Story The struggles of having a protesting bladder

[CuddleHug]

I have recently developed bladder problems. The leading theory right now is that it was caused by the latest new medication I tried, Abilify. There's really no other explanation available. Doctors are scratching their heads because it's so rare in young patients. They have referred me to a urologist in 7-10 days, which is weird to me because isn't that who I should have seen to begin with?!

Anyway, more of my story is in this thread. Basically I got a catheter on Thursday, which I were to keep until yesterday, Monday. Then today, Tuesday, I had to go back and get a catheter again because my bladder would not empty at all.

The thing is, I am already on my limit mentally. I can't afford another stressful thing in my life and now I got it anyway. Recovery is out of the question for me right now, it's pure survive-the-hour mode for me. Yet I don't want to give up recovery, even if I have made no progress in months now.

So I was thinking about a voluntary psych ward stay. Maybe that could help? Well, yes, but what about the fucking catheter? It would suck more than it normally sucks to be hospitalised with a bag of pee connected to me at all times. I'd also not be able to control any outside appointments, like the followup with the urologist. Can I? Even if I can, it's going to be a chore and I don't think I'm up for it.

I'm not afraid I will do something dangerous impulsively, but I can feel how close I've become to start cooking up some actual plans to CTB. I don't want to. I don't fucking want to kill myself because I can't pee. It's not even that big of a deal, it's just the last straw on top of so many other things. I'm really teetering on the edge right now and I don't like it.

Seriously, fuck this shit of a life. I hate myself for being such a broken human being. For many things, actually. I'm struggling to see the point in trying. I don't know what to do anymore...

 

[AvaAdore]

Try to hold on like you have been, hour by hour. I can see you have a lot of strength to keep going. I would check and see if you can see the urologist sooner than what they have told you. Go to the emergency room if you get too close to wanting to end it.

 

[CuddleHug]

I keep going back and forth between wanting to CTB and being completely apathetic. I met my social worker today for the first time in a month after her summer holiday and we had a great talk like always. However, she brought up the question about going back to work and what kind of plan there was for it. I understand why she asked, and I understand that going back to work even if just an hour a week would be beneficial for my well-being... if it weren't for the fact that I can barely function right now.

How am I supposed to think about work when I can't even feed myself properly? What about hygiene? Daily life things like laundry, grocery shopping and cleaning? I do none of those things and haven't been able to for months. I only leave my apartment if I absolutely have to, for appointments and such that would mess up my life more if I missed them.

It's not like I'm making it up because I am lazy and don't want to work. I love my job and want to go back as soon as I'm able to. Life as I live it now is a nightmare, no one should have to live like this. No one would ever want to. I'm not here by choice. If it were as simple as just taking up my work laptop and start working to improve my mental health, I would do that. I have tried checking the work email and it stressed me out for days even though I only read the subject lines.

I feel like I'm not understanding something vital, because people keep suggesting and talking about work. I can't wrap my head around it, but obviously there has to be something I'm missing or it wouldn't be brought up all the time. They probably think I'm more capable than I know I am.

It's just because I'm so good at putting on a mask and hiding my emotions. I can't switch that off and show the "real" me, because I never learnt how to. It's a blessing and a curse. People who care about me never need to see how miserable I truly am, but health care professionals look at me and think I'm mostly fine when I'm definitely not.

I'm posting this in my previous thread because I don't expect anyone to read it. Most of the time I just want to write it out and then forget about it.

What's the point? Well, what's the point of anything I do? Nothing. So posting a worthless post means nothing less than whatever else I could be doing.

