One of the reasons it's so hard to treat vulvodynia is because we don't know "the" cause. Some of us find we feel pain after we've fallen on a balance beam. Some of us have chronic yeast infections that never seem to go away--and are perhaps even undetectable by typical tests (instead only detectable through a skin scraping by a dermatologist), causing constant inflammation and pain. Some of us have hormone imbalances that we've been told cause us to have poor lubrication and/or thin skin, leading to pain. Some of us may have "too many" nerves in our pelvic region, leading to an increased sensitivity to touch, which our brain interprets as pain. Some of us may practice bad posture that pinches our nerves and causes pain. Some of us may have skin that is extra sensitive to chemicals including the oxalates excreted through our own urine depending upon what we eat. Some of us may have mental trauma that causes our muscles to tense and spasm in ways that cause pain. It seems that there are a variety of potential causes we have identified for our pain. And, none have yet been proven by science. On the one hand, what this means is that we all may be suffering from the same symptoms but very different conditions. This leads to both exasperation and hope as we think of the variety of treatments out there and the constant possibility that the next treatment, combination of treatments or altered dosage or application of treatments may just work for one of us, one potential cause of pain. For example, some women have tried taking neurontin orally and have found no relief, while others have. Some have tried compounding it in a cream and applying it to the vulvar area and have found relief; meanwhile, others have not and have even had heightened pain because of a response either to the drug or the base in which it was compounded. And some women have done PT while getting nerve blocks, taking a tricyclic antidepressant and applying capsaicin nightly with relief... while others haven't.
There are so many things women are trying to cope with and eliminate their pain, and the permutations and combinations of treatment are endless! For better and worse. What this means is that we must never give up hope. We must find ways to continue the fight to get better no matter how many things we have tried; there will always be something new around the corner--from a completely new drug or proposed cause to a new way to implement an old treatment--such as using a different dosage, a different frequency, or in combination with a different secondary or primary therapy. Never buy into the thought that you have "tried everything," as that is nearly impossible when you consider all the combinations, doses and applications of drugs. And, never give up or give in! This disease is only as chronic as the answers to the cause.
One thought: If we cannot seem to find a physical cause (or even if we've found one but the pain doesn't go away 100%), could that mean that, despite having a very real physical outcome--pain--that perhaps there is something else going on? Some have come to believe that the root cause of all chronic disease is not physical, at least not entirely. And, whatever the truth, it seems fair to say that, no matter the cause, vulvodynia has more than just physical consequences. It sets our brain on fire with negativity. There are many ways to deal with that, including having a better understanding of the mind-body connection. And, in line with this, remember to now and then give yourself a break from it! Not every waking moment of your existence should be spent in doctors' offices, in online chat rooms or any number of other ways that we focus our lives on the big V; it may be big, but it's only a part of our bodies and therefore should only be a part of our lives.
Below, you will find a summary of treatment types. For more details, you may wish to visit the Resources page or use the powers of Google. If you have ideas to add, please email us now so they can be added here! Further, if you are the type of person who wants to go through a more intentional treatment process, you may wish to pick up a copy of When Sex Hurts and visit page 82-83 to get an idea of how to rule out different potential causes. (Note: If you purchase this book through the NVA link above, 25% of proceeds go to the NVA.)
Medications
Oral Medications*
Topical Medications
Injections
Physical Remedies
Mental Remedies
Odds & Ends
Surgery: The "Last Resort"
There are so many things women are trying to cope with and eliminate their pain, and the permutations and combinations of treatment are endless! For better and worse. What this means is that we must never give up hope. We must find ways to continue the fight to get better no matter how many things we have tried; there will always be something new around the corner--from a completely new drug or proposed cause to a new way to implement an old treatment--such as using a different dosage, a different frequency, or in combination with a different secondary or primary therapy. Never buy into the thought that you have "tried everything," as that is nearly impossible when you consider all the combinations, doses and applications of drugs. And, never give up or give in! This disease is only as chronic as the answers to the cause.
