Why Endometriosis Pain Doesn't Always Match the Scan
One of the most painful things I hear in clinic, emotionally as much as physically, goes something like this: "My scan was clear" or "I had surgery, but the pain is still there. So is it in my head?"
No. It's in your nervous system, and that's a very different thing.
Three layers of pain
1. Pain from the lesions themselves
This is the pain most people picture. It's cyclical and tends to rise and fall with inflammation. Around a lesion, inflammatory chemicals, iron and acidity build up, and they irritate the nerve endings nearby. It's similar to hitting your thumb with a hammer: local, sharp and roughly in proportion to the injury.
2. When the nerves become oversensitive
If that irritation carries on month after month, the nerves themselves start to change. Their trigger point drops, so it takes less and less to set them off.
Think of a bruise. It's meant to be tender for a while, then heal. With endometriosis, the tenderness never switches off. Eventually pain can come from things that shouldn't hurt at all, even light touch.
Irritated nerves also release their own inflammatory chemicals. These attract more immune cells, which release more inflammation, and round it goes.
The organs in your pelvis share nerve pathways, a bit like houses on the same electrical circuit. That's why an endometriosis flare can bring bladder or bowel pain even when there's no endometriosis lesions in those organs.
3. When the brain and spinal cord join in
Over time, the constant stream of pain signals rewires the spinal cord and brain. Imagine a phone line that has been rung non-stop for years. Eventually the line burns out and starts ringing on its own, even when nobody is calling.
At this stage, the nervous system itself is creating the pain. This is why pain can continue, or even worsen, after lesions have been removed. The brain can also learn to anticipate pain, so it starts days before your period arrives. The same process is seen in fibromyalgia and other chronic pain conditions.
The anticipated pain is real. It's a nervous system that has been trained by years of pain to stay on high alert.
Your body's own pain relief system
We all have an endocannabinoid system. It's a signalling network that helps regulate pain, inflammation, immunity and mood, and it's very active in the womb and ovaries.
In endometriosis this system is out of balance. There are extra receptors on the nerves around lesions, which raises pain sensitivity. At the same time, the body is short of anandamide, a natural calming and pain-relieving molecule nicknamed the "bliss molecule". Picture more locks but fewer keys.
There are two reasons for the shortage:
An enzyme that breaks anandamide down is working overtime.
What's left gets converted into inflammatory compounds instead.
What can help
Because pain in endometriosis comes from several layers, support needs to work on several levels too.
Calming inflammation:
This is the foundation. We covered it in the previous post: omega-3s, curcumin, resveratrol and ginger.
Supporting the endocannabinoid system:
PEA (palmitoylethanolamide) is a compound the body makes naturally. It slows the breakdown of anandamide and helps turn down inflammation. It calms the oversensitive nerve channels involved in pain and heat, and it steadies mast cells. Research in women with endometriosis has shown reduced pain.
Foods that naturally slow anandamide breakdown include capers, saffron, dill, chives, tarragon and dark leafy greens. That's a lovely excuse to cook with more herbs.
Retraining the nervous system:
Once sensitisation has set in, we need to work with the brain as well as the pelvis. Helpful approaches include:
Pelvic health physiotherapy: breathing, posture, trigger points and gentle work to help organs move freely.
CBT for pain: this changes how the brain processes pain signals. It isn't saying pain is imagined.
Mindfulness practice: shown to change pain processing and improve quality of life.
Yoga: combines movement, breath and calm to settle the nervous system.
Acupuncture: it stimulates the body's own natural painkillers and helps regulate how the brain processes pain.
What about creatine and collagen?
I get asked about these often. Some early lab and animal research has raised theoretical concerns about both since animal studies have shown that creatine injected directly into the pelvic area can increase lesions, and collagen is what lesions are made of. It makes sense to be cautious, but there's no human evidence that taking them by mouth worsens endometriosis.
A TCM perspective on pain
In Chinese medicine we say that where there's stagnation, there's pain. But long-term pain also affects the Shen, the spirit housed in the Heart. Over time it creates anxiety, poor sleep and hypervigilance. When I treat endometriosis pain with acupuncture, I'm working on the flow in the pelvis and on calming the Shen. To me, it's a beautiful parallel to the central sensitisation we now understand.
Your pain is real, and it's something you can work with. If you'd like support building a plan that treats the whole picture, book a consultation at Vale of Health or follow @valeof.health.