 

[Deleted member 1465]

It's fucking horrible when something you need to take for granted to function stops working properly.
I have polyuria. Unexplained as yet. This time last year I was up all night peeing every half hour. Negligible amounts of sleep for six months. If I did actually sleep, my bladder filled and I'd wake up on the verge of urinary retention. Now that is no laughing matter, it's major trauma and a trip to hospital. I'm guessing that's what you need to avoid.
Maybe the medication is causing retention. If so, then I sincerely sympathise. The urologist will want to check for structural defects such as bladder stones, but make sure they know it it may be a side effect of the medication and you'll need to discontinue it.
When you do pee, it's worth noting the colour, concentration and transparency too.
I'm currently trialling 3 supplements to try and aid with bladder emptying:
Nettle root extract
Saw Palmetto
Pygeum Africanum
I'm doing them one by one to see if they have any effect.
I hope the urologist can help you.

I keep going back and forth between wanting to CTB and being completely apathetic. I met my social worker today for the first time in a month after her summer holiday and we had a great talk like always. However, she brought up the question about going back to work and what kind of plan there was for it. I understand why she asked, and I understand that going back to work even if just an hour a week would be beneficial for my well-being... if it weren't for the fact that I can barely function right now.

How am I supposed to think about work when I can't even feed myself properly? What about hygiene? Daily life things like laundry, grocery shopping and cleaning? I do none of those things and haven't been able to for months. I only leave my apartment if I absolutely have to, for appointments and such that would mess up my life more if I missed them.

It's not like I'm making it up because I am lazy and don't want to work. I love my job and want to go back as soon as I'm able to. Life as I live it now is a nightmare, no one should have to live like this. No one would ever want to. I'm not here by choice. If it were as simple as just taking up my work laptop and start working to improve my mental health, I would do that. I have tried checking the work email and it stressed me out for days even though I only read the subject lines.

I feel like I'm not understanding something vital, because people keep suggesting and talking about work. I can't wrap my head around it, but obviously there has to be something I'm missing or it wouldn't be brought up all the time. They probably think I'm more capable than I know I am.

It's just because I'm so good at putting on a mask and hiding my emotions. I can't switch that off and show the "real" me, because I never learnt how to. It's a blessing and a curse. People who care about me never need to see how miserable I truly am, but health care professionals look at me and think I'm mostly fine when I'm definitely not.

I'm posting this in my previous thread because I don't expect anyone to read it. Most of the time I just want to write it out and then forget about it.

What's the point? Well, what's the point of anything I do? Nothing. So posting a worthless post means nothing less than whatever else I could be doing.

Your posts aren't worthless, I read them.

 

[CuddleHug]

Now that is no laughing matter, it's major trauma and a trip to hospital. I'm guessing that's what you need to avoid.

This is exactly what happened, twice now. To make things even more confusing, I ended up at the plastic surgery ward because I had surgery 9 months ago where I ended up with a catheter after that due to urinar retention. It's obviously nothing related to the surgery itself, especially considering I have been fine since then, but I digress. The point is that I should have met a urologist to begin with, not my surgeon who was just as confused as me as to why I was sent to him.

So not only did I have something traumatic happen, I did not get taken care of properly either. One nurse actually told me when I called that I "should keep drinking like normal", when it later turned out I had 0.75l in my bladder already. Luckily I got told (by someone else) to come in before something really bad happened.

Thank you for sharing your related problems, it makes me feel slightly less alone about it. I'm used to peeing a lot due to lithium, but I have luckily never needed to get up several times in a night to relieve myself. That must have been horrible

 

[Deleted member 1465]

It's still not great, but I've trained my body to compensate. I dread any form of sedation because I need to be able to wake up when my body needs me to.
You have to be really firm with the medics without seeming arrogant because they don't like being told what to do, but they DO make mistakes. Easier said than done when you are scared and in pain.
I've lived with depression and OCD all my life but it only got unbearable when my health took a dive and no one would listen to me. I had to accept that I have to be my own advocate and figure out how to play them at their own game, whilst making them feel like it's all their own idea. Still working on that one!
Please be sure to update us on how it goes at the urologist.

