A woman looks out from inside a magnifying glass with a sad expression.

The Results of My Lip Biopsy

A few minutes after my lip biopsy to test for Sjogren’s Syndrome, the anesthetic started to wear off, and I was in terrible pain. A headache set in as well. I had just had umbilical hernia surgery a month before, and this lip biopsy pain was comparatively worse than when anesthesia wore off from my hernia surgery. It was throbbing and consuming. I was not prepared for it.

A slow healing

My daughter was with me, and we hurried to get something to eat so that I could take some Ibuprofen. I opted for soup and some chicken salad, as the doctor had advised that I eat soft foods for about a week. I also started icing the area, and within about an hour, the pain had eased some. I expected to be up during the night in pain, but I took some medicine before bed, and it really didn’t bother me during the night. I felt a lot better the next morning, but still sore and numb.

Healing felt slow over the next week. It seemed I had made a lot of progress from day one to day two. But my mouth really felt about the same for another week. I continued to ice the area and take pain medication for that week. I also rinsed my mouth with warm salt water, as well as Gly-Oxide, an over-the-counter antiseptic oral cleanser.

I waited for a couple of days to even look at the site of the procedure because I didn’t want to pull at my lip. My talking was limited because talking hurt. It even hurt to smile. The area was swollen, and a week out from the procedure, I was still numb. I assume the doctor hit a nerve and that it would need time to regenerate.

Feeling frustrated and worried

When I finally looked at the site, it looked like a hole in my mouth that was scabbing over. The biggest irritation was the numbness. The sensation is hard to describe, but it was almost like there was a pathway going from the top of my lip down towards my chin that I had no control over. If I tried to move it, it was as if some other force was pulling my lip back. I had expected the numbness to wear off, but it stayed with me.

I felt a lot of things during this time: frustration that I had to go through all of this, worry that I put myself through something that would have lasting negative effects (some people’s numbness does not go away), and fear that it was all for nothing – that the results would be negative.

The findings

Well, that is exactly what happened. Results showed “an essentially normal salivary gland.” That’s what the doctor’s assistant told me. My heart dropped – I did this for nothing. I had been hoping for a positive diagnosis so that I could start a medication that would potentially help me. I would need to follow up with my rheumatologist and get her thoughts, though I didn’t know if she would just monitor me or go ahead and make a diagnosis based on my symptoms without a positive biopsy.

I struggled to process my feelings. I was definitely down. But maybe I should feel the opposite. Should I feel glad that I might not have Sjogren’s? The results were confusing because I had so many Sjogren’s symptoms.

Trying to find the bright side

As of my writing this, it had been three weeks since the procedure. I have had time to process my feelings more, and I have scheduled a follow-up appointment with my rheumatologist. The numbness is still present but subsiding. I am trying to see the bright side, and I am continuing to do what is within my control. I’m not sure what my rheumatologist will recommend, but because my diagnosis is unclear at this point, medication may not be the advised route.

I am choosing to see this as a blessing in disguise. Had I had a positive confirmation, I probably would have chosen to start on hydroxychloroquine, the immunosuppressant my doctor had mentioned at my first rheumatology visit. The drug can have some negative side effects. In the meantime, I have decided to try an autoimmune protocol diet to see if I can eliminate some symptoms through diet and lifestyle alone. I’m crossing my fingers and hoping for positive results.

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