#Neurogenic bladder

[matchesandmetaphors]

Bladder condition gang rise up 🫡

I have a form of neurogenic bladder from peripheral nerve damage (from a very needed surgery as a child). Basically I can’t feel the urge to pee unless my bladder is extremely overfull, and then if it’s a certain amount of full I can’t fully empty it. I’m prone to infection, and I had a lot of incontinence issues before I was aware of what the problem was. Now I keep it mostly under control with timed voiding (basically realizing I can’t trust my sensation in that area and peeing at regular intervals even when I feel like I don’t have to), but I might have to start intermittently catheterizing one day.

Not gross! Just a fact of my life.

i just wanted to say you're not gross if you deal with gastrointestinal issues. even if people treat your symptoms and disorders like they're disgusting, they're not. they're genuine health problems- health includes your entire body. if you are having issues digesting/processing foods, eating, controlling your bowels or having diarrhea or constipation issues or frequent gas and bloating, you're not gross. if you need a colostomy bag, you're not gross. if you need to use diapers you're not gross. if you frequently vomit you're not gross. if you deal with acid reflux and chronic heartburn you're not gross.

people and even doctors will treat people with these kinds of issues like we're disgusting but we're just people with health issues. a GI issue is no less worthy of attention than a broken bone. it doesn't matter where it's located in the body you still need help with it. there are many issues people can have with digestion that aren't necessarily "gross" and they don't deserve to be looked down on. you deserve care and respect from everyone in your life. you don't deserve to be treated like your health problems don't matter

[plague-parade]

shout out to people with bladder and bowel issues this disability pride month.

its so hard to talk about our symptoms without being seen as gross or unsanitary.

you arent gross. you arent dirty. you arent unsanitary. i love you all <3

[little-pissbaby]

this is gonna get TMI and it will get sad and whiny so please don't feel obligated to keep reading.

it takes so many steps to be alive. all of the things you do subconsciously suddenly become arduous tasks when you have to do them manually. things like eating, drinking, sleeping, breathing, using the bathroom, it's exhausting having to think about and consciously or manually do even just one of those things.

I was officially diagnosed with dysautonomia a few months ago, although I have been struggling with my symptoms for over a decade and I've been in treatment for several years. I was also diagnosed with a neurogenic bladder that same month. this means I have to catheterize myself 3-4 times a day every day for the rest of my life, or until I can get a suprapubic catheter placed.

Y'ALL. self-cathing is beyond exhausting. it's a little bit of a genuine workout, especially when you're morbidly obese like me. I hate that I've gotten really good at it and that it doesn't take me long at all now. I didn't want to get good at it, I didn't want to have to have this skillset. I already have to know how to draw up and give an IM injection, how to flush an IV, how to reduce dislocated joints in myself and others... I am TIRED.

I'm sure a colostomy is also in my near future. I have the same problems in my colon that I have in my bladder, only it's also complicated by endometriosis in the walls of my colon and rectum. they haven't been completely infiltrated yet, but if this IUD doesn't do its job, then I'm definitely gonna start losing organs and my mind.

at this point I'm out of words to explain why I'm so cosmically fatigued but if I tag every diagnosis/condition I have maybe y'all can sorta get an idea.

sorry for ranting. I have to go cath myself now.

at least I do it under the supervision of the best medical advisor ever <3 all she asks for in return are kisses, cuddles, and crunchies <3<3

[amireallythatcomplex]

In 5 days, it'll be one year since I collapsed and face planted a bex after my entire lower body cramped up at the same time, making me unable to move my legs and causing pain way off the 1-10 scale. I called in sick for work and went to the QMC A&E in Nottingham. I spent around 15 hours in a wheelchair in paid despite being given strong pain relief. I was then transferred up to the Neuro-Spinal Assessment Unit on 15th August and had an MRI that showed a herniated L5/S1 disc, and I was diagnosed with Cauda Equina Syndrome, something I'd heard of but I didn't know exactly what it was. I was told I'd be having emergency surgery as soon as a theatre slot became available and the spinal surgeons were able to operate - I was given two choices 1) have emergency surgery that could paralyse me completely/remove the pain and I had a very good chance of a full recovery, or 2) stay in excruciating pain until the disc completely severed my spinal cord and completely paralysed me. Obviously, I wanted to get better and get rid of the pain, so I opted for surgery.