 

[esse_est_percipi]

I keep going back and forth between wanting to CTB and being completely apathetic. I met my social worker today for the first time in a month after her summer holiday and we had a great talk like always. However, she brought up the question about going back to work and what kind of plan there was for it. I understand why she asked, and I understand that going back to work even if just an hour a week would be beneficial for my well-being... if it weren't for the fact that I can barely function right now.

How am I supposed to think about work when I can't even feed myself properly? What about hygiene? Daily life things like laundry, grocery shopping and cleaning? I do none of those things and haven't been able to for months. I only leave my apartment if I absolutely have to, for appointments and such that would mess up my life more if I missed them.

It's not like I'm making it up because I am lazy and don't want to work. I love my job and want to go back as soon as I'm able to. Life as I live it now is a nightmare, no one should have to live like this. No one would ever want to. I'm not here by choice. If it were as simple as just taking up my work laptop and start working to improve my mental health, I would do that. I have tried checking the work email and it stressed me out for days even though I only read the subject lines.

I feel like I'm not understanding something vital, because people keep suggesting and talking about work. I can't wrap my head around it, but obviously there has to be something I'm missing or it wouldn't be brought up all the time. They probably think I'm more capable than I know I am.

It's just because I'm so good at putting on a mask and hiding my emotions. I can't switch that off and show the "real" me, because I never learnt how to. It's a blessing and a curse. People who care about me never need to see how miserable I truly am, but health care professionals look at me and think I'm mostly fine when I'm definitely not.

I'm posting this in my previous thread because I don't expect anyone to read it. Most of the time I just want to write it out and then forget about it.

What's the point? Well, what's the point of anything I do? Nothing. So posting a worthless post means nothing less than whatever else I could be doing.

It's not a worthless post. I read it and I care, even though I dont know you.

 

[CuddleHug]

Okay, now I don't even know what to think. I can't pee through the catheter anymore. It's supposed to flow out and into a bag all on its own, but it's not doing that anymore. My bladder is about to burst, again, and there's a fucking tube straight into it to prevent just that. I'm so tired of this shit. Isn't my life already miserable enough? On my way to the ER/A&E now.

 

[Deleted member 1465]

On my way to the ER/A&E now.

Good move. And good luck.

 

[CuddleHug]

By the time I got there, it was flowing again. I double-checked everything at home, but of course whatever blockage there was only disappeared as soon as I left the apartment. Pretty humiliating to go there, claim it was blocked somehow and then turn out to be nothing. As for how I could have consumed so much liquid only to produce 1/4 of the volume in urine, no one knew.

I'm relieved it wasn't anything serious, but hate the fact that I had tot the ER for nothing

 

[Deleted member 1465]

That is, literally, a relief!
Last year I could barely pee at all during the day, but spent all night going every 20 minutes! I've never encountered any illness for which polyuria presents like that, one extreme to the other. I ended up at hospital because I assumed if I had been drinking fluids all day and couldn't go, I was in danger of retention. They scanned me and my bladder was empty. WTF? They thought I was making it up. As soon as I left, the waterworks turned on again.

 

[CuddleHug]

I was supposed to get rid of the catheter last week, but it didn't happen. Apparently the referral to the urologist hadn't gone through properly and they had to manually request it. Then when they had it, I was told a doctor needed to look at it and set an appointment for me. I am still waiting for any kind of response.

Luckily (if you can call it that), I am apathetic enough to not be particularly bothered. It sucks, but I've accepted that I can't do anything about it. I just have to wait. I hate uncertain waiting, it's much easier with a set date and time to wait for.

 

[CuddleHug]

I AM FREE!!!

I am so glad I got sent to the urologist this time, they really know what they are doing. Didn't even have to meet a doctor. I just walked in, was asked to pull down my pants so they could remove the catheter and then... Instead of having to sit there for over an hour, waiting for the bladder to fill up so we could see that I could empty it fully on my own, they taught me to self-catheterise and sent me home straight away.

