Feel like a freak

[tomcat]

Hi all
Currently in mental hell at the moment had Bladder botox (Bladder neck an Urethral Spinter on the 25 March) and had to have Indwelling Catheter due to retention issues on the 27th.OMG the relief from my bladder sensory issues Not having to wake up 4-5time per night to travel to bathroom which occasionally causes falls.Able to drink water without Bladder giving me issues so was restricted to soda based or other drinks.
As well as other bladder issues I have had since 2009 since spinal injury.I really hate myself enjoying this relief (I am to keep this in til the 22 May when my urologist comes back) and I want a solution where he operates on me internally to have the same relief as the catheter (already been in full taped diapers since 2009 and find them comfortable) OMFG I feel like such a freak to the point I emailed my treating Consultant Psychiatrist of 3 years regarding this and requesting a Psychiatric assessment as well as psychologist as they both know I have been suffering.I suffer from under and overactive bladder and retention and can not safely self cath due to bad essential tremors in hands (had previous urological staff give up on me as I refused on medical grounds) I also have Autism, Bipolar and ADHD and since 2009 spinal issues at l3l4l5 s1 which neurosurgeon has written no treatment or surgery was an option.
I was for a permanent solution for health safety (retention) as well as Quality of life solution but I feel so fucking messed up in the head that I am taking valium more regularly (Psychiatrist knows but isn't concerned as he did a phone safety check up on me after the emails I sent him)

 

[Edgewater]

Since you are classified as "Autism, Bipolar and ADHD", you understand that you can be prone to overthinking /over-reacting to whatever you have placed your concentrating upon!

As you know, you are not a Freak, but an individual among tens of thousands that are faced with the reality of being Incontinent! In fact many of us here have been IC for a very long time. Some since birth, others from illnesses or like myself, a car crash or other injuries. We all have to come to an acceptance that we are IC and will likely be for the remainder of our lives.

Many of us, because of want to be out and about have found a 'comfort' in wearing a diaper to simply be out and about. Not saying that it is something we want, but the diaper allows us to live a life being out and about doing things that others non-incontinent folks do everyday!

Having to wear diapers is not the end of the world, nor is it something that makes us Freaks as we are nothing more that normal folks that have specific issue that requires us to wear diapers. Nothing more, nothing less! And if we find a bit of comfort in their allowing us to be out and about, so what!! In my mind, that would be classified as Normal!

The car crash I was involved in and the surgeries that followed, now near 46 years ago result in communications issues (L5-S1) that results in my have little or not feeling regarding my bladder, etc. My loving wife, children and grandchildren do not consider me a Freak, nor do my clients, family nor friends.

Time to begin the process of finding an acceptance of your reality and that you are not a Freak as you are amount tens of thousands!!

Welcome and be welcomed to this Amazing World of ADISC!
Enjoy!

 

[PadPhilosopher]

You are not a freak for wishing to have your bladder retention stop causing you pain. As an autistic person, that will feel extra terrible and overwhelming. I think only 3 days ago another autistic person expressed his hatred for bladder pressure here. To wish to have it just come out freely, as it does with an indwelling catheter, is reasonable, as it nicely resolves the retention and associated pain.

I don't know what you might be able to convince a doctor to do. It is possible to surgically make it impossible for the body to retain urine, but this has other consequences in many cases, and is avoided except in extreme cases. You could ask. Long term catheter use is risky, too, because of the high risk of infection. It is possible to use stents, installed with a cystoscope, to mechanically prop the sphincters open, which is not risk free, but safer than long term catheter use.

You're going to have to have a heart to heart with your doctors about this. Focus on the pain and problems the retention is causing, and the limitations you have for self care, and see what they suggest.

But you are not a freak. Don't call yourself that.

 

[BwBunny]

Hi all
Currently in mental hell at the moment had Bladder botox (Bladder neck an Urethral Spinter on the 25 March) and had to have Indwelling Catheter due to retention issues on the 27th.OMG the relief from my bladder sensory issues Not having to wake up 4-5time per night to travel to bathroom which occasionally causes falls.Able to drink water without Bladder giving me issues so was restricted to soda based or other drinks.
As well as other bladder issues I have had since 2009 since spinal injury.I really hate myself enjoying this relief (I am to keep this in til the 22 May when my urologist comes back) and I want a solution where he operates on me internally to have the same relief as the catheter (already been in full taped diapers since 2009 and find them comfortable) OMFG I feel like such a freak to the point I emailed my treating Consultant Psychiatrist of 3 years regarding this and requesting a Psychiatric assessment as well as psychologist as they both know I have been suffering.I suffer from under and overactive bladder and retention and can not safely self cath due to bad essential tremors in hands (had previous urological staff give up on me as I refused on medical grounds) I also have Autism, Bipolar and ADHD and since 2009 spinal issues at l3l4l5 s1 which neurosurgeon has written no treatment or surgery was an option.
I was for a permanent solution for health safety (retention) as well as Quality of life solution but I feel so fucking messed up in the head that I am taking valium more regularly (Psychiatrist knows but isn't concerned as he did a phone safety check up on me after the emails I sent him)

hello @tomcat,
Not that I can even try to comprehend and compare my petty problems to yours, but I do know the feeling of being a freak.
I've had a bedwetting problem that have haunted me since the dawn of time. DM me if you ever need to talk...

