Avoiding the painful consequences of dental cleanings with hEDS

A visit to the dentist can make anyone nervous. That’s certainly true for me, especially for my biannual cleanings. Almost every time I leave the dental hygienist’s chair, I don’t just have clean teeth; I also have a mouthful of painful micro-cuts, excessive bleeding, and an outbreak of awful canker sores that are no fault of my wonderful dental team.

It’s all thanks to my hypermobile Ehlers-Danlos syndrome (hEDS). Because our teeth are composed of connective tissue and collagen, I’ve dealt with a lifetime of dental health issues.

It’s not the dentist or the procedures themselves that make me so nervous; it’s the unknown outcome and the healing process I’ll have to deal with afterward that give me unease. For years before my hEDS diagnosis, my dental team was completely puzzled by my excessive bleeding during routine procedures, cleanings, and extractions. I always wondered why my entire mouth and jaw would be in such pain for days after dental appointments.

Eventually, I discovered that it was because of this inherited connective tissue disorder and faulty collagen production. In fact, I have yet to find a single body part that remains unaffected.

So, while waiting for my next dental cleaning appointment, I thought long and hard about what additional details I could provide my dental hygienist about my personal health to have the most comfortable experience possible. Typically, when I have a routine cleaning, my otherwise healthy gums will become incredibly painful from the tools being used to do the cleaning job. Anywhere inside my mouth where a bitewing X-ray holder was placed — either against my gum tissue or the floor of the mouth — would leave painful canker sores. This time, though, with my triggers identified, I was determined to advocate for a less painful dental experience.

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Being better prepared

When the day arrived for my cleaning, I walked into the appointment with big hopes for a less painful procedure. As I lay back in the dental chair, I chatted away with my new hygienist. I let her know that, more often than not, I always leave with a week’s worth of painful tissue issues, despite having the sweetest, most well-intended hygienists.

To my surprise, we discussed hEDS in great detail, including how sensitive it makes my mouth. I felt so comforted by her knowledge and reassurances that she’d take extra care to avoid damaging or overly irritating my tissue. To do that, she allowed me to take breaks as needed, which included closing my mouth for a moment so that I wouldn’t spend the next three days with jaw popping due to issues with the temporomandibular joint.

My hygienist also used more manual tools than electric ones, which helped her apply less pressure around my delicate gum line. I have to say, though, that there’s really no way to get away from the pain of string flossing when it’s outside of your control. At home, I prefer using bamboo floss picks so that I can control the force against my gums.

Lastly, when it was time for the final polish, I was given the option of a fluoride-free paste that helps reduce the typical mast cell activation syndrome (MCAS) hyperreactivity I normally have due to fluoride prophy pastes. MCAS is a pesky sidekick to my hEDS. Before I pinpointed some of these specific hypersensitive triggers, I’d leave my cleanings with an awfully irritated mouth. I’m happy to report that I didn’t experience any canker sores or mouth soreness after that cleaning! It’s confirmation that a little extra communication goes a long way.

In hindsight, I think it was very beneficial for me to discuss my health status in detail with my dental team, and to ensure that special attention, awareness, and treatment adjustments are made for my unique, fragile mouth during every dental appointment.

I’m grateful that after years of pain, discomfort, slow healing, and fear of dental work, I’ve finally become knowledgeable enough to articulate what this genetic condition is and how it affects me, and to actively work toward resolutions that improve treatments both during and after these appointments.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.