Women’s experiences of physical therapy treatment for vulvodynia

ABSTRACT

Introduction

Vulvodynia is a common and complex pain syndrome with a negative impact on quality of life and sexual health. Physical therapy is still an underexplored treatment for vulvodynia. Women’s experiences of their physical therapy treatment might shed light on meaningful aspects and essential keys to facilitate change.

Purpose

To explore and describe women’s experiences of physical therapy treatment for vulvodynia.

Methods

A qualitative interview study, using qualitative content analysis. Fourteen women with a median age of 28 years and a median pain duration of 6.5 years participated. Digital interviews were conducted using a semi-structured interview guide with open-ended questions.

Results

One theme, four categories and thirteen sub-categories were developed in the analysis. The theme, “Trying to become friends with your vulva,” illuminate how the women approached and reconnected to their bodies in physical therapy. The treatment increased their awareness and provided explanations for their symptoms. Four categories described aspects of the theme: 1) untapped resources in a complex healthcare; 2) a matter of trust; 3) a guide to understanding your body; and 4) a new way forward but not the whole solution.

Conclusion

Women with vulvodynia perceive physical therapy as a promising and yet unknown approach. Physical therapy treatment gives the opportunity to reconnect with the body and vulva in a new way, and to manage pain and muscle tension as part of a multidisciplinary treatment.

KEYWORDS:

• Dyspareunia
• physical therapy modalities
• women´s health
• qualitative research
• provoked vestibulodynia

Introduction

Vulvodynia is defined as “vulvar pain of at least three months duration, without clear identifiable causes, which may have potential associated factors” (Bornstein et al., 2016) classified within the “chronic primary visceral pain” category (Treede et al., 2019). The syndrome is complex, and it has been suggested that vulvodynia is likely not one disease but a constellation of symptoms and processes (Bornstein et al., 2016). Vulvodynia may involve generalized pain in the vulva or pain localized in specific parts, usually around the vaginal opening. Generalized and localized vulvodynia can be provoked by touch or pressure, unprovoked/spontaneous, or both. The pain can be primary (i.e. present since the first intercourse or tampon use) or secondary which means that the pain develops later in life, for example after an infection. Some women experience pain constantly when being provoked while others have intermittent symptoms. The pain may occur immediately at provocation or with a delay of several hours or days (Bergeron, Reed, Wesselmann, and Bohm-Starke, 2020; Bornstein et al., 2019; Bornstein et al., 2016). The present study focuses on women with the principal subtype of vulvodynia, provoked vestibulodynia (PVD) which is characterized by pain upon pressure at the vulva vestibule or attempted vaginal penetration (Bornstein et al., 2019; Bornstein et al., 2016). PVD will be referred to as vulvodynia throughout the paper, since the latter is a more commonly used term.

The prevalence of vulvodynia is unclear but is thought to be a common and neglected condition. Studies estimate a lifetime prevalence of 9–16% but the incidence is highest among younger women (Bergeron, Reed, Wesselmann, and Bohm-Starke, 2020). Only 50–70% of the afflicted women seek treatment (Harlow et al., 2014; Reed et al., 2012) and approximately half of those women never receive a diagnosis (Harlow et al., 2014). There are increasing requests for healthcare among women with vulvodynia, and, in Sweden, the number of related primary care appointments has almost doubled between 2011 and 2016 (Socialstyrelsen, 2018).

Women with vulvodynia have a significantly impaired quality of life (Næss, Frawley, and Bø, 2019). They experience negative consequences connected to femininity and sexuality, which affect both partner relationships and friendships. It contributes to a feeling of alienation and being silenced and isolated. Many feel shame and guilt related to the social norms surrounding female sexuality and this further leads to distress, low mood, anxiety, and low self-esteem (Shallcross et al., 2018).

There are several factors associated with vulvodynia, including comorbidity with other pain syndromes, physiological factors such as genetics, hormonal, inflammatory, musculoskeletal, and neurological and psychosocial factors such as childhood victimizations, anxiety, and depression (Bergeron, Reed, Wesselmann, and Bohm-Starke, 2020; Bornstein et al., 2016). This complexity calls for individualized treatments acknowledging the characteristics and situation of each patient. For instance, physical therapy could be recommended when musculoskeletal problems are assumed (Bornstein et al., 2016 ; Goldstein et al., 2016; Morin et al., 2021; Rosen, Dawson, Brooks, and Kellogg-Spadt, 2019).

