Self-Reported Aspects of Vulvodynia Assessed Through the Administration of an Online Questionnaire

Abstract

Vulvodynia is a chronic gynecological condition characterized by unexplained vulvar pain, which may significantly impact every aspect of women’s quality of life, encompassing physical, psychological, and social well-being. Due to its heterogeneous clinical presentation and associated comorbidities, vulvodynia is often misdiagnosed and/or not adequately treated. This descriptive observational study was conducted using an anonymous questionnaire, which was distributed through social media channels and included 29 questions (25 multiple-choice and four open-ended questions) and aimed to investigate participants’ most frequent symptoms, comorbidities, impact on quality of life, and treatment efficacy and costs. Analyzing a total of 221 answers, we found that burning (85%) and abrasion/irritation sensation (73%) are the most common symptoms, and they are most frequently localized in the vestibular area, while irritable bowel syndrome (35%) is the most common comorbidity. A significant negative effect on individual functioning was confirmed, also due to a noticeable diagnostic delay (4.5 years on average) and treatments’ prohibitive costs potentially impairing participants’ compliance. Our study provides valuable insights into self-reported aspects of women affected by vulvodynia, raising healthcare professionals’ awareness of this issue. Better knowledge of peculiar aspects of vulvodynia may help improve its diagnosis and promote a more personalized and efficient therapeutic approach.

1. Introduction

Vulvodynia is a chronic gynecological condition characterized by persistent vulvar pain in the absence of an identifiable cause, with an estimated prevalence ranging from 10% to 28% [1].

It affects women of all ages, with a peak incidence occurring in young women and a secondary increase in postmenopausal ones [2].

Despite its high prevalence, 40% of affected women do not seek medical attention, and 60% need to consult multiple specialists before receiving a definitive diagnosis [3]. These data highlight a significant gap in knowledge of this medical condition among healthcare professionals and in patients’ accessibility to appropriate care, exacerbating the physical and psychosocial burden experienced by affected women [4].

Accurate evaluation of vulvodynia/vestibulodynia requires a thorough clinical assessment and detailed medical history evaluation, examining current symptoms, comorbidities, possible iatrogenic factors, previous therapies and their outcomes, personal habits (e.g., hygiene, diet, alcohol consumption, smoking, and drug use), sexual history (including prior abuse), and psychological status (e.g., anxiety, depression, and irritability). Physical examination includes visual inspection of the vulvar region, vulvoscopy, palpation, the Q-tip test, and pelvic floor assessment. In cases where vaginal secretions or vulvar lesions are present, additional diagnostic procedures, such as vaginal swabs and biopsies, may be necessary.

There is no unanimous consensus on treatment, and most therapies lack strong evidence of efficacy for not being studied in randomized controlled trials with large sample sizes, although numerous options are available, including psychological, physical, and pharmacological interventions [5,6]. Current guidelines support an individualized, multidisciplinary, and multimodal treatment approach to vulvodynia [7] beginning with first-line non-invasive treatments such as psychosexual and psychotherapeutic support (e.g., cognitive behavioral therapy and mindfulness), topical and/or oral pharmacological interventions (e.g., tricyclic antidepressants and anticonvulsants, injectable corticosteroids, and lidocaine), and pelvic floor physiotherapy (PFPT), which includes electromyographic biofeedback, transcutaneous nerve stimulation, and pelvic floor rehabilitation. Second-line, minimally invasive, non-surgical treatments include anesthetic nerve blocks and botulinum toxin injections. If these interventions turn out to be ineffective, a third-line surgical approach may be considered, particularly when pain is localized to the vestibular region [1,4].

Adding complexity to this medical condition, many cases may be misdiagnosed, thus remaining untreated or not properly treated. Despite a systematic medical examination, diagnosing vulvodynia may be, indeed, very complicated due to many factors. First, it has multiple clinical presentations: in approximately 80% of cases, the predominant form is vestibulodynia, particularly among young women, whereas generalized forms are more common in postmenopausal women, and in other cases, pain is limited to the clitoris [6]. Second, symptoms may have different features, such as vulvar burning and/or irritation sensation, vaginal dryness and urinary pain. Third, associated comorbidities, such as irritable bowel disease, endometriosis, and painful bladder syndrome, may contribute to further increasing its clinical complexity and consequently make the diagnostic process even more challenging.

