Getting a Lip Biopsy Test for Sjogrens Syndrome – My Experience

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This is a needlessly detailed post.  Below, I talk about lots of things, including describing pain after the lip biopsy procedure, and also some level of distress I felt during the procedure itself.   But, let me just get this out of the way, especially if you are someone like me, who was terrified to have this procedure done:

My lip biopsy was totally fine. My lip was sore for about 8 days, but nothing that interfered with my daily life. I was even able to eat normal food. I’d say the soreness was about a 2 or 3 on a scale of 1-10.  And that was mostly just when something touched the incision.  

Anyway, I just wanted to get that out of the way, in case you’re looking for a bottom line assessment of the procedure.

Why a lip biopsy? Some background

For those of you that follow my blog regularly, you might recall that, back in May 2018, I had a somewhat alarming annual physical. You can read a quick summary backstory below, or if you want more detail, you can check the update to my annual physical, and the post I wrote about when doctors started to suspect Sjogrens Syndrome.  Or, if you prefer to read just the lip biopsy experience, feel free to scroll down tot he next heading.  

Okay, the summary backstory:  My platelets were exceedingly low at my physical in May 2018. After some initial panic, a hematologist ruled out anything serious after a series of additional tests within a matter of days.  But, the hematologist, along with a rheumatologist in a subsequent appointment, were leaning toward a diagnosis of Sjogrens Syndrome.  I had started to experience dry eyes about a year prior to the low platelets issue, so the symptoms fit.  

However, confirmation of Sjogrens would require a fairly invasive procedure known as a lip biopsy, which my rheumatologist and hematologist  recommended. An ENT doctor would cut out several salivary glands from my lower lip for testing.

This post focuses on the lip biopsy that I had done on the second day.

 

The Lip Biopsy Procedure

On the day of the procedure, I was a huge bundle of nerves and more nerves. When the time comes to meet with the ENT doctor, she went over the procedure, including the risks.  She said that the entire procedure would take about 5 to 7 minutes.  

My lip biopsy tray before the procedure

They lowered the examination chair, similar to a position you would be in for a dental exam.  The ENT doctor put a sterile frock on my chest, and an assisting doctor stood behind my head, and put a moistened pad of some sort over my eyes, serving as a blindfold.  The ENT said that she was about to numb my lip, which she said would feel like a pinch followed by about three seconds of burning.  

I felt the pinch, and holy hell, it definitely burned.  After that, I let out a little whimper of pain, and in just a few seconds, my lip was totally numb and felt enormous.  

I was still blindfolded, and the ENT said she was going to start the procedure.  

The room went quiet as she began, but within an instant, I heard the doctor let out a small sound.  It sounded like a distressed “mmmmmm.” That sound, unfortunately, set me off on a wrong panicked tone for the rest of the procedure.  

I tried to recite trivia facts in my head in an effort to distract myself.  

Then I got a whiff of a really unsettling smell.  It wasn’t a particularly bad or putrid smell, it was just very unusual. It didn’t smell like any sort of antiseptic either.  I wasn’t sure what it was. I kept trying to just work through it and lay still. But the smell was adding to my anxiety. (The nurse told me after the procedure that I was likely smelling all the blood). 

It was exceedingly quiet in the room, and then I could hear this “snip … snip … snip” sound.  I was picturing them cutting out my glands with scissors. (I later learned that I might have just been hearing tweezers, not scissors, coming together to remove the glands.)

Between the unsettling smell and the sounds, I started to get kind of woozy.  

My heart was pounding, and then my legs started to tingle.  So,  without trying to move my head or mouth much, I said out loud, “I think I’m getting a little light headed,” then I reached out for my husband’s hand.  

Both doctors assured me that I was doing just fine, and reminded me to take slow deep breaths.  I continued to do that, and then I let go of my husband’s hand because I think I was squeezing it so hard it was making me feel even worse.  

The ENT asked me a few more times how I was doing, presumably to make sure I hadn’t fainted.  Then, she said, “we’re all done! I’m going to get a nurse to check your blood pressure and give you an ice pack to help with the lightheadedness.”  