Pelvic floor muscle dysfunction such as increased general tension, or problems contracting and relaxing the muscles, are common in vulvodynia (Gentilcore-Saulnier et al., 2010; Morin et al., 2017; Prendergast, 2017). Higher pain intensity is associated with decreased muscle function (Benoit-Piau et al., 2018). Hypertonic pelvic floor muscles can manifest in a variety of combinations. The most common symptoms are urinary problems, constipation, dyspareunia, pain while sitting, vulvar itching/burning, anorgasmia or pain with orgasm, and exercise intolerance (Prendergast, 2017). The women often end up in a vicious circle where one symptom leads to another, and it is difficult to sort out cause and effect (Bohm-Starke and Johannesson, 2013). Among these women, pain-related anxiety is common and plays a role in exacerbating and prolonging chronic pain (Govind et al., 2020). Also, emotional distress, fatigue and catastrophizing are associated with increased pain (Chisari and Chilcot, 2017).

Multidisciplinary treatment including physical therapy is recommended for the treatment of vulvodynia (Bergeron, Reed, Wesselmann, and Bohm-Starke, 2020; Goldstein et al., 2016; Sadownik, Seal, and Brotto, 2012). Based on its holistic approach, physical therapy can contribute significantly to the assessment and treatment (Berghmans, 2018). While the efficacy of physical therapy is still underexplored, some studies have shown a significant reduction in pain (Brotto, Yong, Smith, and Sadownik, 2015; Sadownik, Seal, and Brotto, 2012) and improved function of the pelvic floor muscles (Gentilcore-Saulnier et al., 2010; Ghaderi et al., 2019). In a large multicenter study, Morin et al. (2021) found that multimodal physical therapy is effective for pain, sexual function and sexual distress and recommend physical therapy as the first-line treatment for vulvodynia.

Physical therapy treatment includes pelvic floor rehabilitation, patient education, and behavioral and lifestyle changes (Brotto, Yong, Smith, and Sadownik, 2015; Morin et al., 2021; Prendergast, 2017). Recent research also recommends somatocognitive therapy which aims to increase body awareness and to explore and interpret bodily sensations (Haugstad et al., 2019). Education should entail learning about muscle pathophysiology, pain management and sexual functioning (Morin et al., 2021). Education in a group setting can have an additional impact. Patients can share their experiences and coping strategies, which might reduce feelings of isolation (LePage and Selk, 2016) and validate their own experiences (Sadownik, Seal, and Brotto, 2012). Pelvic floor physical therapy aims to enhance muscle proprioception, relaxation, and normalization of muscle tone (Ghaderi et al., 2019). It can also decrease allodynia and hyperalgesia in the vulvar vestibule and decrease fear and anxiety (Gentilcore-Saulnier et al., 2010). The treatment includes manual therapy and biofeedback (Morin et al., 2021) with home exercises in the form of pelvic floor exercises, relaxation and breathing techniques, and the use of dilators (Ghaderi et al., 2019; Morin et al., 2021; Swedish Agency for Health Technology Assessment and Assessment of Social Service, 2021).

Patients experience barriers to receiving adequate care and information about vulvodynia, reporting numerous healthcare contacts, being misdiagnosed, and receiving incorrect treatment (Connor, Brix, and Trudeau-Hern, 2013; LePage and Selk, 2016; Webber, Miller, Gustafson, and Bajzak, 2020). Long waiting times before getting an appointment may have a negative impact on the woman’s psychological wellbeing (Shallcross et al., 2019). The patients experience their journey toward receiving a diagnosis as a battle, where the medical professionals’ lack of knowledge becomes a barrier to receiving help from specialist services. Many patients feel unseen and not taken seriously, as if the pain was all in their head, and they report patronizing advice from doctors (Shallcross et al., 2019). Brotto, Yong, Smith, and Sadownik (2015) have demonstrated that treatment outcomes improve for women with milder symptoms and higher sexual functioning before intervention, highlighting the importance of early detection and treatment. Some specific barriers to physical therapy have been pointed out, which include financial factors, long travel distances, lack of adequate explanations and anxiety about the treatment (LePage and Selk, 2016; Zoorob et al., 2017). It is important to develop effective, safe, and well-functioning physical therapy interventions. Women’s lived experiences of the treatment might shed light on meaningful aspects and essential keys for successful outcomes. There is a lack of qualitative studies focusing on the women’s experiences and the purpose of this study was therefore to explore and describe women’s experiences of physical therapy treatment for vulvodynia.

