?neurogenic bladder

anniemax1968
anniemax1968 Online Community Member Posts: 21 Contributor
Hi I wonder if anyone can give me some advice. I have spastic diplegia cp and I am 21. I walk using a kaye walker. Over the last year I have been experiencing bladder problems going to the toilet frequently. My gp starting me on solfacenacin and referred me for a pelvic ultrasound. I went the other day and the sonographer said I am retaining some urine (200ml) after going to toilet with a full bladder. My GP has referred  me to urology and stopped solafenacin. I am of course googling it which I know is the worse thing to do. Has anyone had any experience of this. Ie what further tests or treatment Any advice would be great. Thanks so much

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @anniemax1968

    Welcome to the community! :) 

    I am going to tag @Richard_Scope who is our Cerebral Palsy Programme Lead :) 

    Hopefully the referral comes through quick for you! 
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @anniemax1968

    Neurogenic bladder is when you have urinary problems related to issues with your brain, spinal cord, or other nerves. It’s a common problem among people with cerebral palsy. 

    The ability to urinate properly involves neural feedback from your brain and spinal cord to your bladder. Changes in the nervous system of people with cerebral palsy can lead to neurogenic bladder. 

    How does neurogenic bladder affect people with cerebral palsy? 

    Cerebral palsy primarily causes problems with: 

    • movement 

    • balance 

    • posture 

    Everybody with cerebral palsy has movement problems, but some people have other problems, such as intellectual disability or urinary control problems. 

    Approximately 30% to 60% of people with cerebral palsy have urinary problems such as neurogenic bladder

    Neurogenic bladder occurs when you lack proper bladder control due to problems with your brain, spinal cord, or other nerves. The severity of urinary tract symptoms in people with cerebral palsy is related to their level of: 

    What are the symptoms of neurogenic bladder in people with cerebral palsy? 

    People with cerebral palsy commonly have symptoms of an overactive bladder, such as: 

    Factors indirectly related to cerebral palsy, like catheter use and frequent urinary tract infections (UTIs), can cause or worsen bladder spasms. 

    Less commonly, people with cerebral palsy can have an underactive bladder. Symptoms of an underactive bladder include: 

    • poor urine flow 

    • slow start to your urine stream 

    • feeling like your bladder isn’t completely empty (urinary retention

    • straining to empty your bladder 

     

    What causes neurogenic bladder in people with cerebral palsy? 

    Neurogenic bladder is caused by a disruption in the typical neural pathway from your brain to your bladder. It’s caused by abnormal development or damage to your nerves, spinal cord, or brain. 

    What are the complications of neurogenic bladder in people with cerebral palsy? 

    In a 2020 review of studies, researchers found that the risk of UTI is significantly higher in children and adolescents with cerebral palsy than in the general population. 

    Other potential complications of neurogenic bladder include: 

    What is the treatment for neurogenic bladder in people with cerebral palsy? 

    There are several treatment options for neurogenic bladder for people with cerebral palsy. These include: 

    Incontinence training 

    In a 2022 study, researchers found that incontinence training with urotherapy can be an effective treatment for urinary incontinence in children with cerebral palsy. 

    Urotherapy 

    UrotherapyTrusted Source refers to nonsurgical and nonmedication-based therapies for neurogenic bladder. It includes: 

    Medications 

    MedicationsTrusted such as oxybutynin are also sometimes used to treat neurogenic bladder. 

    Surgery 

    Surgery may be needed if symptoms are severe and other treatments fail. 

    What’s the outlook for people with cerebral palsy who have neurogenic bladder? 

    Cerebral palsy is a lifelong disability. Clinical symptoms may change or worsen over time as your child’s central nervous system matures and their body changes. People with mild forms of cerebral palsy have almost the same chances of living a full life as people without cerebral palsy. 

    The outlook for people with cerebral palsy who have neurogenic bladder varies. Many people have improvements in their symptoms with treatment. 

    How is neurogenic bladder diagnosed in people with cerebral palsy? 

    The doctor or healthcare professional seeing your child will ask questions to find out what symptoms your child is experiencing. They’ll also want to know about other symptoms, such as trouble with bowel function or whether your child has a history of UTIs. 

    The doctor may want to measure your child’s urinary tract function with a urodynamic study. The urodynamic study includes tests like: 

    • pressure flow study to measure how well their bladder handles pressure 

    • leak point pressure measurement to see if their bladder leaks 

    • electromyography to test nerves 

    • cystometric test to see how much urine their bladder can hold 

    The doctor may also order imaging to look at your child’s nerves, spinal cord, or brain. Imaging techniques may include: 

  • anniemax1968
    anniemax1968 Online Community Member Posts: 21 Contributor
    Thank you Richard. I have seen this article previously. I was hoping to speak to some people on their experience of this condition and what I can expect at my first appointment with urology 
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    For your first Urology appointment, I would suggest listing all of the medications and supplements you are currently taking (if any).
    For appointments such as this, I make a list of my current symptoms and how they impact my day-to-day life. It is difficult for some but you have to be brutally honest.
    It's also I good idea to have some questions for the Urologist. Things like; treatment options and concerns.
    One of the first things that will need to be done is a urodynamics study. This allows the urologist to assess the urethra and bladder function.
    Common treatment suggestions for people like us with CP are botox or intermittent self-catheterisation. You have a say in any treatment option suggested.
    One other thing that I would suggest is wearing comfy clothes for your appointment.

