5 Unexpected Side Effects Of Vulvodynia That Aren’t Just In The Vulva

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If you're not familiar with the condition vulvodynia, also called vulvadynia, it's a good idea to get acquainted — because it's pretty common. The International Journal of Women's Health estimated in 2014 that 16 percent of women worldwide experience some form of vulvodynia in their lifetimes — which is a pretty massive number. Vulvodynia is actually a diagnosis that includes a question mark; it means that somebody is experiencing serious vulvar pain and there's no known cause behind it, like thrush or an STI. And the symptoms can be more complex than you might think.

There are actually multiple types of vulvodynia. The most well-known is generalized vulvodynia. Verywell Health explained that it's "characterized by pain that is spread out throughout the vulvar region. It can be present in the labia majora and/or labia minora. Sometimes it affects the clitoris, perineum, mons pubis and/or inner thighs." There's a big diversity in symptoms, but the basic idea is that people with vulvodynia may experience serious pain — which can feel like stabbing, burning or waves of agony — in different parts of their vulva for no visible reason. Vulvodynia's causes aren't well-known; the National Vulvodynia Assocation noted that research indicates vulvodynia may be triggered by erratic nerve signals in the vulva or underlying inflammatory conditions, but there's still a lot of work to be done. Here are some unexpected ways this condition shows up.

1. Pain Provoked By Something Particular

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Alongside generalized vulvodynia, there's also a second kind of vulvodynia: "localized vulvodynia." That means pain in the vulva isn't constant. Instead, it's provoked by something: pressure or activity that causes pain signals to fire and the brain to experience serious burning and discomfort. According to the National Vulvodynia Association, a lot of people with localized vulvodynia experience it in the vestibule, or the area within the labia where the clitoris, vaginal opening and urethra are.

The clinical term for this, says the NVA, is provoked vestibulodynia (PVD), which means that "pain occurs during or after pressure is applied to the vestibule, e.g., with: sexual intercourse, tampon insertion, a gynecologic examination, prolonged sitting, and/or wearing fitted pants." People with localized vulvodynia may not experience pain unless there's pressure being applied to particular areas of their bodies.

2. A Feeling Of "Rawness"

While vulvodynia pain is often characterized as constant burning or, for localized vulvodynia, aches triggered by certain acts, it can also carry other sensations. The American College of Obsetricians and Gynecologists has noted that people describe the feeling of vulvodynia in different ways, including "aching, soreness, throbbing, swelling" or "burning, stinging [and] irritation," but people also use the term "rawness", as if their intimate areas are very exposed and sensitive to virtually everything. In many people with vulvas, there's no physical sign to show that anything's wrong: swelling and redness are actually pretty uncommon symptoms.

3. Pain At A Specific Point In The Vagina

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For some people, vulvodynia is extremely localized – in that it only shows up at one specific spot in their vulva, and everything else is completely fine. It's particularly common, according to Practical Pain Management, for people with vulvodynia to experience pain at the very back of the vaginal opening, which can lead to painful sex.

If you imagine that your vulva is a clock face with the number 12 at the top, at your clitoris, vulvar pains are most commonly reported between the numbers four and eight, according to the sexual health textbook Women And Health. That includes the vaginal opening and the inner and outer labia. The National Institute Of Health has also noted that vulvodynia pains can actually move from one area to another over the course of someone's life.

4. The Symptoms Of IBS

There's often a lot of crossover between vulvodynia and other chronic pain conditions. Experts Alessandra Graziottin and Filippo Murina wrote in Clinical Treatment of Vulvodynia that between 12 and 68 percent of people who've been diagnosed with irritable bowel syndrome, or IBS, also show vulvodynia symptoms. Research in 2012 showed that people with vulvodynia were two to three times more likely than others to have IBS.

It's likely that the two are connected because of the brain's pain signaling systems; in people with irritable bowel syndrome, the brain's structure and the way in which it processes pain is different to other brains. It's possible this is the case for people with vulvodynia too; studies have found that people with localized vulvodynia may have highly sensitive nerves in their vulvas, in greater quantities than other people. Chances are that if people who experience symptoms of IBS, like pain in the bowel, bloating and cramping, may be more at risk of vulvodynia too.

5. Chronic Bladder Pain

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Like IBS, vulvodynia has also been linked to interstitial cystitis (IC), or chronic bladder pain; the Interstitial Cystitis Association has said that the two are very often connected. Interstitial cystitis means people have bladder issues that can cause frequent, painful urination. The crossover, once again, may be something to do with nerve issues.

Dr. Leah Millheiser told Health24 in 2018, “Interestingly we see a lot of women who have interstitial cystitis (also called painful bladder syndrome), who also have vulvodynia because it has to do with abnormal nerve function in that area." Studies have found that women with IC often have vulvodynia too, and vice versa. Vulvodynia, for some people, may be part of a generalized issue with the nerves in the pelvis and upper thighs — or with the brain's pain structure in general.

If you're experiencing vulvodynia symptoms, the long-term outlook is good once you obtain a diagnosis. Treatments can include everything from using non-irritant washing powder to brain-blocking medications.Vulvodynia is a complicated, little-known disorder, but it is absolutely possible to manage it.