It's called intermittent self-catheterisation (ISC) and I did not know about it until today. Basically what I'm supposed to do is pee like normal, then insert a small catheter by myself to empty the bladder completely. It's really easy, doesn't hurt and makes me feel safe. If I can't pee at all on my own, that's totally fine and I just continue to self-catheterise. If I can empty the bladder fully a couple days in a row, I don't need the ISC anymore and can stop. No doctors involved (they will follow up in a week, though).

Obviously this is still not a fun situation, but I'm happy with it because it feels like a proper treatment and I don't need to go to the ER/A&E if things go south. I also don't need to sit in a hospital waiting room, drinking a ton of water and stressing out about the fact that I need to pee successfully before they let me go home. Now I can relax at home and just go when I feel like going.

I wish I had ended up at the urologist to begin with. It would have saved me lots of worry and (emotional) pain. But it is what it is, I'm finally getting this sorted out. I feel so relieved now (pun intended).

 

[Deleted member 1465]

I AM FREE!!!

I am so glad I got sent to the urologist this time, they really know what they are doing. Didn't even have to meet a doctor. I just walked in, was asked to pull down my pants so they could remove the catheter and then... Instead of having to sit there for over an hour, waiting for the bladder to fill up so we could see that I could empty it fully on my own, they taught me to self-catheterise and sent me home straight away.

It's called intermittent self-catheterisation (ISC) and I did not know about it until today. Basically what I'm supposed to do is pee like normal, then insert a small catheter by myself to empty the bladder completely. It's really easy, doesn't hurt and makes me feel safe. If I can't pee at all on my own, that's totally fine and I just continue to self-catheterise. If I can empty the bladder fully a couple days in a row, I don't need the ISC anymore and can stop. No doctors involved (they will follow up in a week, though).

Obviously this is still not a fun situation, but I'm happy with it because it feels like a proper treatment and I don't need to go to the ER/A&E if things go south. I also don't need to sit in a hospital waiting room, drinking a ton of water and stressing out about the fact that I need to pee successfully before they let me go home. Now I can relax at home and just go when I feel like going.

I wish I had ended up at the urologist to begin with. It would have saved me lots of worry and (emotional) pain. But it is what it is, I'm finally getting this sorted out. I feel so relieved now (pun intended).

That's good news for you. I personally wouldn't be comfortable with catheterisation, self or otherwise, but I'm a man so maybe it's a little different for me.
NB. I tried nettle root extract to try and facilitate bladder emptying. It just made me pee more, so I stopped. Next to try is Saw Palmetto and after that Pygeum Africanum. I don't know how you or your urologist feel about supplementation. Never going to be a cure all and the evidence is sketchy at best, but could be worth discusssing.

 

[CuddleHug]

I personally wouldn't be comfortable with catheterisation, self or otherwise, but I'm a man so maybe it's a little different for me.

Yeah, I have it way easier as a woman in that regard. The single-use catheters I got are even designed especially for women and super easy to use. Although, before this whole ordeal, I would have never felt comfortable even with the thought of inserting one myself several times a day. Now I'm just happy to be rid of the permanent one.

The good news on top of the good news is that my first visit to the toilet after I got home was a complete success! Emptied the bladder fully and easily, inserted the thing and almost nothing came out, which means the bladder was very empty. If this keeps up, I'll only have to catheterise until Saturday and then never again (hopefully).

Peeing is one of those things you completely take for granted and never even think about until it stops working. Can you imagine the relief I felt when I successfully peed on my own today? It was amazing!

 

[Deleted member 1465]

Fingers crossed then. Yes, there are certain things in life you should be able to take for granted. When you can't, that can be seriously stressful, especially if you are on your own. People who haven't suffered this can often find it hard to understand.