Methods

Design

This qualitative interview study used qualitative content analysis according to Graneheim and Lundman (2004), which is a systematically described method to increase understanding and knowledge of the studied phenomenon. The method is flexible for different types of data and allows for different depth in the interpretation (Graneheim, Lindgren, and Lundman, 2017). The authors used an inductive approach, analyzing the participants’ narrations in an open way looking for patterns in the data. The analysis addressed both the manifest and the latent content, where the manifest content involves the textual statements and expressions on a descriptive level and the latent content involves an interpretation of the underlying meanings (Graneheim, Lindgren, and Lundman, 2017).

Participants

Women, 18 years old or older, with ongoing or completed physical therapy treatment for vulvodynia were included. Exclusion criteria were other known gynecological disease or vulvar injury, severe mental illness or cognitive impairment or inability to carry out a conversation in Swedish, which could make an interview difficult.

Data collection

The study was approved by the Swedish Ethical Review Authority, reference number 2021–07045–01. Participants gave their informed consent to participate and were informed that they could withdraw from the study at any time. Participants were recruited between March and May 2022 by physical therapists working in the field of women’s health. Eligible participants received verbal and written information and were invited to contact the researchers if they wanted to participate. Advertisements were also posted in related groups on Facebook.

Sixteen women responded, of which one was excluded because she had not been treated by a physical therapist and one changed her mind and declined participation before the interview. In total, fourteen women participated in the study. They were interviewed by the first author, digitally, on one occasion via Zoom between March and June 2022. The interviews were recorded as audio files and lasted between 23–35 minutes, median duration 30 minutes. The interviewer had no prior relationship with the participants. A semi-structured interview guide with open-ended questions were used according to Kvale and Brinkmann (2014) and included the following types of questions: “Can you describe your first encounter with the physical therapist?,” “How did you experience the physical therapy treatment you took part in?” and “Was there any particular moment or situation that you remember?”. Follow-up questions were of the type: “Can you tell me more about that?” and “How did you feel then?” to elicit richer in-depth data. The interviews were transcribed verbatim by the first author during the data collection period.

Data analysis

The qualitative content analysis was focused on seeking patterns of meaning and identifying differences and similarities in the material (Graneheim and Lundman, 2004). Initially the interviews were read several times to get a sense of the whole. Next, meaning units were identified, condensed, and coded, keeping the meaning but in a more concise way. In total, 350 meaning units were identified. Five of the interviews were analyzed independently by both authors, before reflecting together on the data. The remaining interviews were coded by the first author. The codes were compared with each other and grouped based on emerging patterns and then divided into tentative subcategories and categories. An example of this process is presented in Table 1. In the final stage of the analysis a theme was developed, capturing essential meaning as a “red thread” through all the interview data (Graneheim, Lindgren, and Lundman, 2017).

Table 1. Example of the analysis and the process from meaning unit to category.

Meaning unit	Condensed unit	Code	Subcategory	Category
And it was, so good, that she did it on a physical therapy table with a towel around me. It wasn’t exposing in that way, really.	Good with a physical therapy table and a towel around. It wasn´t exposing.	safeness	Feeling safe	A matter of trust
But then I think, maybe, it’s finally when I’ve actually met someone in real life, that it has given me more. When you met someone who did an examination and so on.	It has given more to meet someone in real life, who did an examination.	Pelvic floor examination	Sensing change through physical feedback	A guide to understanding your body

The first author has six years of experience as a physical therapist treating women with vulvodynia. The second author is a physical therapist and researcher with a background in mental health and pain rehabilitation. Prior knowledge can help to perceive nuances in the participants’ stories, but preunderstanding may also lead to quick interpretations. Therefore, the researchers must be aware of their own values and preconceptions (Graneheim, Lindgren, and Lundman, 2017). We approached this by discussing our preunderstanding before the analysis. We also tried to question our interpretations during the analysis, to stay open to new aspects and move beyond the taken-for-granted.

