When the Body Whispers, Then Screams

My Journey to a Pemphigus Vulgaris Diagnosis

There are illnesses that arrive loudly, and others that move quietly at first, disguising themselves as something familiar, something easy to explain away. Pemphigus Vulgaris was the latter for me.

In mid-April 2025, it did not begin with visible sores or anything dramatic. It began with my voice.

I became persistently hoarse. At first, it was easy to dismiss. Seasonal irritation? A lingering cold? Perhaps my thyroid nodule pressing on my vocal cords? Vocal strain? As someone who speaks with clients all day, I assumed it would pass.

It did not.

Over the following weeks, throat discomfort set in. Swallowing became painful. Rawness and inflammation developed inside my mouth. What started as a subtle change slowly unfolded into something that no longer fit the usual explanations.

Only much later did I learn that hoarseness can be one of the earliest signs of Pemphigus Vulgaris, especially when the disease involves the throat and larynx. At the time, it was treated as incidental, not as a signal.

By the end of May, swallowing had become so difficult that I found myself repeatedly in the Emergency Room. I went five times in the span of a week and a half before I was finally admitted. Five visits before the severity of what was happening was fully acknowledged. I had lost ten pounds in one week.

Once admitted, I spent a week in the hospital. I was treated with IV fluids, antivirals, antifungals, and prednisone. With that combination, after a week, I could finally swallow again. The immediate crisis eased, and I was discharged. At the time, it felt like progress.

But it was not resolution.

I was sent home with a diagnosis of HSV-1 (interesting diagnosis, because I had not had a cold sore in over 30yrs) and then, fourteen days later, after a follow up with an ENT, told it was not HSV-1 at all but the zoster virus, shingles in my throat (this diagnosis seemed more accurate as I am after all reaching the golden years of my life, or should I say rusting years lol).

While the acute difficulty swallowing improved, my mouth began to look and feel like persistent thrush. The pain never fully left. Eating remained difficult. My sense of taste disappeared. Nothing felt like it was actually healing.

Believing it was shingles, and that months of antiviral and antifungal medications had most likely disrupted my oral and gut microbiome, I did what many people do when answers are unclear. I tried to manage.

With the guidance of my naturopath, I used coconut oil pulling, oil of oregano, and herbal support. I managed this way for five months.

Not healed. Not well. Just enduring and surviving.

I lived in constant low grade pain, continued to struggle with swallowing, and could not taste food properly. There was no diagnosis to explain why my tissue seemed fragile rather than resilient, why everything felt inflamed but never infected in the way it was supposed to be.

By late November, the disease could no longer hide.

My lips began to blister. The inside of my mouth bled constantly. The tissue felt increasingly fragile, as though it was breaking down faster than it could repair.

On my birthday in December, I went to a dentist, still believing I might be dealing with an aggressive yeast infection, candidiasis. When he examined me, he did not hesitate. He told me to go to the ER immediately. He said it looked like Stevens Johnson Syndrome and that it was urgent.

When I later read in my car about Stevens Johnson Syndrome, I knew it did not fully fit.

That condition is typically caused by a severe medication reaction, and I had not taken anything known to trigger it. Still, with the holidays approaching and my symptoms escalating, I went to the ER.

Once again, after 8 hours of waiting, I was sent home with antivirals.

Two days later, I returned. another 7 hours waiting, Again, no answers.

It was not until a subsequent visit that something finally shifted. I was seen by an American physician who had recently moved to Canada. Instead of treating the moment, she looked at the pattern. She issued referrals immediately, to an oral surgeon, a rheumatologist, to an ENT and the local infectious disease clinic.

One day later, I woke up with my mouth in the condition shown in the photo above that finally sent me back to the ER again.

This time, I was admitted.

I was placed on IV fluids. I had already lost over ten pounds from a week of barely being able to eat. Dr. Wallace the oral surgeon performed multiple biopsies. Later, I learned that even before the results returned, he had already voiced suspicion that this was autoimmune in nature.

