Vestibulodynia: pain at the entrance of the vagina

Vestibulodynia is a type of vulvodynia in which the pain is isolated to the vestibule. The vestibule is a structure located at the opening of the vagina that surrounds the openings of both the vagina and urethra. Women with vestibulodynia usually report pain at the opening of the vagina when penetration is attempted, whether that be with a tampon, penis, etc. The pain is described as burning, stabbing, rawness, etc.

As with all other types of vulvodynia, vestibulodynia is further categorized by the nature of the pain, when it occurs and why. The main subtypes of vestibulodynia are based on whether the pain is provoked or unprovoked. Pain in the vestibule can be provoked in response to touch or penetration, or unprovoked and occur spontaneously. Provoked vestibulodynia is one of the most common types of vulvodynia, and may be referred to as PVD. Unlike many other types of vulvodynia, research has identified subcategories of vestibulodynia based on the actual cause of the pain: a problem with hormone signals, with nerves, or inflammation caused by infection or allergy.

Subtypes of Vestibulodynia

Vestibulodynia can be caused by hormone imbalance, called hormone or hormonally associated vestibulodynia. Because the vestibule, and other parts of the vulvar anatomy, are very dependent on hormone signals for the tissue to be healthy, disruptions in these signals can cause the tissue to be unhealthy. The vestibule tissue may become inflamed, weak, brittle, and lose stretchiness; therefore, it will be easily damaged and painful.

Vestibulodynia can also be caused by a problem with nerves in the tissue, called neuroproliferative vestibulodynia. The prefix “neuro-“ specifies nerves, and “proliferate” is a fancy term for cells replicating. Research has shown that women with neuroproliferative vestibulodynia have up to 10x more c-afferent nociceptors in the vestibule. (1) This type of vestibulodynia is often a primary condition, meaning it was present from birth, likely caused by a very early developmental issue with the primitive urogenital sinus. (2) Women with primary neuroproliferative vestibulodynia are likely to also have increased sensitivity in the belly button, because the umbilicus develops from the same early tissue type. (2) Neuroproliferative vestibulodynia can also be acquired later in life, termed secondary vestibulodynia. In this case, overgrowth of nerves may be caused by immune response to chronic infection or allergic reaction.

Inflammation is a fancy term for an immune response, and involves increased blood flow (which causes swelling, redness, and warmth) and immune cells coming to the area to protect from an infection or injury. Inflammation that lasts too long can cause damage to the tissue. Inflammatory vestibulodynia is the result of chronic inflammation causing damage to the tissue, either from a long lasting infection or an allergy (allergy responses are also mediated by the immune system).

Vestibulodynia can also be caused by hypertonic pelvic floor dysfunction. In these cases, the pain is usually limited to, or most intense, at the posterior vestibule (6 o’clock).

Vestibulodynia Treatment

The treatment for vestibulodynia, unfortunately, is often a process of trial and error. However, the decision process is more informed than it used to be and has been formalized into an algorithm. (3) You can access the algorithm here, via the CVVD (The Centers for Vulvovaginal Disorders) website. The idea behind the algorithm is that certain signs/symptoms point to diagnoses of different forms of vestibulodynia, and also, certain subtypes have more appropriate treatments. For example, pain throughout the vestibule, visible redness, and taking hormonal birth control point to hormonally mediated vestibulodynia. Life long vestibule pain and umbilical hypersensitivity point towards congenital neuroproliferative vestibulodynia. Significant inflammation in the vulva and throughout the body points toward inflammatory vestibulodynia. Pain limited to the posterior (6 o’clock, closest to the anus) vestibule points toward hypertonic pelvic floor muscle dysfunction. Accurate diagnosis is crucial for proper treatment! I encourage you to ask your doctor to look at the algorithm with you!

Hormonally mediated vestibulodynia is strongly associated with use of oral contraceptives, which alter hormone levels throughout the body. Fortunately, if the hormone imbalance is caused by taking hormone pills, the treatment is as simple as stopping the pills and applying topical hormones in a gel directly on the vestibule to restore the hormones to the area. This treatment has been shown to be very effective in women taking oral contraceptives with (very likely) hormonally mediated vestibulodynia. (9) [This reference includes a photograph of inflammation of the vestibule if you’d like to see it (link below).] With menopause, hormone levels decrease and can cause similar symptoms for the same reasons. This is called the Genitourinary Syndrome of Menopause (GSM), and there are treatment guidelines specifically for GSM. Here’s a great Twitter thread about GSM.