Results

The 14 participants lived in different parts of Sweden. Two were recruited through physical therapists and the remaining 12 through advertising in Facebook groups. The median age of the participants was 28 years, ranging between 21–45 years, with a median pain duration of 6.5 years, range 1–31 years. Eleven of the included women were in a relationship. They reported having had between 1–30 physical therapy appointments, median 6 appointments.

In the analysis of the participants’ experiences, we derived one central theme, four categories and thirteen sub-categories. The central theme “Trying to become friends with your vulva” ran through the whole material with a higher level of interpretation compared to the more descriptive categories and subcategories. This theme captures the meaning of how the women were gradually, not without struggle, approaching and reconnecting to their bodies through the physical therapy treatment. They perceived physical therapy as a feasible approach to understand their bodies, providing explanations for their symptoms and difficulties. In contrast to their previous feeling that the vulva was something they wanted to get rid of, they started to accept their vulvas as part of themselves. They started to change their negative view of the vulva and pelvic floor, which had negatively affected their self-esteem and body image. They experienced physical therapy treatment as a tangible way to approach the problem, and through improved body awareness, they regained better contact with their vulvas. Physical therapy exercises were useful tools to influence, change and regain control over the pelvic floor muscles and offered a possible way to work with the pain. The four categories with their subcategories reflected different aspects of the theme, closer to the descriptive content in the participants’ experiences: 1) untapped resources in a complex health care; 2) a matter of trust; 3) a guide to understanding your body; and 4) a new way forward but not the whole solution (Figure 1).

Figure 1. Women’s experiences of physical therapy treatment for vulvodynia.

Untapped Resources in a Complex Healthcare

Unknown approach

The interviews revealed that physical therapy was perceived as a relatively unknown and underutilized resource by both healthcare providers and patients. The women described that they were not aware of physical therapy treatment for vulvodynia or what it entailed, and it was not a conventional part of the recommended treatment.

“It was through the youth clinic and they kind of didn’t have any… long story short, they had no knowledge, but I found out myself that you could get help from a physical therapist”. (interview 2)

“I didn’t know what to expect. I was like this: Should I go to a physical therapist because my vagina hurts? I didn’t get it together at that time. It’s funny to recall. Today, I think it’s obvious.” (interview 4)

Unavailability

The women described difficulties to get in touch with a physical therapist with specific knowledge about vulvodynia. They described a healthcare system with long waiting times to get an appointment and that they needed to “fight” to receive specialized care. This caused frustration, a sense of hopelessness and loneliness, forcing them to seek knowledge and treatments on their own, for example through social media.

“I almost kind of sneaked in into the healthcare services and phoned people [healthcare staff] I wasn´t supposed to call, just to get a referral.” (interview 6)

“You have to search on your own. ‘Here are three names of other physical therapists who treat vestibulitis’. But as a patient, you become like this: Fine, you didn’t care either. You can’t stand it. If you have been bounced around in the healthcare system like I’ve been for the past 15 years, you get pretty tired”. (interview 9)

A matter of trust

Being seen and heard

The women described that it was emotionally challenging to seek treatment for vulvodynia and some waited years before acting on their need for help. They felt hesitant to trust new therapists since they had prior experience of not being understood by healthcare providers who minimized their problems. The women pointed out the importance of being seen, taken seriously, and to be listened to.

“I met a person who I could trust and who seemed interested in helping me. Yes, I think that made me feel kind of safe and I thought it was worth investing in”. (interview 7)

“I still have very good experiences of being taken seriously. And that’s been really important to me. They kind of understand that this is a problem for you, and almost make you realize even more that this is a problem that you can live with in some way.” (interview 8)

Feeling safe

It was important that the examination and treatment related to the vulva was carried out in a calm and safe manner. The women appreciated that the physical therapist explained what was going to happen, how and why, and that the entire examination was performed in interaction between therapist and patient.

