The Connection Between Vulvar Pain and Endometriosis

Did You Know?

Endometriosis appears in a huge 10% of females aged 19 – 45 years-old. In rare cases, spontaneous vulvar endometriosis can present. – It is a potentially a subset of cutaneous endometriosis. Generally speaking, in the majority of cases, the cause of vulvar endometriosis, is linked to large lesions.

Unfortunately, the causal cases of this condition have been mistakenly determined following a patient’s response to their use of hormones after they have been wrongly diagnosed with intractable primary vulvodynia [1].

“With this mis- or delayed diagnosis comes increased psychological distress [to the patient], adding to the burden of disease” [1], thereby making it imperative to seek out an accurate diagnosis from a Vulva Pain Specialist, as opposed to a GP (General Practitioner), who has not had the necessary extensive training and practical clinical expertise

Vulvar Endometriosis

Vulvar endometriosis is not particularly widespread, and can present as primary vulvodynia (meaning the pain has always been apparent – for instance, the pain has presented since the first sexual penetration attempt; or the first tampon insertion). It could also imitate other root causes of long-term pelvic pain (e.g., interstitial cystitis). So to that end, unless the patient is under the care of an experienced Vulva Pain Specialist, this scenario can lead to conflicting patient management. Nonetheless: “a strong correlation of progressively increasing vulvar pain or discomfort to a woman’s menstrual cycle activity (with or without a visible lesion), should raise the likelihood of vulvar endometriosis. Moreover, there may or may not be features of concurrent pelvic endometriosis with a familial association” [1].

The Importance of Getting a Diagnosis as Soon as Possible

Research shows that: “Early identification of a possible vulvar endometriosis helps in getting the therapy right at first visit, & hopefully reduces the burden of disease. As it is recognised that these women will get a diagnosis only after several physician reviews, the potential psychological trauma of this disabling condition is immense alongside the burden of disease. This is increasingly being recognised” [1]

Preparing a ‘Pain Diary’

If you can compile a daily ‘Pain Dairy’ with 24 hourly slots, you can note the times and dates when the pain comes on; how long it lasts; and what you were doing before it came on, and after it ameliorated. These notes will be very valuable to show your Vulva Pain Doctor at the time of your in-person or online consultation.


[1]. Adedipe. T. O. & Chukwujama , U. Journal of Clinical Gynecology and Obstetrics.

“Vulvar Endometriosis Mimicking as Primary Vulvodynia in a Young Nulliparous Woman: Algorithm of Care Following a Rapid Literature Review.”  Volume 10, Number 2, June 2021, pages 35-39.