Tuesday, December 18, 2012

Giving 'em Lip - Sjogren's, Salivary Glands, and More Fun

Image Source

A few months ago, I developed what l thought was just an ulcer on my left inner low lip. Mouth ulcers can occur with autoimmune disease and I have gotten them in the past so I thought little of it.  However, unlike other ulcers I have had, this one never went away in the following weeks.  It would grow and shrink, but it didn't completely disappear. It became more of a problem when it got in the way of chewing and I bit down on it by mistake.  It was not a very pretty picture and I was left with a multi-colored purple and red ulcer. (Apologies for the overly graphic descriptions, but I know they help me some times to compare what I have to what others' describe.)

In both October and November, I did show my mystery mouth ulcer to one of my physicians. He didn't seem very concerned and suggested a baking soda rinse to see if that would make it go away. Unfortunately, the baking soda rinse didn't do the trick and when I was back in his office he decided to take a closer look and feel this growth. The ulcer was hard and he said needed further investigation--maybe even a biopsy --to find out what was going on.  Like most patients with numerous medical conditions, my first thought was "oh no not another medical problem!"

My personal preference is not to have anything invasive done unless it is absolutely necessary even if it was what many doctors would consider a minor procedure. I'd love to hear what happens to others, but whenever I have "minor" procedures I seem to get all the "unexpected" side effects.  I'm convinced it's because of my immune system's malfunctions, but most doctors just don't take it into account when ordering invasive tests. Of course, I tell them and they say "don't worry" and then it happens to me. Yep, I'm the one who still has a numb lip from my Sjogren's biopsy. So instead of agreeing to go ahead with the biopsy, I  figured I wanted to see what my ENT might say later in the week at an already scheduled appointment.

Luckily, my ENT physician identified the cause of my mystery mouth sore immediately. It actually wasn't a sore or ulcer at all, but a cyst or mucocele cause by a blockage of minor salivary glands in my lip. The salivary glands are involved in the inflammatory process of Sjogren's syndrome, which is why many of us with Sjogren's have dry mouths and sometimes painful and enlarged salivary glands. (You can see the picture above of salivary glands.) I was aware with Sjogren's that the major salivary glands the parotid, submandibular, and sublingual glands can become blocked or swollen, but it turns out that we also have somewhere between 600 to 1000 minor salivary glands located throughout our mouths in places like our lips and inner cheeks. These minor salivary glands can also be impacted by Sjogren's, which is apparently exactly what is happening to me.

For now, the ENT doctor said we can wait and see if the cyst resolves with increased hydration and warm salt water rinses, but most likely I will need to have it removed.  Even though it is considered an "easy" procedure, I am very much hoping that it will go away on it's own and to avoid having any sort of cutting of my lip.  If folks have had experiences getting rid of these without a procedure I would LOVE any suggestions.


  1. I know whenever anything comes up, I freak out about "ANOTHER" medical problem. And I am definitely the one in a million with all the unexpected side effects. I know how you feel! I do hope it goes away, and that if you do need the procedure that all goes smoothly.

  2. I have this same thing on my lower lip. I've had it about 8 weeks. I'm so frustrated. My MD told me I just need to leave it alone and it will go away in about 2 weeks. It hurts to talk and eat. I will try the salt water rinses. It's not going away and it's so very frustrating and painful. HELP

  3. I have had a mucocele on the inside of my lower lip that got so big I bit down on it too. My doctor recommended removal. It was scary but very simple. It healed well and I don't have any scars. If another one appeared.... I would chose to have it removed as well. It is much easier than trying not to bite your lip every time you eat!