Given that certain symptoms of vulvodynia may be misinterpreted or even not recognized by using just conventional diagnostic methods, in our study we collected the results of an online self-administered questionnaire highlighting participants’ individual perceptions in order to offer a test that may support clinicians in identifying peculiar vulvodynia clinical presentations, thus helping with a more accurate clinical assessment.

2. Objective

The objective of this study was to collect data on the experience of women diagnosed with vulvodynia, focusing on their symptoms (type, site, time of onset, triggers), comorbidities, impact on their lives, and treatment efficacy along with their costs, through a structured, self-administered online questionnaire.

This self-report survey study with predominantly survey data helps to understand participants, enabling the identification of common patterns and individual data based on patient experiences, and doing so provides insight into important aspects of the impact of vulvodynia on individuals.

Ultimately, this approach may help clinicians in personalizing care and management of such a complex condition.

3. Materials and Methods

This was a descriptive observational study conducted through the analysis of an anonymous, self-reported and self-administered questionnaire (Table 1) targeting women of all ages diagnosed with vulvodynia. This study was approved by the Ethics Committee of Comitato Etico Area Vasta Sud Est (CEAVSE) approval code 25832 (11 June 2025).

Table 1. The questionnaire administered to our study population. The table includes selected items from the survey; the complete questionnaire is available in Supplementary Materials.

Questionnaire
What’s your age?
Have you ever been diagnosed with vulvodynia?
How much time did it take to receive a diagnosis after you had begun your medical/gynecological examinations? (months/years)
Please specify the site and type of pain.
Is your pain related to some specific activities/events? Please specify never/sometimes/always.
On a scale of 1 to 10, how would you rate the pain you experience/experienced when wearing tight pants, tampons, during sexual intercourse, or when sitting for long periods of time?
Does the pain intensify during the premenstrual phase? To what extent (a lot/quite a bit/a little)?
Do you have any comorbidities?
Have you had any previous spontaneous or operative vaginal births?
Did the symptoms of vulvodynia arise some months after childbirth?
How much does this pathology affect your professional, academic or school performance?
How much does this pathology affect your relationships?
Have you ever undergone any pharmacological and/or electrical therapy and/or pelvic floor rehabilitation? How much did it cost?
Have you seen any improvement from the therapy you underwent?
Have you recovered from symptoms?
Have you had any periods of temporary remission from the disease, whether spontaneous or after treatment? For how long?

The questionnaire was spread via social media platforms (Instagram) and published in the newsletter of the “Cistite.info” website to maximize the number of participants. It consisted of 29 questions, including 25 multiple-choice and 4 open-ended questions.

It was structured to be self-administered without professional guidance, integrating individual questions with validated assessment tools to investigate symptom features as well as their onset and impact on quality of life, associated comorbidities, time to diagnosis, and treatment efficacy and costs. Participation was voluntary and anonymous, and no financial incentive was offered. Completion of the questionnaire was considered confirmation of informed consent.

The development of our questionnaire was inspired by and based on selected items from the Vulvodynia Pain Assessment Questionnaire (VPAQ) [8], a questionnaire with strong psychometric validity, particularly those addressing the onset, localization, temporal course, and intensity of burning pain, as well as associated symptoms of vulvar pain. These items also assess the impact of pain on daily activities, sexual functioning, and academic or occupational performance. Additional items were included to evaluate the coexistence of comorbid conditions, the role of childbirth and possible operative delivery, and the economic burden associated with medical, physiotherapeutic, and psychotherapeutic treatments. The wording was translated and adapted to improve clarity for Italian participants.

