Bladder sclerotherapy

Sclerotherapy is a procedure used to treat various types of vascular malformations, such as lymphatic and venous malformations. Both types of malformation can occur within the bladder and other parts of the urinary system such as the urethra. This information sheet from Great Ormond Street Hospital (GOSH) explains about bladder sclerotherapy, why it might be suggested and what to expect when your child comes to GOSH for treatment.

The urinary system consists of the kidneys, ureters, bladder and urethra. The kidneys filter the blood to remove waste products and form urine. The urine flows from the kidneys down through the ureters to the bladder. During urination the bladder empties through the urethra to the outside (peeding).

Sclerotherapy is a way of trying to reduce the size of the veins or cysts within the bladder wall so that they are less likely to bleed. The procedure often needs to be repeated if all the areas cannot be treated at one time.

A lymphatic malformation is a collection of small cysts. The cysts have no useful purpose and can cause problems. The walls of the cysts are quite thin and contain little blood vessels. Occasionally, the blood vessels break, causing a clot to form inside the cyst or a small amount of bleeding from the cyst.

A venous malformation is a collection of extra veins that have no use and can cause problems. Instead of allowing blood to flow back to the heart as in normal veins, it collects inside the venous malformation, making the veins stretch. The veins can be fragile and can cause small amounts of bleeding.

Both types of malformation can cause blood to appear in the urine if they affect the lining of the bladder or urethra. This is usually painless. Small amounts of blood may not cause any problems, but prolonged or excessive bleeding can lead to anaemia (low red blood cell count) and will need treating. Sometimes the presence of blood clots in the bladder can cause painful bladder spasms.

If the doctors suspect that your child has a bladder malformation, they will usually do an MRI or ultrasound scan of your child’s pelvis to assess the presence and extent of any malformation. Although the imaging scans give a good overall picture of your child’s pelvis, the doctors usually need to carry out a cystoscopy to look directly into the bladder to look at the malformation more closely and identify any potential areas of bleeding or inflammation.

A cystoscopy is a test that allows doctors to look inside your child’s bladder using a telescope. This is a very narrow tube containing a small camera and light which is inserted into the urethra and fed upwards to the bladder. Cystoscopy is carried out while your child is under a general anaesthetic and lasts about 30 minutes. A cystoscopy allows the doctors to find out what is causing your child’s problems without carrying out a larger operation. They can also take a biopsy (small piece of tissue) during the same procedure so it can be examined in our laboratories.

You will already have received information about how to prepare your child for the procedure in your admission letter. You may need to come to GOSH before the sclerotherapy so that your child can have a pre-admission assessment to check that they are well enough. This appointment is usually arranged for the day of the procedure and may involve taking blood samples, photographs and other tests.

On the day of the procedure, you will meet the doctor. They will explain the procedure in more detail, discuss any questions you may have and ask you to sign a consent form giving permission for your child to have the cystoscopy and sclerotherapy. If your child has any medical problems, please tell the doctors. An anaesthetist will visit to talk to you about your child’s anaesthetic.

Bladder cystoscopy and sclerotherapy is carried out while your child is under a general anaesthetic. The procedure is usually performed by a urology doctor and a radiologist. It is important that your child does not eat or drink anything for a few hours before the anaesthetic. This is called ‘fasting’ or ‘nil by mouth’. Fasting reduces the risk of stomach contents entering the lungs during and after the procedure.

You will be informed the night before the procedure of the time that your child should be ‘nil by mouth’ – in other words, have nothing to eat or drink before the anaesthetic. Fasting times are provided in your admissions letter – in broad terms, this is six hours for food (including milk), four hours for breast feeding and two hours for clear fluids before the procedure.

It is equally important to keep giving your child food and drink until those times to ensure they remain well-hydrated and get adequate nutrition. This may involve waking your child in the night to give them a drink which we recommend.

Once your child is under general anaesthetic, the urologist will insert the cystoscope into your child’s urethra and pass it into your child’s bladder. They can now look at the inside of your child’s bladder, and also the tubes leading from it to the kidneys. If necessary, they will take a biopsy to confirm or rule out any diagnosis.

If the cystoscopy confirms that there is a malformation there that needs treating, the radiologist will insert a small needle through the cystoscope tube and into the affected areas of the bladder or urethra wall. They will inject a very small amount of medicine through the needle into the middle of the cyst or cluster of veins. This irritates and inflames the malformation for a short time and then causes it to scar and shrink so it is no longer fragile and prone to bleeding. Finally, the doctors remove the needle and the cystoscope.

Your child will be having the procedure under general anaesthetic. Every anaesthetic carries a risk but this is extremely small. There is a small risk of infection with a cystoscopy, but we will give your child antibiotics as a precaution. There is also a very small risk that the cystoscope could damage the inside of your child’s bladder. This is unlikely to occur because the doctors carrying out the cystoscopy are very experienced and will minimise the risk of this happening.

Sclerotherapy causes irritation of the bladder or urethral wall. Occasionally, there may be blood in your child’s urine for a day or two. Blood clots in the bladder can cause discomfort or spasm, which can make your child feel like they need to go to the toilet a lot. Rarely, sclerotherapy can cause scarring of the normal bladder or urethral wall and this may affect how easily your child can pass urine.

Sclerotherapy seems to be the best treatment option for bladder malformations as it carries much lower risks than open surgery. It does not cause any visible scarring and it usually keeps the malformation under control, although repeat procedures are often needed as sclerotherapy is a way of controlling the malformation but not a cure.

Very rarely, a combination of sclerotherapy and surgery might be suggested. Your doctor will explain the options for treatment suitable for your child.

Your child will return to the ward after they have recovered from the anaesthetic. Some children feel sick and vomit after a general anaesthetic. Your child may have a headache or sore throat or feel dizzy, but these side effects are usually short-lived and not severe. Your child can start eating and drinking as normal once they feel like it.

Your child may have a urethral catheter in place for a few hours after the procedure. This will let urine drain from the bladder until your child is ready to pee normally. It can also be used to ‘flush’ the bladder if required – this is often used to dislodge any blood clots that may have formed inside the bladder or urethra following the procedure.

You will be able to go home, once the doctors are happy that your child is recovering well, has had something to eat and drink and has passed urine. When you get home, you should encourage but not force your child to drink plenty of fluids. They may feel a stinging sensation when they pee but this will pass in a day or two. Try to avoid giving your child fruit juice as the acidity will make the stinging worse.

Their urine may have a pink tinge due to small amounts of blood for the first few days but this is usually temporary.

You should call GOSH if:

• Your child is in a lot of pain and pain relief does not seem to help
• Your child continues to feel stinging when passing urine
• Their urine continues to have a pink tinge or the amount of bleeding increases

The doctors will tell you if your child needs further sclerotherapy procedures and if so, when. Your child might need to have a routine outpatient appointment with a repeat of the imaging scans a few weeks afterwards before this decision is made. We will send you a letter with the planned date of the outpatient appointment or next treatment session.

Your child might need several sclerotherapy procedures over a few months to reduce the malformation. As sclerotherapy can cause swelling and inflammation, it is sometimes safer to carry out several smaller treatments limiting the effects each time. Sclerotherapy will not ‘cure’ the malformation but it should shrink it significantly. Occasionally children need to have further sclerotherapy as they get older.