One thought: If we cannot seem to find a physical cause (or even if we've found one but the pain doesn't go away 100%), could that mean that, despite having a very real physical outcome--pain--that perhaps there is something else going on? Some have come to believe that the root cause of all chronic disease is not physical, at least not entirely. And, whatever the truth, it seems fair to say that, no matter the cause, vulvodynia has more than just physical consequences. It sets our brain on fire with negativity. There are many ways to deal with that, including having a better understanding of the mind-body connection. And, in line with this, remember to now and then give yourself a break from it! Not every waking moment of your existence should be spent in doctors' offices, in online chat rooms or any number of other ways that we focus our lives on the big V; it may be big, but it's only a part of our bodies and therefore should only be a part of our lives.
Below, you will find a summary of treatment types. For more details, you may wish to visit the Resources page or use the powers of Google. If you have ideas to add, please email us now so they can be added here! Further, if you are the type of person who wants to go through a more intentional treatment process, you may wish to pick up a copy of When Sex Hurts and visit page 82-83 to get an idea of how to rule out different potential causes. (Note: If you purchase this book through the NVA link above, 25% of proceeds go to the NVA.)
Medications
Oral Medications*
- Antidepressants and anti-anxiety medications used off-label for pain management and taken orally or compounded into topical creams (tricyclics: amitriptyline, nortriptyline, desipramine; SNRIs: venlafaxine [Effexor] or duloxetine [Cymbalta]), particularly for generalized vulvodynia and started at a low dose that is increased until pain subsides or side effects get too drastic. Other antidepressants like SSRIs (Prozac, Wellbutrin, Paxil) do not work well to reduce pain but may still help with mental anguish resulting from the pain
- Antihistamines/Anti-inflammatory Agents, including natural supplements like NeuroProtek and CystoProtek and high doses of fish oil
- Anticonvulsants, such as pregabalin [Lyrica], gabapentin [Neurontin], topiramate [Topomax] or milnacipran [Savella]
- Muscle relaxants, such as flexeril, Valium and baclofen
- Opioid Antagonists, such as naltrexone
- Antifungals, such as fluconazole (sometimes used aggressively and long term to reduce yeast that cannot be picked up by a swab test)
- Chinese herbs
Topical Medications
- Compounded Creams (or Gels or Ointments): Many oral medications have been compounded into cream bases (as well as vaginal suppositories) for topical application to the vestibule and surrounding areas. The most common compounds are those including antidepressants and/or muscle relaxants and/or "caines" in a base that does not irritate the user.
- Hormones: 1) Estrogen: May thicken and plump up the skin and increase elasticity in the vaginal area so as to reduce sensitivity; 2) Testosterone: May saturate the testosterone receptors, which may reduce pain. May also increase arousal if used systemically (topically or orally).
- Anesthetics: May be used regularly to densensitize the area as well as in preparation for an activity that may cause pain (i.e., penetration). Routine use--topically or inserting a soaked cotton ball in the vagina overnight--may help "reset" the nerves by stopping the pain cycle (i.e., pain increases pain...). Examples: "caines" (lidocaine, tetracaine), ketamine, capsaicin (capsaicin must be used indefinitely to prevent the return of the pain)
- Steroids: Used to reduce inflammation of the skin; most commonly used for those with dermatological issues, but many try them out regardless for a short period (1-2 weeks) to see if they find any relief. Examples: clobetasol, betamethasone cream
- Antihistamines/Anti-inflammatory Agents, such as palmitamide cream
- CBD oil (component of THC that may reduce pain and encourage healing)
- Neogyn: Considered a moisturizer, but some have found pain relief (presumed active ingredient: cutaneous lysate; now discontinued but you may find some on eBay)
- Lubrigyn: Considered a moisturizer, but some have found pain relief
- Cutaneous lysate cream
- GentleDerm
- Lamotrigine
- Antifungal creams; recommended for those with chronic yeast infections as a likely cause
- A&D ointment or Weleda Skin Food
- Thuja and lomatium Vitamin A suppositories
Injections
- Nerve blocks: Thought to "restart" the nerve from a cycle of pain by numbing the area. The most common are pudendal nerve blocks, although caudal and others exist. Pudendal nerve blocks are commonly used to diagnose pudendal neuralgia as a cause of or contributor to pelvic pain.
