Living with pain

Severe and disabling pain is the most common reason why people eventually diagnosed with endometriosis first go see a doctor. Women with endometriosis are more affected by pain on a daily basis than women with other pelvic problems.

Pain from endometriosis often starts during adolescence or early life. The level of pain (pain intensity) is not an indication of the stage of disease – even women with minor disease can have extreme pain. The pain associated with endometriosis can be experienced during menstrual periods (this is called dysmenorrhea), sex (dyspareunia) and going to the toilet (known as dysuria or dyschezia).

People have described their pain in many ways, as ‘stabbing’, ‘crushing’, ‘throbbing’ and ‘deep’. The pain is severe, described as ‘horrendous’, ‘crippling’, ‘excruciating’ and can interfere with daily activities such as going to school or work, or affect people’s social and personal life.

Pain management

Managing pain is a very important part of endometriosis care and living with endometriosis. People with endometriosis access pain management services through their GP or other specialist.

Using appropriate pain management is important because severe endometriosis pain can interfere with sleep, daily activities, and mental and physical wellbeing.

You can read more about the options for pain management on the Treatment & Management Pathway page.

Patient Perspectives

Our patient perspectives are taken from interviews with endometriosis patients and the 2018 survey

  • Endometriosis pain is literally all-consuming; not just affecting your body physically but also mentally, which controls your life every minute of every day. The exhaustion amplifies the pain and the pain exacerbates the exhaustion.
  • I have been hospitalised overnight due to pain at least 4 times. The pain disabled me and caused me to have to drop out of university for a year.
  • Ovulation pain - it is unbearable and been getting worse. I’ve gone back on the pill recently and I’m still suffering with it.

Pathway Perspective

Due to the many impacts that endometriosis can have, the Task and Finish Group advisory reflected that a multidisciplinary approach to chronic pelvic pain management would be the best approach to pain management for endometriosis. This approach from initial diagnosis would provide access to specialists in chronic pelvic pain management, physiotherapists, dieticians, psychologists (e.g., for CBT, coping strategies, counselling, and lifestyle advice).