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Re: Management of menstruation in severe learning disability

Dear Editor,

The recent review of suppression of menstruation by Albanese and Hopper1 in adolescents with severe learning difficulties is the first review of its type published in the UK. We have recently looked at the issues surrounding puberty and management of menstruation in a group of young women with severe learning difficulties and epilepsy who are living at a residential school in Cheshire.

In our cohort there were 21 young women whose ages ranged from 12-20 years. Their age equivalent functional level on Vineland Adaptive and Behavioural Scales was 1-2 years indicating a high level of supportive care. Most of the individuals followed a normal pubertal developmental path. Two had worsening of their seizure frequency around the time of menstruation. One third of the young women had no reported problems with menstruation and did not require any medical management of their periods. In seven girls dysmenorrhoea and other menstrual disturbances such as menorrhagia were well managed with combinations of paracetamol and mefenamic acid. Eight of the young women had taken hormonal treatments for menstruation at some point. The combined oral contraceptive pill (OCP) was used cyclically in seven of the young women. This allowed regulation of their menstrual cycles and often reduction in menstrual flow and associated dysmenorrhoea. There were no obvious associated benefits surrounding seizure frequency. Only three of the young women remained on the oral contraceptive pill. It was stopped in the remainder for reasons including excessive weight gain, concerns regarding osteoporosis and other unrelated medical problems. One of the young women still taking the OCP required further treatment with paracetamol and mefenamic acid around the time of menstruation to further modify symptoms. Those in whom the OCP was stopped now have their symptoms managed by combinations of paracetamol and mefenamic acid. In our practice Depo-Provera is not currently used in these adolescents because of the concern over decreased acquisition of bone mineral density in conjunction with the use of anticonvulsants. Norethisterone is sometimes used to postpone menstruation if requested by the families or carers. Most of the carers and families did not have specific concerns relating to menstrual management documented in the medical notes however it is well recognised that many families and particularly mothers worry how their daughters with severe learning difficulties will manage menstruation. With appropriate support and advice concerns appear to dissipate through time. The centre is devising an advice leaflet for families’ entitled ‘Practical management of periods’. Two of the families had considered more definitive surgical management options in the past however they are not currently pursuing this line of treatment

We agree there is little evidence to guide clinicians practice in this area and welcome your review in the first instance to stimulate debate and encourage further studies.

Mel McMahon, Neurodisability SpR
Margaret Huyton, Associate Specialist
Dan Hindley, Consultant Paediatrician

David Lewis Centre
Mill Lane
Warford
Alderley Edge
Cheshire
SK9 7UD

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