I had an L5/S1 discectomy (they removed part of the disc to relieve pressure on the spinal cord) on 16th August 2023. The surgeons said they were able to remove about 80% of the disc that was putting pressure on my spinal cord, so there's still some residual nerve compression to the nerves that go into my left leg. I was told that the disc was severely calcified, meaning it had been herniated a long time before it took my legs from under me - looking back I've potentially had symptoms for years, but I didn't know they were red flags for CES. Afterwards, I found out that the surgery is offered to preserve nerve function and not cure the symptoms, so now I have an incomplete spinal cord injury.

A year on, I still have weakness in my legs, although they're a bit stronger than just after surgery; however, because of the weakness and nerve pain in my legs, and also back pain, I can only walk short distances, which is why I also use a wheelchair for longer distances, or if my pain is too bad. It's why I describe myself as ambuplegic since I'm partially paralysed and an ambulatory wheelchair user. Currently, I'm waiting for the pain management team to trial nerve root block injections for my left leg (although recently, my right leg has been more painful). I'm on a lot of strong painkillers too, but 90% of the time I'm still in pain, which is why pain management are going to be exploring options with me to help reduce the pain.

Do I wish I'd had the surgery now? In a way, no. That might sound bizarre because without the surgery, I'd now have a complete SCI and would be completely paralysed from the waist down. However, it would mean I'd have no nerve pain in my legs! My bladder (I currently have a urethral catheter because intermittent self catheterising wasn't working well, and I'm waiting for a suprapubic catheter to be fitted) and bowel (I take lots of laxatives and have just started bowel irrigation treatment) also don't work properly due to nerve damage, so not having the surgery wouldn't have made much difference to them.

[exlibrisfangirl]

Post-Surgery Update (No. 4?)

Aaaaaand I am ONE MONTH post-op! 🎉

This past week has been the hardest yet. My body doesn't know which way is up (which makes doing anything but lying flat all the time reeeally interesting reeeally fast), and I feel like I'm secretly part of some cosmic being's science experiment.

All of that aside, I'm grateful that I'm slowly but surely continuing to regain nerve function... bit by stinging, prickling, burning, shocking, electrifying bit!

[cowboyposer]

Sick and tired of seeing every living with incontinence article only being about elder care and about how "you can cure this!" Like no please stop I'm just trying to find out how to live without wanting to die constantly

[ofdinosanddais1]

If you hear screaming, it's me having to hold my pee for like three more hours because my endoscopy requires a pregnancy test for a sexually-inactive asexual lesbian that is currently on their period which should indicate that pregnancy is very unlikely.

[subodhurology]

Understanding Neurogenic Bladder: Impact and Management Strategies

Neurogenic bladder refers to a condition where nerve damage disrupts the normal control of the bladder. This dysfunction can cause a variety of issues, including urinary incontinence, an overactive bladder, or difficulty emptying the bladder. For those living with neurogenic bladder, daily activities can be significantly affected, but with the right strategies, many individuals can regain control and improve their quality of life.

This article will explore how neurogenic bladder impacts daily living, its connection to conditions like myelomeningocele, and the available management options. We will also delve into overactive bladder (OAB), which often overlaps with neurogenic bladder dysfunction.

What Is Neurogenic Bladder?

Neurogenic bladder is a disorder caused by nerve damage affecting communication between the brain, spinal cord, and bladder muscles. Normally, the brain sends signals to the bladder to control when to contract and when to relax. When these signals are disrupted, it can result in bladder dysfunction.

There are two main types of neurogenic bladder:

Overactive Neurogenic Bladder: In this case, the bladder muscles contract too frequently or without warning, leading to urgency, frequent urination, and sometimes incontinence. This is also referred to as overactive bladder (OAB).

Underactive Neurogenic Bladder: Here, the bladder muscles fail to contract properly, making it difficult to fully empty the bladder. This can lead to urinary retention, which increases the risk of infection and discomfort.

Causes of Neurogenic Bladder

Neurogenic bladder can be caused by several neurological conditions, including:

Spinal Cord Injuries: Damage to the spinal cord interrupts the communication between the brain and the bladder.

