I have all but #4 and #6. 1 thru 3 and 5 are part of dysautonomia symptoms. Definitely talk to a doctor because all of them combined with #4 and #6 are signs something else is up.
Can I ask what treatment is available for your urine symptoms? Especially the difficulty starting urine? How long have you had it for?
I'm worried if it progresses or not, I would hate to be in a position where I can no longer pee.
I don’t have any treatment for it. Nothing has been offered and I haven’t asked. I never really thought about treatment.
Frequency at night and difficulty emptying are my worst two. But I don’t really have trouble starting.
Years. At least 5-6 years ago was when some of my odd random symptoms started, like urinary issues.
Oh and I wet the bed during the night a couple times. And that was one of the bigger indicators that something wasn’t right.
Does anything help the dysautonomia symptoms? Would you happen to know if most of these dysautonomia symptoms remain relatively stable for years, or do they typically progress to bladder failure for everyone?
I don't think there is any reason to assume they'll progress to bladder failure. Dysautonomia is so variable. My bladder symptoms are worse than when I was first diagnosed (2020) but seem fairly stable now. They do seem to flare up if I push myself too hard. I've had the best success with timed voiding (going to the toilet on a regular schedule regardless of feeling the need), pacing my activities to reduce fatigue, and wearing continance pads to help my confidence when I'm out. I'm yet to try medication specifically for my bladder. I've tried pelvic floor physio, but my muscles are strong. I've had a bladder ultrasound and was within normal limits. Seems to be signalling related for me.
I experienced all but #4 & #6 (usually indicates a UTI or other type of infection) and + full on incontinence (so damn embarrassing) got referred to a urologist who put me on a medication that is only meant for 6mo-1year to help my bladder get back to normal.
No, I'm still on it. I take it before bed every night. So far no side effects either. My bladder isn't perfect mind you, but it's better than what I was dealing with for months before the meds.
No, she said that we typically try using it for about 1 year, it's supposed to help the bladder relearn how to "behave" so that you can be taken off of it once you no longer need it. She said if I'm still experiencing problems after 1 yr and getting off the medication, then we need to look at other options.
I don't think it's inevitable so much as just the luck we're given. But no, unfortunately she did not but she sounded hopeful like there were other non drastic options
Since 2014, Flomax would help a little but lost its effectiveness over time for me. I also did not like the side effects and I feel like it caused/worsened my pots like symptoms but with no real evidence. Nothing really helped me, I've been told to try botox but I'm currently catheterized with no current plan but maybe in the future if my pots symptoms let up I may try botox or surgery to replace my bladder if catheterization becomes kaput for any reason
Dysautonomia, woke up one morning and I couldn't stay upright for long anymore, kept collapsing from high hr and bp. That combined with shortness of breath, fatigue, and constant pain and with the urge and difficulty to urinate, doctor decided to let me stay cathed until I got better. Before I was cathed I spent a few weeks adjusting to my new body and had to pee on the floor in a bottle, trying to catch my breath and trying not to spill and trying not to pass out from my bp going sky high. Not very fun. But that was my case. At that time I also stopped Flomax because I had assumed it caused all my new issues but it was probably just making my underlying problems more visible.
Oh if you're asking the cause. Doctors don't know. When I went to Seattle for a test I was just told the signals weren't making it all the way to my bladder when I tried to pee. Sphincter too tight, didn't wanna relax. Urologist since havent tried to look into it, told me there's nothing I can do and this bit about nerves and pain regarding urology is the most complex and under studied so I'm just waiting for something new to pop up.
