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New Report on Temporomandibular Disorders: Priorities for Research and Care

Over a year and half ago, the National Academy of Medicine (NAM) began the most comprehensive study ever undertaken on Temporomandibular Disorders (TMD). The study assessed the current state of TMD research, education and training, the safety and efficacy of clinical treatments, and associated burden and costs.

Statement by NIDCR Acting Director on the National Academies of Sciences, Engineering, and Medicine Report on Temporomandibular Joint Disorders

I am pleased to announce the release of the National Academies of Sciences, Engineering, and Medicine (NASEM) report, Temporomandibular Disorders: Priorities for Research and Care. As underscored by the comprehensive report, temporomandibular joint disorders (TMJDs) are a diverse and still poorly understood set of complex, painful conditions affecting the jaw muscles and tissues, temporomandibular joints, and associated nerves. Clearly, there is much more to be understood, and these conditions continue to confound medical and dental health care providers and researchers.

Have you seen the film Dark Waters?

The Film. Dark Waters is about attorney Robert Billott's real-life 20 year legal battle against DuPont chemical for releasing toxic waste - perfluorooctanoic acid, or PFOA - into Parkersburg, West Virginia's water supply, with devastating health effects on the townspeople and livestock. PFOA, also known as C8, is a man-made chemical. It is used in the process of making Teflon and similar chemicals known as fluorotelomers.

Online TMD Diet Diary Research Project

Online TMD Diet Diary Research Project The TMJ Association received the following request from Professor Justin Durham and his research team at Newcastle University. We encourage TMJ patients to participate in this project as it is an under researched

Drug Induced Bruxism

The authors of this article state that orofacial movement disorders (bruxism) are treated typically by dental professionals and not by those specialists (neurologists) researching and treating the other movement disorders (Parkinson's disease, Huntington's disease, tremors, etc.). Again, this is more evidence of the complexity of TMD and the need for multidisciplinary research and treatment in TMD.

Temporomandibular Disorders and Sexual Intimacy

  • Jan 27, 2017

A recent posting on the TMJA website included the following request: "I wonder if you could include something in a future newsletter about the romantic/sexual side effects of TMD which I feel aren't talked about much but are pretty relevant." (http://www.tmj.org/site/page?pageId=152). She went on to describe some of her own experiences. The posting resulted in a number of responses expressing similar frustrations, relief that the issue was now out in the open, and that people had come up with some creative solutions.

TMJA President and Co-founder Terrie Cowley wrote an overview article about TMD in this newsletter in 1994, specifically referring to sexual effects. She wrote, "An inherent problem experienced by people with TMJ pain and dysfunction is the effect the illness has on the sex lives of the patient and partner. The once pleasurable sensations of being touched, hugged, kissed, having one's face stroked, and all the things that are an integral part of lovemaking and affection sharing, are now for many excruciatingly painful. Spouses frequently say they are hesitant to make sexual overtures for fear of physically hurting the sick partner or appearing insensitive to his or her pain." (http://www.tmj.org/site/page?pageId=26).

Specific Concerns Expressed

In a number of online discussions, people have mentioned problems in a number of intimate activities related to their TMD, including open mouth kissing, oral sex, orgasm, intense intercourse, and even having conversations with a partner.

Most of the concerns were from women and were about pain experienced during oral stimulation of their partner's penis, especially if it was prolonged or if penetration was deep. Oral sex or kissing might also cause jaw popping which, at the very least, was embarrassing and might break the mood of intimacy. Opening one's mouth wide during orgasm was also mentioned as a problem.

In many cases, partners were very supportive and patient, and in others, relationships were adversely affected by these problems. For example, a partner may assume that his wife or girlfriend is having an affair or that she is just using her TMD as an excuse for not performing oral sex on him.

Some people mentioned that they were not able to get help from health professionals or were even reluctant to bring up the issue with them out of embarrassment, especially if their physician or dentist was an older man.

Some people experienced pain of a more general nature, so that vaginal intercourse or other types of touch were uncomfortable as well. Other women reported being clinically depressed, which can have its own impact on sexual interest or performance. At times, pain medications or other medical treatments affected level of energy or sexual interest. If concerns were serious, fears of pain too anxiety provoking, or if relationships became distant, sexual activity may have ceased altogether.

Specific Solutions Offered

A number of people described very specific solutions that they and their partners had found helpful. You will note that, in every case where successful solutions were found, mutual concern, experimentation, flexibility, communication and compromise were essential elements for these couples.

