Researchers exploring hidden reasons women with MS struggle each month

Northumbria University researchers are calling on women to support a new study, which could find out exactly why periods can make multiple sclerosis (MS) symptoms worse.  

Over 150,000 people in the UK live with MS, with around three times as many women than men diagnosed with the condition. Symptoms are unpredictable and, in the days leading up to and during a period, those living with MS can experience more intense challenges with the condition. This can include debilitating issues with balance, muscle weakness, fatigue, and depression.

Eve Cockerham, 28, from Wakefield was diagnosed with MS in October 2022. Her eyesight was affected during her first relapse and she lives with bladder and balance problems. Despite being on a disease modifying treatment, her symptoms get worse when she has a period. She said: “After my MS diagnosis, every month I started getting intense pain in my right leg, especially towards the end of the day when I was tired. It wouldn’t go away. I was advised to try gabapentin, but the painkillers didn’t help and just made me drowsy. Now, all I can really use is a hot water bottle. I was also referred to physiotherapy to strengthen my legs and help manage the pain.

“The leg pain really affects my sleep. I get restless legs and feet, which drives me insane. My fatigue is worse on my period, so I usually work from home. Some months, if it’s bad, I need multiple naps during the day and I’m asleep by 9pm.

“My work has been really understanding. But because of the pain and fatigue, I’ve had to cancel plans at times. When you stop and think about having MS for the rest of your life, it can feel draining. Painkillers don’t work for me, and for many women with MS, that’s a week of pain every single month. Finding something to reduce that wouldn’t just help physically - it would also remove the constant worry of knowing your period is coming.”

Claire Bruce, 48, lives in Cardiff and was diagnosed with relapsing MS in August 2024. She experiences fatigue, double vision and is impacted by heat. Her MS symptoms are worse around her period meaning she has to plan her time carefully. She explained: “I use a temperature-tracking ring which shows that my temperature rises at the same time my symptoms worsen. My vision deteriorates, fatigue is much worse, and I feel more flushed. For the first two or three days of my period I use a cold eye mask and try not to plan on these days.

“I plan each week more carefully now - especially around my cycle - making sure I don’t overload myself. I’ve spoken to work about starting my day from home if my vision is poor, even if it’s just for an hour or two. I’ve also been given a prism for my vision, though I haven’t needed to use it recently. My symptoms tend to resolve after I wake up, so giving myself extra time before commuting helps.

“What’s difficult is that you don’t just lose two or three days a month, you’re already thinking about it three to five days beforehand. That’s almost a quarter of your life dominated by planning, managing symptoms, and conserving energy. If there were better ways to manage this, it would mean not having to put your life on hold for a week every month.”

In MS, symptoms manifest in a variety of ways, depending on which part of the central nervous system is affected. The brain-muscle connection is especially important in MS because MS disrupts the communication pathways between the brain and the body. This can mean people experience a range of symptoms – from muscle weakness to difficulty walking. When they observed people without a health condition, a team from Northumbria University found that the brain can communicate much more easily when levels of oestrogen and progesterone are high. But these hormones naturally dip during menstruation. And researchers believe this could be causing some MS symptoms to worsen during this time. 

Now the researchers, led by Dr Paul Ansdell, Associate Professor in Exercise Physiology from Northumbria University, are looking for people with MS to take part in a first-of-its-kind project, funded by the MS Society. The data, collected in a mobile app, will show how symptoms change, and how severe they are throughout the menstrual cycle, to identify any pattern.

Tests carried out by the Northumbria research team will include monitoring signals the brain sends to muscles in the body, such as the hand, to see if there are any changes at different stages of the menstrual cycle. Gait sensors will also be used during walking tests to help detect any differences in pace, stance or distance between steps. They will recruit 30 female participants who are not taking a hormonal contraceptive, 30 who are, and 30 males to compare data across the three groups. 

Dr Emily Hume, Assistant Professor in Exercise Physiology and Rehabilitation, Dr Elisa Nédélec, Research Fellow in Clinical Neurophysiology and Dr Rosie Morris, Associate Professor in neurological physiotherapy, will work with Dr Ansdell on the study. They will be supported by Dr Alan Godfrey and Dr Conor Wall from the University’s School of Computer Science to complete the Northumbria team. Collaborators include Professor Mark Baker from the Newcastle Hospitals NHS Trust and Dr Kate Petheram from the Sunderland Hospitals NHS Trust, as well as researchers from Nottingham Trent, Brighton, Loughborough and Nottingham universities.

Dr Ansdell, from Northumbria University’s School of Sport, Exercise and Rehabilitation, said: “Insight from this project could lead to new strategies to improve quality of life and symptom management for people with MS. For example, drug, nutritional or lifestyle interventions could be recommended in different phases of the menstrual cycle to reduce worsening of symptoms.

“Our study has been co-designed with people living with MS. Their input will ensure that the findings are meaningful and relevant to those living with MS, and address an under-studied area of healthcare research. We’ve had over 70 people register an interest in taking part through our website so far, and we’re looking for as many as possible across the UK.” 

The study is now up and running. To register your interest in taking part in the study, visit: www.ms-menstrualcycle.co.uk

Caitlin Astbury, Senior Research Communications Manager at the MS Society, said: "Of the 150,000 people live with MS in the UK, around 70 per cent are women. And many people who menstruate say their symptoms often feel worse in the days leading up to, and during, their periods.

“We’re really proud to be funding this research, which aims to tell us more about the link between periods and MS. Ultimately, this could lead to better ways for people to manage their MS symptoms.”

For more information about research at Northumbria University visit northumbria.ac.uk/research