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Vulvodynia and Vestibulodynia

The vulva, not the vagina, is the external portion of the female genitalia which includes the labia majora, labia minora, and vulvar vestibule (introitus and urethral meatus). It's important to differentiate between the vagina and the vulva as knowing the differences can aid physicians in helping you get a more accurate diagnosis. Pain symptoms and sexual dysfunction are known to effect libido/sexual functioning, relationship satisfaction, and overall mental health (Paquet et al,. 2019).

Many factors (list is not exhaustive) contribute to vulvar pain (Benoit- Piau et al., 2018; Jaxowich et al., 2021; Rajalaxmi et al., 2018; Vasileva et al., 2020):

  • Hormonal

  • Inflammation

  • Musculoskeletal

  • Central and peripheral neurological mechanisms

  • Structural and psychosocial barriers (anxiety, depression, PTSD, fear, avoidance, rumination, lack of partner support, trauma, low self-esteem, lack of social support, negative self-image, isolation, stigma, racism, transportation etc..)  (Niedenfuehr et al., 2023).

 

 

 

 

 

 

 

 

 

Generalized Vulvodynia

Vulvodynia is generally characterized as pain in the vulva (either provoked, unprovoked or mixed) and can be a difficult disorder to treat (Bergeron et al., 2020, Vasileva et al., 2020). According to Dr. Irwin Goldstein, vulvodynia is a very complex disorder and consists of many unique conditions with various presentations, and includes all sub-types of vestibulodynia and clitorodynia and can affect up to 16% of women (Vasileva et al., 2020; San Diego Sexual Medicine, n.d.). Multiple societies, including the International Society for the Study of Women's Sexual Health, implemented a new vulvar pain and vulvodynia terminology that "acknowledges" the clinical complexity involved in vulvar pain and vulvodynia (Bornstein et al., 2015). However, these terms are still subject to change and have many overlapping symptoms and may benefit from multiple treatments (Bornstein et al., 2015). Receiving a diagnosis of vulvodynia, vestibuldoynia, or any of the other sexual dysfunction issues can be greatly lengthened, and most women end up seeing an average of 5+ providers. Additionally, existing barriers prohibit patients from getting an accurate diagnosis. A study by Webber et al. (2022) highlights the existing issues "surrounding health care provider knowledge, attitude and system challenges, while specialist and healthcare provider availability act as major barriers to timely diagnosis. Additionally, lack of patient knowledge and existing stigmas that surround sexual discourse are prevalent.

 The pain from generalized vulvodynia can range in severity from being unable to wear jeans to experiencing pain while urinating. Many people describe the pain as burning, stinging, lacerating, or as "knife-like" pain. The pain can be constant or can come and go when provoked with tampons, riding a bike or a horse, urination, having sex, or getting a pelvic exam. Sometimes even sitting for long periods can trigger pain symptoms. Oftentimes, vulvodynia can get mistaken for pudendal neuralgia which is another type of sexual dysfunction that causes pain and other symptoms throughout the pelvic floor. A multi-modal method consisting of pelvic floor PT, cognitive therapy, and also other medical treatments are recommended for approaching vulvodynia (Brotto et al., 2015; Smith et al., 2019). To further understand vulvodynia and its subtypes, "When Sex Hurts" by Dr. Andrew Goldstein and Dr. Irwin Goldstein is a great read.

Various Descriptors: 2015 Consensus Terminology and Classification of Persistent Vulvar Pain from Borstein et al. (2015):

  • Localized (eg. vestibulodynia, clitorodynia) or generalized, mixed (localized and generalized)

  • Provoked (eg. insertional, contact), spontaneous or mixed (provoked and spontaneous), unprovoked (no contact/touch)

  • Onset (primary or secondary)

  • Temporal pattern (intermittent, persistent, constant, immediate, delayed)

Vestibulodynia: Provoked Vestibulodynia and Unprovoked Vestibulodynia

Alternatively, vestibulodynia refers to the pain located solely in the vestibule, which also surrounds the vagina and the urethra. The vestibule is made from urethral and bladder tissue (Goldstein, n.d). Often times, this condition is diagnosed as vaginismus when this actually is vestibulodynia. See the vaginismus page for more informtation on this website. There are several types of vestibulodynia including congenital neuroproliferative vestibulodynia, hormonally - mediated vestibulodynia, and acquired neuroproliferative.