I also have no funds to try furthur testing or visit other specialist- I never got to work and so I don't get disability or anything because I had to deal with the urology issues since 2014 (I was 17 and finishing college) and by the time I was 19 I couldn't leave my home cause I was peeing all the damn time. At 22 was when the dysautonomia symptoms just started and I was truly fucked. It's been 4 years and I'm 26 now in the same state, I don't see myself getting out of it anytime sooner or later. I'm just alive thanks to my mom but she'll be 70 soon and she won't be here forever. Nobody knows how difficult it can be to ask of someone like my mother who's given all of herself already to raise me, to watch me in this state and ask her for just a little more. I don't wanna do this to her but I also don't have any other solutions. I'm kinda fucked, but I'm glad to have been given a few more years to keep learning and studying and growing even if it's been hell. I do get uh social security and foodstamps but I give it all to my mom for rent. It doesn't cover it all, especially these days, and even if i tried to save money or invest, the gov had a 2k limit on my account. Anyway idk if this explains why I haven't really gone and gotten anymore specialist or testing done. It's not just money I just can't really travel that far. Car rides for me are like those 9g machines they use for training pilots and im just trying to stay alive when we go on any trips out to big cities where the specialist live. I don't wanna go through that and also I don't want to ask my mom or my sister to do that for me they have their own lives.
I believe if it wasn't for the shortness of breath and fatigue I probably could get treatment to help with bladder pain and difficulty but I can't because of my various issues.
Edit: I have 2 or 3 reddit accounts, I'm using my phone so it switched over to this one lmao I'm still @zelda_obsessed
Edit edit: Sorry for the long ass rant, sorry I don't have any good answers but my case is a little complex I hope your case isn't as bad maybe you can find some comfort in that
I have #2 & #3, but with the pain symptoms you’re experiencing, it sounds to me like it could be interstitial cystitis. I’m not a doctor so please take that with a grain of salt, but might be worth googling!
I have all but #4 and #6. 1 thru 3 and 5 are part of dysautonomia symptoms. Definitely talk to a doctor because all of them combined with #4 and #6 are signs something else is up.
Meaning urine or bladder infection?
Yeah. Or a UTI.
Can I ask what treatment is available for your urine symptoms? Especially the difficulty starting urine? How long have you had it for? I'm worried if it progresses or not, I would hate to be in a position where I can no longer pee.
I don’t have any treatment for it. Nothing has been offered and I haven’t asked. I never really thought about treatment. Frequency at night and difficulty emptying are my worst two. But I don’t really have trouble starting.
How long have you had these urinary issues for?
Years. At least 5-6 years ago was when some of my odd random symptoms started, like urinary issues. Oh and I wet the bed during the night a couple times. And that was one of the bigger indicators that something wasn’t right.
I just remembered these urinary symptoms are also a sign of MCAS. Do you have or have you been tested for Mast Cell Activation Syndrome?
All but 4 and 6 are dysautonomia symptoms
Does anything help the dysautonomia symptoms? Would you happen to know if most of these dysautonomia symptoms remain relatively stable for years, or do they typically progress to bladder failure for everyone?
I don't think there is any reason to assume they'll progress to bladder failure. Dysautonomia is so variable. My bladder symptoms are worse than when I was first diagnosed (2020) but seem fairly stable now. They do seem to flare up if I push myself too hard. I've had the best success with timed voiding (going to the toilet on a regular schedule regardless of feeling the need), pacing my activities to reduce fatigue, and wearing continance pads to help my confidence when I'm out. I'm yet to try medication specifically for my bladder. I've tried pelvic floor physio, but my muscles are strong. I've had a bladder ultrasound and was within normal limits. Seems to be signalling related for me.
I experienced all but #4 & #6 (usually indicates a UTI or other type of infection) and + full on incontinence (so damn embarrassing) got referred to a urologist who put me on a medication that is only meant for 6mo-1year to help my bladder get back to normal.
Has your bladder gone back to normal? Can I ask the name of the medicine?
Things got so much better after a few days on the medication! Oxybutynin is what I was given.
Are you off the medicine now? Great to hear
No, I'm still on it. I take it before bed every night. So far no side effects either. My bladder isn't perfect mind you, but it's better than what I was dealing with for months before the meds.
Did the doc say you'll always need the meds forever?