  • anniemax1968
    anniemax1968 Online Community Member Posts: 21 Contributor
    thanks thanks for your advice Richard. I’ve heard of urodynamics. Is that not quite an invasive test :( 
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @anniemax1968

    The procedures I listed in my first post are all types of urodynamics testing:
    • pressure flow study to measure how well their bladder handles pressure 

    • leak point pressure measurement to see if their bladder leaks 

    • electromyography to test nerves 

    • cystometric test to see how much urine their bladder can hold 

    Normally, your urologist will explain the options to you and decide on the best test for your situation.

    Here is some information about each urodynamics test.


    Cystometry

    A cystometric test, or a cystometrogram, is a test that uses catheters (thin, flexible tubes) to measure pressure inside your bladder. The test can tell:

    • How much pee your bladder can hold.
    • How much pressure your bladder is under when it stores your pee and how quickly that pressure rises while your bladder fills.
    • How full your bladder is when you feel the urge to pee.

    The test can also measure contractions or spasms of your bladder wall while your bladder is filling.

    In a cystometric test, you begin with an empty bladder. Your healthcare provider inserts a small catheter into your bladder through your urethra. This catheter has a sensor called a manometer on it, which can measure bladder pressure throughout the study. Your provider may also insert a second catheter into your vagina or rectum to measure pressure inside your abdomen.

    Then, they slowly fill your bladder with a warm, sterile solution. You might be asked to cough or strain while your bladder is filling so that the point of pressure (leak point pressure) can be recorded. At the end of a cystometrogram, you’ll be asked to empty your bladder. The manometer will measure the pressure of your bladder and your flow rate (pressure flow measurement).

    Some people may find it difficult to empty their bladders with a catheter or with another person in the room. Don’t be embarrassed if this happens. While you might feel your healthcare provider inserting the catheter into your urethra, the test doesn’t hurt.

    Electromyography

    Electromyography uses sensors to measure the electrical activity of the muscles and nerves in and around your bladder and sphincters. The test uses electrode patches near your urethra and rectum to record electrical currents when muscles in your pelvic floor contract.

    Uroflowmetry

    Another test that measures how much and how quickly you pee is uroflowmetry. For this test, your provider will ask you to have a full bladder when you come to the office. You’ll pee into a machine (sort of like an electronic toilet) that automatically measures the amount and flow rate of your pee, creating a graph that shows any changes. Test results will indicate that you may have weak bladder muscles or some kind of blockage causing your stream of urine to be weak or intermittent.

    Postvoid residual measurement

    The postvoid residual measurement test measures the amount of pee left in your bladder after you empty it. The urine that’s left is called the postvoid residual and everyone has a tiny bit left after they pee. Your healthcare provider typically uses an ultrasound to create a picture of your bladder (called a bladder scanner).

    People with certain medical conditions may not be able to have a bladder scan. In these cases, postvoid residual can also be tested by using a catheter that’s placed into your urethra and then into your bladder to remove the excess urine. A postvoid residual of 148 millilitres or more is a sign that your bladder isn’t emptying completely, but this can vary. Your healthcare provider will review the results with you.

    Video urodynamic tests

    Video urodynamic tests combine cystometry, uroflowmetry and X-ray cystography into a single test. The digital equipment healthcare providers use in this test can measure urine flow and pressure in your bladder and rectum by using X-rays. The equipment takes images of your bladder during filling and emptying. These tests provide useful information about bladder and urethral function and show the size and shape of your bladder. If X-rays are done, your bladder will be filled with a fluid that contains contrast dye material, which makes the images show up more clearly. These contrast dyes typically don’t absorb into your body. However, people with a contrast dye allergy should always let their healthcare provider know about their allergy (and any others) before any procedure or treatment.

    Is there any preparation for urodynamic testing?

    Most of the tests don’t require any special planning. For some, your provider may ask you to drink fluids before the test so that your bladder is full. Be sure to ask your healthcare provider any questions before the test or if you have to stop taking certain medications beforehand.

    What happens after a urodynamic test?

    You might have mild discomfort or soreness when you pee. This should only last a few hours. You might even see a small amount of blood in your pee. These symptoms might ease up if you drink 8 to 16 ounces of water every hour for two hours.

    Your healthcare provider might also suggest taking a warm bath or holding a warm, damp washcloth over your urethral opening. You might also be told to take over-the-counter (OTC) pain medication if you need it.

    In some cases, your provider might give you a prescription for an antibiotic to prevent infection, but this isn’t always necessary. If you have any symptoms of infection, such as a fever, chills or pain, you should call your healthcare provider immediately.

    How long do urodynamic tests take?

    The exact length of the test varies but you can expect it to take 30 to 45 minutes, on average.

    What are the risks of urodynamic testing?

    Urodynamic testing is extremely safe and reliable. There’s a small chance of developing a urinary tract infection due to inserting a catheter into your urethra.

    How painful is urodynamic testing?

    Urodynamic tests shouldn’t be painful. You may feel soreness for up to 24 hours afterwards, but you shouldn’t have severe pain.

    Can you be sedated for urodynamic testing?

    It’s usually not necessary for adults to receive sedation or anaesthesia before urodynamic testing. But, if a child is having the test, very mild sedation may help relax them. It’s best to discuss concerns about sedation or anaesthesia with your consultant.

  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    @anniemax1968, I assume that your GP has informed the Urologist that you live with CP?
  • anniemax1968
    anniemax1968 Online Community Member Posts: 21 Contributor
    Thanks Richard and I would hope so