 

[CuddleHug]

Things have turned around for the worse again and it's frustrating as hell. The first 24 hours, everything worked as it should. I really thought that would be it and I could stop using the catheters quickly. Then I got complete blockage again... Fuck. It was on Friday just before I went to bed, so I was extremely grateful I could empty the bladder myself and not have to go to the ER/A&E in the middle of the night. Still, it felt like such a defeat I barely couldn't sleep that night.

Next morning? Niagara falls. What the hell?! No issues at all. Okay, maybe it was a one-time thing, nothing to worry about. I was wrong about that, of course. Since Saturday, I've only been able to empty the bladder fully without help maybe two times. The rest have been either trying to force it out (not healthy and doesn't always work), partially emptying or not even a drop.

Basically, my bladder is unreliable as fuck and I don't know why. I'm starting to wonder if Abilify had nothing to do with it, because it definitely should not have any effect anymore. I stopped taking it 3 weeks ago and had only taken it for 4 weeks prior to stopping. The problem is, there's literally nothing else I can think of that might be the cause.

Anyway, the nurse I talked to said that it could take a week or so before I could stop catheterising, but I'm not sure if it's normal to have it go on and off like this. You'd think it would be a more gradual, consistent change with partial emptying until it fully empties, not complete stop sometimes and full or partial flow other times.

Ugh, I don't even know why I'm talking about this. I will call the urology nurse tomorrow and see if I can get some reassurance or if they want me to come back in for further examination.

Meanwhile, I'm on the verge of voluntarily admitting myself to psych hospital again. Every fibre of my being is fighting against it, but it's pretty much the only thing I can think about for some reason. Usually that means I need it, whether I want it or not. Honestly, I was kind of waiting for the bladder issues to get resolved first, but I don't think it'll be over anytime soon.

I hate my life. Stupid fucking life. I have no reason not to like it, but I still wish I could end it.

 

[Deleted member 1465]

Forgive me, I can't remember, but have you had a cystoscopy to check for bladder stones?

 

[CuddleHug]

Forgive me, I can't remember, but have you had a cystoscopy to check for bladder stones?

I have not, but it's something I've been wondering about too. I just assumed it wasn't that because no one has mentioned it yet, or rather, the only mention I heard early on was that it's unlikely.

I've been doing some more reading on the subject today and it seems likely that they'll want to do a cystoscopy next. At least with all the catheterising I've done, the thought of it doesn't scare me anymore. Silver lining, huh?

 

[CuddleHug]

Okay, talking to them has reassured me a bit. They said it's most likely going to take another week for things to go back to normal. I had 50% more in my bladder than is the normal limit, so it was very stretched out and will take more time to heal. Guess I'll just have to wait.

 

[Pharmaruined]

So last night I couldn't pee for the life of me.. the muscle just wouldn't relax.

Anyway, thru the years of being totally a mess with my endocrine system I've learned that EVERY problem that goes wrong there's an infection behind it . That's how we die btw.. the bugs eat at you thru the years and as immunity falls with age they eventually take us down..everybody , even healthy people have some bad bugs. period..

So I broke out some antibiotics Ive had stashed over the years, and just like magic I started peeing again, no issues.. the bugs can affect the sympathetic nervous system and paralyze the muscle.

Anyway, just a thought.. it doesn't hurt to try antibiotics for a week or so.. amoxicillin. Check with your doc.. if he doesn't go for it.. u can buy online for cheap. Pm me if u need a link.. and who knows on the abilify.?. i'm still screwed from the propecia 10 years ago.. but antibiotics are a hell of a lot safer.. just make sure u take some probiotics and maybe prebiotics to replenish the good bugs.

Good luck!

 

[CuddleHug]

it doesn't hurt to try antibiotics for a week or so

I did try that for a week when the issue first appeared, but the urine sample they took to the lab showed no infection, so it had no effect. Luckily I got no side effects, which is rare for me with antibiotics. Usually my stomach gets completely destroyed.

