What Patients Say Works for Vulvodynia

Vulvodynia GraphicFor the live-updated, fully-labelled, interactive version of this graphic, click here.

By Alexandra Carmichael, Co-Founder of CureTogether Nearly two years ago, CureTogether released a list of the top patient-rated treatments for vulvodynia, a common form of female reproductive pain that makes regular activities like wearing jeans or having sex extremely painful. A staggering 20 percent of women will experience vulvodynia at some point in their lives, so we at CureTogether decided it would be helpful to repeat the analysis and release an updated list of treatments rated by women living with the condition. People in the study said they found that non-drug interventions like physical therapy, ice and wearing loose-fitting clothes were effective treatments. Conversely, those in the study said some treatments like NuvaRing, Replens, Capsaicin cream, and Lanacane actually made the condition worse. These are all treatments suggested and reported by patients, so some redundancy in the terms used is to be expected. In addition, the term “treatment” in this study refers to anything patients describe using to help them feel better whether it is an officially prescribed medical treatment or not.
Most Effective Rated Treatments for Women with Vulvodynia 1. Wear loose-fitting clothes 2. Ice 3. No underwear 4. Physical therapy 5. Avoid sex 6. Rinse with water after urination 7. Trigger point therapy 8. Mysofascial release 9. Avoid bicycling 10. Osteopathic manipulation
Vulvodynia  is a very common kind of female pain, but it is rarely talked about because many women are embarrassed by it. CureTogether is a free resource owned by 23andMe, and it allows people to share information about their health and treatments. In turn they can learn from others dealing with the same conditions. CureTogether’s study compiled responses   over four years from 1,969 people with vulvodynia, who rated the effectiveness of 120 different treatments. We’d like to thank those who participated. And just as they shared their experience with treatments, we’re freely and openly sharing the results of the vulvodynia study. We hope this will help raise awareness and let people feel like they’re not alone. This is part of a regular series of CureTogether research findings. CureTogether’s research findings are different than those made by 23andMe, which look at genetic associations with illness, traits and drug response. But as we continue our work with the CureTogether community, 23andMe hopes to incorporate more of this kind of self-reported information into our own research. CureTogether present its findings just as they are – patient-reported data – to stimulate discussion and generate new insights for further research. Please tweet, blog, or pass this along to anyone who can benefit or is interested in vulvodynia. Thank you!
  • Lisa

    Although I have not been diagnosed with Vulvodynia yet, I am certain that I have the condition. One Primary Care Physician and 2 OB-GYN’s later, I have gotten an MRI and I am waiting for the results. This article is great. I do not have the pain while I am sleeping at night, but it starts within a couple of hours of waking. The pain in my clitoris and vulva is unbearable. Right now as soon as the pain comes on, I go back to bed and spend the rest of the day there with an ice pack between my legs. I am so depressed. What kind of life is this? Will the pain ever go away? Thank you so much for doing this study. I am so grateful to have found your site! Keep up the good work. I have done everything on your list and what you write as being helpful is truly helpful,

    • Sylvia

      Vulvodynia is a hallmark symptom of an oxalate problem. A low oxalate diet is the way to treat it.
      Susan Owens, PhD, heads a Yahoo group that deals with this. Join that group and you will
      have a huge amount of information and research articles. Nutritional supplements are involved
      as well, and ways to fix a leaky gut. I didn’t have vulvodynia, but had a hip pain. One’s pain can
      be in various places, depending on where the oxalates settle. They are like tiny pieces of glass.
      I followed a very low oxalate diet for a year and my hip is now o.k., but I still avoid the very high
      oxalate foods like spinach or rhubarb.

  • Terri

    Although I do not have vulvodynia, some years ago I experienced severe pelvic pain that quite literally drove me to a breakdown. No cause could be found. Paxil and Klonipin have helped greatly, since they deaden the nerves in the pelvic/genital area. Some sexual dysfunction is common (that is, inability to orgasm), but for me, was temporary, and worth the trouble for the relief from pain; in fact it’s been ultimately helpful because I can now enjoy sex more. Also, the medicine helped the anxiety that went along with the pain. I’ve had to add some Premarin cream as I’ve gone through menopause.

  • ringo

    What works for me is rinsing with water after urination, but with some baking soda in the water – a couple of tablespoons in a pint squeeze bottle (I use an empty one from witch hazel).

    After many exams and cultures I found a doctor who knew what he was talking about (unlike the previous three), and he found I was having an allergic reaction to lactobacillus, a bacteria that occurs naturally in the area, but that I’m sensitive to. They tell you to eat yogurt (also contains lactobacillus) to stave off yeast infections, but it’s possible to swing the balance the other way too far, which is what was going on. Baking soda is basic, and lacto makes an acidic environment, so this brought things back to balance.

  • Jackie

    I too am Undiagnosed but have suffered for years. I found a blog advising me to take calcium citrate (not one or the other but the combined) It WORKS! I don’t understand why but as long as I take 2 in the morning and 2 at night the symptoms go away, though if I forget the pills even one dose the symptoms are right there to remind me.

  • Haphiza Baboolal

    I too have suffered from vulvodynia for 9 years and only got diagnosed a little over a year ago. I am now pain free without using medications. I used several things including meditation, diet changes, washing after using the bathroom.

  • Akat

    “Avoid sex” is not a treatment for painful sex. And how can the respondents say that capcaiscin made it worse? Correlation is not causation ( especially with vestibular pain disorders!). I hope others like me coming here looking for real answers aren’t discouraged when trying any one of these myriad treatments, or providers in finding what methods are right for their patients. As with many syndromes, management will look very, very different for each patient, and discounting some of the options can be detrimental to it. If any of these were a cure, it would be different, obviously.

    • Cindy D.

      A low bacteria-count bladder infection was the cause of my vulvodynia and treating it with long term antibiotics made the vulvodynia disappear. Try getting a broth urine culture done (look up labs that perform them) and see if you don’t have a small amount of bacteria causing symptoms that m mysteriously, don’t seem at all related to the bladder. Interstitial cystitis sufferers often have vulvodynia for this exact reason. If I hadn’t found this simple yet nearly hidden path to treating myself, I can’t imagine the shape I’d be in today. I agree, not having sex is not a treatment, and the current standard for urine cultures (finished in a few days rather than a week or more) misses what may be a cause of this mysterious pain.

  • Akat

    Btw, I seem like I have a chip on my shoulder because I landed here, the second search result, with the search “vulvodynia hope.” Meaning I’d like to have lots of sex with my husband. Tried the no sex thing, wouldn’t recommend it as “treatment,” ever, even to the worst person alive.