New project to explore how women with MS experience menopause

A new study being funded by the National Multiple Sclerosis Society (NMSS) will seek to better understand how women with multiple sclerosis (MS) navigate menopause, addressing where there might be gaps and needs for better care.

The study will use information from patients and healthcare providers and be conducted by researchers at UVA Health in Virginia in partnership with the nonprofit Accelerated Cure Project for Multiple Sclerosis (ACP).

‘Menopause is a significant life transition for any woman. For women with MS, the picture is even more complex, yet it’s been largely invisible in the research,’ Stephanie Buxhoeveden, ACP’s chief scientific officer, said in a press release from the nonprofit.

MS disproportionately affects women, but relatively little research has explored how the disease intersects with health issues such as menopause. Through its Advancing Women’s Health initiative, the NMSS is investing $2.3 million in projects to help address these gaps.

Dawn Morgan, an iConquerMS member and MS patient, helped conduct a scoping review of the scientific literature to see what’s known about how women with MS experience menopause.

The results were fascinating and showed menopause is associated with less relapse activity, but more functional decline. Yet, of the 19 studies reviewed, not one engaged with the women themselves to understand their experiences.

‘This study began with a question I raised as a patient advocate and iConquerMS member and it became a research priority because the gap was undeniable,’ Morgan said. ‘For too long, women with MS have navigated menopause without evidence-based guidance or clinical support. Seeing patient-powered advocacy translate into funded science is exactly why this work matters.’

As part of the study, women with MS who are undergoing menopause, along with their healthcare providers, will be surveyed and interviewed. Its goal is to identify places where current care isn’t adequate, then create new resources — including educational materials for patients and guidance for providers — to help close those gaps and improve care.

‘We have limited data to guide women with MS through the menopausal transition, even though many experience meaningful changes in symptoms and quality of life. Bringing together the perspectives of women with MS and healthcare providers is critical to understanding where opportunities exist to improve support and care during this stage,’ said Alexandra Simpson, MD, an assistant professor of neurology at UVA Health, who is leading the study.

Falling oestrogen levels, heat sensitivity, inflammation and disrupted sleep are classic menopause signs that can worsen MS symptoms, and common symptoms such as fatigue, cognitive fog and bladder issues overlap. This can make it difficult to distinguish between the two.

Hormone replacement treatment (HRT) can be safely used by women with MS to manage symptoms with some studies suggesting it can help stabilise some and help improve cognitive function.

Research indicates that sex hormones, particularly oestrogen, may be neuroprotective, and HRT can improve quality of life and bone health in women with MS.

Understand more about Menopause and MS with our helpful and informative Choices booklet