“What I go through is not normal”: the study giving a voice to people with Severe Period Pain

Researchers investigating severe period pain are inviting new participants to join their study.

The SPPINN study (Severe Period Pain Is Not Normal), based at Cardiff University, is actively looking to engage younger people, as well as parents, teachers, school nurses, community pharmacists, and members of the LGBTQ+ community.

Their goal is to explore the impact and awareness of severe period pain across different communities and age groups.

One participant, Emily Handstock, 25, from Aberdare, has battled severe period pain since her teenage years.

Emily said: “What I go through is not normal, but it is normalised. Throughout my teenage years I was told ‘You're just experiencing a painful period. You're fine. Just have some Ibuprofen and suck it up.’

“I've been admitted to hospital, I've been given morphine and that's barely touched the sides.”

She continued: “I don't think there is enough awareness.”

Severe period pain (SPP) makes it difficult to focus, move, and sleep, according to the NHS, and can mean missing school or work and being unable to socialise.

It is experienced by up to 29% of girls, women, and people assigned female at birth, according to an article published in BMC Women’s Health. 

Emily is a participant in the Severe Period Pain Is Not Normal study which received more than £269,000 in Health and Care Research Wales project award funding and is led by Cardiff University’s Professor Jacky Boivin and Dr Robyn Jackowich.

Dr Jackowich said: “The Wales Severe Period Pain Is Not Normal, or SPPINN study, aims to understand and improve how severe period pain is identified and managed both across the reproductive life course and across Wales.

“We'll be doing a combination of interviews as well as looking at healthcare data and education data across Wales so that together this information can help create recommendations for what needs to happen next to improve education and care for severe period pain.”

“Wales really stands to be a leader”

The study is now in its second phase, with researchers interviewing up to 75 people, including people aged between 13 and 51 with SPP, their family and carers, healthcare providers and educators.

In her interview, Emily described her experiences from when she first got her period to the present day, discussing the pain and its day-to-day impact.

She suggested an important step is improving education on period pain and said: “I don't know any of my friends who have had a stereotypical normal period. It's just so outdated.”

Discussions with patients about treatment could also be improved with clearer explanations. Emily continued: “I experienced people just trying to push me onto the pill. I didn't accept that.”

Contraceptive pills can help with pain management and Emily added: “I think if that had been explained to me, I'd have been more susceptible to going on it.”

Co-investigators on the study include women’s health advocates, Fair Treatment for the Women of Wales (FTWW).

FTWW’s 2017 report, ‘Making the Case for Better Endometriosis Treatment in Wales’, led to a Welsh Government task and finish group and the subsequent introduction of Wales’ specialist endometriosis nurses.

The Welsh Government has a continued dedication to Women’s Health - producing the Period Dignity Action Plan in 2021, the Quality Statement for Women’s and Girl’s health in July 2022 and through the ongoing development of the Women’s Health Plan, which aims to improve health services and address inherent inequalities – with more research playing a key part.

Upon completion, the SPPINN study will produce recommendations to improve education and care around the condition. It could, for example, lead to new modules for teachers or healthcare providers or highlight the important of tailored treatment.

Dr Jackowich said: “I think it's a really exciting and important time in Women's Health research in Wales. There's a lot of growing awareness, highlighting that there is this gap and a need to address it. I think Wales really stands to be a leader in this area.”

Michael Bowdery, Head of Programmes at Health and Care Research Wales, said: “A clearer understanding of how severe period pain is identified and managed would make a huge difference to people across Wales living with the condition, and we look forward to following the progress of this study and tracking its potential for improving the treatment pathways and education in this area.”

To learn more about this study or to participate and share your views you can register for the study's quarterly newsletter or contact the team via social media.