Congenital or acquired neuroproliferative vulvodynia

Neuroproliferative vulvodynia is a condition whereby the vestibule, around the entrance to the vagina, has a lot (a proliferation) of pain-sensing nerves in it. ‘Neuroproliferative’ means, essentially, nerves that have overgrown, or proliferated.

There are several forms of vulvodynia, with neuroproliferative vulvodynia, either congenital or acquired, just one part of the puzzle.

The vulva is famous for having more nerve-endings in it than the rest of our body, but this can get out of control. Neuroproliferative vulvodynia is either congenital (you’re born with it) or acquired (it develops over time). Any type of vulvodynia causes severe pain, preventing anything from touching or entering the vagina.

Early trauma and vaginal sensitivity

Hypersensitivity of the vaginal mucosa may develop early in life, only seeming to appear in teenage years as girls try to use tampons and experiment with their vaginas sexually.

Adverse events early in life is linked with adults with vulvodynia, which has been attributed to a dysfunctional feedback loop in the hypothalamic-pituitary-adrenal (HPA) axis. Animal models have found that early stress in mice resulted in a lifetime of vaginal sensitivity. Irritating chemicals applied to the vagina of mice led to a lifetime of hypersensitivity.

How the nerve fibres in your vestibule work

There are a few types of nerve fibre in our bodies, and in neuroproliferative vulvodynia, there tends to be more of one type, the C-afferent nociceptors. C-afferent nociceptors send pain signals, so more of these C nerve fibres can mean more pain, but this pain is quite specific: slow, long-lasting, burning pain.

This is a controversial discussion in vulvar circles. Some vulvar specialist researchers think neuroproliferation to be a response to trauma or inflammation of the mucosa, meaning that the perception of pain is due to inflammation of nerves.

To counter this, it is known that a reduction – not an increase – in nerve fibre density is associated with pain. Our understanding of vulvodynia is limited.

How do I know if my vulvodynia is neuroproliferative, congenital or acquired?

You need to be examined by a pelvic pain specialist for a correct diagnosis.

You can’t do this yourself, but it can be good to know what a practitioner is looking for. It’s also useful to establish whether you have congenital or acquired neuroproliferative vulvodynia.

  • If the pain or sensitivity is all around the vestibule, this could mean the vulvodynia is neuroproliferative, since this is the area those nerves tend to grow.
  • If there is hypersensitivity in the umbilical area (around your belly button) it could indicate that your type of vulvodynia may be congenital, since the umbilicus and the vestibule are made from the same tissue when we are developing in the womb.
  • In congenital neuroproliferative vulvodynia, you may have experienced pain when you first tried to use a tampon or have anything put into your vagina (penis, sex toy, fingers).
  • If you have acquired neuroproliferative vulvodynia, you may have a history of vulvovaginal infections (yeast, bacteria, etc.) or had an allergic reaction to something.
  • Women who acquire this type of vulvodynia can have higher levels of immune-related mediators in blood tests, such as elevated mast cells and pro-inflammatory cytokines

Treatments for acquired or congenital neuroproliferative vulvodynia

Each person will be treated as an individual, with your unique set of signs and symptoms taken into account when treatment is discussed.

Treatments range from medication (capsaicin, anti-depressants topically or orally or both, gabapentin), botulinum toxin (Botox) injections to block nerve signals, and where appropriate, vestibulectomy to remove (and replace) the tissue with too many nerves for tissue without this many nerves.

The vestibulectomy can be extremely successful when performed by a highly experienced surgeon.

Speak to your local pelvic pain specialist for more information.

References

  • Burrows LJ, Goldstein AT. The Treatment of Vestibulodynia with Topical Estradiol and Testosterone. Sexual Medicine. 2013;1(1):30-33. doi:10.1002/sm2.4.
  • Bornstein J, Goldstein AT, Stockdale CK, et al. 2015 ISSVD, ISSWSH, and IPPS consensus terminology and classification of persistent Vulvar pain and Vulvodynia. The Journal of Sexual Medicine. 2016;13(4):607–612. doi:10.1016/j.jsxm.2016.02.167.
  • Bohm-Starke N et al. Neurochemical characterization of the vestibular nerves in women with vulvar vestibulitis syndrome. Gynecol Obstet Invest 1999; 48:270.
  • Burrows LJ, Klingman D, Pukall CF, et al. : Umbilical hypersensitivity in women with primary vestibulodynia. J Reprod Med. 2008;53(6):413–6
  • Harlow BL, He W, Nguyen R. Allergic Reactions and Risk of Vulvodynia. Annals of epidemiology. 2009;19(11):771-777. doi:10.1016/j.annepidem.2009.06.006.
  • Bornstein J, Cohen Y, Zarfati D, Sela S, Ophir E. Involvement of heparanase in the pathogenesis of localized vulvodynia. Int J Gynecol Pathol. 2008;27:136–41.
  • Foster DC, Piekarz KH, Murant TI, et al. Enhanced synthesis of proinflammatory cytokines by vulvar vestibular fibroblasts: Implications for vulvar vestibulitis. Am J Obstet Gynecol 2007;196;346.e1-346.e8.
  • Morin M, Carroll M-S, Bergeron S. Systematic Review of the Effectiveness of Physical Therapy Modalities in Women With Provoked Vestibulodynia. Sex Med Rev 2017;5:295–322.