Multiple Sclerosis (MS): MS affects the central nervous system and can lead to bladder dysfunction.

Parkinson’s Disease: Parkinson's-related neurological damage can impair bladder control.

Stroke: A stroke can disrupt the brain’s ability to send appropriate signals to the bladder.

Diabetes: Chronic diabetes can cause nerve damage, affecting bladder function.

One of the leading causes of neurogenic bladder in children is myelomeningocele, a form of spina bifida, which results in incomplete formation of the spinal cord during fetal development, causing nerve damage and bladder control issues.

How Neurogenic Bladder Affects Daily Life

Living with neurogenic bladder can pose significant challenges that affect both physical and emotional well-being. Some of the most common daily difficulties include:

Incontinence and Embarrassment: Individuals with overactive neurogenic bladder may experience urinary incontinence, often at inopportune moments. This can cause embarrassment in public or professional situations, leading some to avoid social events and experience isolation.

Frequent Urination: The constant need to urinate, sometimes as often as every 30 minutes, can be disruptive to work, school, or leisure activities. The anxiety of finding a restroom in time is a major concern for many people.

Nocturia and Sleep Disruption: Frequent nighttime urination can lead to sleep disturbances, causing fatigue and a reduced overall quality of life.

Urinary Retention and Infections: With an underactive neurogenic bladder, incomplete emptying of the bladder can lead to urinary retention, which increases the risk of infections such as urinary tract infections (UTIs).

Emotional and Psychological Effects: The constant planning and worry about bathroom access can result in anxiety and depression, making daily life even more challenging.

Managing Neurogenic Bladder and Overactive Bladder

There are various treatment options to manage the symptoms of neurogenic bladder and restore normal bladder function. The most effective treatment depends on the underlying cause and the specific type of bladder dysfunction.

1. Lifestyle and Behavioral Changes

Bladder Training: This involves creating a structured schedule for urination and gradually increasing the intervals between bathroom visits to help the bladder hold urine for longer periods.

Fluid Management: Reducing the intake of bladder irritants like caffeine, alcohol, and acidic foods can help alleviate urgency.

Pelvic Floor Exercises: Exercises like Kegels strengthen the pelvic floor muscles, which support bladder control and reduce episodes of incontinence.

2. Medications

Anticholinergics: These drugs relax the bladder muscles, reducing urgency and frequency of urination.

Beta-3 Adrenergic Agonists: These medications relax the bladder, allowing it to hold more urine.

Botox Injections: Botox can be injected into the bladder to reduce overactivity and prevent involuntary contractions.

3. Catheterization

For those with underactive neurogenic bladder, catheterization may be needed to fully empty the bladder and reduce the risk of infections. There are two main types of catheterization:

Intermittent Catheterization: A catheter is inserted periodically to empty the bladder.

Indwelling Catheter: A catheter remains in place for continuous drainage.

4. Surgical Options

In severe cases, surgical procedures may be necessary:

Bladder Augmentation: This surgery increases bladder capacity by adding a piece of intestine to the bladder wall.

Urinary Diversion: In extreme cases, where the bladder is non-functional, urine can be redirected through a stoma to an external pouch.

5. Electrical Stimulation

Sacral Nerve Stimulation: A small device is implanted to send electrical impulses to the sacral nerves, improving bladder function.

Tibial Nerve Stimulation: This less invasive treatment involves mild electrical impulses to the tibial nerve, which helps regulate bladder activity.

Neurogenic Bladder and Myelomeningocele

Myelomeningocele, a type of spina bifida, is a common cause of neurogenic bladder in children. It results from incomplete spinal cord development, causing nerve damage and bladder dysfunction. Early diagnosis and intervention are crucial to managing bladder function and preventing long-term complications such as kidney damage.

Treatment options for children with neurogenic bladder due to myelomeningocele include catheterization, medications, and sometimes surgery. Multidisciplinary care is essential to managing this condition and ensuring the child’s optimal development and kidney health.

Advanced Care and Treatment Options at Subodh Urology

Managing complex neurogenic bladder cases requires expertise. At Subodh Urology, experienced urologists provide comprehensive care for both overactive bladder and neurogenic bladder, including those caused by conditions like myelomeningocele. Using advanced diagnostic tools and a range of personalized treatment options, including the latest in minimally invasive surgery, the team aims to improve both the physical and emotional well-being of patients.

