Endometriosis and Neuropathic Pain: How Pain Rewires Our Nervous System by Alice S
Disclaimer: This article is based on my personal experience living with endometriosis and chronic pain. It is intended for awareness and education only and should not replace medical advice. Please consult a qualified health professional for individual guidance.
What happens when your body heals but your nervous system doesn’t — and why many of us keep hurting despite treatment.
When I finally received my endometriosis diagnosis — seventeen years after my first symptoms — I felt both relief and hope. After so many years of being dismissed and misunderstood, I believed surgery would be the solution. Remove the endo, remove the uterus, take out the problematic ovary, excise the lesions — surely each time would get me closer to a life without pain.
No more periods, I thought, might mean no more period pain. No more endometrial tissue meant no more inflammation. That was the plan. But no one told me about nerve pain.
Our nerves remember what our bodies forgot
I’m now 41, post-hysterectomy, with one ovary gone and most of my endometriosis removed. Yet I still wake up some mornings with that familiar stabbing, aching, electric pain that shoots through my pelvis, back, and abdomen. Other days, I end the night with a deep throbbing ache after simply standing too long.
My latest scans show no major cysts or new lesions, and yet, the pain remains. I’ve spent countless appointments asking myself and my doctors the same questions:
Why am I still in pain when there’s “nothing there”?
Why do I still need strong pain medication?
Why do I still end up in hospital when it becomes unbearable?
It wasn’t until recently that I learned about neuropathic pain — pain that originates from the nerves themselves rather than ongoing tissue damage. For years, my healthcare team understandably focused on what they could see and remove. And I’m grateful — without those surgeries, I wouldn’t have been able to work, function, or have children. Each procedure brought improvement. But it also seems my nervous system was quietly rewiring itself, learning to expect pain as my body’s new normal.
What is neuropathic pain?
According to Pain Australia, neuropathic pain arises from damage or injury to the nerves.
By contrast, nociceptive pain is the body’s response to actual or threatened tissue damage — inflammation, injury, or surgery. It’s often sharp, throbbing, or cramping, and directly linked to the physical problem.
Neuropathic pain, though, comes from within the nervous system itself. The nerves, spinal cord, or brain continue sending pain signals even after the injury or tissue damage has healed. It can feel like burning, stabbing, or tingling, and is sometimes accompanied by numbness or pins and needles.
The key difference? Nociceptive pain says, “something is wrong.” Neuropathic pain says, “something was wrong — and I remember.”
This type of pain can exist on its own or overlap with other chronic pain conditions such as fibromyalgia, pelvic pain, or complex regional pain syndrome.
The research that changed how I understood my pain
A major Oxford University study found that 40% of people with endometriosis experience neuropathic pain, and another 35% experience mixed neuropathic and nociceptive pain. In other words, many of us aren’t just dealing with inflammation — our nervous systems themselves have been altered by the disease and by repeated surgical interventions.
The study also revealed that people who’ve had multiple surgeries are more likely to experience this nerve-related pain. Each excision, while often necessary, can contribute to nerve damage and sensitisation. It’s a cruel irony — the very treatments that help us can also leave behind a nervous system that never quite resets.
When lesions grow nerves of their own
One of the most shocking things I learned is that endometriotic lesions can actually become innervated — they grow their own nerve supply. Surgeons cutting them away are often navigating webs of hypersensitive, inflamed nerves that may have been irritated for decades.
Some lesions even wrap around existing nerves, causing sharp, electric pain that feels like being stabbed. Even once removed, those nerves can continue to misfire. My body, it seems, learned pain as a language — one that my brain still speaks fluently.
This process, often called centralised pain, happens when the brain and spinal cord amplify or even create pain signals without ongoing tissue damage. Years of endometriosis symptoms can train the nervous system to stay in high alert, interpreting even normal sensations as threats.
Why this matters
Understanding neuropathic pain finally made sense of what I was living through. It explains so many of the questions that haunted me for years:
Why does pain persist even after “successful” surgery?
Why doesn’t it always match what shows up on scans?
Why do traditional painkillers often fail?
Why do we feel pain far beyond the pelvis — in our legs, backs, or abdomens?
Why are so many of us dismissed when nothing visible explains it?
It’s not in our heads. It’s in our nervous systems.
What needs to change
Recognising neuropathic pain as part of endometriosis should reshape how this disease is treated. For too long, care has focused only on the reproductive system — stopping periods, removing lesions, supporting fertility — while the neurological consequences go largely ignored.
We need:
Recognition that endometriosis is not just a gynaecological disease but a whole-body, condition.
Pain management approaches tailored for nerve pain, not just inflammation.
Access to specialists within multidisciplinary care teams.
Treatment plans that address nerve sensitisation and central pain processing.
Compassion and validation for patients whose pain persists long after surgery.
Living with a rewired nervous system
I don’t regret my surgeries. They gave me back function, freedom, and the chance to live more fully. But I’ve come to accept that surgery isn’t a cure — it’s just one step in an ongoing process.
For me, life after endometriosis surgery means learning to live with a nervous system that has been permanently changed. It means understanding that pain doesn’t always mean new disease — sometimes it’s an echo from the past.
Our pain has rewired us. And acknowledging that helps us reclaim power. It allows us to advocate for better treatments and, perhaps most importantly, to release the self-blame that so often comes with chronic illness.
We’re not weak.
We’re not dramatic.
We’re not imagining it.
We’re living with one of the most complex, misunderstood conditions medicine is only beginning to grasp.
Support:
If you need help or want to learn more, support is available through QENDO, or your local health practitioner.
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