For most people, talking about sex can feel taboo, even if you only have good things to say. If you experience pain during or after sex, it can be that much more difficult to vocalize your symptoms, especially when the broad name for them — dyspareunia — doesn’t exactly roll off the tongue.

A diagnosis of dyspareunia isn’t a clearcut answer to your symptoms because there are actually many different reasons why someone might experience pain during sex. Endometriosis, fibroids, myofascial pain syndrome, irritable bowel syndrome, painful bladder syndrome (formerly interstitial cystitis), and states of lower lubrication like breastfeeding and menopause are all potential causes. For many people, vulvodynia (also called vestibulodynia or vulval pain), can be the root cause.

Vulvodynia is clinically characterized by chronic pain in a person’s vaginal opening that makes penetration, and sometime any contact at all, extremely uncomfortable. Studies have found that as many as 16% of women in the U.S. suffer from it at some point (for context, 12% of women will develop breast cancer in their lifetime) so we should definitely be talking about this more than we currently do.

To learn more about vulvodynia in particular, we chatted with Lindsey Vestal, a pelvic health OT and owner of The Functional Pelvis, and Diana, a friend of the blog who was recently diagnosed after living with symptoms for years. They helped us understand what vulvodynia actually is, how it can be treated, and how people can navigate their symptoms without feeling stuck or isolated.

What is vulvodynia?

Like so many other pelvic health conditions, there are still a lot of unknowns about vulvodynia, but we *do* know that symptoms usually include:

1. painful burning sensations

2. pain during physical activities, including everything from sex to jogging or bicycling

3. pain when wearing tight clothing, or sitting too long

4. redness (though many people have no visible symptoms)

5. a tight sensation in the skin

It’s generally thought that the pain is triggered when nerves in the vulval region get so sensitive that the muscles in your pelvic floor over-activate and clench. Lindsey explains that muscle clenching also constricts the blood supply to your pelvic region (similar to the symptoms of carpal tunnel in a person’s wrist or fingers, though carpal tunnel is rooted in nerve constriction, rather than blood supply) which amplifies the pain — and can contribute to additional pelvic issues like bladder leaks. The good news is that vulvodynia is not infectious, not related to cancer, and won’t spread to other parts of your body. Research hasn't been able to identify exactly what makes one person more prone to vulvar pain than another, but a few potential causes and triggering events include:

1. prior infection or trauma, causing nerve injury in that area

2. childbirth

3. history of episiotomy

4. history of sexual assault or rape

What you can do

Even with such clear symptoms, many people have a tough time getting diagnosed and treated appropriately (plus, it takes women an average of seven years to open up to a doctor about pelvic health issues). Diana navigated symptoms for three years and ultimately spent seven months bouncing from urologists to gynecologists before learning that birth control was the cause of her symptoms.

Lindsey explains that many OBGYNs know the importance of addressing their patients’ pelvic floor health, but most don't examine or evaluate for muscular conditions, which sometimes means that below-the-belt conditions go overlooked or misdiagnosed. Plus, pelvic health conditions often fall between different specialties, meaning every doctor you see can have their own convictions about what’s causing your pain (and whether your pain is real in the first place). The number of doctors who are literate in pelvic health conditions like vestibulodynia is only growing, and in the meantime there are steps you can take to learn more about symptom management:

Practice muscle relaxation

Lindsey says it can be difficult for patients to learn to “let go” of tense muscles when they can’t even feel that they’re clenching them, which is why becoming more aware of your body is a necessary first step in treatment. It’s always best to work with a pelvic floor physical therapist or other specialist who can tailor treatment to your body’s unique needs. That said, something as simple as implementing a new exercise routine, and visualization practices or breathing techniques, can help start to relax your pelvic floor.

Find the right specialist

Diana’s experience demonstrates how difficult it can be to find a doctor who can correctly diagnose and treat your symptoms— but it’s definitely possible! Lindsey recommends partnering with a urogynecologist or pelvic floor therapist who is willing to think outside the box, listens to your needs, and is responsive to your questions. She also encourages all people to be vocal with their primary care physician if a diagnosis doesn't feel right.

Consider medications

Some doctors suggest antidepressants to relax the nervous system, which can help relax clenched muscles, too. Local cooling and lidocaine gels can also help numb skin before sex, breaking the feedback loop that sex is painful.

Learn about your body

If you need a straightforward first step (or just want to learn more), Lindsey recommends digging into the book When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain by Dr. Andrew Goldstein. Educating yourself about your body is key to overcoming the shame that often stands in the way of seeking out help, and asking the necessary questions to be treated appropriately for your symptoms.

Have you experienced pelvic pain? Did you find effective treatment? Share your story in the comments.

Posted: July 31, 2019