Then there was a pause.  She continued, “All we have to do is stitch you up now!”  

I was like, “Ugh!  Done means done!” So, I waited another minute or so for her to stitch me up.  In the meantime, the nurse came in and put a blood pressure cuff on me, and activated an ice pack which she put behind my neck.  She noted how much I was sweating, and the ice pack felt divine. Ken later told me that he saw me breaking into a sweat when I announced that I was feeling lightheaded.  I hadn’t even noticed at the time, but I now realized that I was soaked from sweat.  

My blood pressure was normal, so the ENT just said to sit there for a while.  The nurse also brought in some ice water with a straw.  

I never did actually pass out or faint during the procedure, which is a good thing to me!  But, it was nice that they were taking extra care to make sure I was okay.  

Still numb, it was time to head back home, as the lip biopsy was the last procedure scheduled in my series of appointments.

 

Immediately after the Lip Biopsy

For about 20 minutes, I couldn’t feel anything on my lip, and it still felt really big.  I went to the restroom and tried to look at the inside of my lip in the mirror, but I was too afraid of ripping open the stitches.  I just left it be.

As we left the ENT office, I was talking to Ken, and I told him about the distressed “mmmmm” sound I heard the ENT doctor make at the beginning of the procedure.  Ken said he had heard the same thing! I thought it was just me and all my anxious heightened awareness. He said, “They really need to be more mindful about the noises they make!”  I concurred.  

Who knows, maybe she was just exhaling or humming or what.  

On the car ride home, my lip started to hurt.  And it was hurting pretty badly. The entire area between my lower lip and the tip of my chin was throbbing.  I was annoyed because the ENT doctor said that pain, if any, would be very minor, and would feel similar to biting my lip too hard.  

This was definitely more painful than that.  I’d say about a 4 on a scale from 1-10

But, by the time I got home, about an hour later, the pain had subsided from that level 4.  

It made me realize that I don’t think I was feeling the pain from the incision.  I think the sensation was just the numbing agent wearing off.

The Level 4 pain I was experiencing earlier reminded me of a specific sensation I’ve experienced before.  

Have your hands or feet ever gotten like really exceedingly cold?  To the point that they start to get pretty numb? I had that happen to me one time on a ski trip in high school.  I was skiing without my gloves for several hours for some reason. Then, when I took a break in the lodge, I ran my hands under warm water in the bathroom sink.  That caused my hands to hurt SO BADLY. I’m no doctor or physiologist, but I’m guessing it has something to do with blood vessel constriction or circulation resuming. Of course, it was temporary, but that painful sensation on my cold hands has just always stuck with me.

Anyway, that was pretty similar to the sensation I felt in my lip in that first 90 minutes or so post-surgery.

The night of the procedure, my husband picked up some Panera for us for dinner. Doctor’s orders had been to stick to soft foods, so I just had some mac and cheese and tomato soup.  

 

Days 1 and 2 Post-Lip Biopsy

After that more intense sensation, the pain did subside to more of a general “soreness.” The most annoying part that I was experiencing was the stiff sutures.  They were rubbing against the gum line under my lower teeth, causing additional irritation.  

Again, none of this pain was anything more than a 2 or 3 on a scale of 1-10, but it was still annoying.  And still definitely more than a “bit my lip too hard” pain that the ENT doctor described.  

I did not expect that my chin was going to hurt as much as it did. Like from the outside of my mouth.  Anytime I went to wash my face or put lotion on my face, I had to use very light pressure on my entire chin area, because it was pretty sensitive to touch.  It’s worth pointing out though that I didn’t notice it unless I was actively touching it or drinking something. 

 

Day 3 Post-Lip Biopsy

Two days after my lip biopsy, I started to notice there was one particular part of my lip that was feeling exceptionally painful to the touch.  For example, when a piece of food would brush on it, or when I’d touch my tongue to it, it would hurt more than other parts of the incision.

It’s worth noting that, at this point, I still had not had a good look at my incision.  The incision was actually much “lower” on the inside of my lower lip than I had expected.  And, any time I would try to pull out or otherwise pry open my lower lip to get a good look at the incision in the mirror … Well, it hurt.  And, of course, I didn’t want to pop a stitch or rip open the incision simply by trying to get a better look.  

