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International Journal of Sexual Health logoLink to International Journal of Sexual Health
. 2024 Aug 28;36(4):627–635. doi: 10.1080/19317611.2024.2397124

Pelvic Floor Physical Therapy is Self-Reported as a Minimally Effective, and Sometimes Harmful, Treatment for Pudendal Neuralgia: A Cross-Sectional Study

Jenny M Niedenfuehr a,✉,*, David M Stevens b, Lindsey M King c
PMCID: PMC11562905  PMID: 39552618

Abstract

Objectives

Pudendal neuralgia (PN) is a sexual pain disorder characterized as pain of the genital and/or perineal regions, and despite the lack of clinical evidence supporting its use, pelvic floor physical therapy (PFPT) is a recommended treatment for PN.

Methods

An online anonymous cross-sectional survey was administered to participants through convenience sampling conducted on May 19 to September 19, 2023 to understand the self-reported efficacy of PFPT as a treatment for PN. Participants’ measures included sociodemographics, Patient Global Impression of Change (PGIC), and satisfaction scores.

Results

The average self-reported PGIC score among participants was 4.6 ± 1.3 (n = 144), indicating no to minimal improvement in symptoms. Most participants (66%) scored 4 or 5, suggesting no change to minimal improvement. Twelve percent of participants scored 3 or lower, indicating worsening of symptoms, and only 22% scored 6 or 7, indicating much or very much improvement of symptoms. Participants who only participated in PFPT (n = 24) had a lower PGIC score of 4.4 ± 1.3. For self-reported satisfaction with PFPT as a treatment for PN, participants self-reported a score of 4.9 ± 3.0, indicating slight dissatisfaction. For those who experienced symptom improvement, the median number of sessions before noticing improvement was five sessions.

Conclusion

Based on self-reported results, PFPT is a minimally effective, and sometimes harmful, treatment for PN. Patients should receive greater transparency regarding the lack of efficacy of PFPT and its potential harm.

Keywords: Sexual Pain, Pudendal Neuralgia, Pelvic Floor Physical Therapy, Patient Global Impression of Change (PGIC);

Introduction

Pudendal neuralgia (PN) is a chronic sexual pain disorder that negatively impacts all genders and is characterized as chronic pain of the pelvic, genital, and/or perineal regions (Leslie et al., 2023). PN generally originates from dysfunction of the pudendal nerve, which innervates the perineum, vulva, clitoris, penis, and scrotum, due to injury, inflammation, irritation, or entrapment (Al-Jumah & Shah, 2021; Kaur et al., 2023; Leslie et al., 2023). However, there is evidence that PN and other dysesthesias may arise from pathologies in the cauda equina, spinal cord, and brain, such as Tarlov cysts and herniated disks (Goldstein et al., 2021). Additionally, diseases such as endometriosis, Ehlers-Danlos syndrome, and hip abnormalities have been associated with PN and contribute to debilitating symptoms (Colak et al., 2024; Glayzer et al., 2021; Niedenfuehr & Stevens, 2023).

The prevalence of PN is currently unknown, but the incidence rate has been reported as high as 1% and affecting more women than men (Spinosa et al., 2006). A diagnosis of PN is based on the Nantes criteria which include pain in the anatomical area of the pudendal nerve, worsened pain with sitting, pain that does not cause the patient to wake at night, no sensory loss during clinical evaluation, and positive anesthetic pudendal nerve block (Labat et al., 2008). However, misdiagnoses are common, and sexual pain and dysfunction have many overlapping symptoms (Ghizzani et al., 2019; Ploteau et al., 2016).