 

According to Brotto et al. (2020), vestibulodynia often is categorized into two sections, provoked vestibulodynia (PVD) and unprovoked vestibulodynia which is listed under the genito-pelvic pain / penetration disorder in the 5th edition of the DSM - 5. Often times, PVD and genito-pelvic pain / pentration are used interchangeably and mean the same thing (Brotto et al,. 2020). PVD is characterized as the triggering or induced pain to the vulva in the vestibule through sexual intercourse, tampon usage, speculum, fingering, or q - tip examination, and the amount of pain that is "provoked" for women varies (Brotto et al., 2020). Patients often describe the pain as, "burning, searing, cutting, lacerating, raw, or knife-like."

Congenital Neuroproliferative Vestibulodynia

Lev and Witkin (2016) portray that patients with provoked vestibulodynia or congenital neuroproliferative vestibulodynia, may have a high amount of nerves/neuroproliferation that have been around since the development of the fetus or since birth. The vestibule is believed to be of “endodermal origin" (Lev and Witkin, 2016). Sometimes, this neuroproliferation may be acquired early on in life and recognized in one’s youth. The lining of the belly button is believed to have the same type of tissue as vestibule as the umbilicus develops at birth (Burrows et al., 2008). If it's sensitive in a similar way to your vestibule, you may be more likely to have congenital neuroproliferative vestibulodynia. These people tend to have a substantial amount of neural hypertrophy compared to those with secondary provoked vestibulodynia.

Vestibulectomy Surgery for Neuroproliferative Vestibulodynia

Patients with a diagnosis of neuroproliferative most likely will be in need of a surgical procedure called a vestibulectomy by a skilled sexual medicine doctor. Patients generally have a full vestibulectomy than a partial, which are shown as more successful in achieving pain-free intercourse and tampon usage. Success rates range from 80-92% in the providers who I have sought consults with. This surgery also can be quite daunting, but it comes with little risks. During this surgery, the labia minora is retracted and 3 mm of the vulvar vestibule is removed. If you think of the vestibule like a clock, the tissue is removed just below the urethra at the 12 o'clock position all the way to the 6 o'clock position). The procedure should take no more than an hour and patients are sent home the same day. While this procedure is seen as a last resort by many providers, it really should be more of a middle to first line treatment as no amount of pelvic floor PT, hormonal therapy, dilator therapy, and cognitive therapy can combat a condition which has existed since birth. There is a great vestibulectomy Facebook group for individuals to receive support and ask questions, and Dr. Rachel Rubin has a video on her Youtube channel that portrays the entire surgery (very explicit).

Hormonally - Mediated Vestibulodynia

According to Burrows & Goldstein (2013), combined hormonal contraceptives (CHC) also known as birth control are a known cause of vestibulodynia. CHC contains a “luteinizing hormone,” which decreases the production of eggs in the ovaries. Two components, synthetic estrogen and synethtic progestin, which are contained in CHC lead to an increase of hepatic production of sex hormone binding globulin (SHBG) (Burrows & Goldstein, 2013). High levels of SHBG can cause decreased levels of free testosterone. Alternatively, CHCs have also been proven to change hormone receptors and patterns in the vestibular mucosa (Goldstein et al., 2014). One's pain threshold also be lowered.

 

If you think you have this, request a blood panel from your physician. The panel should include free testosterone, total testosterone, and SHBG test. High levels of SHBG and low testosterones can imply you may have hormonally-mediated vestibulodynia.