All participants were asked to assess their pain severity using the Numeric Pain Rating Scale (NPRS). The NPRS employed in this study is a unidimensional 10-point scale that evaluates pain intensity in adults. The scale ranges from 1 to 10, where 1 corresponds to “no pain” and 10 represents “worst imaginable pain,” directly correlating with the inability to perform daily activities.

The collected answers were subsequently analyzed and reported in terms of percentage and mean. Open-text responses were reviewed and categorized using a descriptive qualitative approach.

4. Results

A total of 221 responses were collected and analyzed. The mean age of our study group was 35 years, ranging from 17 to 71 years, with 116 out of 221 women being under 35 years of age.

Ninety-two percent (204 women) of the study population reported receiving a diagnosis of vulvodynia from a clinician, while the remaining 8% (17 women) of participants reported experiencing symptoms consistent with vulvodynia but had not yet received a formal clinical diagnosis.

The estimated mean time to obtain a diagnosis is 4.5 years (Table 2).

Table 2. Demographic data of the participants.

	n (%) or Mean ± Range
Age (years)	35 (17–71)
Age < 35 years	116 (52.5%)
Diagnosis of vulvodynia
– Diagnosed by a clinician	204 (92%)
– No formal diagnosis	17 (8%)
Mean time to diagnosis	4.5 years
Parity
– Nulliparous women	185 (84%)
– Parous women	36 (16%)
– Operative vaginal delivery	20 (55.6% of deliveries)

The percentages were calculated based on the number of respondents to each specific question. Given the limited number and depth of open-text responses, a full qualitative thematic analysis was not feasible. As regards the site of pain, only 161 (73%) out of 221 women answered this question. The lower response rate may reflect difficulties in identifying the anatomical area or uncertainty about symptom localization. The most common form of pain in our study is vestibulodynia (45%, 72 out of 161 women), followed by generalized vulvodynia (26%, 41 out of 161 women), in which the pain affects the entire vulva (Figure 1). Seventeen percent (28 out of 161 women) of the study population reported that their vulvar pain tends to extend beyond the vulvar area, while in 6% (10 out of 161 women) of cases it involves just the clitoris.

Figure 1. Pain localization in our study population.

The most common symptoms in our study population are burning (85%, 187 out of 221 participants), followed by abrasion/irritation sensation (73%, 161 out of 221 participants), and pinprick/stabbing sensations in 63% (140 out of 221 women) of cases (Figure 2).

Figure 2. Main symptoms reported by our study population.

We found that 154 women (69.7%) suffer from mixed pain, which can occur either due to a triggering event or spontaneously. Only 10 women (4.5%) suffer from spontaneous pain, while 57 women (25.8%) have reported that their pain is exclusively provoked.

Daily activities such as sitting, wearing tight pants, and using tampons trigger vulvar pain in 68%, 69%, and 68% of participants, with mean NPRS values of 6.1, 6.6, and 6.7, respectively (Table 3). Dyspareunia, one of the main features of vulvodynia/vestibulodynia, is present in 86% of women, reporting a pain intensity of 6 or higher; 27% of them consider penetrative sexual intercourse even impossible.

Table 3. NPRS rating in relation to daily activities. Range is 1–10 for all items.

Trigger	n (Pain ≥ 6)	%	NPRS Value
Wearing tight pants	153	69	6.6 ± 2.64
Use of vaginal tampons	150	68	6.7 ± 3.00
Gynecological examination	154	70	6.4 ± 2.56
Sexual intercourse	189	86	7.6 ± 2.31
Sitting for a long time	148	68	6.1 ± 2.72

Moreover, 84% of the women responding to the survey reported an intensification of pain during the premenstrual phase: 24% of these participants responded that pain intensifies “a lot,” 32% responded that pain intensifies “quite a bit,” and 28% responded that pain intensifies “a little”.

