It’s MariaLuisa again, talking about one of my favorite topics: SEX. So while chatting with my friend, Diana, about my blog post on oral sex for leakers, she revealed that she has Vestibulodynia. Vesti-bu-lo-dynia. 🤔 Still trying to figure out how to pronounce it? Us too. Since doctors have limited knowledge about this condition, its name has had several iterations (Vulvodynia, Vulval pain). As Diana’s friend and a taboo-busting truth teller, I went on a quest to figure out what the heck Vestibulodynia is, how it can be treated, and how to cope without feeling alone or scared.
To learn more about what this mysterious, painful vaginal condition is, I chatted with my brave friend Diana and our pelvic floor guru Lindsey Vestal.
WHAT IS THIS?
Vestibulodynia is an inflammation in the entrance to the vagina. It is caused when the nerves in the region get so sensitive that the muscles get overactivated, causing them to clench. This condition is not infectious, it is not related to cancer, it will not spread to other parts of your body and you will not pass it on to your partner. Although doctors haven't been able to identify exactly what causes some women to have it over others, common causes include: use of tampons, use of a sex toy, penetration, childbirth, a gyno exam, and use of birth control. The latter is the likely culprit behind Diana’s experience but she didn’t discover this until last December.
Diana’s experience with this condition translated into pain the day after having sex along with many typical symptoms of a UTI (peed more frequently and experienced pain in her lower back). Except, she didn’t actually have a UTI. Not only was she in the dark about what was going on down there, Diana had just started dating. “It was very difficult because every time we would have sex I thought he was giving me an STD,” she shared.
Talk about awkward first dates?! 🐢 Pain after sex, however, is not the only symptom. Many of Lindsey’s patients experience pain while sitting too long, sporting tight pants that cut off proper circulation, and/or during and after intense exercise. Even high summer temperatures can make Vestibulodynia symptoms worse, Lisa explained.
“It took 6 different doctor diagnoses, 5 different antibiotics and 2 UTIs until my doctor figured it out,” Diana shared with me as her eyes welled up with tears.
After over 3 years of experiencing pain after sex, Diana decided it was finally time to hit up the doctor #adulting. Btw, did you know that it takes an average of 7 years for women to open up to their doctors about conditions like incontinence?
Diana bounced from urologists to gynecologists over seven grueling months. She felt frustrated. Alone. Confused. Why did it take so damn long to get a diagnosis? For Diana, it felt like “the different specialists would not talk to each other or knew what they were doing.”
According to Lindsey, this can be a very common and unfortunate occurrence in understanding pelvic pain. Although many OBGYNs understand the importance of addressing their patients’ pelvic floor health, most don't examine or evaluate for muscular conditions, which sometimes means that below-the-belt conditions can go overlooked or misdiagnosed. Sometimes, it's because women's pain isn't taken seriously 🙄 . What infuriated Diana most was that her gynecologist never mentioned that Vestibulodynia could be a side effect of the birth control she was prescribed.
WHAT TO DO?
- Muscular Relief:
- Implementing a foam rolling routine at the end your exercise session can help relax the pelvic floor.
- Reverse Kegels: This can be challenging. We hear a lot about kegels. But what the heck is a reverse kegel? Lindsey introduces how elongating the pelvic floor (a reverse kegel) feels by asking me to pretend that I'm blowing up a balloon. Not fully inflating it, just puffing some air into it. “This should give you a downward pressure sensation, your pelvic floor should feel like it is moving slightly in the direction of your feet,” she says. Then, she asked me to do a kegel exercise right after that so that I can differentiate between the two movements. They are indeed opposite of one another.
Caution: Lindsey advises to avoid common kegel exercises like the one where you stop peeing in the middle of emptying your bladder because it can cause UTIs. Also don't overdo the reverse balloon kegel exercise because it may overexert the pelvic floor, which can cause Pelvic Organ Prolapse. The balloon exercise is simply a way to experience your pelvic floor's full range of motion.
2. Partner Up:
Diana’s experience demonstrates how difficult it can be to find a specialist that will diagnose it on the spot. Lindsey recommends partnering with someone, either a urogyno, or pelvic floor therapist who is willing to think outside of the box. You want someone who you feel is listening to you. Also remember to ask more questions. Be vocal with your primary care physician if you believe their diagnosis doesn't feel right. #beyourbestadvocate
Once you have partnered up with the right specialist, they may suggest:
- Pills: Some doctors suggest patients take antidepressants in order to take a systematic approach that will relax the nervous system, and ultimately, relax the muscles in question.
- Ice, Ice baby: Some doctors also recommend local cooling and lidocaine type gels that can numb the tissue before sex. Cool water cones can also be used to bring the inflammation down.
- Diet Change (don't worry 🙃): Your specialist may recommend you start an anti-inflammatory diet or low oxalate diet. No worries that means you can eat pancakes, pasta, bagels, strawberries, mangoes, kale, corn, tomatoes, cookies, essentially all the good stuff 🍴
- SAY HELLO CONDOMS 👋🏽 (if you’re not in the babymaking phase of your life): You might be asked to go off birth control since the prolonged ingestion of hormones found in some birth controls can cause the pelvic floor to become too clenched.
3. Learn Your Tense: Lindsey admits that doing reverse kegels and “letting go” can be extremely hard as you are essentially breaking a habit, which is relaxing the part of your body that usually is tense. She recommends that her patients become more aware about their body. It's important to understand that muscle clenching is cutting off the blood supply to their pelvic region. Blood is needed to nurture the area and its lack of it is what causes the pain, similar to Carpal Tunnel Syndrome but instead of your thumb it’s your vagina. Diana has seen a lot of improvement while having sex by being more aware of her clenching habits. She now visualizes her pelvic region expanding instead of tensing.
LOVING YOUR VAGINA AND FINDING COMMUNITY
Having Vesitbulodynia has changed Diana's perception of her pleasure dome. “Sex is important and I feel the same needs and urges than before but this situation has made me less forward,” she admitted.
We know that Diana is not alone. In fact, studies find that as many as 16 percent of women in the U.S. suffer from Vestibulodynia at some point in their lives. Mayo Clinic estimates that there are more than 200,000 cases in the U.S. per year.
Whether it’s Vestibulodynia, dealing with recurring yeast infections, or feeling like things just aren’t right down there, it’s easy to start hating on our treasure chest. Lindsey says that the way to combat this body-part shaming is through education.
“Seek resources and groups and learn from them, this will get you in touch with yourself, which will ultimately calm your nerve system.” She highly recommends joining the Vulval Pain Society and reading the book “When Sex Hurts: A Woman's Guide to Banishing Sexual Pain” by Dr. Andrew Goldstein.
What would we be without the community that supports us? I have always had no filter with my friends and working in a place like Icon has made it even more apparent, especially when it comes to women’s health. It has given me the opportunity to have these conversations with those who surround me. I am forever grateful for Diana who trusted me with her story and was truly selfless in wanting to share it with the world, so that less women suffer in silence.
~*Is this you? If so, let us know if you have any other tips on how to cope with this extremely difficult to pronounce health condition?*~