Upon stopping CHCs, and applying estradiol and testosterone cream/gel to your vulvar vestibule should resolve the issue. The creams or gels are produced at a compounding pharmacy by a local physician or specialist, the hormonally mediated vestibulodynia can be resolved. Application of an estradiol testosterone cream should be applied for three to four months, and it may cause a bit of discomfort for a few weeks. The compound may need to be revised a bit if it is not working after 3-4 weeks. After the application of the cream, the vulvar vestibule tissues should appear pink and “healthy looking,” not grey or atrophied.

Acquired Neuroproliferative Vestibulodynia

Research has shown there to be a high amount of nerves surrounding the vestibule with different DNA sequences in genes. Women that have a lot of allergies or allergic reactions, and/or skin disorders, such as chronic uticaria and dermatitis may have this. More research is needed on this condition, but there has been evidence of an association between mast cell activation syndrome (MCAS) and vestibulodynia (Regauer, 2016). 

Various Methods of Cognitive Therapy for Sexual Pain and Vulvodynia

Mood disorders often arise in patients that suffer from vulvodynia, and many studies have been published on quality of life, depression, and anxiety. Acceptance and Commitment Therapy (ACT), Eye Movement Densentization and Reprocessing (EMDR), Mindfulness - Behavioral Cognitive Therapy (MBCT), and Cognitive Behavioral Therapy  (CBT) have the most popular therapies for vulvodynia (Engstrom et al., 2021). 

  • ACT revolves around "controlling unwanted psychological experiences, and seeks to increase functioning (Engstrom, et al., 2021)

  • CBT has been proven to manage pain and sexual and psychological symptoms and MBCT has been shown to be equivalent to CBT (Brotto et al,. 2020). CBT works to challenge and address emotions and behaviors surrounding pain, and can help enforce relaxation skills, address areas of avoidance, and ameliorate any sexual dysfunctions.

  • MBCT is a non-judgemental, meditative practice,which increases awareness of thoughts related to pain. No attempt to control or change them is emphasized at all during each session (Sipe et al., 2012). Sipe et al. (2012) reveal that it encourages and proposes alternatives of being and relating to thoughts while placing emphasis on changing or transforming or challenging specific cognition. In a comparison study by Brotto et al. (2020), MBCT has been shown to be just as effective as cogntiive therapy in reducing pain intensity.

  • EMDR has been known to help individuals suffering through traumas and PTSD to slowly disassociate themselves with the event. Shapiro (2014) reveal that EMDR has been proven as effective in treating those who have gone through medical traumas or have negative past events in the medical industry. While retelling a traumatic event, a patient will move their eyes back and forth horizontally while re-processing the event. Over time, the retelling of such an event should get easier.

 

Physical Therapy for Vulvodynia

Pelvic screenings should be utilized in a gynecology exam and multiple treatments should include pelvic floor physical therapy (Pendergast et al., 2017).  Lo et al. (2021) describe the importance of the assessment of pelvic floor muscle assessment when treating patients for provoked vestibulodynia or any other form of sexual dysfunction. Patients may be told that pelvic floor physical therapy can cure vulvodynia, but often times, physical therapy can only help manage and relieve the symptoms. The muscles surrounding the vulva and vagina may be tight and constricted, which can cause nerve pain and other unpleasant symptoms such as urinary frequency or urgency, constipation, and lower abdomen pain. Despite what patients are told, physical therapy is not a cure for vulvodynia but may alleviate the symptoms. Pelvic floor physical therapy is best paired with multi-disciplinary approaches with a physician and cognitive therapist in the team.

Want to learn more? Click the links

How to get a Diagnosis:

Note: All vulvar specialists should have experience with dealing with patients who have a history of trauma. If you feel uncomfortable at any time during the exam, ask them to slow down and talk you through it. Some providers may let you incorporate meditation practices or diaphragmatic breathing during the exam.They can even let you see with a mirror and let you participate in the process to give you more control. Do not let them intimidate you or push you into doing anything you are not comfortable with.

  • A skilled doctor should take the time to thoroughly consider your history compassionately and with patience. If they show frustration or start to dismiss you, this is not the right specialist.

  • A knowledgeable provider will perform a thorough examination (with your consent). They may perform a vulvar exam with a q-tip and tap around the vestibule to identify areas of discomfort and pain.