“She was very clear by first putting her hand on my thigh and saying, ‘Now I’m going to touch.’ It was not only that she did it, but she also thought a little extra about me being extra nervous. That you are in a vulnerable situation”. (interview 4)

“I think it´s super important that the therapist is very calm and systematic during the examination. And the people I have met have done that like: ´ I´m going to do this`, Now I got my hand here`. Very calm. That´s something really important. Otherwise, I probably wouldn´t have come back.” (interview 12)

The participants described feeling safe and less exposed by being offered a towel to have around them. Also, they felt less exposed since the examination was performed on a physical therapy table instead of in a gynecology chair.

“I was lying on an ordinary physical therapy table with a towel on me. So, you did not feel as exposed as you do in a gynecology chair. So, it wasn´t as embarrassing I think.” (interview 3)

Specific expertise

It was common among the women to having received ineffective treatments or unhelpful advice. They described that it was important that the physical therapist had specific competence and experience in treating other women with vulvodynia and that they could refer to scientific studies, show models and drawings, and report positive clinical experiences.

“So, I think it’s important that women get in touch with physical therapist or sexologists who can describe it scientifically. That it’s not just ‘sometimes it can hurt,’ a bit of housewife knowledge, but there´s actually research and science to back it up.” (interview 11)

The women also saw the physical therapist as a knowledgeable professional with whom they could raise and discuss their concerns about advice they received, for example, through social media.

“And then you can reason with someone who says, ‘that could be it.’ There’s this muscle doing this and those kinds of things. And find a way to sort out what you’re having problems with, when you hadn´t understood it yourself.” (interview 8)

A companion along the way

The women described the importance of support from the physical therapist throughout the treatment process, including feedback and encouragement. It was important to have planned follow-up sessions with the same therapist to gradually develop trust and feeling acknowledged by healthcare. The physical therapist’s feedback about improvement also helped to maintain motivation for self-treatment.

“Having scheduled visits helps, I think. Not that you have to prove something to anyone else, but somehow it feels easier when you’re working towards it, a meeting with a professional”. (interview 1)

“You don´t feel it, things are happening but in so small steps that you have to get it clarified. ‘Things have improved a bit’ or ‘Try something like this instead.’ So, just to have someone there with you. You are very much alone with your thoughts.” (interview 12)

A guide to understanding your body

The unfamiliar vulva and pelvic floor

The women described their knowledge about the vulva and pelvic floor muscles as quite limited and sometimes inaccurate. They did not know its’ anatomy, healthy function, or what could be expected as “normal”. Another experience was that they had little connection to or could not control the pelvic floor muscles.

“The fact that I have pain, a lot of pain, when I have penetrative sex, that was nothing … it took a year before I sought treatment. And I think that says a lot about the attitude you have about your genitals and their expected function”. (interview 11)

“So, I´ve had a very strange view of my vagina. I know it has been totally bizarre. But I haven´t been able to change it even though I´m educated./ … /I have perceived my vagina as a cement tube. Impossible to move. There is no entrance or elasticity”. (interview 13)

Learning about how it works

Being educated about the anatomy and the pelvic floor muscles could shed light on some of the factors that triggered or aggravated the symptoms. Their understanding increased when being shown illustrative figures or a pelvic floor model.

“She had some pictures of the muscles and explained how everything is connected. How the nerves and signals go between the pelvic floor and the brain, and how it turned out the way it did. I felt that I got a reasonable explanation”. (interview 5)

“I thought it was very educational with her because she showed me this whole model and like, ‘This is where the muscles are, and you can massage there and like this’. I thought it was really cool”. (interview 12)

Sensing change through physical feedback

To increase the participants’ understanding, it was essential that the physical therapist guided them through palpation of the pelvic floor muscles. They appreciated how the physical therapist manually could assess their muscle tension and give direct feedback.

“Above all, I thought this first examination, this palpation, was important. To really clarify that I am tense, that the muscles are tense. That you could find those muscles, and that you manually could do something about it”. (interview 10)

The physical therapist was referred to as a guide, helping to sense the difference between tense and relaxed muscles and how to control the muscles. This was an important part of understanding the pelvic floor muscle function and to facilitate self-care exercises. The women felt they could not get this experience on their own. The feedback from the physical therapist was important to validate their problem and to check that the exercises were being performed correctly.

