Personalised Care for Women Living With Endometriosis and Chronic Pelvic Pain

On Friday 11 September, the Julia Argyrou Endometriosis Centre at Epworth brought together approximately 100 health professionals from across the health sector for a Symposium exploring endometriosis, pelvic pain and the importance of multidisciplinary care.

The Symposium brought together gynaecologists, pain physicians, GPs, nurses, allied health professionals and researchers, creating an opportunity to share knowledge and consider how we can continue to improve care for women living with endometriosis and chronic pelvic pain.

As a psychologist working in women's health and fertility, I was grateful to contribute to this important conversation by presenting on “Neurodivergence and Pelvic Pain Care.”

The day reinforced something that sits at the heart of compassionate healthcare: Pain is personal.

Pain is personal

We are all unique, and our experiences shape the way our bodies and nervous systems perceive and respond to pain.

What feels manageable for one person may feel overwhelming for another. The same medical condition can affect two people in very different ways.

Understanding this individuality allows us to move beyond a one-size-fits-all model of care and towards an approach where women feel heard, believed and understood.

This is particularly important when supporting women living with endometriosis and chronic pelvic pain.

When pain becomes more than a physical symptom

Living with endometriosis or chronic pelvic pain is about much more than managing physical symptoms.

For many women, the journey can involve years of pain, delayed diagnosis, repeated medical appointments, frightening or invasive procedures and the exhausting experience of having to explain, or even defend, their pain.

Over time, these experiences can have a profound psychological impact.

A woman may begin to develop beliefs such as:

• My needs don't matter.
• My body is broken.
• I am helpless.
• I am a failure.
• No one believes me.
• I can't trust my body anymore.

These beliefs are not a reflection of who someone truly is. They can develop in response to prolonged pain, uncertainty, medical experiences, loss and repeatedly feeling unheard.

This is why care needs to look beyond the diagnosis.

A neurodiversity-informed perspective

One of the topics I explored at the Symposium was neurodivergence and pelvic pain care.

A neurodiversity-informed perspective recognises and respects the different ways our brains and bodies experience the world.

People can differ significantly in how they process sensory information, communication, emotions, stress and bodily sensations. These differences can influence how someone experiences pain and how they navigate healthcare environments.

For a neurodivergent woman living with pelvic pain, factors such as sensory sensitivity, communication preferences, previous healthcare experiences and responses to stress may all influence how safe and supported she feels during treatment.

A neurodiversity-informed approach invites us to move away from assumptions and instead ask:

“What does this person need to feel safe, understood and supported?”

This shift matters.

It encourages healthcare professionals to listen with curiosity and recognise that there is no single "right" way to experience, communicate or respond to pain.

Where EMDR can fit

For some women, the experience of living with chronic pain can become psychologically traumatic.

This may include medical trauma, repeated experiences of dismissal, frightening procedures, reproductive loss, infertility, sexual pain or negative beliefs that have developed about the body.

These experiences can become intertwined with the experience of chronic pain and can continue to affect how a person feels about themselves, their body and their sense of safety.

This is where EMDR (Eye Movement Desensitisation and Reprocessing) may have a role.

EMDR is a trauma-focused psychotherapy that helps people process distressing memories and the negative beliefs, emotions and bodily sensations associated with those experiences.

For someone living with chronic illness or pelvic pain, EMDR may help address the traumatic psychological impact of difficult experiences.

For example, someone may carry beliefs such as:

• My body is broken.
• My needs don't matter.
• I am helpless.
• I am a failure.

These beliefs can feel deeply embedded after years of pain or difficult medical experiences.

EMDR may provide an opportunity to process the experiences that contributed to these beliefs and work towards developing more adaptive and compassionate perspectives.

Importantly, EMDR is not a treatment for endometriosis itself, and it does not suggest that physical pain is “all in your head”. Rather, it can be one part of psychological care that addresses the emotional and traumatic impact of living with pain and chronic illness.

Why multidisciplinary care matters

Women with chronic pelvic pain deserve care that sees the whole person, not simply a diagnosis or a painful body part.

An integrative, multidisciplinary approach can bring together medical treatment, pain education and psychological support.

Gynaecologists, pain physicians, GPs, nurses, allied health professionals, psychologists and researchers all bring different perspectives.

When these perspectives come together, we have a greater opportunity to provide care that is personalised, respectful and responsive to the individual.

Psychological care does not replace medical care. Instead, it can sit alongside medical treatment and support a woman with the emotional, psychological and relational impact of living with chronic pain.

Women should not have to prove their pain

Perhaps one of the most difficult aspects of living with chronic pelvic pain is feeling that you need to convince other people that your experience is real.

You shouldn't have to.

Your pain is real.
Your experience is personal.
Your body deserves to be listened to.

The Symposium was a valuable reminder of the importance of bringing different areas of healthcare together and continuing to ask how we can provide care that is more individualised, inclusive and compassionate.

Because behind every diagnosis is a person.

A person with their own history, nervous system, experiences, strengths, concerns and needs.

There is no single way to experience pain, and there should not be a single way to receive care.

Ultimately, women should not have to prove their pain to receive compassionate care.

If pain is personal, care must be personal too.

We can help

If you are living with endometriosis, chronic pelvic pain, fertility challenges, medical trauma or difficult experiences relating to your body, Myndful can provide you with the psychological support you need to feel heard, understood and supported.