In a previous blog I have written about women having pain around their labia, vagina, and genital region, known as vulvodynia, also called vulvar vestibulitis. There is another term, dyspareunia, which refers to pain only during or after intercourse. Some women only experience one or the other, and some have both.
Just so we get our names straight, a woman’s vulva refers to the external parts of the female sexual and reproductive organs–your clitoris, labia majora and labia minor (those folds of skin), your pubic mound (hairy part on top), and the opening of the urethra (you pee out of that), and inside, the vagina. Think of it this way, the vagina is like a moist cave with its own ecosystem, it is pretty much self-cleaning. The vulva, the parts on the outside, do need a gentle wash and dry to stay healthy.
I mention this because the more women understand their bodies and can talk openly about what is happening without shame or embarrassment, the safer and healthier they will be. Much of the misery of dealing with vulvar pain is emotional. When a woman cannot exercise or wear jeans because of the pressure on her vulva and the pain, it’s a constant reminder of a problem that is often difficult to diagnose and treat.
When it comes to intercourse, or any kind of sexual touching, those are impossible to even consider, let along engage in. It is a traumatic loss. Many millions of women suffer quietly and never seek help. They don’t know where to start and what to do.
Is This All in Your Head?
Thankfully we are getting past this thinking, but just like early sufferers of Fibromyalgia, or Chronic Fatigue this kind of pain was often dismissed by medical professionals as untreatable. It was thought to be a psychological problem because often there are not visible signs and everything looks normal from the outside.
Any time a physical ailment is hard to diagnose has varied and/or inconclusive causes, will not go away after many treatments, we, and others, may start to think there are psychological factors at work. No, it is not ALL in your head, but something so private, life-changing, and painful does get in your head and affect your confidence and emotional health in a profound way. It could be that whatever the trigger was, injury, infection after it is resolved there is left a neural pain pathway. The inflammatory response does not go away. This is often invisible, which leads to women seeing many providers and feeling crazy because no one can diagnose what’s going on.
Dr. William Ledger, professor emeritus of obstetrics and gynecology at the Weill Medical College of Cornell University, and an expert on vulvodynia, said, “There’s good evidence that with vulvodynia as a whole, the women have more nerve fibers in the vulva and they are firing more pain signals to the brain.” He continued: “It’s a kind of vulvar fibromyalgia. Most patients with vulvodynia have very tender glands at the entrance to the vagina.”
What I’ve seen with my patients is that they can have burning pain with or without touch and they are highly sensitive, prone to flare ups and find that even wiping with toilet paper can be excruciating.
Effects on Sexuality and Relationships
Pain that affects your sex life is not the same as having a chronic backache, or Irritable Bowel Syndrome, or any other ailment. It’s not something you can mention to co-workers at lunch, it is extremely hard to talk about even with close friends and loved ones.
A woman in an ongoing sexual relationship can feel that she is to blame for ruining their enjoyment as a couple. Her partner may wonder if it is really a sign of rejection, lack of attraction or affection. It’s easy to see how this could quickly damage a relationship.
I have many patients who have lost relationships because their pain is real and they’re not able to enjoy intimacy. Honest and open communication, and letting a partner in on the medical investigation is a must. It will take teamwork to find what is possible to enjoy without pain.
For those who are dating and open to a new partner this pain can cause them to at first tolerate the pain, and then eventually avoid sexual situations altogether. The area of their body that is supposed to be a natural place of pleasure becomes a no-touch zone. It definitely would take courage to bring this up in a dating situation.
The Mind Body Connection
There are blogs to be found on this topic where many have cured their vulvodynia through psychotherapy, meditation, trauma therapy, pelvic floor relaxation therapy, hormones, pain relieving creams, and other modalities.
Of course, there are strong connections between our mental and emotional states and our physical health. As you know I am a believer in the concept of neuroplasticity – that our adult brains can continue to grow, learn and adapt. We are learning more every day about emotion and stress connections involved in areas such as overeating, anxiety, and pain.
A study in 2008 indicated that women with vulvodynia had more grey matter in parts of the brain related to processing stress and pain. It may turn out that women suffering this type of pain may be genetically susceptible to chronic pain that worsens during times of stress.
Understanding and treating vulvodynia is going to take a multi-pronged approach, all the way from stress reduction, pelvic floor therapy, and lidocaine, to even surgery. But it will also take compassion and understanding from health care professions and loved ones.
I would highly recommend visiting the National Vulvodynia Association’s website for self-help tips and for support groups.
And of course, find a provider who understands this condition and can work with you to get vulvodynia under control.