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1 National Hospital for Neurology and Neurosurgery Botulinum toxin injections for the bladder Department of Uro-Neurology

2 If you would like this document in another language or format, or require the services of an interpreter, contact us on We will do our best to meet your needs. Contents Introduction 3 What is Botulinum toxin treatment? 3 How can Botulinum toxin help your bladder symptoms? 3 What are the risks of Botulinum toxin treatment? 4 Repeat Treatments 6 What alternatives are available? 7 How should I prepare for Botulinum toxin treatment? 7 Pregnancy and Botulinum toxin 9 Asking for consent 9 What happens during Botulinum toxin treatment? 10 What should I expect after Botulinum toxin treatment? 11 Where can I get more information? 13 References 13 Contact details 14 Introduction This information booklet explains the treatment of overactive bladder syndrome using injections of Botulinum toxin (BOTOX ) into the bladder wall. What is Botulinum toxin? Botulinum toxin is a protein produced by the bacteria clostridium botulinum. It works by temporarily blocking receptor sites on nerve endings, stopping the connection between the nerve and the muscle fibre. Normally this connection, when active, would cause a muscle to contract and so by blocking this connection the muscle remains in a relaxed state. How can Botulinum toxin help? Botulinum toxin is licensed for use in the bladder. In recent years doctors in Europe and America have reported high success rates when used to treat bladder over activity. 2

3 Bladder over-activity commonly causes symptoms of urinary urgency, frequency and urinary incontinence (including night time incontinence). What are the risks of Botulinum toxin injections? All treatments and procedures have risks and the risks associated with Botulinum toxin injections in the bladder are discussed below. Problems that may happen straight away It is common for your urine to have a small amount of blood staining after this procedure. We advise you to drink plenty of fluid for two days and the bleeding normally stops within 48 hours. There is a risk of a urine infection (15-20 percent) following the procedure and a short course of antibiotics is given to help prevent this. It is not usually a painful procedure, though some discomfort may be experienced. A local anaesthetic lubricating gel is used to make the procedure more comfortable. Problems that may happen later Less than one in every one hundred patients have complained of a rash, a transient flu-like illness, drowsiness or temporary leg weakness. Intermittent self-catheterisation: Botulinum toxin may temporarily reduce the ability of the bladder to contract (which is how it works to reduce overactive symptoms). This means that following treatment you may need to catheterise yourself intermittently to empty your bladder until the bladder s power recovers. To be considered for this treatment you must be willing and able to do this. The doctor will discuss this with you during your consultation and will arrange an appointment with the continence nurse team, either at the National Hospital for Neurology and Neurosurgery (NHNN) or locally. The continence nurses will teach you to catheterise yourself. If you are willing and able to do this your name is added to the waiting list. If you are unable to catheterise we may have to discuss alternative treatment options with you. 3

4 The risk of needing to self catheterise for patients with neurological conditions such as Multiple Sclerosis is much higher (between 20 and 70 percent) than those without neurological causes for their bladder symptoms (five to 20 percent). No difference in symptoms: We hope that your symptoms improve following the injections but can give no guarantee that this will be the case. Repeat treatment Botox has a temporary effect, and if there is an improvement in bladder symptoms, the duration varies from person to person. Previous studies in our department showed the effects of the treatment last on average for 11 months. For patients receiving repeat injections we hope to re-inject them on a yearly basis, but will inject sooner if after further consultation it is deemed appropriate. If I choose not to have Botulinum toxin treatment, what alternatives are available? The most commonly used treatment for overactive bladder symptoms are tablet medications. Sometimes these are tried before or instead of Botulinum toxin treatment if appropriate. Less commonly in patients with severely impaired bladder function, reconstructive surgery is considered. This is major surgery and is usually considered only when all other treatments have failed. How should I prepare for Botulinum toxin treatment? How suitable you are for Botulinum toxin treatment depends on two elements: your consultation with our team, and any urodynamics tests you may have had. A urodynamics test is a specialist investigation to determine bladder function. During the test the bladder is filled with saline (salt water) through a small catheter connected to a computer that records the bladder activity. This gives us an idea of how your bladder behaves when it fills up with urine. 4