 

[mirrored22]

I had TUIBN surgery last year to try and help with my OAB issues and had to wear an indwelling foley catheter for a few days or so as part of recovery. I hated the catheter as the physical sensation of managing the bag combined with just how sensitive everything was down there, any incorrect movement would be greeted with a sharp jolt that was not cute. It was a fairly unpleasant experience I never want to repeat.

But, that feeling you mention with the relief from bladder sensory issues? I know exactly what you are talking about. I felt the same way. Even bypassing all of the other benefits, like sleeping well, being able to work normally, not having to deal with a million bathroom breaks, not having to strategize your entire day around the bathroom...just the lack of sensation was such a relief. I would have never known about it until I experienced a few days without it.

This experience was very validating. I understood what I was getting treatment for. I understood that people who have typical bladders DONT feel the same way I do. My experiences were unique and atypical. I wasn't just being a huge baby about it, I wasn't handling it the wrong way, I wasn't making a big deal out of nothing, and it wasn't all in my head. The symptoms I have was real, and after getting some relief from them for a bit, it felt like it was okay to acknowledge just how the disruptive and frustrating these symptoms were for me for the first time in my life. I was right to be annoyed. I was right to seek treatment. And it was okay to seek relief, in any way that I can get it.

You are not a freak for having your disability affect you. You are not a freak for feeling relieved by a symptom going away. Its only natural to feel relief when such a huge source of stress for you evaporates. (It is actually a huge source of stress! Its valid!) Lean into that relief and find something fun you can do with all that extra space in your brain that's now freed up from frustrating bladder issues, especially since you have a month and a half left until its gone.

As you know, you are not a Freak, but an individual among tens of thousands that are faced with the reality of being Incontinent! In fact many of us here have been IC for a very long time. Some since birth, others from illnesses or like myself, a car crash or other injuries. We all have to come to an acceptance that we are IC and will likely be for the remainder of our lives.

Some of us are still working on that acceptance part! But its nice to have experienced members here who are on the other side of that mountain to know that theres an other side.

 

[Pino]

My cause is very different from yours, but when the bladder pain was really bad and my bladder cramping a lot i think i may have said "yes" to a doctor offering me pain relief to the cost of continence. Now i am happy i had not the choice, because it got much better the last years, but i think when the pain would raise again i would maybe choose that way still. Constant pain is something that most people can not relate to and constant pain in the bladder has got its own quality.

 

[tomcat]

You are not a freak for wishing to have your bladder retention stop causing you pain. As an autistic person, that will feel extra terrible and overwhelming. I think only 3 days ago another autistic person expressed his hatred for bladder pressure here. To wish to have it just come out freely, as it does with an indwelling catheter, is reasonable, as it nicely resolves the retention and associated pain.

I don't know what you might be able to convince a doctor to do. It is possible to surgically make it impossible for the body to retain urine, but this has other consequences in many cases, and is avoided except in extreme cases. You could ask. Long term catheter use is risky, too, because of the high risk of infection. It is possible to use stents, installed with a cystoscope, to mechanically prop the sphincters open, which is not risk free, but safer than long term catheter use.

You're going to have to have a heart to heart with your doctors about this. Focus on the pain and problems the retention is causing, and the limitations you have for self care, and see what they suggest.

But you are not a freak. Don't call yourself that.

I ended up emailing my long treating Consultant Psychiatrist and Psychologist a lot of this incl asking for a mental evaluation as when I have asked for something just to allow my bladder to flow into diapers another solution is to self-cath or Indwelling catheter (omg such bladder relief from Bladder since the catheter) I have been told by continence and urological professionals to get my head examined.

The best case scenario I can see is to do an operation to have the same effect without a Catheter and keep my prostate (as I am a fall risk as well as having a blood clotting condition) and I caused trauma last week because of this as the IDC moved slightly but lots of blood in bag. Since the catheter, I have been able to drink water sleep the entire night without being woken up 5-6times needing a bathroom (increasing falls).

 

[PadPhilosopher]

I ended up emailing my long treating Consultant Psychiatrist and Psychologist a lot of this incl asking for a mental evaluation as when I have asked for something just to allow my bladder to flow into diapers another solution is to self-cath or Indwelling catheter (omg such bladder relief from Bladder since the catheter) I have been told by continence and urological professionals to get my head examined.

The best case scenario I can see is to do an operation to have the same effect without a Catheter and keep my prostate (as I am a fall risk as well as having a blood clotting condition) and I caused trauma last week because of this as the IDC moved slightly but lots of blood in bag. Since the catheter, I have been able to drink water sleep the entire night without being woken up 5-6times needing a bathroom (increasing falls).

