Pain science education (PSE) is an important aspect of treating painful musculoskeletal conditions including chronic low back pain and osteoarthritis.

It aims to explain how pain works to people with chronic pain and helps to shift misconceptions about it and to teach people how to self-manage their pain.

Physiotherapists are often at the front lines of delivering pain science education but while they might be well versed in talking about pain related to the musculoskeletal system, they are often less confident when talking about persistent pelvic pain and lack resources for people experiencing this kind of pain.

Pain researcher and PhD student Amelia Mardon is part of a team looking at persistent pain in the IIMPACT in Health program at the University of South Australia, particularly persistent pelvic pain and the potential role PSE can play in helping people manage their pain.

The international team includes researchers with backgrounds in physiotherapy, psychology, neuroscience and medicine.

In a recent paper published in the journal Pain, the researchers interviewed 20 people assigned female at birth with persistent pelvic pain (in most cases due to endometriosis).

The participants had all engaged with PSE in some way and self-identified as having improved persistent pelvic pain.

‘We asked them what the most important concepts were for them to learn and we asked them if it helped in their improvement,’ says Amelia, who is first author on the paper.

‘Through the interviews with the 20 participants we identified four concepts that were important to them—these were concepts that came out consistently across the 20 interviews.’

The first theme—‘A sensitised nervous system leads to over-protective pain’— captures what the participants learnt about the biology and mechanisms of pain, providing validation that the pain they were experiencing was real.

‘People with pelvic pain are often told “Your pain is all in your head”, “You’re just making it up” or “It’s a women’s problem; you just have to deal with it”. Learning that something’s going on in their nervous system and their brain and their body can be very validating,’ Amelia says.

‘Some people also said that it gave them the tools to communicate their pain because talking about genitals, the pelvis, painful sex and periods can have lots of stigma around it.

‘People could talk about their brain and their nervous system instead and that helped other people relate to it a bit more.’

Pain researcher Amelia Mardon is looking at the role of pain education for persistent pelvic pain.

The second theme—‘Pain does not have to mean the body is damaged (although sometimes it does)’—emphasises that the level of pain experienced might not reflect the actual physical state of someone’s pelvis and reassures people that their condition is not worsening.

‘Some people can have really bad pain and no tissue damage or tissue pathology at all—in conditions such as vulvodynia, for example, where there’s absolutely no tissue pathology.

‘But for people with endometriosis, validating tissue pathology as one part of their pain puzzle is important—recognising that it’s one potential contributing factor but not the be-all and end-all helps.

‘The amount of endometriosis that someone has doesn’t always equal the amount of pain or the types of symptoms that they have,’ Amelia says.

The next theme—‘How I think, feel and “see” my pain can make it worse’— speaks to how pain can be influenced by thoughts and emotions, not just by physiological damage.

‘Our participants said that this really opened them up to different pain management strategies, not only surgery and medication, as well as other conservative management strategies such as stress management techniques or exploring different ways of moving,’ says Amelia.

The final theme—‘I can change my pain… slowly’—sends the message that pelvic pain can change and improve over time.

Amelia notes that this concept helps people with persistent pelvic pain to understand that their pain can improve.

‘Pain isn’t stagnant; it’s not always just going to get worse.

‘How you feel and experience pain can change over time and it can get better.

‘That empowers people to stick with management strategies that aren’t necessarily a quick fix in order to see the long-term benefits and outcomes,’ she says.

Amelia says that PSE resources targeting persistent pelvic pain will help to educate people—both those who experience it and those who treat it—about the particulars of pelvic pain, its causes and the differences and nuances specific to pelvic pain as opposed to other kinds of pain such as low back pain.

‘Some of the concepts are similar to other pain conditions but there is a stigma and taboo associated with the pelvis and none of that is out there in current education resources that physios use.

‘We don’t have to rewrite the whole story but there are some slight differences and the context is a bit different for pelvic pain.

‘And the slight differences in language are important—it’s the difference between people engaging and people disengaging—so I think that’s where this study can be really helpful for physios in outlining the terminology and the metaphors that you might use when delivering education,’ she says.

Currently, the researchers are planning to use the findings from this study, along with a second study focusing on a survey of clinicians in Australia and overseas to identify key learning concepts for PSE, to support the development of appropriate PSE for people with persistent pelvic pain.

In another study, team member Jane Chalmers is running a feasibility trial on educating people about pelvic pain prior to having exploratory surgery to diagnose endometriosis—important both for those whose surgery indicates endometriosis and for those who don’t get answers.

‘We hope that this research provides a foundation for physios and other healthcare professionals to use and tailor to their patients,’ Amelia says.

>> Mardon A et al. ‘I wish I knew then what I know now’—pain science education concepts important for female persistent pelvic pain: a reflexive thematic analysis. Pain, 2024.
doi:10.1097/j.pain.0000000000003205

Course of interest:

It’s time to talk about the pelvis: integrating pain education in the MX of pelvic pain