If you or a loved one is dealing with neurogenic bladder, particularly due to conditions like myelomeningocele, seeking expert urological care can significantly improve outcomes. Explore advanced treatment solutions at Subodh Urology for a tailored approach to managing neurogenic bladder.

Conclusion

Although living with neurogenic bladder can be difficult, there are many effective management strategies available. From lifestyle adjustments to medications, catheterization, and advanced surgical treatments, individuals can regain control over their bladder and enhance their quality of life. By consulting with a specialist at Subodh Urology, patients can receive personalized care that addresses both their physical and emotional needs, empowering them to live confidently.

If you or someone you know is dealing with neurogenic bladder or other related conditions, seeking professional care is the first step toward a better quality of life.

[sweetthoughtsbymarie]

Neurogenic Bladder

Living with Neurogenic Bladder is a very discouraging thing. Between leaking in between going to the bathroom and not having a knowledge the bladder needs relief especially middle of the night.

[superflaminggayelmo]

Autism, GERD, neurogenic bladder, and End Stage Renal Disease, among other things

Autism: dx'ed by a pediatric psych in 2004, so I've known about that for a long time. GERD: figured it out after online research then told someone at an urgent care (iirc??) and they dx'ed me. This would've been around 2015 I think. Neurogenic bladder was dx'ed by a urologist sometime in the early 2000s but I don't remember the exact year. Got my ESRD diagnosis in late 2020 after landing in the hospital with all of the kidney failure symptoms. Started dialysis in December of that year, just before turning 30 3. Lots of meds. Lexapro, phosphate binders, and Pepcid are a godsend 4. Yup to both!

5. Yeaahhh. My bladder issues are part of the reason my kidneys failed. 6. I'm struggling to figure that out tbh. 7. Renal and GERD diets and how restrictive they can get. Honestly renal failure and dialysis need to be talked about more in general, and not just in terms of transplants, pets, or scientist talk. Another thing I wish was talked about more is sensory-seeking autism. 8. I want to travel more but because of money and how difficult it is to find an accommodating kidney center in another town, it's been a lot harder to accomplish 9. spoons 10. I'm cooking a lot more than before the kidney failure, if that counts. 11. hmm I'd say low-medium 12. I haven't figured out anything specific yet

13. All the people who went "OmG i'M sO SoRrY!" or "but you're so young!!" after learning about my kidneys. Also the doc who made a backhanded comment about my diet, lack of exercise, and weight about two months ago. And the person who, upon learning of my kidney shit, proceeded to tell me twice that I'm "so brave" 14. Possibly? I found a few other sensory seeking autistic people on Twitter. But then again I might've just misread the question. 15. Good question! I guess it's saying that this is my life, it's how my body is, also there's no shame in being autistic. These things aren't going to change or "get better". Oh and I'm more than just my dead kidneys 16. Renal doctors and techs need to stop shaming or scolding patients for eating things that aren't part of the renal diet. They need to listen to us more in general. We are human beings and deserve to still live our lives and enjoy them while we can, and also our needs and voices matter too. Oh and if we decide to refuse transplant, RESPECT OUR DECISION. There's probably a good reason why we made that choice

disability pride ask game

I'm so sleepy but I have persisted anyway bc i am so brave

feel free to reblog, try and send an ask to the person you're reblogging from so the game doesn't die, and absolutely never be pressured to answer anything that feels too personal--this is about/inspiration for what you Want to share about disability and experiences being disabled, not what you feel like you have to! (also: this ask game is PRO SELF DX.)

what disability/ies do you have? (and are they mental, physical, or both?)

how long have you known you're disabled? does that match up with diagnosis?

what, if any, disability aids do you use? (mobility aids, sensory aids, braces, communicative devices, IVs, etc. meds also count here). do you customize them/their containers/outsides?

do you know any disabled people irl? what about online?

if you have multiple disabilities: do they affect each other? how?

what's something good that's come out of being disabled?

what's a struggle you wish more people talked about?

does your disability affect how you experience other parts of your identity? (gender, queerness, culture, even hobbies/life goals you're very passionate about)

how do you measure your energy? (spoons, battery, something else?)

whats something youve come up with or integrated into your life that makes disability easier, besides typical aids?

how would you label your support needs?

what's something (a struggle, a symptom, a weird phenomenon, or even a funny experience) people don't realize about your disability?

whats the most Abled Person Thing someone has said to you?

has there ever been a time where you felt solidarity/community with another disabled person in a situation with you?

what does disability pride mean to you?

free space to talk about whatever disability issue or experience you want !

