Overview
It is important that careful consideration is given to how to support a young person through the changes of puberty into adulthood and that their sexual health needs are addressed.
Most young people with Down syndrome manage extremely well with the changes in adolescence. There are many resources available for young people with learning disabilities to help them to understand the changes that occur in puberty and information about sexual health and relationships. It is also an important part of the school curriculum.
The majority of girls will be able to manage menstruation (which may occur early) independently. Dysmenorrhoea and menorrhagia should be managed as for any woman ensuring that thyroid function has been checked.
Approximately 70% of women with Down syndrome are fertile and there is lower fertility in men. Pregnancies have been reported and therefore it is important that both men and women have access to advice abut contraception and sexual health unless pregnancy is planned. Contraception choices may be limited due to other health issues e.g. congenital heart disease.
The advantages and difficulties of undertaking cervical screening need to be considered for each woman. The chance of developing cervical cancer is very low in women who are not sexually active but it should be taken into account that a woman with a learning disability my be less likely to report early symptoms such as bleeding. HPV vaccine should be offered even though the woman may not be sexually active at that particular time as it is difficult to predict future sexual behavior.
Testicular cancer is one of the few types of solid tumour that occurs more commonly in Down syndrome and so testicular self-examination should be discussed or the need for alternative monitoring should be identified.
Women with Down syndrome on average reach menopause earlier at approximately 44 years. Symptoms suggestive of the menopause may also be due to other conditions e.g. hypothyroidism.
Updated January 2021 Dr Liz Marder, Consultant Paediatrician
Presentations at DSMIG Meetings
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Additional Resources
Down’s Syndrome Association. last updated 2018
All About Us. Family Planning Association.
A DVD-ROM for people with learning disabilities on growing up and personal and sexual relationships.
Learning disabilities, sex and the law: a practical guide. Fanstone C, Andrews S.
Explains the legislation around sexual activity and people with learning disabilities, covering subjects such as capacity to consent, intimate care, record keeping and contraception.
Understanding intellectual disability and health
Mencap has information regarding sexual health and relationships