A first attempt with biopsies

The oral biopsies I had done in January 2024 should have opened a door to answers and understanding of my medical condition. Sadly, they had the opposite effect; sending me deeper into a spiral of misery and confusion.

I’ve learned so much since those early biopsies. If I knew then what I know now, I would have been in a much stronger position to advocate for myself.

If you ever find yourself with oral ulcers that won’t resolve, ask for a biopsy and make sure an experienced practitioner does BOTH a hematoxylin and eosin (H&E) stain biopsy AND a direct immunofluorescence (DIF) biopsy. The sample must be carefully taken right at the edge of an active lesion. Both biopsies are typically necessary to diagnose accurately. Also, ask who will be reading your pathology and make sure they have the expertise to accurately interpret results. These things were not done in my case, and it cost me dearly.

Misleading Biopsy Results

About a week after the biopsy, my dermatologist called and told me I had a diagnosis and it was easily treatable. The biopsy came back as a cutaneous herpetic infection – in other words… cold sores. She told me I should start a daily antiviral and I’d be fine in a few weeks. My initial reaction, ‘Gross! How? I’ve never had a cold sore in my life? Aren’t cold sores supposed to go away on their own? Why are they acting like this in my body???’

The dermatologist told me most adults have been exposed to HSV1, the virus that causes cold sores and that perhaps my repeated use of prednisone allowed the virus to emerge from hiding. I accepted the diagnosis, even though it didn’t seem right to me. I went home and dutifully started my 1g a day doses of Valtrex. I tapered off the steroids and waited to magically heal.

It didn’t happen. The sores that had mostly been limited to the interior lining of my mouth advanced viciously. The whole top of my tongue was an open ulcer, my esophagus lining broke apart, the insides of my cheeks and my gums cracked and bled. It was like being the victim of a Biblical plague.

Things go from bad to worse

By the end of January, I started developing deterioration of mucosal tissue elsewhere on my body. Mucous membranes exist in your oral cavity, nasal passages, eyes, ears, reproductive tract, and digestive tract. I won’t go into the gory details, but I began suffering from ulceration and sores in every unmentionable place imaginable.

I spoke to my rheumatologist and dermatologist. They both agreed that a month of Valtrex should have put the HSV1 virus back into dormancy. My rheumatologist wondered if I had an ‘unusual case’ of cold sores and thought that maybe an infectious disease specialist should be my next stop. She also pointed out that the cold sore virus (HSV1) can spread to the genitals, and suggested I see my ob-gyn and have swab cultures and blood tests done. I made an appointment for later that week.

The dermatologist bluntly suggested that something might be causing me to have an immune deficiency, and that something impacting my overall health made me unable to clear cold sores like a normal person. I left there feeling stunned, ‘Omg – she thinks I have AIDS.’

A traumatic visit to the ob-gyn

The appointment with my ob-gyn was one of the worst days of my life. I’ve been happily married for 25+ years. I’ve never had any kind of sexually transmitted infection in my life. I was mortified and terribly frightened. My ob-gyn came striding into the room, certain that I had a yeast infection (something else I’ve never had before) or maybe herpes – like the other doctors suggested. She did the exam and swabbed my active ulcers, but I noticed she was in a bit of a panic over what she was seeing. She left the room and came back with a textbook opened to a page about gynecological cancers. She strongly suggested I go to UVA gynecological oncology for biopsies as soon as possible, after all – she knew a woman who had to have her entire vagina cut out and surgically reconstructed using tissue from her thigh. I basically collapsed off the exam table and started freaking out. I called my husband, who through some sixth sense he felt, was already waiting in the parking lot of the office. He came in and held me while I sobbed and sobbed and sobbed.

When I got home, I called my rheumatologist and asked if she could test me for anything else sexually transmitted (beyond herpes) that could somehow cause sores and ulcers. She tried to reassure me and said ‘You don’t have these things, but if it gives you peace of mind, I will order the tests today.’ She ran tests for HIV, syphilis, hepatitis (all strains), plus a deeper look at my immune system function. Everything came back clean and healthy. I didn’t have any of these diseases, and my overall immune system was still producing all the normal levels of antibodies.

Back to the drawing board

A few days later, the gynecologist’s cultures came back – no herpes at all. Another provider in the same practice thought the ulcers looked like a condition called lichen sclerosus – an autoimmune disease that impacts genital mucosal tissue, but NOT oral tissue. They didn’t want to consider that the ulcers in my mouth were related to the ulcers on my genitals. This is just one example of the tunnel vision I experienced when working with specialists.

I called my rheumatologist and gave her the update. No wonder Valtrex wasn’t working! Clearly, the root cause of my issues was being missed. We decided to add hydroxychloroquine to my medication line-up. It has beneficial effects in modulating the immune system, and is used for many autoimmune conditions. Even if no one knew what I had, there was a chance this medication could help. I turned out to be quite allergic to it, so I had to stop.

Back to dermatology

I went back to see my dermatologist for an appointment and likewise shared the the news about my gynecological tests not showing herpes. The swab cultures are considered the gold standard for diagnosis, so she had to agree that her oral biopsy and the subsequent herpes diagnosis were wrong/misleading . She started me on a topical steroid called Clobetasol. She told me there are some autoimmune conditions that cause mucosal ulcers that aren’t picked up by a biopsy. At this time, I had no idea she had not performed the correct biopsies in January.

I went home with my tube of steroid ointment and within a few weeks, I started feeling a little better. The ulcers in my mouth didn’t go away, but they eased. The large painful ulcer my gynecologist had swabbed completely went away after about a month of topical steroid use.

A new problem in the mix

The newly vexing issue around that time was that I had started experiencing bleeding and severe pain upon using the bathroom. I had already had a recent colonoscopy, but the rheumatologist started wondering if I might have an atypical presentation of Crohn’s Disease. She referred me to gastroenterology. After about a six week wait, I saw the gastro. She did an digital rectal exam, looked at my imaging, and talked to me about my symptoms. She said the bleeding wasn’t cancer or Crohn’s, but that I clearly had an anal fissure. Seriously, how!? She did not believe it to be involved with my ‘autoimmune mystery’ and prescribed a calcium channel blocker ointment and sitz baths. She said if it didn’t heal in eight weeks, I would likely need surgery. Seriously… anal surgery??? What other indignities was I going to have to endure?

It did not heal. In August, I landed in the office of a local colorectal surgeon. He suggested that my ‘fissure’ was not healing because I was using steroids daily. He also did not believe that the issue had any autoimmune origin. He scheduled me for surgery, but cautioned me that my steroid use would make me more prone to negative outcomes, like fecal incontinence. Fabulous.

Something kept poking at the back of my brain, ‘This isn’t right. You shouldn’t do this surgery.’ I ended up canceling the surgery, and asked for a second opinion at UVA. I’m still technically waiting for that appointment, but depending on some other moving pieces, I’m not sure if I’ll keep the appointment.

If you’ve read to this point, it’s a lot. And, it’s not even over.