  • They can also take a sample of cells to check for bacterial or yeast infections

  • Vulvoscopy is often necessary to further evaluate the tissues but it is not always confirmatory (Micheletti et al., 2008) A unique microscope, a colposcope, is used to examine the vulva. Special stains may be used, which often can be uncomfortable, but soon goes away.

 

 

 

 

References

Benoit-Piau, J., Bergeron, S., Brassard, A., Dumoulin, C., Khalifé, S., Waddell, G., & Morin, M. (2018). Fear-avoidance and Pelvic Floor Muscle Function are Associated With Pain Intensity in Women With Vulvodynia. The Clinical journal of pain, 34(9), 804–810. https://doi.org/10.1097/AJP.0000000000000604

Bergeron, S., Reed, B. D., Wesselmann, U., & Bohm-Starke, N. (2020). Vulvodynia. Nature reviews. Disease Primers, 6(1), 36. https://doi.org/10.1038/s41572-0

Bornstein, J., Goldstein, A. T., Stockdale, C. K., Bergeron, S., Pukall, C., Zolnoun, D., Coady, D., & consensus vulvar pain terminology committee of the International Society for the Study of Vulvovaginal Disease (ISSVD), the International Society for the Study of Womenʼs Sexual Health (ISSWSH), and the International Pelvic Pain Society (IPPS) (2016). 2015 ISSVD, ISSWSH, and IPPS Consensus Terminology and Classification of Persistent Vulvar Pain and Vulvodynia. Journal of lower genital tract disease, 20(2), 126–130. https://doi.org/10.1097/LGT.0000000000000190

Brotto, L. A., Bergeron, S., Zdaniuk, B., & Basson, R. (2020). Mindfulness and cognitive behavior therapy for provoked vestibulodynia: Mediators of treatment outcome and long-term effects. Journal of consulting and clinical psychology, 88(1), 48–64. https://doi.org/10.1037/ccp0000473

Brotto, L. A., Yong, P., Smith, K. B., & Sadownik, L. A. (2015). Impact of a multidisciplinary vulvodynia program on sexual functioning and dyspareunia. The journal of sexual medicine, 12(1), 238–247. https://doi.org/10.1111/jsm.12718

Burrows, L. J., Klingman, D., Pukall, C. F., & Goldstein, A. T. (2008). Umbilical hypersensitivity in women with primary vestibulodynia. The Journal of reproductive medicine, 53(6), 413–416.

 

Burrows, L. J., & Goldstein, A. T. (2013). The treatment of vestibulodynia with topical estradiol and testosterone. Sexual medicine, 1(1), 30–33. https://doi.org/10.1002/sm2.4

Goldstein, Irwin. (n.d.). Vestibulodynia. San Diego Sexual Medicine. https//www.sandiegosexualmedicine.com/female-issues/vestibulodynia

Goldstein, A. T., Belkin, Z. R., Krapf, J. M., Song, W., Khera, M., Jutrzonka, S. L., Kim, N. N., Burrows, L. J., & Goldstein, I. (2014). Polymorphisms of the androgen receptor gene and hormonal contraceptive induced provoked vestibulodynia. The journal of sexual medicine, 11(11), 2764–2771. https://doi.org/10.1111/jsm.12668


Hess Engström, A. H., Kullinger, M., Jawad, I., Hesselman, S., Buhrman, M., Högberg, U., & Skalkidou, A. (2021). Internet-based treatment for vulvodynia (EMBLA) - Study protocol for a randomised controlled study. Internet interventions, 25, 100396. https://doi.org/10.1016/j.invent.2021.100396

Jackowich, R. A., Smith, K. B., & Brotto, L. A. (2021). Pain Characteristics, Psychosocial Wellbeing, and Sexual Wellbeing of Women Diagnosed With Provoked Vestibulodynia and a History of Sexual Abuse. Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstetrique et gynecologie du Canada : JOGC, 43(4), 447–454. https://doi.org/10.1016/j.jogc.2020.11.021