When it comes to comorbidities, irritable bowel syndrome is the most frequently associated disease with vulvodynia, being present in 35% (77 out of 221 women) of cases, followed by anxiety and depression in 30% (67 out of 221 women) of cases and recurrent candida infections in 24% (54 out of 221 women) of participants (Figure 3). Among the other associated medical conditions, participants reported painful bladder syndrome (PBS), pelvic inflammatory disease (PID), fibromyalgia, endometriosis, pelvic pavement hypertone, dysbiosis, and other diseases like vulvar/vaginal skin diseases (lichen sclerosus, lichen planus, and lichen simplex), PolyCystic Ovary Syndrome (PCOS), pudendal neuropathy, herniated disc, migraine, gastric reflux, thyroiditis, celiac disease.

Figure 3. Frequency of diseases associated with vulvodynia in our study population. PBS: Painful Bladder Syndrome. Dysbiosis: imbalance of the normal microbiota. No associated pathology: no reported comorbid condition. Other pathologies: comorbidities not included in predefined categories. Vulvar/vaginal skin diseases (lichen sclerosus, lichen planus, and lichen simplex), polycystic ovary syndrome (PCOS), pudendal neuropathy, herniated disc, migraine, gastroesophageal reflux, thyroiditis, and celiac disease are included in the category “other patologiess”.

Our questionnaire also examined the correlation between vulvodynia/vestibulodynia and participants’ parity, especially relating to the occurrence of an operative vaginal delivery prior to the onset of symptoms. We found that 185 (84%) out of 221 women did not have any vaginal deliveries, while 36 (16%) women had at least one previous vaginal delivery. Among parous women, 20 (56%) out of 36 had an operative vaginal delivery, while the remaining 16 (44%) had an eutocic delivery. Eleven (31%) out of 36 women reported the onset of symptoms in the months following childbirth, while the remaining 25 (69%) declared that the condition was not associated with the pregnancy; specifically, 13 (36%) out of 36 women declared that the condition was pre-existing to childbirth.

When examining symptom influence on quality of life, we found that vulvodynia/vestibulodynia has a strong negative impact on women’s professional, academic and social/romantic lives, with 70% of participants experiencing difficulties and instability in their relationships and 37% of women in their professional performance.

As to treatments, 185 (84%) out of 221 participants reported adopting pharmacological therapy. Thirty-six (16%) out of 221 women had never undergone any pharmacological treatment, and seven (19%) of them declared not to use it due to its prohibitive cost.

Pelvic floor rehabilitation was used by 75% (156 out of 207 women who answered the question) of the study population, while 41% (91 out of 221) tried electrical therapy. Among these 91 women, 83 specified the type of treatment they underwent: TENS (Transcutaneous Electrical Nerve Stimulation), electroporation, and TECAR therapy in 73% (61 women out of 83), 18% (15 women out of 83) and 8% (seven women out of 83) of participants, respectively.

Overall, we found that 68 (31%) women underwent all three types of treatment (pharmacological, physical, and electrical therapy) and that 52% (116 out of 221 women) of participants sought psychotherapeutic support (Figure 4).

Figure 4. Percentage of participants submitted to specific therapeutic approaches for vulvodynia.

Another interesting consideration is the cost of therapies for vulvodynia. Our survey shows that the average monthly cost is about 266 euros, which translates into an annual expense of 3192 euros per woman.

Ninety (41%) out of 221 women denied any remission period, 65 (29%) women reported having had at least one remission during their lifetime, and 58 (26%) women reported having had periods of remission more than twice. Only eight (4%) women have not experienced any relapse of symptoms.

In our population, 194 (88%) out of 221 women still suffer from vulvodynia, while 27 (12%) women are currently asymptomatic.

5. Discussion

Vulvodynia is the most common cause of dyspareunia in premenopausal women [3], with a lifetime prevalence reaching 13% of all women [9].