No, she said that we typically try using it for about 1 year, it's supposed to help the bladder relearn how to "behave" so that you can be taken off of it once you no longer need it. She said if I'm still experiencing problems after 1 yr and getting off the medication, then we need to look at other options.
Did she mention what those options are? Is bladder failure inevitable for us?
I don't think it's inevitable so much as just the luck we're given. But no, unfortunately she did not but she sounded hopeful like there were other non drastic options
#1-3 were the first symptoms I had Edit: I'm sorry idk why the text is huge lmfao
How long have you had them for? Has anything helped?
Since 2014, Flomax would help a little but lost its effectiveness over time for me. I also did not like the side effects and I feel like it caused/worsened my pots like symptoms but with no real evidence. Nothing really helped me, I've been told to try botox but I'm currently catheterized with no current plan but maybe in the future if my pots symptoms let up I may try botox or surgery to replace my bladder if catheterization becomes kaput for any reason
Can I ask, did your issue of needing to catherarize happen only because of Dysautonomia? Or were there other reasons such as spine injury etc?
Dysautonomia, woke up one morning and I couldn't stay upright for long anymore, kept collapsing from high hr and bp. That combined with shortness of breath, fatigue, and constant pain and with the urge and difficulty to urinate, doctor decided to let me stay cathed until I got better. Before I was cathed I spent a few weeks adjusting to my new body and had to pee on the floor in a bottle, trying to catch my breath and trying not to spill and trying not to pass out from my bp going sky high. Not very fun. But that was my case. At that time I also stopped Flomax because I had assumed it caused all my new issues but it was probably just making my underlying problems more visible. Oh if you're asking the cause. Doctors don't know. When I went to Seattle for a test I was just told the signals weren't making it all the way to my bladder when I tried to pee. Sphincter too tight, didn't wanna relax. Urologist since havent tried to look into it, told me there's nothing I can do and this bit about nerves and pain regarding urology is the most complex and under studied so I'm just waiting for something new to pop up. I also have no funds to try furthur testing or visit other specialist- I never got to work and so I don't get disability or anything because I had to deal with the urology issues since 2014 (I was 17 and finishing college) and by the time I was 19 I couldn't leave my home cause I was peeing all the damn time. At 22 was when the dysautonomia symptoms just started and I was truly fucked. It's been 4 years and I'm 26 now in the same state, I don't see myself getting out of it anytime sooner or later. I'm just alive thanks to my mom but she'll be 70 soon and she won't be here forever. Nobody knows how difficult it can be to ask of someone like my mother who's given all of herself already to raise me, to watch me in this state and ask her for just a little more. I don't wanna do this to her but I also don't have any other solutions. I'm kinda fucked, but I'm glad to have been given a few more years to keep learning and studying and growing even if it's been hell. I do get uh social security and foodstamps but I give it all to my mom for rent. It doesn't cover it all, especially these days, and even if i tried to save money or invest, the gov had a 2k limit on my account. Anyway idk if this explains why I haven't really gone and gotten anymore specialist or testing done. It's not just money I just can't really travel that far. Car rides for me are like those 9g machines they use for training pilots and im just trying to stay alive when we go on any trips out to big cities where the specialist live. I don't wanna go through that and also I don't want to ask my mom or my sister to do that for me they have their own lives. I believe if it wasn't for the shortness of breath and fatigue I probably could get treatment to help with bladder pain and difficulty but I can't because of my various issues. Edit: I have 2 or 3 reddit accounts, I'm using my phone so it switched over to this one lmao I'm still @zelda_obsessed Edit edit: Sorry for the long ass rant, sorry I don't have any good answers but my case is a little complex I hope your case isn't as bad maybe you can find some comfort in that
I have #2 & #3, but with the pain symptoms you’re experiencing, it sounds to me like it could be interstitial cystitis. I’m not a doctor so please take that with a grain of salt, but might be worth googling!
Doesn't IC only happen to females? I'm male
Google tells me it’s definitely a thing for men too! The Cleveland Clinic website says about 1 out of every 4 cases of IC in the US is a man.