Sadly, there is a mentality in much of the urological community, apparently among the older doctors mostly, that continence should be retained as much as possible at all costs. Because they think that way, people who aren't willing to try drugs and surgery, but would rather diaper up and go on with life, are often treated poorly by this group. There are multiple testimonies to that effect published on ADISC. Someone who is wishing to be intentionally made incontinent is seen as having lost their marbles. They cannot process why anyone in their right mind would wish that. There are a few who are more pragmatic, but finding them can be tricky.

I think that what you're describing makes perfect sense. Your bladder hurts any time it starts to actually fill, and wearing a catheter forever is just not a good idea. I have worn an IDC, and can attest to both the delicious deliverance from bladder pressure it provides, and the hazards that wearing one presents. On top of the issues that can arise if it gets pulled, such as by a fall, infection is a very common problem with them, and although they're often nothing worse than painful, these can be life-threatening.

I suspect it would be possible to disable your sphincters without removing the prostate (or anything else) by severing the nerves that tell them to contract. I've not studied this in detail, and I assure you that most surgeons are NOT going to want to do this. It would not be reversible, and it might have other consequences, too. Nonetheless, I don't think you're crazy to wish for it. I've had bladder pain, briefly from infections, and it's a special kind of miserable. I, too, would choose total urinary incontinence over continual bladder pain. The pain was far more disruptive than having no bladder control .......and I can actually compare them, because, as an experiment, I temporarily disabled my bladder control for some time. It's possible but risky, and I'm not sharing how I did it. It's how I got the infections...... I only mention it to say that I've seen both sides, and I know which I'd choose.

I hope you find a doctor who is willing to think outside their norms, look at your specific situation, and find a solution that truly gives you relief. You're not a freak, and you're not crazy. Hopefully someone in the urology field will see that soon.

 

[PadPhilosopher]

@tomcat I would really press them about stenting your sphincters. That IS reversible, and stenting the internal one is actually not that uncommon. To stent them both would render you unable to retain urine at all, like you are wishing, but because it's reversible, they would likely agree to try it much more easily, and it might be a gateway to something surgical and permanent after you'd had your wish of no bladder retention for awhile, if after being stented for awhile that was still what you wanted.

 

[Pino]

@tomcat I would really press them about stenting your sphincters. That IS reversible, and stenting the internal one is actually not that uncommon. To stent them both would render you unable to retain urine at all, like you are wishing, but because it's reversible, they would likely agree to try it much more easily, and it might be a gateway to something surgical and permanent after you'd had your wish of no bladder retention for awhile, if after being stented for awhile that was still what you wanted.

I wanted to comment something similar, but for Germany that procedure was stopped again, because long time results were problematic i think.

 

[Zeke]

Since you are classified as "Autism, Bipolar and ADHD", you understand that you can be prone to overthinking /over-reacting to whatever you have placed your concentrating upon!

As you know, you are not a Freak, but an individual among tens of thousands that are faced with the reality of being Incontinent! In fact many of us here have been IC for a very long time. Some since birth, others from illnesses or like myself, a car crash or other injuries. We all have to come to an acceptance that we are IC and will likely be for the remainder of our lives.

Many of us, because of want to be out and about have found a 'comfort' in wearing a diaper to simply be out and about. Not saying that it is something we want, but the diaper allows us to live a life being out and about doing things that others non-incontinent folks do everyday!

Having to wear diapers is not the end of the world, nor is it something that makes us Freaks as we are nothing more that normal folks that have specific issue that requires us to wear diapers. Nothing more, nothing less! And if we find a bit of comfort in their allowing us to be out and about, so what!! In my mind, that would be classified as Normal!

The car crash I was involved in and the surgeries that followed, now near 46 years ago result in communications issues (L5-S1) that results in my have little or not feeling regarding my bladder, etc. My loving wife, children and grandchildren do not consider me a Freak, nor do my clients, family nor friends.

Time to begin the process of finding an acceptance of your reality and that you are not a Freak as you are amount tens of thousands!!

Welcome and be welcomed to this Amazing World of ADISC!
Enjoy!

You DO HAVE an advanced degree in diaperology, Edgewater, and I think anyone being given advice by you should consider themselves the fortunate beneficiaries of your years of experience. Good on you my friend.

 

[foxkits]

hello @tomcat,
Not that I can even try to comprehend and compare my petty problems to yours, but I do know the feeling of being a freak.
I've had a bedwetting problem that have haunted me since the dawn of time. DM me if you ever need to talk.

Things your dealing with aren't pretty . What everyone dealing with is important to them . You count as much as everyone here

 

[daylight]

My cause is very different from yours, but when the bladder pain was really bad and my bladder cramping a lot i think i may have said "yes" to a doctor offering me pain relief to the cost of continence. Now i am happy i had not the choice, because it got much better the last years, but i think when the pain would raise again i would maybe choose that way still. Constant pain is something that most people can not relate to and constant pain in the bladder has got its own quality.

Same. My bladder pain was the motivator behind botox.

 

[ShinyMichael]

ADHD/ASD here. Beat myself up for a long time about how much nappies meant to me. Even with the amazing mum I have. I recommend a good counselor, kink aware if you can find one. Just talking really helps. You are definitely not a freak. "Normal" is a social construct if not a myth. You have one life. Be true to yourself as much as possible.