Endometriosis is a reproductive condition that occurs when tissue similar to your uterine lining grows outside the uterus, inside your pelvis or abdomen. According to the World Health Organization (WHO), endometriosis affects roughly 10%, or 19 crore, of reproductive-age women and girls globally. While it is a chronic disease that mainly affects the pelvis, it can also cause serious issues or discomfort in other parts of the body as well, including the legs.
In an interaction with the OnlyMyHealth team, Dr Abhishek Mangeshikar, Endometriosis Surgeon and Founder, Indian Centre for Endometriosis, Mumbai, sheds light on the same.
Also Read: Endometriosis & Women's Health: Doctors Answer Most-Asked Questions on Endometriosis
What Is Endometriosis And Can It Cause Leg Pain?
“Endometriosis is commonly known as a disease affecting the pelvis, but it can also spread beyond it, especially to nerves,” explains Dr Mageshikar.
According to him, one of the lesser-known and often misunderstood manifestations of endometriosis is when it involves the pelvic nerves, particularly the sciatic nerve or sacral nerve roots. “These nerves run from the lower spine through the pelvis and down the legs. When endometriosis infiltrates or compresses these nerves, it can cause pain, numbness, tingling, or even weakness in the leg.”
The doctor adds that these symptoms, unfortunately, are often mistaken for orthopaedic or spinal issues, leading to delayed diagnosis. A 2024 review looked at 17 studies published since 2018 and found that delays in endometriosis diagnosis still range widely from a few months to up to 12 years. These delays vary based on how diagnosis time is defined, where the study took place, and the type of patients involved.
“Many of my patients have seen multiple specialists – from neurologists to orthopaedic surgeons – before endometriosis is even considered,” the doctor adds.
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How To Recognise Leg Pain Caused By Endometriosis
Leg pain from endometriosis can vary from person to person, but there are some classic patterns we often see:
- A deep, aching, or burning pain in one leg, usually starting from the buttock or hip and radiating down the thigh.
- Pain that worsens around the menstrual cycle or is cyclical in nature.
- Numbness or pins-and-needles sensation.
- In some cases, even muscle weakness or a feeling of heaviness in the leg.
The key difference between normal leg discomfort and endometriosis leg pain is that the latter is not relieved by rest or typical sciatica treatments, and it tends to flare up before or during periods—which is a red flag for possible endometriosis-related nerve involvement.
How To Diagnose Nerve-Related Endometriosis
Diagnosing nerve-related endometriosis is challenging and requires a high degree of clinical suspicion. Most standard scans miss it unless specifically targeted. The key steps are:
- Detailed symptom history—especially if leg pain is cyclical or worsens during periods.
- High-resolution MRI with an endometriosis protocol focused on the sacral plexus and pelvic nerves.
- Sometimes neurophysiological studies may help assess nerve function.
Ultimately, in some complex cases, the full extent of disease is only confirmed during surgery—especially if it’s hidden deep in the pelvis near the spine or sacral nerve roots.
Also Read: Decoding The Whispers: Early Signs of Endometriosis Every Woman Should Know
Treatment Options
Treatment depends on the location and severity of the disease, says Dr Mangeshikar. Common treatment options are:
Medical treatment (like hormonal suppression) can sometimes help control symptoms but often doesn’t fully treat nerve-related disease, especially if the lesion is compressing or infiltrating the nerve.
Surgical excision is the most effective option when the disease is causing nerve entrapment or progressive symptoms. This requires a highly skilled team, including an endometriosis surgeon and often a neuropelveologist or nerve-sparing specialist.
Physiotherapy and nerve pain management can help support recovery, especially after surgery.
“The key is a precise diagnosis, followed by complete excision of the disease from the affected nerve. This is complex surgery and should only be done by specialists trained in handling deep endometriosis involving nerves and vital organs,” the doctor adds.
Conclusion
Endometriosis isn’t just about painful periods or reproductive issues; it’s a complex, chronic condition that can impact many parts of the body, including the nerves. For some, it shows up as intense, often misunderstood leg pain that can make everyday life difficult. This kind of pain is real and deserves proper attention. What we need is a shift in how we approach endometriosis, moving beyond just hormonal treatments to a more compassionate, whole-body approach.