- Saline: Some naturopaths believe that if saline is also injected, it helps rebalance the ions in the area and reduce inflammation.
- Steroid injections: Thought to calm inflammation. According to Dr. David Eschenbach, a series of 4 shots (with each session injecting on the left, right and potentially bottom middle), redness should start to fade and bleeding during injections should decrease--indicating that the blood vessels are smaller because inflammation is decreasing. He says if and when the redness disappears, the area should heal within about a month and pain will be reduced. He says this is most effective for women who have not have long term pain, but that there are cases where women with 40 years of pain find complete relief.
- Botox: By paralyzing the pelvic floor muscles, may reduce spasms and pain, as well as improve dilation efforts (e.g., dilation under anesthesia); should be done in conjunction with PT, not as a replacement for it
- Stem cell transplant: Healthy stem cells are injected into a region where damaged or diseased cells may exist
- Interferon: May reduce inflammation
- IVIG/Gammagard
- O-Shot
Physical Remedies
- Physical therapy: One of the main reasons to do PT is to loosen a tight pelvic floor--that is, for "pelvic floor dysfunction" (also called or associated with levator ani syndrome and vaginismus). The problem with a tight pelvic floor is that it reduces blood flow, which results in inflammation from the build up of lactic acid... causing pain. But, not all PTs are the same! Some use myofascial trigger point release on the outside of the vagina to help stimulate blood flow, while others do intravaginal and/or anal trigger point therapy to stretch and relax the muscles at various layers (which you can do at home with lubed up thumbs, dilators or a Serenity, in combination with common stretches and strengthening exercises like the pelvic brace and deep belly breathing). Still others use abdominal connective tissue manipulation, neural mobilization, small joint mobilization, small core stabilization (think pilates), pelvic floor retraining (biofeedback, Kegels, dilation), electrical stimulation, and/or therapeutic ultrasound. So, if you've tried one PT, you've tried one PT. Go forth to another! Or google some of these words to find videos and tutorials on how and why to do the pelvic floor relaxation yourself; you'll have to anyway once your PT gives you homework. There are tons like these: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, and 14. You could put together a little pelvic floor rehab program for yourself!
- Dilation: You can do dilation with a PT or just at home using a kit you find online or you can an expedited dilation procedure called "dilation under anesthesia" with a practitioner--usually involves Botox ($$$) to stun the muscles for a period of up to four months.
- Lubricants & Moisturizers: May moisturize the skin to increase elasticity and general health, just like using lotion on the rest of your body. One great one is coconut oil since it has natural antibacterial properties, but you can also use olive oil, emu oil, essential oils (e.g., Zestra), or more traditional vaginal lotions and sex lubes. If you do use lubes, avoid ones with propylene glycol and parabens. Moisturizers and lubricants will also help reduce not only friction during sex but friction from things like crotch seems. Last but not least, they will help form a barrier between the skin and any irritants in vaginal secretions or urine (e.g., oxalates).
- Yoga & Pilates: May include types that increase blood flow (e.g., Bikram), remove toxins, reduce inflammation, promote healing, improve posture, and improve proper use of pelvic muscles (such as through stretching in squatting positions)
- Biomechanics: You may consult a biomechanics specialist in order to retrain you to use your body as intended, which should help strengthen your pelvic floor.
- Acupuncture: Some suggestions for your acupuncturist are available here, such as focusing on the ear Shen Men, PC7, SP6, LIV3, LI20, ST40, and the Master Tung points Fu Ke (a two point combination on the thumb) and Ling Gu, a point found close to LI4 (in addition to herbal concoctions and using Yin Care herbal wash, with the goal often of fighting "heat"). Some suggest 12-20 sessions to start seeing results, after which you would do "maintenance" treatments.