Treatments for PN vary depending on its cause and include cognitive behavioral therapy, oral pain medications, nerve blocks, topical creams/ointments, transcutaneous electrical nerve stimulation (TENS), radiofrequency ablation, sacral neuromodulation, lipofilling, cryotherapy, surgical interventions, and pelvic floor physical therapy (PFPT) (Ghanavatian et al., 2023; Leslie et al., 2023; Pérez-López & Hita-Contreras, 2014). Frequently, patients with sexual dysfunction or sexual pain are prescribed PFPT with the intention of improving symptoms, restoring functionality, and promoting muscle relaxation using various techniques, including manual therapy, myofascial release, trigger point release, stretching, breathing, and whole body relaxation (Brown et al., 2020; FitzGerald & Kotarinos, 2003; Goldfinger et al., 2009; Wallace et al., 2019). However, we found no clinical studies demonstrating the effectiveness of PFPT for treating PN symptoms. Indeed, an expert consensus recognized this lack of evidence but still recommended PFPT for those with “myofascial syndromes of the levator ani and/or the lateral rotator group at clinical examination” (Levesque et al., 2022). Further, another recent review recommended that patients utilize PFPT “despite the lack of definitive prospective studies” and that if it doesn’t work, then “no harm is done” (Leslie et al., 2023).

To date, no studies have evaluated the safety and efficacy of PFPT for treating PN. This study aimed to answer the following research question: Among adults (≥ 18 years of age) with suspected or diagnosed PN, what is the self-reported efficacy and satisfaction of those who have engaged in pelvic floor physical therapy as a treatment for PN?

Methodology

We conducted an online cross-sectional study to examine the self-reported efficacy and satisfaction of PFPT as a treatment for PN. A cross-sectional design was chosen since it is inexpensive, quick, easily available, well-suited for rare diseases, and can examine multiple variables simultaneously (Wang & Cheng, 2020). The data was collected from the survey program Qualtrics from May 19 to September 19, 2023, which used an automatic method for capturing responses and allowed participants to access the survey by phone, tablet, or computer. In the next few sections, this study will follow the Strengthening the Reporting of Observational Studies (STROBE) guidelines to ensure comprehensive and transparent reporting (Cuschieri, 2019). The STROBE guidelines provide a framework that ensures that reporting is transparent and allows for reproducibility among researchers. We will follow these guidelines by presenting a clear background and rationale, detailed descriptions of the study design and methodology, comprehensive results, thorough analyses, and an in-depth discussion. All extra materials such as the survey questions and the STROBE guidelines are attached as supplementary files.

Sampling frame

We utilized convenience sampling, which is often characterized as being efficient and accessible (Campbell et al., 2020; Elfil & Negida, 2017). While we recognize that this method may not allow for generalizability, convenience sampling was the best option to reach hidden or “difficult-to-access populations” as we did not have access to large samples of patients within clinics (Campbell et al., 2020; Elfil & Negida, 2017). Our sampling frame included people with a vulva or penis ensuring equal representation of all genders that have been reported to experience PN symptoms (Leslie et al., 2023). Since the true prevalence of PN is unknown, sample size could not be calculated (Hibner et al., 2010).that have been reported to experience PN symptoms

Recruitment

We recruited eligible participants from Facebook, Reddit, and Twitter communities. Social media platforms are effective recruitment strategies because they can reach a wider sample of patients, are cost-effective, and reach adults with different educational levels, age groups, and even difficult-to-reach populations (Ellington et al., 2022; Frandsen et al., 2016; Goodwin et al., 2023; Topolovec-Vranic & Natarajan, 2016). All three platforms have demonstrated effectiveness in targeting specific populations uniquely because each platform has a different audience base, with anonymous discussion-based conversations on Reddit, direct interactions in real-time on Twitter, and interactive content and support groups on Facebook. To reduce selection bias and increase generalizability, we posted in multiple social media forums that were not directly related to PN, including communities focused on endometriosis, pelvic floor dysfunction, pelvic congestion syndrome, Ehlers-Danlos syndrome, and hip pain communities.

The survey title was “Sexual Health Survey” and was intentionally vague to reduce selection bias (Hibner et al., 2010). The study was advertised on these online forums with a link to the study description page, which described the purpose of the study, informed consent, and the option to access the survey if the participant chose to continue. The advertisement listed the inclusion criteria for the study, a QR code, the survey link, and contact information. We aimed to include participants 18 years or older, fluent in English, with a diagnosis or suspected diagnosis of PN, and current or prior experience with PFPT as a treatment for PN. Additionally, the International Society for the Study of Women’s Sexual Health (ISSWSH) advertised the study on their website.