[spoonielivingfree]

All About Neurogenic Bladder

September is Urology Awareness Month so, I thought I would discuss the condition and how it affects me. Neurogenic bladder is a name given to a range of bladder conditions, where the function of the bladder is affected by a problem with the spinal cord, brain or nerves. This may come about as a result of MS, spinal cord injuries or other neurological conditions. Neurogenic bladder can cause…

[little-pissbaby]

as always, we're complaining under the cut. tw for medical PTSD, mentions of medical procedures, personal/graphic descriptions of my fucked up little body, extremely privileged whining, it's worth it for the cat at the bottom tho

I am exhausted by the number of appointments I have. I've become the kind of person who has multiple appointments every single week. This week and next week are three appointment weeks, and those appointments always lead to scheduling MORE test/procedures/office visits.

I had an appointment with my urogynecologist. Given my history of neurogenic bladder and severe stage IV endometriosis, she's in agreement with me that it might be time to at least consider a bowel diversion, if not a total colonoscopy. This would be done in addition to a bladder diversion because self-catheterization has proven unsustainable and, frankly, dangerous for me to try to continue. I'll likely have a foley placed tomorrow morning that will stay in until I can get in to the urological surgeon, who has not called to schedule yet. I have the colorectal surgery consult next month and the neurourology consult a month after that. Just thinking about it gives me a headache.

I also have an EEG in a few days to see if the blackout episodes I've been having are epilepsy, and if it is, I'm not sure what we'll do since I'm already on a good amount of anticonvulsants. I have a feeling I'm going to leave that test with a migraine and no answers, which was exactly how the EMG/NCS I had done in my hand last Friday went.

Other things I've started include using a CPAP machine. I thought this shit was supposed to help you sleep better, but instead I'm waking up many many times in a two hour window, the pressure being pushed into my lungs is dislocating my ribs, I'm getting bloated from wearing it, and the pressure is coming out of my eyes and ears too due to a deformity in my inner ears called patulous eustachian tubes, so now my constant migraine is back in full force. I'm nothing but bloated and irritable as hell, but if I don't use it for at least four hours a day for at least 24 days a month, medicaid won't pay for it and I will have to pay out of pocket to buy the machine. My mother price checked it, it costs ~$1300 to buy the machine I have. I might just give up and give it to my brother, who also needs a CPAP but who doesn't also have EDS and is, therefore, not prone to ribs dislocating.

I met with my 4th electrophysiologist and that was a frustratingly and dangerously nonproductive appointment. He did not speak or understand spoken English well enough to be allowed to practice medicine in an English-speaking country imo. I don't give a shit about an accent, I don't think people need to "go back to where they came from" or that they need to speak English exclusively, but man it is so important in the field of medicine to be able to actually understand what your patient is saying to you. He had no idea what the condition I have even was, and he assumed I made all of these diagnoses for attention but would "humor me" and wrote IN HIS NOTES that I "insisted" on a holter monitor and tilt table test. I got these orders from Duke university, the closest university to me that has a genetic electrophysiology department and a dysautonomia clinic, both of which I was being seen at until Duke stopped taking my insurance. I was trying to tell this absolute worm brain that I was telling him what the top specialists GLOBALLY told me to have done, but I was just being young and attention-seeking I guess, I'm so dangerously angry about it, it makes my chest hurt to try and articulate just how badly this EP fucked it up for me.

I realized in the middle of a visit with my PCP on the 30th that I am not working towards a goal. Most people go to the doctor with the goal of Get Better Enough To Work, or Get Better Enough To Take Care Of The Kids. I don't have that. I'll never be able to hold down a job and I can't and don't want to have children.