5 During this test, as your bladder is filled, you are asked when you feel you need to pass water and we will also measure how well you can pass water. You will be asked to take a urine sample to your GP ten days before your appointment for injections so that it may be tested for an infection. If results of that test are in any way abnormal or suggest that you may have a urine infection, you must inform the department of Uro-Neurology (the telephone numbers are given at the end of this leaflet). We also recommend a urine test the day before your procedure as an extra precaution. Important note on Pregnancy and Botulinum toxin You must not be pregnant or have recently given birth when receiving this treatment. Botulinum toxin may have adverse effects on an unborn baby. It is therefore very important that if you are pregnant, planning to become pregnant or are breast-feeding, that you do not undertake this treatment. If you are a woman who could/may become pregnant, you will have urine pregnancy tests at the beginning of the treatment to make sure you are not pregnant. You will then need to use effective contraception whilst the effects of Botulinum toxin are present and for at least one month after they are over. Asking for your consent We want to involve you in all the decisions about your care and treatment. If you decide to go ahead with treatment, we ask for your consent and will ask you to sign a consent form. This confirms that you agree to have the procedure and understand what it involves. We will explain all the risks, benefits and alternatives before we ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment, please don t hesitate to speak with a senior member of staff again. 5

6 What happens during a Botulinum toxin treatment? This treatment is a day case procedure. You are awake during the procedure which normally takes around 20 minutes. You will be in the department for approximately one to two hours. You will be asked to provide a fresh urine sample on the day of your treatment so that it may be tested for an infection. If you do have an infection, we cannot proceed with the treatment until the infection has resolved. A local anaesthetic gel (Instillagel ) will be applied to the urethra and a special flexible bladder telescope (fibre-optic cystoscope) passed into the bladder. The bladder muscle will then be injected with 100 to 300 units of Botulinum toxin type A (BOTOX ) requiring 20 to 30 small injections to the bladder wall. What should I expect after Botulinum toxin treatment? You will routinely receive a short course of antibiotics as protection against infection. It is common for your urine to have a small amount of blood staining after this procedure. This normally clears within 48 hours. Recovery after Botulinum toxin treatment is short and most people continue with their normal routines the following day. One week after the injections you will receive a telephone call from one of the Uro-Neurology team to check on your progress and to help with any problems if they arise. Two weeks after the injections you may need to come back to the hospital to see a member of the Uro-Neurology team. We will check on your progress with the treatment and deal with any medical problems that may have come about as a result of you having had Botulinum toxin treatment. You will also be asked to empty your bladder whilst in the department and an ultrasound scan of your bladder will be performed to check if you are emptying completely. If you are not emptying completely we will advise you on how often you should perform clean intermittent catheterisation. This will be the final follow up visit. You should inform us when you feel the treatment is wearing off. At that stage you will be offered repeat injections, if appropriate.if you are taking 6

7 any tablets for overactive bladder symptoms, you should stop these when the Botox effect begins (normally within two weeks). Where can I get more information? BBC article on Botox 1 : NHS article on Botox 2 : References 1. Bladder Botox to treat incontinence, BBC NEWS HEALTH, September Available from: < [5 February 2015]. 2. Botox eases urinary incontinence, NHS CHOICES, March Available from: < [5 February 2015]. Contact details Thank you for taking the time to read this information. If you have any questions or concerns now or at any time about it, your safety or your rights, please contact us on the telephone number below: For the Nursing team: Tel: For secretaries: Tel: Fax:

8 Continence Team, Department of Uro-Neurology Square, London WC1N 3BG 33 Queen Main Switchboard (There is no additional service charge for using an 0845 number. The cost is determined by your phone company s access charge) / Hospital internet site 8

9 Space for Notes First published: November 2015 Date last reviewed: Nov 2015 Date next review due: Nov 2017 Leaflet code: UCLH/NHNN/URON/BOTOXFOR BLAD/1 University College London Hospitals NHS Foundation Trust 9

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