Deinfibulation

• You might want to have the scar tissue that formed with FGC/M opened up because it’s your choice to.
• To improve urine flow and reduce dribbling or discomfort.
• To make periods more manageable and less painful by allowing better flow of menstrual blood.
• To help you be able to have vaginal sex.
• To make future medical vaginal examinations easier. Vaginal examinations can help with pregnancy, childbirth, fertility treatment, cervical screening (smear tests), and can help if someone is having problems with vaginal bleeding or discharge.

Some people prefer to be awake during the procedure so that they can be aware of what is happening. This would mean having it with local anaesthetic. Using local anaesthetic means an injection of medicine that numbs. This means you won't feel pain but can still feel touch. You might feel a sharp sensation with the injections which are usually given to a few areas. You can find more information about local anaesthetics on the NHS website.

Some people want to be asleep with a general anaesthetic so that they don’t feel or remember the procedure. A general anaesthetic is where you're given medicine so that you're asleep (unconscious) and do not feel anything during an operation or procedure. You can find more information about general anaesthetics on the NHS website.

If there is a lot of scar tissue your doctor may recommend a general anaesthetic for better comfort and safety.

You can talk to the team about which option feels right for you.

We’ll help position you on the procedure bed- either in the clinic if you want to be awake with local anaesthetic, or in the surgical theatre room if you prefer to be asleep with a general anaesthetic.

Your legs will be placed in special stirrups to allow your legs to be supported open and we will clean your labia with a disinfecting solution to help reduce the risk of infection. Local anaesthetic is injected – this also happens when someone is having a general anaesthetic to help reduce discomfort when they are woken up after the procedure.

The doctor will carefully open the scar tissue to uncover the urethra and vaginal openings. Dissolvable sutures (surgical stitches) will be used to help the area heal open and reduce bleeding. Using dissolvable sutures means that the stitches don’t need to be removed (they disappear by themselves as the suture is absorbed as the area heals).

If you are awake having the procedure with local anaesthetic we will make sure that you feel comfortable on the bed and won’t start until you feel ready.

If you have had a general anaesthetic then you’ll wake up in a recovery area with the recovery nurses looking after you.

It’s normal to feel sleepy or slightly sore, and you’ll be given pain relief if needed. Most people are able to go home a few hours after waking up from the general anaesthetic as long as they feel well, can pass urine and are comfortable.

Passing urine may feel a little different or uncomfortable the first few times.

Taking care of yourself after the procedure is important. Here are some practical steps that you can take to support your recovery.

• Keep the area clean by washing daily. Use warm water with a mild unscented soap. Gently pat the area dry with a clean towel – don't rub. If possible let the area air-dry for a bit.
• After you have washed gently check that your labia are separate to reduce the chance of them joining back together (make sure you have washed your hands before doing his).
• Showers are better than baths in the first few weeks but short salty baths (for 10 minutes) can be soothing and help with healing.
• You may notice some swelling after the procedure – this tends to improve after a week.
• You can use a cold compress (like a wrapped ice pack) during the first 48 hours to reduce swelling and discomfort. Always place a clean cloth or thin pad between your skin and the compress.
• Take simple painkillers as needed (eg. Paracetamol, ibuprofen – your doctor will let you know what options are suitable for you).
• You should avoid sex for around 4 weeks until after the procedure but your doctor will advise after the procedure.

We understand that having this procedure can affect you emotionally and physically. You can email our team (uclh.pag.queries@nhs.net) if you would like to speak with our psychologist about the emotional impact, or if you are not sure about how you are healing.

If you are worried about increasing pain or swelling these can be signs of infection or a small collection of blood (called a haematoma). You should request a GP appointment, or attend your local A&E. Please email our team if you have needed to do this (uclh.pag.queries@nhs.net).

Most people recover well from deinfibulation but all surgical procedures and anesthetics carry some risks (possible problems or side effects). Your doctor will discuss these with you in clinic. It’s important to understand what could go wrong so that you can be prepared and know when to ask for help.

Risks of this procedure include injury to nearby structures which can affect their function. There is a small risk of injury to the urethra, vagina, or clitoris during the procedure. If this were to happen and was recognised at the time, it would be repaired during the operation. Occasionally, we may need to perform a procedure to look inside the bladder (cystoscopy) or vagina (vaginoscopy) to check for or repair any injury.

Pain or discomfort. You may experience pain or stinging when passing urine after the operation, which usually settles within a few days. Some people may have ongoing discomfort or pain in the area, which can take longer to improve.

There will be some scarring after the procedure. This is usually minor, but in some cases it may cause changes in the appearance of the area or lead to concerns about how the vulva looks. In rare cases, the tissue can begin to close again (re-fuse), and further surgery may be needed.

Some light bleeding or spotting is common after the procedure. In rare cases, heavier bleeding can occur, and a blood transfusion may be needed. Occasionally, a haematoma (a collection of blood under the skin) can develop, which may cause swelling, bruising, and tenderness. Most haematomas resolve on their own, but sometimes they may need to be drained if large or painful.

There is a risk of infection in the area where the scar was opened. This may cause redness, swelling, increasing pain and can affect healing and scarring. In most cases, infection can be treated with a short course of antibiotics.

As with all operations, there is a risk of developing a blood clot in the legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE). To reduce this risk, you will be given compression stockings to wear, and you may be offered injections to thin your blood while you are in hospital.

Emotional impact. For some people, having this procedure can bring up distressing memories or feelings related to past trauma. This is completely understandable. Our team will talk through with you about how best to support you with the procedure, and you can speak with our psychologist to help with this.

You and your doctor will talk together about the benefits and risks of having deinfibulation as well as the option of not having it.

Our team want to make sure that you have all the information to make the best decision for you. They can help you decide if this operation is the right choice for you, and if so when would be the right time for you to have this operation.

Our team’s psychologist can help support you with thinking about this choice and what feels right for you.

In clinic your doctor will discuss the option of this surgery with you. They will talk through the procedure, what to expect on the day, the recovery from the procedure as well as going through the surgical risks.

You will need to sign a consent form for the surgery if you wish to go ahead with the deinfibulation procedure.

A short while before the surgery you will need to come to hospital for a pre-operative assessment to have some blood tests and other routine investigations.

If you are having deinfibulation under general anaesthetic, on the day of the procedure, you will be seen by the surgical and anaesthetic teams on the ward before the operation. You will have the opportunity to ask any questions you may have since your last clinic appointment.

In clinic your doctor will discuss the option of this surgery with you. They will talk through the procedure, what to expect on the day, the recovery from the procedure as well as going through the surgical risks.

You will need to sign a consent form for the surgery if you wish to go ahead with the deinfibulation procedure.

A short while before the surgery you will need to come to hospital for a pre-operative assessment to have some blood tests and other routine investigations.

If you are having deinfibulation under general anaesthetic, on the day of the procedure, you will be seen by the surgical and anaesthetic teams on the ward before the operation. You will have the opportunity to ask any questions you may have since your last clinic appointment.

• UCLH children and young people’s FGC/M clinic
• NHS Choices: Female genital mutilation (FGM)
• NHS Digital: Patients – your FGM information and how we use it
• The National FGM Centre – is hosted by Barnardo's to achieve a system change in the provision of services for children and families affected by Female Genital Mutilation (FGM)
• The Vavengers – a UK-based charity committed to ending Female Genital Mutilation/Cutting (FGM/C) and all other forms of Violence Against Women and Girls (VAWG).

If you have any further questions, or concerns about the medication you can contact our team by email (uclh.pag.queries@nhs.net)

The UCLH team are very grateful for the input of the National FGM Centre and The Vavengers to help us produce this information.