this is what I always try to tell people is that the decision to order diapers is something that is made based on your need, and what you think is appropriate, and incontinence is nothing to fool with, but once you are fully checked out medically, to make sure there's nothing else that is causing incontinence, you would feel more comfortable probably.

One of the things is that you should not be afraid of it, just make sure that you have the proper diagnosis, and you understand what your diagnosis is and why you you have that diagnosis. For years I've dealt with cerebral palsy and understand what it is that it entails, even though there are many different types of cerebral palsy, many different levels of severity, and there are many people out there that are specialists in the field especially PT's OT's speech and language pathologists and other people along with audiologists and a whole bunch of different specialists. When you have a special disability, you may have to deal with many different people doctors and support personnel. same thing with incontinence, but as I said incontinence is the least of my disabilities, which means I don't worry about it, I embrace it because it makes me feel better. Changing diapers is a lot easier than having wet beds!

Brian