For example, after someone expressed concern that his girlfriend could not perform oral sex on him because of her TMD, a woman responded: “Poor gal. I have TMJ also and it is very painful at times. When I am having a rough time with it, my jaw will often lock up or dislocate itself as the swelling will push it out of place. Quite frankly, you may have to learn to live without having her perform oral on you. In the mean time, you can try different positions to reduce the stress on her jaw, neck, (and) facial muscles. Try sitting on the edge of the bed with her kneeling before you so that she is not tipping her head back as much. Never push her head down and for heavens sake hold still and let her control the motions.” (http://forums.plentyoffish.com/datingPosts14965480.aspx).

Another woman responded to a similar concern, saying: “Work with your boyfriend to find something else that is as pleasurable (or more) for BOTH you and him that doesn't cause you pain. I know you want to please him but if he encourages you to do something to him that causes you pain, then it's not worth it.” (http://answers.yahoo.com/question/index?qid=20090819092956AA0jdJx)

One woman on another site gave a very detailed discussion of how she handles difficulties having oral sex with her husband. After providing a number of specific suggestions, she writes, “Having TMJ is frustrating, and it does take some creative thinking for us gals to be able to overcome this obstacle. Some women with severe cases aren’t able to give oral sex at all. I’m sure your husband will understand if you need to try some of the above suggestions. He doesn’t want you in pain while you are trying to give him pleasure. Talk to him about it and see what you two can work out together.” (http://christiannymphos.org/2008/11/12/oral-sex-and-tmj/)

Although most of the concern in these discussions is related to fellatio, which typically involves a woman taking a man's penis into her mouth, it is possible that TMD might cause problems in sexual expression for same sex couples as well.

GENERAL GUIDELINES

Since peoples' health status and symptoms are clearly different, it would be impossible to propose specific solutions that would help everyone, including the examples given earlier. However, there has been a substantial amount of work done with people experiencing various physical disabilities, chronic illnesses, pain, and even the normal effects of aging, such as decreased erectile capacity, insufficient lubrication, and other consequences of menopause. This work suggests some general guidelines for addressing such problems.

As mentioned earlier, virtually every principle I would invoke for addressing this issue was contained in the various postings about TMD. People can often address these problems successfully if they have a good relationship, communicate well, and are willing to try variations on their lovemaking styles.

How Does One Define "Having Sex?"

Sexuality has been difficult to talk about in our culture, and people often assume that there are certain things that people should be expected to do as part of a sexual experience. There are no "shoulds," when it comes to sex, however, and there is nothing wrong with not feeling comfortable with certain kinds of sexual expression. This is true for any couple, not only for those experiencing medical problems. Some people have had traumatic sexual experiences or, for whatever reason, just feel uncomfortable with certain kinds of sexual activity.

In their award winning book, Sex Matters for Women, Sallie Foley and her colleagues (2012, pp. 345-346) express their view that a woman does not have to “perform oral sex in order to prove that she's attracted to, or in love with, her partner. There are numerous other ways for partners to pleasure each other. In healthy sexuality, choices such as whether or not to practice oral sex are made through open communication and by partners' honesty with each other and with themselves.”

When physical limitations make certain sexual acts difficult or impossible, having a flexible definition of sex is even more important. As Kroll & Klein (2001, pp. 51-52) point out, “it is wise to ignore the "marriage manual" formula, which views some sexual activities as foreplay, some as afterplay, and only penis-vaginal penetration as ‘the real thing.’ Instead, sexual expression should be regarded as an individual experience without rules or scorecards with the only rule being to provide pleasure for both partners."

In addition to varying techniques, as suggested earlier, some people find that they are more or less comfortable being sexual at certain times of day, especially if fatigue is an issue or if medications affect levels of interest, arousal, or pain. If oral sex is desired but just not possible, there are sex toys, such as the Fleshlight (www.fleshlight.com), that may be used by both partners to provide pleasurable stimulation.

A satisfying sexual relationship may mean different things to different people, even under normal circumstance and, as in any aspect of a relationship, compromise is a critical element (Viorst, 2003, pp. 256-262).

Communication and the Myth of Spontaneity

Kaufman et al. (2003, p. 3) remind us that one of the great myths of sexuality is that it must be spontaneous. Each person is supposed to know instinctively what the other wants and needs. They suggest, however, that we are perhaps “willing to buy into the myth of spontaneity because talking about our desires is difficult. It's risky and makes us feel exposed and vulnerable, and often vulnerability is equated with weakness.”

A colleague, who I will call Samantha, wrote that she “had a mild form of TMJ in my late teens that had to be corrected with a mouth piece and when I would be kissing my boyfriend for long periods of time my jaw would lock and sometimes pop and it was not only distracting and uncomfortable but also ‘creeped’ him out a little at times. And a few times I had to figure out a way to unpop my jaw without him noticing so I felt less embarrassed.”