Anyway, it all seems to be working again! Day two of not needing to catheterise anymore now, although I've done it anyway 1-2 times each day just in case. It all feels normal, too. No struggle to get going, steady stream until it stops and then the feeling of having emptied the bladder fully. Last time I had that feeling was over a month ago.

The best thing about it all is that I still have the single-use catheters ready as a backup if I ever get the same issue again. Not that I should ever experience this again unless I'm extremely unlucky, but it's still a good comfort to know I can handle it on my own.

As for the reasoning why Abilify/Aripiprazole was the cause, it's because antipsychotics affect the nervous system and that can in turn affect bladder control. It's not unheard of to happen, although it's supposedly very rare. I don't think anyone who reads this needs to worry even if you take or are thinking of taking Abilify, or any other antipsychotic medicine.

However, if you do take such a drug and notice you can't pee fully or at all, get medical help as soon as you can! Seriously, the longer you wait, the bigger the risk of getting life-long complications. Especially if you have lots of pain already, then ER/A&E right away!

Hopefully this was the last update to this thread. Chapter is over.

 

[Pharmaruined]

I did try that for a week when the issue first appeared, but the urine sample they took to the lab showed no infection, so it had no effect. Luckily I got no side effects, which is rare for me with antibiotics. Usually my stomach gets completely destroyed.

Anyway, it all seems to be working again! Day two of not needing to catheterise anymore now, although I've done it anyway 1-2 times each day just in case. It all feels normal, too. No struggle to get going, steady stream until it stops and then the feeling of having emptied the bladder fully. Last time I had that feeling was over a month ago.

The best thing about it all is that I still have the single-use catheters ready as a backup if I ever get the same issue again. Not that I should ever experience this again unless I'm extremely unlucky, but it's still a good comfort to know I can handle it on my own.

As for the reasoning why Abilify/Aripiprazole was the cause, it's because antipsychotics affect the nervous system and that can in turn affect bladder control. It's not unheard of to happen, although it's supposedly very rare. I don't think anyone who reads this needs to worry even if you take or are thinking of taking Abilify, or any other antipsychotic medicine.

However, if you do take such a drug and notice you can't pee fully or at all, get medical help as soon as you can! Seriously, the longer you wait, the bigger the risk of getting life-long complications. Especially if you have lots of pain already, then ER/A&E right away!

Hopefully this was the last update to this thread. Chapter is over.

Right on.. yea I don't doubt drugs affecting the nervous system in a very bad way.. glad you're not suffering

 

[Silver]

she brought up the question about going back to work and what kind of plan there was for it. I understand why she asked, and I understand that going back to work even if just an hour a week would be beneficial for my well-being... if it weren't for the fact that I can barely function right now.

How am I supposed to think about work when I can't even feed myself properly? What about hygiene? Daily life things like laundry, grocery shopping and cleaning? I do none of those things and haven't been able to for months. I only leave my apartment if I absolutely have to, for appointments and such that would mess up my life more if I missed them.

It's not like I'm making it up because I am lazy and don't want to work. I love my job and want to go back as soon as I'm able to. Life as I live it now is a nightmare, no one should have to live like this. No one would ever want to. I'm not here by choice. If it were as simple as just taking up my work laptop and start working to improve my mental health, I would do that. I have tried checking the work email and it stressed me out for days even though I only read the subject lines.

I feel like I'm not understanding something vital, because people keep suggesting and talking about work. I can't wrap my head around it, but obviously there has to be something I'm missing or it wouldn't be brought up all the time. They probably think I'm more capable than I know I am.

It's just because I'm so good at putting on a mask and hiding my emotions. I can't switch that off and show the "real" me, because I never learnt how to. It's a blessing and a curse. People who care about me never need to see how miserable I truly am, but health care professionals look at me and think I'm mostly fine when I'm definitely not.

I really relate to all of this! I come across as much better than I really am and however hard I try when I'm talking to medical professionals, I can never fully express how hard I find everything. It is demoralising after a while.

I hope your bladder problems have improved a lot now.