The first definition of vulvodynia was provided by I.G. Thomas in 1880, describing it as a hyperesthesia of the vulva due to “an excessive sensitivity of the nerve fibers responsible for the innervation of the vulvar mucosa in a specific part of the vulva itself” [2]. In 2021, the 11th revision of the International Classification of Diseases by the World Health Organization [10] categorized vulvodynia as chronic primary pain, recognizing it as a distinct pain disorder associated with functional impairment and emotional distress. This definition supports the involvement of nociplastic mechanisms, including central sensitization and altered pain modulation. The frequent overlap with other chronic primary pain conditions, such as fibromyalgia and irritable bowel syndrome, suggests shared neurobiological pathways, potentially involving neuroinflammation, neuroimmune dysregulation, and stress-related mechanisms [11]. Perimenopausal hormonal fluctuations, particularly declining estrogen and androgen levels, may contribute to vulvar mucosal vulnerability, altered nociception, and neuroinflammatory processes, potentially facilitating the onset or persistence of vulvodynia [7]. This perspective also reinforces the need for a multidisciplinary and mechanism-based therapeutic approach.

Diagnosis and treatment of vulvodynia remain controversial and require more research to reach a higher level of accuracy. The use of standardized questionnaires, such as the Vulvar Pain Assessment Questionnaire (VPAQ), is useful in gathering diagnostic information [8]. In addition to assessing pain severity and quality through specific scales, the VPAQ evaluates emotional and cognitive responses and impact on social life and sexual function, including self-stimulation and penetration [12]. Our questionnaire was, in a small part, based on selected items from the VPAQ developed by Dargie et al. The use of the questionnaire, as in our study, represents a valuable tool for a self-reported assessment of this multifactorial pathology, especially in the absence of typical clinical aspects.

In our study group the mean age was 35 years, with 116 (52.5%) out of 221 women being younger than 35. Our findings, which also reflect social media users’ demographic characteristics, are in agreement with the current literature reporting the highest incidence of vulvodynia in young women, especially under 35 years [6,12].

A relevant finding from our study is the average time taken to obtain a diagnosis, estimated to be about four and a half years, which is in line with the current literature data [1,13,14]. This diagnostic delay is largely attributable to the limited awareness and knowledge of healthcare providers about vulvodynia, often requiring patients to consult multiple specialists before receiving a diagnosis, with many cases remaining even undiagnosed or inadequately treated. Moreover, disparities in the geographical distribution of specialists across Italy compel many women to travel significant distances for appropriate medical care. Additionally, some women experience fear or embarrassment in seeking medical attention from healthcare providers such as gynecologists, further delaying diagnosis. Increasing education about this common condition would be essential to enhance awareness among both healthcare professionals and patients, thus permitting them to reach a prompt diagnosis and adequate therapeutic management.

According to the literature, the most prevalent form of vulvodynia is vestibulodynia, which accounts for approximately 80% of cases with symptoms including vestibular hypersensitivity, particularly around the openings of Bartholin’s and Skene’s glands, and dyspareunia [7]. Our study confirmed vestibulodynia as the most frequent form of vulvodynia with a prevalence of 45%.

In our study, we assessed pain intensity ratings among affected women during their daily activities using a unidimensional 10-point Numeric Pain Rating Scale (NPRS). The pain evaluation scale is: mild pain (from 1 to 3), moderate pain (from 4 to 6) and severe pain (from 7 to 10) [15]. The mean NPRS score across five routine activities (Table 3) was 6.73, consistent with mean pain values reported in prior scientific reviews. Our results confirm dyspareunia, which is present in 86% of women, as a hallmark symptom of vulvodynia significantly impacting quality of life and relationship stability [1,6,7,16].

In agreement with the current literature [1,2], our study confirmed that vulvar pain intensity tends to increase during the premenstrual phase, likely due to a drop in estrogen levels, with some women dismissing or reducing the use of tampons. On the other hand, it is well established that more severe premenstrual symptoms correlate with an increased risk of developing vulvodynia [17].