- Desensitization: See this article for ideas.
- Masturbation: May increase blood flow, maintain libido and improve sexuality
- Cold Laser Therapy: Thought to get deep into the tissues to encourage healing.
- The Mona Lisa Touch
- MicroVibration therapy
- TENS Unit (electrical stimulation): Using a vaginal stimulator (to mimic Kegels); if pudendal neuraligia is your potential cause, this can worsen the pain
Mental Remedies
- Psychotherapy and Sex Therapy: How we think about our pain and emotions amplifies our pain. It also eats away at our sense of self -- as a whole and sexual being. It's important to find ways to minimize negative self talk and maximize effective coping strategies so as to to ensure our pain is only pain, not our life or our identity. Further, there are times when pain comes to exist because we are not dealing with past or present emotional wounds. For these situations, psychotherapy that specifically deals with psychosomatic (somatoform) pain and/or uses EMDR may be helpful.
- Hypnosis
- Mind-Body Stress Reduction and Awareness (for a few quick ideas, click here)
- Meditation: Learn to quiet the mind by taking some time, even just two minutes, to focus on your breathing. This activity is proven to help you find a greater sense of calm and strengthen your ability to focus.
- Sensate focus: May help overcome or reignite a healthy sexuality
- Tantric sex: May offer alternatives to intercourse that maintain intimacy with one's partner
- Distraction: For many chronic pain syndromes, therapists recommend 1) enhancing self care so that you don't add discomfort and poor general health to add to your pain and 2) find things that you can deeply focus on (if you're lucky, that's work)--for then sometimes we are able to "forget" our pain or at least not let it be the focus.
Odds & Ends
- Ice: May temporarily reduce the pain and heat of vulvodynia; may be inserted in the vagina
- Heat: May increase blood flow to the area and encourage healing of inflamed skin. Examples: sitz baths, heating pads, Bikram yoga!
- Elimination Diet: Removing foods in your diet (not just oxalates!) that cause inflammation. Examples: 1) Low oxalate diet plus calcium citrate supplements may reduce the amount of oxalate crystals in urine (though research is mixed) on effectiveness; 2) Low sugar diet plus probiotics may reduce the amount of yeast/candida and subsequently yeast infections; 3) Low acid diet; 4) Complete elimination diet to rule out other allergies that cause inflammation in the body overall, since some claim "everything comes from the gut"
- Detoxification: May help eliminate irritants from body and subsequently reduce inflammation and allow healing; includes such modalities as NAET
- Irritants: Whether or not you do an allergy or patch test and get any positives, your skin may be sensitive to certain things in the environment. Minimize contact by lifestyle changes, such as wearing white cotton underwear washed in only hot water, washing the vagina only with water (no soap or cloth) and only using hypoallergenic soap (and lotion) on the rest of your body (and for laundry if possible), using chemical-free feminine products, avoiding lubricants with propylene glycol, and rinsing with a hand-held bidet; if you suspect you are sensitive to chlorine, consider using a whole-house filter or washing the vaginal area with distilled water. If you absolutely must use soap to wash the vagina, consider something more natural like Healthy HooHoo.
- Wearing heels?! Yup. Read more here.
- Clitoral distraction: e.g., using a vibrator to stimulate arousal to "distract" from the pain of penetration during intercourse
- Ayurveda: May balance the body's "hot" and "cold" and promote healing
- Metromint and alkaline water: May help you "pee out the heat"
- Maca root (may increase arousal)
- Daily tampon use: May reduce contact between vulva and irritating vaginal secretions
- Water Treatment: May remove irritants from water used during showering, etc.
- Toto Washlet: May be used to rinse after urination and prevent irritation from urine
Surgery: The "Last Resort"
- Recommended for those with localized pain and specifically with a primary cause of pain being neuroproliferative vestibulodynia