Ethics

Ethical guidelines were established and adhered to throughout the study. The study was submitted to a University Institutional Review Board (IRB) and granted exempt status with protocol ID number ET00018901. The data collected did not contain any personally identifiable information. Before starting the study, participants read through the guidelines on Qualtrics, gave informed consent by clicking the “next” button, and were informed that they could exit the study at any point. To ensure consistency, participants could not access the survey after exiting the study. Qualtrics prevented individuals from re-accessing the study more than once after completion to secure the survey. Qualtrics used Transport Layer Security (TLS) encryption for all data, and all data was password protected.

Inclusion and exclusion criteria

The first four survey questions were designed to identify whether participants met the inclusion criteria. Individuals were initially screened for eligibility using these criteria: (1) A diagnosis of PN (confirmed or suspected) from a healthcare provider, (2) 18 years or older, (3) fluent in English, (4) participated in PFPT for treating PN (currently or previously). Those who met the inclusion criteria could complete the rest of the survey. Individuals who did not meet the inclusion criteria were not allowed access to the rest of the survey. Only those who completed the entire survey were included in the final sample.

Figure 1 portrays the flow analysis of the full participation in the survey. In total, 144 participants completed the survey.

Figure 1.

Figure 1.

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Flow Analysis of Participants, Inclusion, and Exclusion.

Measures

As portrayed in Table 1, the sample characteristics that were collected included age, gender, ethnicity/race, their duration of having PN symptoms prior to PFPT, and duration of PFPT.

Table 1.

Characteristics of sample (n = 144).

Characteristic Response %
Age
Mean ± SD, years 44.5 ± 15.3  
Range, years 19–76  
Gender
Female 118 81.9%
Male 24 16.7%
Non-binary / third gender 2 1.4%
Race
White 129 89.6%
Black or African American 1 0.7%
Asian 6 4.2%
Othera 8 5.6%
Duration of PN symptoms prior to PFPT
0–3 months 15 10.4%
3–6 months 24 16.7%
6–12 months 22 15.3%
1–3 years 39 27.1%
Greater than 3 years 44 30.6%
Duration of PFPT for treating PN
Mean ± SD, weeks 34.6 ± 47.8  
Median, weeks 16  
Range, weeks 1–312  
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SD standard deviation.

aParticipants did not specify their race.

PGIC scores

The Patient Global Impression of Change (PGIC) reflects the patient’s perception of the effectiveness of a treatment and overall improvement. The scale is used significantly in chronic pain trials to evaluate patient perceptions with vulvar pain and sexual dysfunction (Pukall 2017). The scale contains seven points, where 7=“very much improved,” 6=“much improved”, 5=“minimally improved,” 4=“no change,” 3=“minimally worse,” 2=“much worse” and 1=“very much worse.” Participants were asked to evaluate the efficacy of PFPT specifically regarding its effects on PN symptoms using the scale. Since PFPT often incorporates multiple body parts (arms, legs, hips, back, neck, etc.), participants were also asked to evaluate the efficacy of PFPT regarding activity limitations and symptoms for the entire body. Lastly, participants were asked to disclose any other PN treatments they received during their course of PFPT, including surgery, oral medications, injections, topical creams or ointments, transcutaneous electrical nerve stimulation (TENS), nerve blocks, sacral neuromodulation, pulsed radiofrequency ablation, lipofilling, cryotherapy, or any other treatment for PN.

Satisfaction scores

Self-reported satisfaction with PFPT as a treatment for PN was assessed with an 11-point slider scale (Goldfinger et al., 2009). Participants rated their satisfaction where 0 = completely dissatisfied to 10 = completely satisfied). Previously, this scale has been used in other research studies that sought to evaluate vestibulodynia, PFPT and biofeedback effectiveness, making this an effective scale for this patient population (Bergeron et al., 2002; Bergeron et al., 2008; Goldfinger et al., 2009). The slider is implemented to allow for an expanded expression of satisfaction levels rather than a dichotomous (yes/no).