Another key aspect examined in our study was the presence of comorbid conditions. Among the participants, 84% reported at least one additional chronic condition alongside vulvodynia. According to the literature, common coexisting disorders include fibromyalgia, irritable bowel syndrome, interstitial cystitis, temporomandibular joint disorders, and chronic fatigue syndrome [18,19,20]. A solid study by Reed et al. indicated that women with vulvodynia are two to three times more likely to have one of these conditions [21]. In our sample, the most frequently reported comorbidity was irritable bowel syndrome (35%), followed by anxiety and depression (30%), recurrent candidiasis (24%), fibromyalgia (16%), endometriosis (15%), and interstitial cystitis (16%). Our findings agree with a study conducted in Spain in 2016–2017 [22], reporting comparable incidence rates for these comorbidities. Identifying coexisting conditions is crucial in developing an appropriate and individualized treatment strategy. Considering vulvodynia’s multifactorial nature and its association with multiple chronic pain disorders, a multidisciplinary approach—including specialists such as gynecologists, rheumatologists, gastroenterologists, urologists, health professionals with expertise in the psychosocial aspects of pain and intimacy, and physiotherapists—is often necessary.

Understanding the social and interpersonal impact of vulvodynia was a primary objective of our study; thus, we included questions addressing professional, academic, social, and relational aspects. Our results indicated that 37% of affected women declared significant negative effects on professional or academic performance, with chronic pain contributing to concentration difficulties, absenteeism, and reduced productivity. Additionally, 70% of women with vulvodynia/vestibulodynia reported difficulties and instability in their personal relationships. Pain during sexual intercourse, psychological distress, and a lack of comprehension from partners were among the contributing factors. Given the delicate nature of sexuality and intimacy, these aspects must be carefully considered in vulvodynia therapeutic management.

The final section of our questionnaire explored participants’ awareness of available treatments for vulvodynia/vestibulodynia, analyzing the proportion of women utilizing pharmacological, physiotherapeutic, and electrical stimulation therapies, as well as their perceived effectiveness. Our data indicates that the most used treatments are oral and topical pharmacological ones combined with pelvic floor rehabilitation, whereas electrical stimulation is less commonly used, mainly because it is too expensive.

On average, our participants reported a monthly medical expense for vulvodynia therapy of 266 euros. Considering that many affected women have additional chronic conditions, it is reasonable to assume that their overall healthcare costs are even higher. This may lead to treatment discontinuation with negative effects on their health outcomes.

Since these costs are borne entirely by patients, raising collective awareness about the economic burden related to vulvodynia is essential. Given the high prevalence of this disease, it would be advisable that in the future, cost-effectiveness and cost-efficiency studies be conducted to implement policies ensuring economic support for these patients by public health systems, thus maximizing adherence to therapy and consequently its efficacy.

Limitations: Overall, this study was descriptive and exploratory and was not designed to assess risk factors or establish associations. Our survey does not represent a diagnostic instrument; rather, it is a tool for better comprehension of symptoms and sensations of women who often have not been given a name for this clinical condition. Although providing valuable insights, our questionnaire has not undergone a formal psychometric validation, which represents a limitation of this study. As other limitations, we have to acknowledge the risk of self-selection bias, social media recruitment bias, and the inability to fully exclude non-eligible respondents.

6. Conclusions

Vulvodynia is a complex and multifactorial medical condition significantly impacting women’s quality of life. Our study confirmed the considerable prevalence of vulvodynia, particularly among young women and those in postmenopause, and highlighted its diagnostic complexity, with an average time to diagnosis exceeding four years. Therefore, improving healthcare professionals’ knowledge of this pathology may be crucial to accelerate its identification and to offer affected women prompt and effective therapeutic management.

As limitations of our study, we could note the small sample size, the inclusion of open-ended questions, which may introduce variability in data interpretation and analysis, and the questionnaire spreading through social media and websites, which may represent a bias in women’s participation.

Nevertheless, our study is an attempt at a self-reported evaluation of women’s symptoms given the great variability in vulvodynia clinical presentations, thus helping improve the diagnostic process. In the future, we will be able to validate the items proposed to the participants to make the questionnaire usable for diagnostic purposes. Clinicians carefully have to consider the impact of vulvodynia on quality of life, its pain intensity and implications, and delays in diagnosis and scarcity and limitations of multidisciplinary treatments.