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

A new study aims to explore the impact of severe period pain (SPP).

SPP makes it difficult to focus, move and sleep 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.

The SPPINN study (Severe Period Pain Is Not Normal), based at Cardiff University and funded by Health and Care Research Wales, aims to explore the impact of SPP across different communities and age groups. Upon completion, the SPPINN study will produce recommendations to improve education and care around the condition.

In an interview with the BBC, lead researcher Dr Robyn Jackowich said,

There's certainly a need for it, given both how common it is and what an incredible impact it has on the people who experience it.

The study aims to understand and improve how severe period pain is identified and managed across the reproductive life course and across Wales. By combining information from interviews, healthcare data and education data across Wales we can help create recommendations for what needs to happen next to improve education and care for severe period pain.” 

The BBC also spoke to study participant Emily Handstock, 25, from Aberdare, who has battled severe period pain since she was 15. 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'.

"The mental toll is also awful, you feel like people won't believe you and worry about being well enough for school or work."

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

The study’s co-investigators include women’s advocacy group, Fair Treatment for Women of Wales (FTWW), who were instrumental in establishing the introduction of specialist endometriosis nurses in Wales.

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

The Welsh Government recently launched its highly-anticipated Women’s Health Plan, a 10-year vision to improve healthcare for women in Wales. It includes commitments to funding research for women’s health conditions and to establish women’s health hubs across Wales by 2026. Doctors will also be encouraged to ask women about their menstrual health during existing appointments.

Dr Jackowich continued: “The Welsh Government and NHS Wales commitment to prioritising menstrual health and conditions associated with severe period pain in the Women’s Health Plan is very encouraging. We hope that the findings of the SPPINN study will help NHS Wales to achieve the aims of the Women’s Health Plan, through a greater understanding of what is needed in healthcare and education to better support individuals with severe period pain in Wales.”

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.” 

Find out more about SPPINN by signing up to the study newsletter or following it on social media.