By Aneeta Prem MBE London
International Women’s Day 2026
International Women’s Day often focuses on opportunity, leadership and visibility. It should also prompt a more uncomfortable question: which women are carrying the heaviest burden of disease, and why that burden remains so poorly recognised.
Trigeminal neuralgia is one such condition.
It is routinely described as rare, yet the evidence now shows it affects women disproportionately. This is not anecdote or advocacy. It is supported by global epidemiology and reinforced by UK patient-reported data.
The consequences are clinical, psychological and structural. They extend far beyond neurology clinics.
The most comprehensive global synthesis to date, a 2026 systematic review and meta-regression covering studies from 1945 to 2024, reports higher incidence and prevalence estimates for trigeminal neuralgia in women than in men across pooled datasets. While the authors are careful about subgroup certainty, the overall direction is consistent: women are more frequently affected.
This global picture is reflected sharply in UK data.
In the TNA UK Patient Experience Survey (2025), 70% of respondents were women and 30% were men. This is not a marginal difference. It is a clear majority.
When a condition with this level of severity shows such a skew, it should be examined through a women’s health lens, not treated as gender-neutral by default.
Trigeminal neuralgia is often framed as intermittent pain. The reality for many women is very different.
In the same UK survey, 41% of respondents reported living with trigeminal neuralgia for more than ten years. In a female-dominant cohort, that represents decades of women’s lives shaped by pain, medication and restriction.
Duration matters. It increases cumulative psychological strain, long-term exposure to medication and the gradual shrinking of daily life. People adapt, but adaptation often looks like withdrawal.
One respondent described it simply:
“My world shrank to my bedroom.”
That sentence captures what chronic pain does in ways statistics alone cannot.
The most serious signal in the survey relates to mental health.
Given that 70% of the cohort is female, this is not an abstract concern. It points to a significant mental health risk in women living with long-term neurological pain.
This is not about women being more emotional or less resilient. It is about what happens when pain interferes with eating, speaking, washing, sleeping, working and social contact. When ordinary actions become potential triggers, psychological distress is an understandable consequence.
As one person wrote:
“It doesn’t just break your body. It breaks your mind.”
That is not rhetoric. It is a lived description of harm.
Another striking finding is the rate of misdiagnosis.
In the TNA UK survey, 42% of respondents reported being misdiagnosed with a dental problem before trigeminal neuralgia was identified. Many described repeated dental referrals and unnecessary procedures.
Examples included:
“One dentist told me to get therapy instead of treatment.”
“I had seven teeth pulled before someone said it might be TN.”
Diagnostic delay is not just frustrating. It compounds harm. Pain continues untreated, trust in clinicians erodes and people begin to doubt their own experience.
Where a condition disproportionately affects women, the risk of dismissal rises. Women’s pain has long been more likely to be reframed as anxiety, stress or coping failure. The survey narratives reflect frustration, humiliation and anger at not being believed.
Treatment for trigeminal neuralgia often relies on anticonvulsant medication. In the survey, 88% of respondents had tried these drugs.
Many find them helpful. Many also describe side effects that fundamentally alter how they function: sedation, cognitive fog, balance problems and emotional flattening.
One respondent summed it up bluntly:
“I’m on 12 tablets a day, but I’m a zombie.”
When most patients are women, medication tolerability becomes a women’s health issue. It affects employment, caring responsibilities, relationships and independence. These impacts rarely appear in treatment success metrics.
Credibility depends on precision.
What the evidence shows
What the evidence does not show
Acknowledging these limits does not weaken the case. It strengthens it. The absence of biological explanation does not erase the reality of burden.
Women’s health strategies often focus on reproductive life stages. Trigeminal neuralgia sits elsewhere, at the intersection of ageing, chronic neuropathic pain, mental health vulnerability and social isolation.
Despite this, it is rarely included in:
That gap has consequences. It leaves women navigating severe pain in systems not designed with their experience in mind.
The evidence points to practical shifts.
First, trigeminal neuralgia should be considered explicitly within women’s health discussions, reflecting the burden shown in data rather than assumptions of neutrality.
Second, diagnostic pathways must improve. Repeated dental detours should not be an expected part of the journey to a neurological diagnosis.
Third, mental health risk must be taken seriously. When most people with suicidal thoughts do not disclose them, the problem is not individual reluctance but system design.
Finally, care must reflect chronicity. A condition that lasts a decade or more cannot be managed through short appointments and fragmented referrals alone.
If you are reading this and recognise yourself, two points matter.
A normal scan does not invalidate your pain. It may mean current tools are limited, not that your experience is.
And if you have had thoughts of ending your life, you are not failing. Pain of this severity changes how people think and cope. Tell someone you trust. Tell a clinician. Seek help urgently if you are at risk.
No one should carry this condition alone.
On International Women’s Day, attention should not stop at celebration. It should extend to evidence.
Trigeminal neuralgia is a women’s health issue. The data is already clear. The question is whether systems are prepared to respond.
Aneeta Prem MBE is a UK human rights campaigner and health policy advocate. She writes on neurological pain, health, safeguarding and systemic failure in public services. She lives with bilateral trigeminal neuralgia.
For help and support, visit https://www.tna.org.uk
Zero Discrimination Day, marked on 1 March, asks where inequality persists inside systems rather than through intent. In UK healthcare, discrimination often appears as delay, variation, and missing data. Trigeminal neuralgia exposes how postcode, rather than need, can shape who is diagnosed, referred, and treated in time.
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