Results

In total, 411 participants accessed the survey, 384 consented to participate in the study, 248 met inclusion criteria, and 144 completed the survey (Figure 1). Participants had a mean age of 44.5 ± 15.3 years and were predominantly female (81.9%) and white (89.6%) (Table 1). Over 30% of participants reported having PN symptoms for more than 3 years before beginning PFPT. Duration of PFPT for treating PN ranged between 1 and 132 weeks, with an average of 35 weeks and a median of 16 weeks.

Regarding its effects on PN symptoms, PFPT received an average self-reported PGIC score of 4.6 ± 1.3, indicating no change to minimal improvement (Figure 2). Response to treatment was variable: 2.8% scored very much worse, 6.3% scored much worse, 2.8% scored minimally worse, 26.4% scored no change, 39.6% scored minimally improved, 18.1% scored much improved, and 4.2% scored very much improved. Overall, 66% reported no change to minimal improvement, 12% reported worsening symptoms, and 22% reported much to very much improved symptoms.

Figure 2.

Figure 2.

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PGIC scores of PFPT regarding PN symptoms among all PN participants (dark bars; n = 144) and participants who only participated in PFPT only (no adjuvant therapies) (light bars; n = 24). The scale contains seven points, where 7=“very much improved,” 6=“much improved, 5=“minimally improved,” 4=“no change,” 3=“minimally worse,” 2=“much worse” and 1=“very much worse.”

Most respondents also participated in some other form of PN therapy such as oral medications, TENS unit, nerve blocks, or surgical intervention (Figure 3). Within our sample, 24 participants did not report any other form of therapy along with PFPT. The average PGIC among these participants was lower with a score of 4.4 ± 1.3 (Figure 2).

Figure 3.

Figure 3.

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Percentage of participants who reported using medications (e.g., oral pills, injections, topical creams/ointments), surgery, or other treatments (e.g., transcutaneous electrical nerve stimulation, pudendal nerve blocks, sacral neuromodulation, pulsed radiofrequency ablation, lipofilling, cryotherapy), while undergoing PFPT compared to those participating in PFPT only (n = 144).

Since PFPT incorporates multiple body parts, participants were also asked to evaluate the change in any activity limitations and/or symptoms for their entire bodies following PFPT treatment. The average PGIC score was 4.4 ± 1.2 (Figure 4).

Figure 4.

Figure 4.

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PGIC scores of PFPT regarding activity limitations and/or symptoms other than PN symptoms among all participants (n = 144). The scale contains seven points, where 7=“very much improved,” 6=“much improved, 5=“minimally improved,” 4=“no change,” 3=“minimally worse,” 2=“much worse” and 1=“very much worse.”

For those who received a lasting improvement in PN symptoms following PFPT, five sessions was the median number of sessions before first noticing an improvement in symptoms. Regarding self-reported satisfaction with PFPT as a treatment for PN, participants rated an average satisfaction score of 4.9 ± 3.0 (Figure 5).

Figure 5.

Figure 5.

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Satisfaction scores of PFPT as a treatment for PN among all respondents (n = 144). The scale contains eleven points, where 0=”completely dissatisfied” and 10=”completely satisfied.”

Discussion

This is the first cross-sectional study to evaluate the self-reported effectiveness of PFPT as a treatment for PN. Overall, self-reported efficacy was low, with an average score of 4.6 ± 1.3, indicating no change to minimal improvements in PN symptoms. The overall poor efficacy does not appear to be due to a lack of treatment duration, as most participants reported 16 weeks or more of PFPT, which is more than the recommended 6 to 12 weeks (Leslie et al., 2023). While most respondents participated in other therapies during PFPT, those who did not participate in any other form of therapy for PN reported an even lower average PGIC score of 4.4 ± 1.3. Given that combination therapies often show greater benefit than single therapies, the results for PFPT alone are not compelling (Eid et al., 2021).

