Other members of the team include:

Fellow in paediatric and adolescent gynaecology. Our team has a new fellow every year. They are a gynaecology doctor developing their specialty work in paediatric and adolescent gynaecology.

Emma Palluotto is also a psychologist for the CCG and DSD team. As part of your care, you may meet with Emma or other members of the psychology team, including assistant psychologists.

Anthony Noah is a urologist specializing in adolescent and reconstructive urology. Anthony sees people born with structural differences in their bladder (including cloacal anomalies and bladder exstrophy), and differences in sex development conditions that affect the development of the external genitalia.

Margaret Hall-Craggs. Professor Hall-Craggs specialises in CCG and DSD MRI scans. We will ask Professor Hall-Craggs to review any previous MRI scans you have had with your local team.

Nora Imamouine is our team’s administrator. Nora manages your appointments and arranges transfer of information (and any scans) from your referring team. They support with your clinical letters and coordinating your follow up plans.

When we receive your referral we will ask your referring team to send your previous test results to us. This includes blood test results and the images of any MRI scans you might have already had; this is so that they are available for your first appointment at UCLH.

Depending on your condition you may meet a different combination of team members. You should therefore allow a few hours for your first appointment.

Often adolescents and young people will come to their appointments with family members. It is important to have their support with you, but it is also important to have time on your own with the medical team. This is to allow you a private and confidential space to talk with the team as an individual.

You may be offered an examination in clinic. This could be of your chest, to assess pubertal development. If there are potential differences with how your vulva or vagina developed, an examination can help understand this, how it could affect you, and what your management options are. We will explain why examination would be helpful and what this would involve. It’s always your choice whether or not you want to be examined.

You may have previously had difficult experiences of being examined before, and this is something that our psychology team can help think about with you.

The team may recommend blood tests after your appointment. Blood tests can help understand what condition someone is affected by assessing their hormones and genetics.

Blood tests can also be used help understand someone’s fertility options. Depending on your age you will either have bloods taken in paediatric outpatients (next door to our clinic), or if you are an adult you will be directed to ‘main phlebotomy’ (the blood test clinic) which is in the main UCLH building.

Sometimes people can feel worried about having a blood test. Please speak to one of the team if you have these worries or get in touch with us beforehand (uclh.pag.queries@nhs.net).

If your doctor has prescribed you some medicine you can collect this from the outpatient pharmacy in the main UCLH building (see map at the end of this pack).

You will receive a letter from our team after the appointment summarising your appointment and the on-going management plan.

You may have been diagnosed when you were very young or only just started to have some investigations.

Either way we’d recommend thinking about the questions below to help you get the most out of your first appointment.

Do I understand why I’ve been referred to UCLH? If I have been previously diagnosed

• Do I understand my condition?
• Do I understand how my condition affects me?
• Do I know the name of my condition?
• Have I had any previous treatment for this condition?

If I’m already on medications for this condition:

• Do I understand what they are (name and dose) and why I take them?
• Am I able to manage my medication myself or do I need help with this?

Do I know how my condition could affect me becoming a parent in the future?

• If so, do I know what the options to help are if I want to become a parent?

What do I understand about my overall health?

• Do I have other conditions that affect me?
• How do I stay active and eat healthily?
• Do I know where and how to access reliable information about sexual health?

Our psychologists work together with you to help you to find ways to manage your condition. This can help to reduce the impact your condition may be having on your life.

This can help you with life goals including:

• feeling better about yourself
• reducing the worry about sharing information about your condition with other people
• starting and having future relationships
• enjoying intimacy
• thinking about how you could become a parent.

Our psychologists work closely with the rest of the team, particularly when difficult and complicated choices are being considered. This includes surgical options that could affect someone’s future options to become a parent, or surgery to help improve how someone feels about themselves (e.g. clitoral surgery).

Our psychology team can offer both short-term individual therapy and support group sessions. The support group runs online sessions fortnightly, every Tuesday for six sessions, for patients receiving care under the CCG/DSD service.

The aims of the support group are:

• to jointly create a safe space to talk and think about your experiences of living with a CCG/DSD condition.
• to provide an opportunity to meet with other people who are seen in the service who may or may not have similar experiences to your own.
• to share relevant information and resources.

We understand that some people may find it hard to talk about their experiences in a group context. Group spaces can help for many reasons including:

• groups can act as a support network
• it can be a relief to hear that you are not alone
• groups can help build resilience
• by empathising with your group members, you can be kinder and acknowledge the progress you’ve made and build self-compassio.n

Our psychologists help combine everyone's knowledge and expertise during discussions. The team try to tailor the group content according to everyone in the group's needs and interests.

MRI stands for magnetic resonance imaging. It is a type of scan which uses magnets (rather than X-rays or ultrasound) to generate pictures of the inside of the body. You can find out more information about MRI scans via this link.

We may arrange for an ultrasound scan the same day as your appointment. This scan will be performed by one of the specialist gynaecology doctors or sonographers.

An ultrasound scan uses sound waves to look inside the body. The sound waves are of a much higher frequency than we can hear - but the scan machine can interpret how the sound waves bounce back as images. The scan is performed on your lower tummy with jelly – you need to have a full bladder when you arrive for the scan, as this makes it easier to see the pelvis.

Sometimes we recommend an internal scan, where an ultrasound probe (cleaned and covered with a single use probe cover), is inserted into the vagina or rectum, in order to give us better views. Not all our patients are able to have an internal scan, either because they do not have a vagina or rectum or if they have never been sexually active. You will never be expected to have an internal scan if you do not want this.

Our clinic is currently based in Clinic 3, gynaecology outpatients.

This is on the lower ground floor (one floor down from where you come in) in the Elizabeth Garrett Anderson Wing.

(This is not a complete list)

• 46XY DSD conditions including:
  • androgen insensitivity syndrome
  • 5alpha reductase deficiency
  • 17β-Hydroxysteroid dehydrogenase III deficiency
  • Leydig cell hypoplasia
  • SF-1(NR5A1) related 46XY DSD
• congenital adrenal hyperplasia (CAH)
• gonadal dysgenesis (complete gonadal dysgenesis often referred to as Swyer syndrome)
• gynaecology issues related to cloacal anomalies
• gynaecology issues related to bladder exstrophy, epispadias, urogenital sinus anomalies
• MRKH Mayer-Rokitansky-Kuster-Hauser syndrome (congenital uterovaginal agenesis)
• Obstructive uterovaginal variations, including:
  • transverse vaginal septum
  • obstructed hemi-vagina
  • unicornuate uterus with functional rudimentary uterine horn
• ovotestis
• premature ovarian insufficiency (POI)
• Turner syndrome (TS)

(in adolescence – most adults with TS are looked after Dr Clarke in a dedicated TS service).

Louise Perry: Clinical Nurse Specialist

Email: uclh.pag.queries@nhs.net