Since the release of my book Rethinking Women's Health in 2016 and a few YouTube videos I put out on how I (and dozens of women I found through interviews) overcame Vulvodynia, I get about an email a week from someone who is looking desperately for answers. I still see so many women searching frantically in the Facebook support groups for relief and it kills me to think of so many people suffering from the physical pain and discomfort, but also the psychological and mental discomfort that comes from having a "female" health problem.
I remember that pain and shame well, even though it has been six years since I finally put that albatross to bed after living with it for almost fifteen. I want to start by saying, "I'm sorry you are in pain. I'm sorry you are struggling with intimacy with your partner. I'm sorry that this condition has taken over much of your life and has started defining who you are." I also want to say, "You are not alone, and you can be well."
Everything I knew from my own experience and from interviewing almost one hundreds other women went into the book Rethinking Women's Health. But, I have learned some things since then - refined my theory, I guess you could say, and I want to share a summary here. I am not a doctor, but as I said in my TEDx talk last fall, I believe we all need to become our own experts. Here is what I believe about Vulvodynia at this time:
1. Vulvodynia either is or acts like an autoimmune disease, in that something causes the body to attack the body.
2. Inflammation and vitamin/mineral deficiencies often underly this condition.
3. Many women develop this condition after the use of birth control pills, antibiotics, or the use of anti-fungal medications.
4. Many women who experience vulvodynia carry some sort of sexual shame - either a particular incident (or several) or just a shame around sexuality in general. Many women were brought up to believe they should only have sexual relations within the bounds of marriage and feel conflicted about this contradiction in their lives.
5. Stress, perfectionism, and high-achiever-ism appears to be a common trait among women with this condition.
From interviewing dozens of women who healed from Vulvodyina, this is what I believe at this time about healing.
1. There are several pathways to healing - the mind-body-environment are interconnected. You can impact your health through a variety of pathways. I've met women who healed physically (surgery, health overhaul), emotionally/mentally (reducing stress, identifying what purpose the condition serves), and even spiritually (deciding that shame and sex are no longer part of their belief system, believing they deserve to be well).
2. The belief that you can be well is foundational to healing. If this condition serves any other purpose - it may even be subconscious - it will not go away. For example, some people need the attention from a chronic illness. Others really don't want to have sex with their partner. Other people have so much shame attached to sex, the condition is "justified" subconsciously.
3. The mind is powerful. Pain cycles can be interrupted. Pain causes anxiety, which causes more pain. But, you can learn to mentally circumvent this cycle.
Based on what I believe at this time about vulvodynia and how to heal it, I recommend these steps if you are ready to be well:
1. Make sure you are ready to be well. Ask yourself if this condition serves any purpose that you are unaware of and ask your body/mind/spirit to release the need for this condition - I know this sounds crazy, but dig a little.
2. Stop the immediate pain cycle - ice nightly. I used to put cold, organic kefir all over the vulva at night for immediate relief - although everyone is different. I believed in the power of probiotic-rich foods and their power to rebalance me. Cold reduces inflammation. If you have a medication that provides immediate relief, that is fine too, but this is only temporary.
3. Interrupt the stress/pain/anxiety cycle. The fastest way I know how to do this is by practicing mindfulness. You have pain, but you can separate from it, and it does not have to control your thoughts or emotional state. When the anxiety around the pain subsides, so does the pain. Commit to a fifteen minute guided meditation a day. I love Tara Brach who has dozens of free ones on her site. Her books also explain how mindfulness helps with health conditions. See https://www.tarabrach.com/
4. Understand the Mind-Body connection. Dr. John Sarno's groundbreaking work demonstrated that unconscious thoughts create back pain quite clearly in his research. His last book, The Divided Mind, shows how the mind creates all kinds of conditions in the body. Although I was skeptical at first, I have spoken with more women who healed using Sarno's methods than any other pathway. Lorraine Faehndrich offers an online course based on these methods if you need more help. I am now a believer in Sarno's research and techniques after using his methods to deal with another autoimmune skin condition that no medical intervention could touch. I figured, "what do I have to lose?"
5. Clean up your overall health. I would have told you this was step one when I first became well. It was my pathway. Few of us eat in a way that gives the body the vitamins and minerals it needs to function correctly. Our microbiomes are compromised by crappy food and an overload of antibiotics. Supporting your whole body so that the parts can be well is important. But, the actual steps on how to do this vary from person to person. I see people get so stressed about what to eat and what not to (I did this) that this pathway creates its own stress. My advice now is to be reasonable. Increase your veggie load, look into what supplements your body needs, take a quality probiotic, and cut down on the processed foods. Try a month-long system like Clean Gut or Whole-30 and see how you feel.
In my experience, people who are open-minded, who are willing to try different pathways, who are hopeful, and who believe they can be well find healing. I am not blaming people who are still suffering, but I do find a lot of people who just want a medication or medical procedure that will fix them. They get angry at the mention of their own need for this condition or the notion that their own subconscious beliefs may impact their wellness. Try and put your doubts away. What do you have to lose?