10 Days later, the biopsies confirmed it.

Pemphigus Vulgaris.

There is an irony here that is impossible for me to ignore.

I am an esthetician. I work with skin every day. I perform chemical peels, treatments designed to create controlled exfoliation, encouraging the skin to shed damaged cells and regenerate in a healthy, supported way. In esthetics, we respect the difference between intentional, guided exfoliation and uncontrolled damage.

Pemphigus Vulgaris operates on a disturbingly similar principle, but without control, without intention, and without gentleness.

In this autoimmune condition, the immune system mistakenly attacks the proteins that hold skin and mucosal cells together. The bonds between cells break down. Tissue becomes fragile. Blisters and erosions form. In many cases, this process begins internally, in the mouth, throat, and voice box, long before anything appears on the rest of the skin.

It is, in a sense, a form of uncontrolled internal exfoliation. Not precise. Not therapeutic. Not healing.

Looking back, the symptoms form a clear timeline:

• Persistent hoarseness that did not resolve

• Progressive throat pain and inflammation

• Painful erosions inside the mouth

• Fragile, raw tissue along the gums, cheeks, tongue, lips, and throat

• Difficulty swallowing and eating

• Loss of taste

• Bleeding oral tissue and blistering lips

• Nail fold inflammation, tenderness at the cuticles, and lifting of the nail plate

• Chronic fatigue, weight loss, and nervous system strain

Individually, these symptoms were treated as isolated problems. Together, they told a systemic autoimmune story.

Pemphigus Vulgaris is rare, but rare does not mean impossible. Because oral symptoms often appear months before skin involvement, it is frequently misdiagnosed as cold sores, shingles, thrush, aphthous ulcers, or allergic reactions. Antivirals and antifungals may temporarily calm inflammation, but they do not address the underlying immune process.

Early diagnosis matters.

Persistent oral sores lasting more than a few weeks, hoarseness that worsens instead of resolving, lesions that bleed or erode rather than heal, repeated treatment failure, and symptoms spanning multiple systems are all signs that deeper investigation is needed. Diagnosis often requires biopsy with direct immunofluorescence (DIF), something not included in routine testing.

I am sharing this not to alarm, but to educate.

I teach my clients to listen to their skin, to respect early signals before damage becomes difficult to reverse. This experience has deepened that philosophy in a way I never could have learned otherwise.

Our bodies speak long before they break. When they are not heard, they raise their voice.

If you feel this information could help someone, someone struggling without answers or being told it is probably nothing, please share it. Early awareness can spare people months of unnecessary pain, fear, and trauma.

If this story helps even one person recognize an early sign, advocate sooner, or receive an accurate diagnosis before prolonged suffering, then this journey has already begun to serve a purpose beyond my own healing.

There is a strange duality that comes with finally receiving a diagnosis like this. On one hand, there is relief. A name brings coherence. It confirms that what I was experiencing was real, systemic, and not imagined. It validates months of pain, confusion, and unanswered questions.

And yet, alongside that relief comes fear.

A rare autoimmune diagnosis does not arrive neatly packaged with certainty. It opens the door to new questions. What does this mean for my long term health. How will my body respond to treatment. What will stability look like. What will need to change.

I am learning that diagnosis is not an ending, but a threshold. It is the moment where one kind of uncertainty gives way to another. The chaos of not knowing is replaced by the vulnerability of understanding what is now required.

As I write this, I am waiting to see a specialist in this condition at Sunnybrook Health Sciences Centre in Toronto on February 17th. I am holding cautious hope that, at last, we can find a way to manage this condition thoughtfully and effectively.

Thank you for taking the time to read my story. Sharing it is not easy, but it feels necessary. If you are navigating unexplained symptoms or standing at the edge of your own medical uncertainty, I hope this offers you both recognition and encouragement.

Answers matter.

Being believed matters. And timely care can change everything.