Thousands of women in the UK with diabetes are currently experiencing menopause. But at the moment, the advice and support for managing the condition through the menopause just isn’t there.
We don’t know enough about the emotional or social effects of menopause, and what would help women to manage their diabetes when dealing with additional hormonal changes.
Navigating menopause while living with diabetes has been identified as a critical priority by our Diabetes Research Steering Groups.
To paint a clearer picture of the urgent unanswered questions, we invited experts in women’s health and diabetes, representatives from charities and funding bodies, and women with diabetes who’ve experienced menopause to a workshop. Their mission was to pinpoint exactly where these gaps in research and care lie. And to make suggestions on how to tackle them.
To set the scene, we heard stories from several different perspectives.
What's the real impact of menopause on women with diabetes?
First up were Dawn and Alex from Menopausal Mithers, an online peer support platform for women with diabetes who are going through menopause. They shared testimonies from their global network, who are struggling together from a lack of support, with many feeling "abandoned, alone, and lost”.
They explained that there’s a big overlap in symptoms of menopause and diabetes, and they’ve experienced a lack of understanding from healthcare professionals around this, with some women with diabetes having to “beg for HRT” (hormone replacement therapy) just to cope with their symptoms.
Lastly, they highlighted the devastating impact that diabetes distress can have on women as they go through menopause, adding to the already high risk of anxiety and depression.
We’re incredibly grateful to Dawn and Alex for their courage and honesty, sharing real stories, and bringing their lived experience to life, emphasising how desperately we need research to address the issues women with diabetes face during menopause.
The research landscape right now
Next, we heard from Dr Rita Forde, a scientist from King’s College London, who walked us through some current research in the field. She explained that while there are scientists working on menopause research and life with diabetes, there’s very little research that covers both.
There are huge gaps in our knowledge of both the biological processes of menopause and the physical, psychological, and social impact it can have when diabetes is thrown into the mix. Dr Forde described the gap as a “Grand Canyon”.
Dr Forde also spoke about the challenges faced by healthcare professionals who care for women with diabetes. Menopause isn’t mentioned in any NICE guidelines about diabetes, and vice versa, diabetes isn’t mentioned in menopause guidelines. This neatly set the stage for the next speaker.
A GP's perspective
Dr Eleanor Barry is a GP who specialises in menopause and type 2 diabetes. She told us about some of the women she cares for, and the difficulties she encounters on a daily basis.
There are lots of ways menopause symptoms can be managed, such as HRT, antidepressants, and even exercise and nutrition. But without helpful guidelines, it’s really hard to figure out the best treatments and to make tailored recommendations. And even then, treatments might not work for everyone. It’s also difficult to follow people up, and continuity of care is a big problem.
Listening to women
Lastly, we heard from Professor Vivien Coates from Ulster University and Neelam Heera-Shergill from Cysters, a charity which combats some of the misconceptions around reproductive health, who both work to ensure more women’s voices are heard in research.
Prof Coates has been analysing answers from a questionnaire, which asked women with diabetes about their experiences of menopause. Three main themes came out of the responses:
- A lack of knowledge about menopause generally
- The additional challenges of living with diabetes
- How to find channels to get help and support
Her findings have fed into a research project we’ve just started funding, where Prof Coates will study the experiences of women in more depth to shed further light on these themes, with the hope of improving future care.
Neelam is passionate about activism and supporting people from marginalised backgrounds, making sure that research reflects them, their needs, and their experiences. She explained how research needs to consider factors like race, class, gender, ability, faith, and more.
There are many barriers that get in the way of true representation in research, and Neelam is making strides in breaking them down.
What now?
With plenty of food for thought from the speakers, the workshop then turned to pinpointing the most important research questions that need answering. After establishing what we do and don’t know about menopause and diabetes, six themes started to emerge:
- Biological processes
- Mental health
- Technology and treatments
- Healthcare professional education
- Inequalities
- Care and how it’s delivered
This workshop was the first step in getting vital research off the ground. Next, we’ll take these themes and refine them into specific recommendations for researchers, and call on scientists to come up with innovative ideas to address them.
We’ll also use insights from the workshop to develop better resources for healthcare professionals, including information prescriptions, giving them the tools they need to give the best care and advice to women with diabetes going through menopause.
We’re so thankful to everyone who took part, sharing their experiences and knowledge, and contributing to thoughtful discussions. While there’s a long way to go, we’re confident that the outcomes from this workshop will trigger vital research, helping more women with diabetes to get the support they need as they navigate the challenges of menopause.
Trudi Evans lives with type 1 diabetes and said:
“Having experienced how much the menopause can add to the challenges of living with type 1 diabetes, I was privileged to attend this workshop.
“We heard that while some important research has been undertaken, huge gaps remain and perhaps a more coordinated approach might be more productive.
“It was rewarding, informative, and enjoyable to spend a day collaborating with an incredible group of people, who brought such a broad variety of perspectives to help frame future research. I hope a better understanding of this double challenge experienced by many women will lead to change sooner rather than later. It was also a great opportunity to meet and share experiences with some lovely inspirational women.”
Dr Steven Parks, Research Manager for the DRSGs, said:
“We’ve known for a long time that we don’t understand enough about the impact that menopause can have on women living with diabetes. This workshop was an important first step to inform our work in tackling this urgent issue with new research, and grounding it in the lived experience of women. We’re incredibly grateful to everyone who attended for their contributions and look forward to making an impact in this area.”
