Difference of sex development (DSD) is a term used to describe many different conditions where the development of the reproductive or sexual characteristics do not follow typical patterns.

People with DSD conditions may have:

  • Differences in how their external and internal genitalia may have formed
  • Variations in the hormones which are used for puberty and reproduction. This includes how their hormones are made or how their hormone signals are received.
  • Having a DSD condition may affect someone’s pubertal development, routes to parenthood, how they have sex and can also impact on their wider physical and emotional health.

These variations can be seen alone or in combination and are often due to differences in someone’s genetics (chromosomes and DNA).

The DSD service at UCH provides a multi-disciplinary service for adolescents and adults born with diverse sex development. It consists of experts in endocrinology, gynaecology, psychology, urology, specialist nursing, genetics, radiology and biochemistry.  

Some people with a DSD condition prefer the term Variations of Sex Characteristics (VSC), others have reclaimed the term ‘Intersex’. Some people prefer to identify with the name of the condition rather than broader terms.  

The team embraces sex and gender diversity in society. We have collaborated with UK service users for more than twenty years and take their points of view seriously. We work hard to ensure that the patient’s long-term health and wellbeing is at the heart of what we do and that the care that we provide is based on the best available evidence.

The service accepts patients who are moving on from their children’s clinic as well as those with initial presentation in adolescence and adulthood.

Please view our welcome pack for new patients: Complex Congenital Gynaecology and Differences of Sex Development.

Patient contact

Service management

Address

Differences of Sex Development service
2nd floor North Wing
250 Euston Road
NW1 2PG

Referral

Other referral information

To make a referral, please download and complete this form including as much information as possible regarding the patient’s clinical history and current symptoms. Please send the completed referral forms to uclh.pag.referrals@nhs.net.

If you have any questions about submitting a referral ahead of sending the referral form, please email uclh.pag.referrals@nhs.net

Referral address

UCH referrals centre
University College London Hospitals
Ground Floor North
250 Euston Road
London NW1 2PG 

At your first visit, you will meet with several members of the team. Therefore please allow plenty of time. We are proud of the reputation for patient-centred care that attracts visiting health professionals from the UK and abroad. However, your wellbeing is our first priority, so please do not hesitate to let us know if you do not wish anyone else to be present in your consultation. Your care will not be affected in any way.

We run open days and small groups for people with the Differences in Sex Development. You will have the chance to join other people for mutual and we hope useful exchanges, if you should wish to accept our invitation. These occasions also give us the chance to talk to you about new discoveries, clear up any worries you may have, or clarify what you may have read in the press or on the internet. Expert clinicians will be present to answer your queries.

We have developed a large number of information sheets about various conditions and treatments and these will be made available to you.

Many of our patients do not have significant physical health problems. The psychological aspects of the condition may affect them a lot more. Therefore your psychological care is integral to what we provide as a team. All first-time clinic attenders will meet the psychologist – this is part of our holistic approach to your care.

If you are unsure about how you feel about the diagnosis, you do not have to figure it all out by yourself. If you feel conflicted about talking to other people about your situation, we can support you to make your own decision. If you wish to have relationships but withdraw from opportunities, we can help you to take steps to overcome the avoidance. If a treatment feels like a bit of a dilemma and you are not sure about the tradeoff, we can help you to clarify your thoughts and feelings. If you have been struggling with distressing emotions, do make time to meet with us.

When you come and meet the team, the psychologist will provide you with her contact details, so that you can make a follow-up appointment as and when you wish to. Here is some information about Psychology follow-up appointments:

  • Appointments are available on Monday 10.30 am to 6.30 pm (last appointment 5.30pm)
  • An appointment may last up to 50 minutes
  • You may be offered one or several meetings initially
  • You may attend by yourself or with a family member or partner
  • You come to the same place where you see the doctors and nurse specialist. However, you can also choose to have some or all of your appointments over the telephone.

Support groups - Meeting resourceful people in support groups can be a great way to witness how people can live well with very different choices. You may wish to consider getting in touch with the relevant groups relevant for information and support.

DSD conditions that the UCLH service sees (this list is not exhaustive):

  • 46XY DSD conditions including:
    • Androgen insensitivity syndrome
    • 5alpha reductase deficiency
    • 17β-Hydroxysteroid dehydrogenase III deficiency
    • Leydig cell hypoplasia
    • SF-1(NR5A1) related 46XY DSD

Consultants

Other gynaecology services