Why is Burning Mouth Still A Mystery?

Burning Mouth affects up to one-fifth of women in their 50s and older. Still, there is no standardized, curative treatment. So why is BMS still such a mysterious condition? Why don’t any of the doctors you’ve talked to about your pain have a good understanding of hormone replacement therapy, let alone any idea what to do about BMS?

Is it just because it’s uncommon? Is it because it is not life-threatening? Maybe it is because there’s no clear, highly profitable pill to sell? Or maybe it is all that and something more?

Burning Mouth Syndrome only affects about 2% of the overall population, but is far more common in women (up to seven times more likely). According to one large study, up to one-fifth of women in their 50s and older develop the condition [1,2]. Still, there is no standardized, curative treatment. Management is often trial‑and‑error with nerve‑pain drugs, antidepressants, and coping strategies.

It takes three years, on average, to be diagnosed with burning mouth syndrome. This means three years of seeing a multitude of doctors, dentists, allergists, ENT, and other health practitioners.

Once a diagnosis is made, for the most part, there are no good options for treatment. There are the usual neuropathic pain medications, which are repurposed seizure depression medications. They tend to have a number of side effects and, in general, are not very helpful for this condition.

Why Is Burning Mouth Syndrome Still A Mystery?

So why is BMS still such a mysterious condition? Why don’t any of the doctors you’ve talked to about your pain have a good understanding of hormone replacement therapy, let alone any idea what to do about BMS?

Is it just because it’s uncommon? Is it because it is not life-threatening? Maybe it is because there’s no clear, highly profitable pill to sell? Or maybe it is all that and something more?

Consider how sexual dysfunction is treated for men and women: Both men and women experience symptoms of sexual dysfunction when they age.

For women, sexual complaints increase progressively through the menopausal transition. The Melbourne Women’s Midlife Health Project found that the prevalence of sexual complaints more than doubled, from 42% to 88% over 8 years, in women aged 45–55. Approximately 50% of perimenopausal and postmenopausal women experience female sexual dysfunction. The most prevalent complaints are decreased sexual desire, arousal disorder, and vaginal dryness. Notably, while low sexual desire increases steadily with age (reaching >90% in the oldest groups).

There is only ONE FDA-approved treatment for sexual dysfunction in menopausal women – and it’s only approved for women under 65 years old.

For men aged 40-80, the overall prevalence of erectile dysfunction (ED) is approximately 20–40%, with a steep age-dependent increase. The global prevalence ranges widely from 3% to 76.5% depending on the population studied and the screening tool used.

There are 11 FDA-approved medications and devices, and in addition, 7 forms of testosterone for aging men.

So, large numbers of older men and women have sexual dysfunction, but is only one approved treatment for women.

Is Women’s Hormonal Health Taken Seriously?

So, perhaps it is not just a lack of education about Burning Mouth Syndrome alone. Maybe it’s also a reflection of a larger pattern of neglect for the health of aging women in general.

• An ethics/health-policy review summarizing US data reported that only about 20% of OB‑GYN residency programs provide menopause-related training, and that around 80% of medical residents feel “barely comfortable” discussing or treating menopause.
• A WHO fact sheet noted that menopause is often not discussed in health‑care settings and that providers may not be trained to recognize peri- and post‑menopausal symptoms or counsel on treatment options.

But what is worse than the lack of education is that women – even today in the 21st century – are still not being taken seriously.

A 2020 AARP survey of women 45–60 found that 45% said their clinicians did not take their peri/menopausal symptoms seriously.

Last week, I was at a family event and happened to be talking to a cousin entering perimenopause. She described the obstacles she had encountered trying to get relief from her symptoms. Fortunately, she’s well-read and savvy enough to do research on the Internet. She found that hormones would likely provide her with some relief. She’s one of the lucky ones. She’s informed and assertive and told her gynecologist to prescribe hormone replacement therapy, or she would find another provider. Her doctor did. Now, she’s back to feeling like herself again.

This is a good example of what women are up against in menopause–how women and their health issues are treated by society and health practitioners.

Health for Aging Women

Our aging population, in general, is viewed as a burden rather than as significant contributors to our society, unlike in other cultures. The older generation is not revered for their knowledge and life experiences. They are written off to a large extent.

Then there is the issue of being a woman. For many years, women were not included in scientific studies, the excuse being that women go through monthly cycle changes, and how can a scientific study be consistent if the subjects’ physiology is changing all month long. It was also thought that women were like smaller versions of men as far as the effects of medications, lifestyle, and other interventions.

Scientific papers from the 1980’s and 1990’s largely talk about Burning Mouth Syndrome being a mental condition. It was blamed on fear of cancer. It was even blamed on watching too many upsetting soap operas on television.

Admittedly, our emotions, as well as stress, play a role in human pain responses and pain physiology, but blaming women for being mentally unstable when they have a real neurological condition is a black mark on the medical profession.

It’s Not In Your Head

Because of my work in longevity medicine with hormones and working with a largely perimenopausal and menopausal population of patients, I’ve known for almost 20 years that hormone replacement therapy can make burning mouth syndrome better.

After reviewing charts of current and former patients, I estimate that 75% of my burning mouth patients feel “significantly better” on the Sklar Method of treatment. This includes hormone therapy, replacement of essential nutrients, and addressing underlying causes such as histamine release or reactivated viral infections.

The scientific literature review on burning mouth syndrome for the past 40 years shows only a handful of studies using hormone therapy. But actually, these were almost universally successful in relieving the pain.

In spite of that, no further studies were done, and hormones are not generally considered to be a treatment for chronic pain syndrome. This new understanding of hormone effects on chronic pain may affect the way all chronic pain is treated. More work needs to be done, but our success with burning mouth patients shows us that we are on the right track.

In the meantime, the best thing you can do is educate yourself, become an informed patient, and advocate for your own health.

[1] “Reported prevalence in the general population varies from 0.7% to 15%…studies suggest that burning mouth syndrome mainly affects women, particularly after the menopause, when its prevalence may increase to 18±33% of women.” https://www.nature.com/articles/6400082

[2] “Burning mouth syndrome prevalence among menopausal women ranges between 10% and 40%, depending on the research centre.” https://www.termedia.pl/Burning-mouth-syndrome-a-common-dental-problem-in-perimenopausal-women,4,23064,1,0.html