Notably, 12% of participants reported worsening of symptoms and 2.8% self-reported “very much” worsening changes in their PN symptoms. This is the first recorded evidence of PFPT as being potentially harmful for PN patients and is in stark contrast to the current literature which states that with PFPT, “no harm is done” (Leslie et al., 2023). Beyond PN, PFPT remains the port of entry for patients who struggle with generalized pelvic pain and vulvar pain, and greater attention should be given to the potential harm of PFPT among these patients (Prendergast, 2017).

Additionally, we asked participants to self-report any changes of improvements or worsening symptoms elsewhere in the body, as PFPT aims to incorporate multiple body parts. The average PGIC score was 4.4 ± 1.2, indicating overall no change to minimal improvement on other parts of the body. The score distribution trend was similar, with plurality of participants (40.3%) scoring no change, and 14.6% scoring some worsening of symptoms, indicating that a subset of patients receive worsening of symptoms in other body parts following PFPT.

PN has overlapping symptoms with many other sexual pain disorders, leading to subsequent misdiagnoses. Further, sexual pain disorders, including PN, are associated with many other conditions such as endometriosis (Ghizzani et al., 2019), Ehlers-Danlos syndrome (Glayzer et al., 2021), and musculoskeletal issues (Ghizzani et al., 2019). Patients with symptoms that arise from pathologies outside the end organ and pelvic region, such as Tarlov cysts, herniated disks, and other spine issues, require careful diagnostic and treatment strategies (Goldstein et al., 2021). Therefore, studies which focus on patient comorbidities may reveal which patients are most and least likely to benefit from PFPT.

Self-reported satisfaction with PFPT as a treatment for PN was equally unremarkable with an average score of 4.9 ± 3.0, indicating slight dissatisfaction. The low satisfaction score is not surprising given the overall low self-reported efficacy scores. Of those who reported lasting PN symptom relief following PFPT, 16.3% reported they first noticed an improvement after only one session, and the median response was five sessions before first noticing symptom improvement. This is an important metric for setting expectations for both patients and providers.

These results suggest that PFPT is minimally effective in treating PN symptoms based on self-report results. Only a small subset of patients may experience much improvement, while another small subset may experience worsening symptoms. Further, those who may benefit from PFPT will most likely notice improvements as early as one to five sessions. Ultimately, these findings provide clarity and transparency to providers and patients regarding the efficacy and potential harm of PFPT in treating PN symptoms. Future clinical studies should evaluate why some patients respond better and worse to PFPT to classify patients as excellent or poor candidates for PFPT.

Limitations

As with all anonymous cross-sectional survey studies, health information (i.e., diagnoses) could not be verified. Since PN is poorly understood and difficult to diagnose in the general healthcare community, we included participants with either a formal or suspected diagnosis from a healthcare provider. Additionally, not all participants completed the survey and those who exited could not re-access the study. Social desirability bias may have also occurred as some participants may have felt a positive or strong rapport with their provider, resulting in higher self-reported outcomes than what may have occurred. As we used convenience sampling, participants were only recruited through online methods which could result in selection bias since the group of participants were likely already interested in the topic. Future longitudinal studies should focus on recruiting larger and more representative samples of patients for adequate external generalizability.

Conclusion

Overall, this study highlights the minimal efficacy of PFPT as a treatment for PN and its potential to cause worsening of symptoms based on self-reported changes. These findings should be informative to providers and patients when considering PFPT as a potential therapy for treating PN. Prospective studies should evaluate why some patients receive greater or worse benefits so that patients can receive the appropriate treatment and avoid unnecessary and potentially harmful therapies.

Supplementary Material

STROBE Checklist final.docx
WIJS_A_2397124_SM7110.docx (35.3KB, docx)

Funding Statement

No funding was received for conducting this study.

Authors’ contributions

JN led the study design, methodology, data curation, and analysis. DS supported the study design and conceptualization. JN and DS wrote the manuscript, and LK, JN, and DS read, edited, and approved the final version. All authors declare no financial or nonfinancial interests or commercial associations that may be relevant to the submitted work.

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Supplementary Materials

STROBE Checklist final.docx
WIJS_A_2397124_SM7110.docx (35.3KB, docx)

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