King, M., Rubin, R. & Goldstein, A.T. (2014). Current Uses of Surgery in the Treatment of Genital Pain. Curr Sex Health Rep 6, 252–258. https://doi.org/10.1007/s11930-014-0032-8

Lo, L., Lamvu, G., Alappattu, M., Witzeman, K., Markovic, D., & Rapkin, A. (2021). Predictors of Mucosal and Muscle Pain in Vulvodynia: A Cross-Sectional Analysis From the National Vulvodynia Registry. The journal of pain, 22(2), 161–170. https://doi.org/10.1016/j.jpain.2020.07.001

Micheletti, L., Bogliatto, F., & Lynch, P. J. (2008). Vulvoscopy: review of a diagnostic approach requiring clarification. The Journal of reproductive medicine, 53(3), 179–182.

Niedenfuehr, J. M.; King, L.; Edwards, M.; Scoping review of the psychosocial barriers that people with a vulva face when seeking treatment for vulvodynia. (Submitted to Journal of Sexual Medicine, poster presentation for March 2023)

Pâquet, M., Vaillancourt-Morel, M. P., Jodouin, J. F., Steben, M., & Bergeron, S. (2019). Pain Trajectories and Predictors: A 7-Year Longitudinal Study of Women With Vulvodynia. The journal of sexual medicine, 16(10), 1606–1614. https://doi.org/10.1016/j.jsxm.2019.07.018

Prendergast S. A. (2017). Pelvic Floor Physical Therapy for Vulvodynia: A Clinician's Guide. Obstetrics and gynecology clinics of North America, 44(3), 509–522. https://doi.org/10.1016/j.ogc.2017.05.006

Rajalaxmi, V., Shalini, V., Yuvarani, G., Tharani, G., & Dhanalakshmi, S. (2018). Impact of pelvic floor muscle training with behavioral modification and yoga on pain and psychological distress in vulvodynia-A double blinded randomized control trials. Research Journal of Pharmacy and Technology, 11(10), 4447–4451. https://doi.org/10.5958/0974-360X.2018.00814.4

Regauer S. (2016). Mast cell activation syndrome in pain syndromes bladder pain syndrome/interstitial cystitis and vulvodynia. Translational andrology and urology, 5(3), 396–397. https://doi.org/10.21037/tau.2016.03.12

Shapiro F. (2014). The role of eye movement desensitization and reprocessing (EMDR) therapy in medicine: addressing the psychological and physical symptoms stemming from adverse life experiences. The Permanente journal, 18(1), 71–77. https://doi.org/10.7812/TPP/13-098

Sipe, W. E., & Eisendrath, S. J. (2012). Mindfulness-based cognitive therapy: theory and practice. Canadian journal of psychiatry. Revue canadienne de psychiatrie, 57(2), 63–69. https://doi.org/10.1177/070674371205700202

Smith, K. B., Sadownik, L. A., Dargie, E., Albert, A., & Brotto, L. A. (2019). Multidisciplinary Treatment for Provoked Vestibulodynia: Treatment Trajectories, Predictors, and Moderators of Sexual Distress and Pain. The Clinical journal of pain, 35(4), 335–344. https://doi.org/10.1097/AJP.0000000000000682

Vasileva, P., Strashilov, S. A., & Yordanov, A. D. (2020). Aetiology, diagnosis, and clinical management of vulvodynia. Przeglad menopauzalny = Menopause review, 19(1), 44–48. https://doi.org/10.5114/pm.2020.95337

Webber, V., Miller, M. E., Gustafson, D. L., & Bajzak, K. (2020). Vulvodynia Viewed From a Disease Prevention Framework: Insights From Patient Perspectives. Sexual medicine, 8(4), 757–766. https://doi.org/10.1016/j.esxm.2020.07.001

Xie, Y., Shi, L., Xiong, X., Wu, E., Veasley, C., & Dade, C. (2012). Economic burden and quality of life of vulvodynia in the United States. Current medical research and opinion, 28(4), 601–608. https://doi.org/10.1185/03007995.2012.666963

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