A recent study reveals an important layer in the understanding of endometriosis-related pain: more than a third of women with deeply infiltrating endometriosis and chronic pelvic pain are found to have neuropathic pain. This is not a rare exception, but a common type of pain associated with more severe pain, greater emotional distress and poorer quality of life, regardless of how severe the endometriosis is anatomically.
The study took place in a tertiary pain centre in Lille, France, where data from 149 women with deep endometriosis and chronic pelvic pain were analysed retrospectively. The researchers assessed the nature, intensity, emotional impact and quality of life of pain using validated questionnaires, including the DN4 Neuropathic Pain Interview, the Saint-Antoine Pain Questionnaire and the EQ-VAS. They also examined psychological factors such as anxiety, depression and pain catastrophising.
Results showed that 36% of patients had identifiable neuropathic pain. These women reported significantly higher overall and minimal pain intensity, experienced stronger sensory and emotional pain, had much higher catastrophizing thinking, and reported significantly poorer quality of life.
A particularly important observation is that this type of pain was not associated with stage of endometriosis, complexity of surgery, or anxiety and depression scores.
The latter is key because it suggests that more severe pain and deterioration in quality of life is not simply the result of a "worse state of mind". Rather, pain-specific mechanisms - such as neural involvement or central sensitisation - may be involved. In other words, it is not the size or number of lesions that determines how much pain a patient suffers, but also the way in which pain is 'produced' in the nervous system.
The clinical message of the research is clear: it is not enough to rely solely on imaging, stage or previous surgery to assess endometriosis pain. Failure to recognise the neuropathic nature of pain can easily lead patients into a treatment spiral of repeated hormonal or surgical interventions without truly targeting the dominant pain mechanism. With simple, validated screening tools, these patients could be identified and multidisciplinary, mechanism-based pain management could become available.
The study thus confirms that the pain associated with endometriosis is often complex and not merely "tissue", and also emphasises that the way in which the pain is caused is as important as the anatomical location of the disease.
These are strong arguments that the recognition of the pain phenotype is a key issue in the management of endometriosis. Not only do we need to know where the disease is, but also how the pain works in a given patient, because the two can be very different and can lead to a frustrated, distrustful patient and a damaged doctor-patient relationship.
Unfortunately, many doctors are still ego-driven and take it almost as a personal insult when their patients report a persistence of pain after a surgery they say has been successful, leaving the "good patient" often afraid to ask questions and without help.
In 2026, I will be attending a 3-day Endometriosis Conference in New York, focusing on this mechanism. I'll bring lots of information and interesting facts, and in the meantime, if you're going to have surgery and you don't want the pain to come back, or you've had surgery but the pain hasn't gone away, or you want to understand how pain works for you and what you can do about it, then THIS IS MY COURSE is for you.
The latest, authoritative, science-based, practical knowledge to help you take control of your quality of life from EndoBlog's clinical health psychologist and lifestyle doctor, with 16 years of experience.
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