However, I was so curious why that one particular spot was hurting me so much.  So, I pulled down my lower lip as much as I could. I gasped a little bit when I saw a white patch surrounding one of the sutures.  Was it an infection setting it? It was the spot that was hurting more than the rest of the incision. The white patch was very small, perhaps slightly smaller about the circumference of an eraser head.  

But, I had been taking amoxicillin, prescribed by the ENT, to prevent an infection.  

Anyway, it was late on a Friday night, and I just figured I’d keep checking on the white patch, and if it showed any sign of getting worse or growing larger, I’d head to urgent care or the ER over the weekend.  

 

Day 4

When I woke up, the white patch was still there, and that white patch spot was still hurting more than other parts of the incision.  However, the patch had not grown or changed colors, nor was it oozing or anything. So, I took that as a sign that, even if there was an infection, that it wasn’t spreading.  

Pain is about a 2 or 3 on a scale of 1-10.  But, I’m able to eat normal foods. I just focus on chewing toward the back of my mouth.

 

Day 5

The white patch was completely gone.  I’m still a bit sore though, especially when I touch that spot on my chin.  Perhaps the saddest effect of all of that is that I don’t want my husband to kiss me on the lips except for the slightest peck.  Otherwise, it hurts.

There is also a very teensy sliver of numbness on the outside of my lip.  I’m not exactly sure how to explain the location. But, you know where your cupid’s bow is on your upper lip?  This was like that, but the middle tip of my lower lip.  The numbness extended ever so slightly onto my upper chin.  I only really noticed the numbness when I put a hot or cold beverage to my lips.  The sensation of the beverage crossing over those points were more “muted” than the rest of my lips.  

 

More Updates

 Day 6: Soreness level is the same.  I still have the same tiny spot of numbness.  I’m getting very annoyed with my stitches. I’m continuing to feel that same spot of bad soreness on my chin.  It mostly only hurts when I’m putting on lotion or makeup, or putting a drink to my mouth. But, there is still a general sense of light soreness and discomfort even when I’m not touching that spot.  

I’m beginning to think that my soreness might be related to my stitches.  Perhaps they’re tied to tight or something?  

Day 7: My stitches have not dissolved.  The instructions from the ENT doctor were to have them removed by my primary care doctor or dentist on Day 8 if they had not dissolved.  So, on Day 7, I call to make an appointment for the next day. I am downright giddy at the idea of getting out these damned stitches.  

Day 8: Stitches are removed!  Okay, I’m not going to lie, getting the stitches removed was actually a more painful experience than I expected.  I’ve had stitches elsewhere on my body in the past, including my thumb, my eyebrow, and on my abdomen after having a mole removed.  Stitch removal was never painful. It’s just a snip snip and the thread pulls out. Well, there was a significant amount of tugging on my lip during the stitch removal.  I’m not sure what was going on, but it felt like the doctor had to pull some of the knots through the skin or something. Anyway, I didn’t really care. I was so anxious to get those stitches out.  

On my way home, I start to feel an intense relief in my mouth and in that spot on my chin that had been so sore.  

Day 9: Pain is pretty much gone now.  I’m fairly convinced now that most of the pain I had been experiencing was related to my sutures being too tight or something.  I still have some residual numbness in my lower lip and the middle of my chin.  

Day 10: Lip biopsy results are sent from the lab.  Confirmed for Sjogrens Syndrome. (For reference, any focus score greater than 1.0 means positive for Sjogrens).

Days 11-21: Zero pain. But still some minor numbness.  I don’t even notice that it’s numb unless I touch something to my lip or chin, like a cold soda can.  

Day 21:  I realize that those numb spots are gone now.  I’m not entirely sure when that happened. It was such a gradual dissipation of numbness that I didn’t even notice when it was fully gone.  

I have zero effects now from the lip biopsy. No pain, no numbness.  I can feel a very slight scar in at the incision, but that’s only if I’m actively looking for it.