A number of genetic conditions can affect how the reproductive and sex organs develop. The conditions are numerous and different. Taken together, they are more common than most people think. The conditions used to be referred to as ‘intersex’. More recently they have become known as differences, divergences or disorders of sex development (DSD) amongst medical doctors and scientists. Most affected people however do not identify with these terms.
The clinic at UCH is the world’s first to provide a multi-disciplinary service for adolescents and adults born with diverse sex development. It consists of experts in endocrinology, psychology, gynaecology, urology, specialist nursing, genetics, radiology and biochemistry. The team embraces sex and gender diversity in society. We have collaborated with UK service users for almost twenty years and take their points of views 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.
The most common conditions treated are:
- Congenital adrenal hyperplasia
- Complete and partial androgen insensitivity syndrome
- Swyer’s syndrome
- Rokitansky syndrome
- Other variations to the genital development
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 for people with the same condition. 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.
Experience tells us that the patients and families who engage with Psychology do not struggle any more than those who avoid it. Therefore try not to attach any special meaning to meeting with the psychologist or allow that to be a barrier to learning how to manage the situation effectively. Trust in our team recommendation and make the most of the opportunity. Of course we understand that personal circumstances can make attendance difficult at a particular time point. We respect your readiness and timing and will work around you.
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 9am to 5pm (last appointment 4pm)
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.