For women with neuroproliferative vestibulodynia, there are some topical treatments available as well, though the results are less consistent compared to hormonally mediated vestibulodynia. Topical numbing creams have been used, e.g. lidocaine, however in controlled trials is shows no greater effect than placebo (7). Also, if used to facilitate intercourse, there is risk of increased pain once the numbing effect wears off. A controlled trial with patients with provoked vestibulodynia is ongoing. (8) Topical nerve blockers, e.g. gabapentin, applied in gel form directly to the vestibule have mixed results. In an early study, women using topical gabapentin reported less pain than women who were not. (4) However, this study design was not ideal; it was not a controlled study, but rather collected data from women who were also trying other medications and treatments. Therefore, there are a lot of potential confounding factors that make it difficult to be sure the reduced pain was directly caused by the gabapentin treatment. Additionally, the study group was not limited to women with neuroproliferative type vestibulodynia, therefore the treatment wasn’t a logical choice for some. A placebo controlled study was just completed this year, which showed no improvement in pain with gabapentin treatment over the placebo. (5) But once again, the study group was not limited to women likely to have neuroproliferative type vestibulodynia. While these clinical trials are discouraging, their designs are less than ideal and the results have to be looked at critically. While the treatments do not appear to work for most women in these study groups, you could be in the subset of women where the topical treatments do work. These treatments may still be on your list of things to try first since they are relatively easy and low risk. In cases where simpler treatments fail, surgery is another option. Vestibulectomy is the surgical removal of the vestibule tissue. There are high success rates for full vestibulectomy in women with provoked neuroproliferative vestibulodynia, in the range of 80% of women with significant pain relief. (3, 6)

For inflammatory vestibulodynia, treating the underlying infection or allergy is key. Vestibulectomy is considered if the more conservative treatments fail. (3)

Most women with vestibulodynia also have pelvic floor muscle dysfunction, which is treated separately.

I have primary, provoked, neuroproliferative vestibulodynia. I was diagnosed in December 2017. I tried the conservative treatments (topical hormones, topical nerve blockers, physical therapy, muscle relaxer suppositories) before having a vestibulectomy in September 2018. You can read more about my journey to diagnosis on the About Me page. I’ve also written blog posts about my experience with vestibulodynia and vestibulectomy.

References

1. Main source: Irwin Goldstein, Anita H. Clayton, Andrew T. Goldstein, Noel N. Kim, and Sheryl A. Kingsberg. 2018. Textbook of Female Sexual Function and Dysfunction, Diagnosis and Treatment. John Wiley & Sons Ltd., Hoboken, NJ. https://onlinelibrary.wiley.com/doi/book/10.1002/9781119266136

2. Burrows LJ, Kingman D, Pukall CF, and AT Goldstein. 2008. Umbilical hypersensitivity in women with primary vestibulodynia. The Journal of Reproductive Medicine 53(6): 413-6. https://www.ncbi.nlm.nih.gov/pubmed/18664058

3. King M, Rubin R, and AT Goldstein. 2014. Current Uses of Surgery in the Treatment of Genital Pain. Current Sexual Health Reports 6(4) 252-8. https://link.springer.com/article/10.1007/s11930-014-0032-8

4. Boardman LA, Cooper AS, Blais LR, and CA Raker. 2008. Topical gabapentin in the treatment of localized and generalized vulvodynia. Obstetrics and Gynecology 112(3) 579-85. https://www.ncbi.nlm.nih.gov/pubmed/18757655

5. Brown CS, Bachmann GA, Wan J, Foster DC, and the Gabapentin (GABA) Study Group. 2018. Gabapentin for the Treatment of Vulvodynia: A Randomized Controlled Trial. Obstetrics and Gynecology 131(6): 1000-7. https://www.ncbi.nlm.nih.gov/pubmed/29742655

6. Rubin R, Winter A, Plascencia P, and I Goldstein. 2017. V9-02 Complete Vestibulectomy for Neuroproliferative Vestibulodynia (NPVD): Urologic Surgical Technique and Outcomes. The Journal of Urology 197(4) Supplement: e1056. https://www.jurology.com/article/S0022-5347(17)33904-6/abstract  

7. Foster DC, Kotok MB, Huang LS, Watts A, Oakes D, Howard FM, Poleshuck EL, Stodgell CJ, and RH Dworkin. 2010. Oral desipramine and topical lidocaine for vulvodynia: a randomized controlled trial. Obstetrics and Gynecology 116(3) 583-93. https://www.ncbi.nlm.nih.gov/pubmed/20733439

8. Morin M, Dumoulin C, Bergeron S, Mayrand MH, Khalife S, Waddell G, Dubois MF, and the Provoked vestibulodynia (PVD) Study Group. 2016. Randomized clinical trial of multimodal physiotherapy treatment compared to overnight lidocaine ointment in women with provoked vestibulodynia: Design and methods. Contemporary Clinical Trials 46: 52-9. https://www.ncbi.nlm.nih.gov/pubmed/26600287

9. LJ Burrows and AT Goldstein. 2013. The Treatment of Vestibulodynia with Topical Estradiol and Testosterone. Sexual Medicine 1(1) 30-3. https://www.ncbi.nlm.nih.gov/pubmed/25356284 Open Access Journal Direct Link: https://www.smoa.jsexmed.org/article/S2050-1161(15)30010-6/fulltext