Samantha is now a medical social worker who counsels people with chronic illness. When I asked her how she would handle such a situation now, given her professional training and life experience, she said, “If I was still experiencing this problem, I would disclose prior to becoming intimate with the person. I might say ‘I have a condition called TMJ which can affect my jaw’s ability to open and shut comfortably and/or smoothly. Sometimes I have a lot of discomfort as well. When we kiss or become intimate, my jaw might lock up and I may need to take a moment to get comfortable again. There also may be times where my jaw is just uncomfortable and a lot of kissing or anything that would require me to open my mouth for a long period of time might not be possible. However, if this happens, I will let you know so we can talk about other ways we can be intimate.”

A helpful practice implied in Samantha’s comments is what may be called “behavioral rehearsal.” It is often helpful to practice, either alone, or with a trusted friend or family member, what one might actually say to a prospective sexual partner about any difficulty that may arise. This is likely to make it easier to communicate more comfortably in an actual sexual situation.

Getting Outside Help

It is sometimes helpful to seek the advice of others who have experienced similar problems or who are trained to assist others in making necessary adjustments to their sexual style. I am a great believer in “bibliotherapy,” and would recommend consulting the books and discussions already cited, as well as other publications that may be helpful. For example, Zola (1993) has written a very inspiring chapter describing how two disabled people, establish a very meaningful sexual relationship with each other for the very first time.

Unfortunately, many health professionals are neither comfortable nor trained to assist people who are experiencing sexual difficulties of any kind. Seeking help from a qualified sex therapist may be a good way to begin. He or she would take a thorough history of both members of the couple, and could offer guidance in making any necessary adjustments. A sex therapist would also be aware of medical professionals with whom he or she had established good working relationships, and who were comfortable working with sexual issues.

Maintaining a Positive Attitude

Kroll and Klein (2001, p. 58) share the wisdom and experience of someone they call Ed, who was quadriplegic. “My best advise (sic) to other disable people and their lovers is to concentrate on mutual pleasure, trust, and patience. Accept your physical limitations without complaint, and adapt your physical techniques to meet your partner's needs. Be positive about sex, and above all, hang onto your sense of humor.”

There is no "right way" to have sex, there is no single sexual act that is a criterion for "good" or "successful" sex, and there is no need to compare yourself to what others may or may not be doing. Satisfying sex means finding a way to express oneself in a way that is pleasurable without provoking anxiety or pain. Like everything else in a relationship, flexibility, communication, compromise, and a sense of humor are important keys to pleasure.

WRITTEN BY
S. Michael Plaut. Ph.D., Licensed Psychologist, AASECT Certified Sexuality Educator and Therapist. 

The TMJ Association is grateful to Dr. Plaut for writing this article for our website.

ACKNOWLEDGEMENT
The author thanks Sage Bolte, Judith Plaut, Andrea Singer, and Christin Veasley for their comments on the manuscript.

REFERENCES

  1. Cowley, T. (1994). Intended or Unintended, the Unforgivable Injury. July 14.
  2. Foley, S., Kope, S.A. & Sugrue, D.P. (2012). Sex Matters for Women: A Complete Guide for Taking Care of Your Sexual Self, 2nd Edition, New York: Guilford Press.
  3. Kaufman, M., Silverberg, C. & Odette, F. (2003). The Ultimate Guide to Sex and Disability. San Francisco: Cleis Press.
  4. Kroll, K. & Klein, E. L. (2001). Enabling Romance: a Guide to Love, Sex, and Relationships for People with Disabilities (and the People Who Care About Them). Horsham PA: No Limits Communications.
  5. Viorst, J. (2003). Grown-up Marriage: What We Know, Wish we had Known, and Still Need to Know about being Married. New York: The Free Press.
  6. Zola, I. K. (1993). Tell Me... Tell Me. In Haseltine, F.P., Cole, S. S., & Gray, D. Reproductive Issues for Persons with Physical Disabilities. Baltimore: Paul H. Brookes Publishing Co., Pp. 97-102.

©2014 The TMJ Association, Ltd. All rights

TMJ Disorders

Comments:

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arkbane - Friday, January 30, 2015
I have a question with respect to male and female difficulties with TMJ and oral sex. I know quite a few women with TMJ or TMJ-like symptoms (no formal diagnosis) and most of them avoid performing oral sex on their male partners. What I have been unable to find anything on is whether men with TMJ suffer similar issues. I have not been able to find a single article, blog or other resource where the question is even asked. Nor have I ever heard of a man avoiding oral sex on his female partner because of TMJ. Does anyone have any experience with this?