I feel like the shittiest friend on Earth too because a good friend of mine only lives four hours away, but as much as we'd both like to visit, I have to schedule everything in my life around what's starting to look like a year packed with surgeries. I can't just pack up and go visit him, I come with medical equipment now. Between meds, splints, incontinence supplies, and the CPAP, I have to basically haul around a small urgent care center everywhere I go. I hate that I have to be planned around.

For a few wins, I do not have carpal tunnel, and when I had my A1C checked at my last PCP appointment, it was 4.9! Every doctor who finds that out informs me even their own A1C isn't that good because they like some specific sweet treat too much. My secret? No one has said they liked something that doesn't have dairy in it, and I've had a dairy allergy since birth.

anyway. I turned 26 just over a month ago and my beloved medical advisor turned 1 year old the same day. she's my birthday buddy :) it's weird having an Adult Cat in the house now, she's not the teeny tiny kitten that sneezed in my eye and gave me pinkeye anymore.

thanks 4 reading, besties. until my next frustratingly whiny and Packed Full of Info update <3

pictured: my big adult girl and medical supervisor 🥰

[advancedurologyandregeneration]

Best Ivf Doctors in Kolkata

Looking for the best IVF doctors in Kolkata? Advanced Urology and Regeneration offers top-notch fertility treatments. Contact us for expert consultation and personalized IVF care from our experienced doctors.

[exlibrisfangirl]

Two Weeks Post-Op!

It feels like it's flown by... I imagine because I've spent most of it asleep, lol. I've been in full-on hibernation mode, only occasionally emerging from my den (bedroom) to forage for food before going straight back to bed.

My parents were here taking care of me for the first week and a half, and they had to bring the dog with them (which my cat did not like one bit), so it wasn't exactly a quiet or low-stress environment during that time. I'm REALLY grateful for everything they did to help out, but it's nice to have a quiet house and happy cat again!

I hit a massive wall of nerve pain at the start of Week Two. I keep getting electric shock-like pains that shoot up and down my spine and legs, random body parts keep temporarily going numb, and my hands and feet constantly feel like they're on fire. I keep telling myself on repeat that, in this case, the pain is a GOOD sign because it means the nerves in question are not permanently damaged and beginning to wake up and heal. Ouch! Not permanently damaged! OUCH. NOT PERMANENTLY DAMAGED. 😅

I haven't had the energy or strength to do much of anything, but I'm hoping I'll be able to work on some writing over the next month. My post-op appointment is March 21st, and I'm not really allowed to leave the house until then (except for emergencies), so, once I've made it past the hibernation stage, we'll see if I can't get a fic or two finished! 😉

I've unfortunately had some unforseen expenses recently ($400 in vet bills for the cat, plus an indeterminate amount of car stuff), and I could really use some help, as I'm out of work until at least the end of March, and I've only got enough money saved up to pay my regular bills until then. If you are able and willing to donate to my recovery fund, my Venmo is (@)Mellifluity8, my CashApp is $mellifluity8, or you can message me for my PayPal info.

Thank you to everyone who has checked in on me! I appreciate it, even if I can't respond in a timely fashion.

Much love to you, my friends! 💛

[cowboyposer]

The only reason that there's no treatment for neurological disorders is because doctors and scientists are fucking cowardly, laws make it impossible to run any treatments and the medical field is completely stagnant. Nobody cares about conditions unless they're actually deadly and it makes me sick. I shouldn't have to live my life in suffering because medical professionals are too pathetic to do their own jobs. The doctor basically told me I have neurogenic bladder and here's the real kicker: THIS WAS INFLICTED ON ME BY ANOTHER DOCTOR. This could've been avoided, but my surgeon fucking lied and blatantly said "symptoms like loss of bladder function is incredibly unlikely." HE RAN THIS SURGERY ON ME TWO OTHER TIMES BEFORE, AND NOW HE CHOSE TO FUCK IT UP. They just don't punish people like they used to. We need death row and harder punishment for medical professionals. We *need* to kill doctors who are incompetent. We need to threaten scientists into finding cures, otherwise it will never happen.

[ofdinosanddais1]

I'm gonna start calling my cystitis episodes "bladder migraines" because that's quite literally what they are.

And to clarify: migraines are an episode consisting of a collection of neurological symptoms. It does not always include headaches. Hence why abdominal migraines exist.