“I now feel the muscles giving way, or letting go, or whatever it was. It doesn´t matter, just hearing that it got a little bit better, just from breathing. I can do that every day; I can do that all the time. So, it was important to hear that, right away”. (interview 2)

“So, it’s a physical stimulation, or what to say, but also that she connected it to my feeling of `It actually worked,’ very clearly, and then explained it.” (interview 13)

A new way forward but not the whole solution

Shifting perspectives

Physical therapy was described by the women as a new approach to vulvodynia. They commonly described having tried various types of medication without improvement. Physical therapy was seen as an opportunity to find new ways of addressing the body and the pain, exploring with curiosity. They experienced a shift in perspective, from gynecology to focusing on muscles and pain management. Some of the women thought this felt less shameful and easier to accept.

“I think physical therapy is a different approach. With physical therapy it is treated as a muscle and pain problem, rather than a gynecological problem./ … /for me it’s been easier to treat it as muscular pain rather than focus on the vulva”. (interview 8)

“It was nice to get that confirmation. After all these years. That there´s nothing wrong with it. Even though all the gynecologists have said it looks good, I’ve understood that there is something wrong. It´s the muscles inside. And when I focus on the muscles, it´s a completely different thing, emotionally.” (interview 13)

Hope for the future

Experiencing positive bodily change and pain relief through physical therapy treatment was perceived by the women as hopeful, that there actually was a possibility to improve. It gave a sense of calmness and confidence, and made the women think more positively about their future.

“When I first came to her I couldn´t have penetrating sex at all. But during the summer, it started to feel okey or something like that. Not always but sometimes. It was a significant improvement”. (interview 5)

“When I started the stretching exercises, I took Amitriptyline. It´s a sort of nerve pain medication. And only a week later, I stopped taking it, gradually. Then I felt I didn´t need it anymore.” (interview 10)

Helpful strategies but no quick fix

Receiving practical tools for self-management, for example breathing and relaxing techniques, and pelvic floor muscles stretching with a wand, was perceived important by the women. It gave them strategies to use in everyday life to manage pain and muscle tension. It gave a sense of control and empowerment as well as acceptance.

“I got tools, and she helped me feel that it doesn´t have to be like this. You can take control of it. You just don´t have to wait for something to stop hurting, you can work on it yourself”. (interview 2)

“To understand more about it gives some kind of empowerment. The feeling that you can actually influence something on your own. And just knowing more about it is often a relief … What you don’t know feels a bit dangerous”. (interview 7)

“I would say that a huge part of it, maybe the biggest part, is just having something to do. Knowing, when it hurts, I have a way to act.” (interview 8)

Experiences of ambivalence regarding self-care were also expressed by the women, who found it helpful but still difficult to perform regularly over a long period of time. They described wishing a quick fix but gradually accepting that it was something they had to work with for a long time.

“It usually gets better if I do different exercises and things like that, but unfortunately, it’s very difficult to keep it up over time. You lose the spark”. (interview 5)

“It´s not just a passive treatment that you receive. You actually have to invest a lot of time yourself. But the physical therapist can act as a guide and help you, and of course do some manual treatment. But a lot, a lot, depends on you, so to speak.” (interview 7)

Need for teamwork

Although physical therapy treatment was perceived as helpful, the women experienced a need for support from several healthcare professionals, who contributed with their different expertise and perspective. A team contributed to a sense of safety and calmness.

“I had these three people as a team working in different approaches, and a dermatologist who did a lot of examinations as well. And you feel very cared for, which also contributes to a sense of calmness perhaps. That helps along the way”. (interview 6)

“For me, I think, who had struggled with this my whole adult life, it [physical therapy] is not enough. Because it´s gone far too long. So much has happened, and I will need support from many perspectives. And I think it´s important, especially when treating people who have had pain for so long, that it´s not enough with physical therapy. You need more.” (interview 9)

Discussion

This study provides a deeper understanding of how women with vulvodynia experience physical therapy, in the context of Swedish healthcare. We found that physical therapy treatment was perceived by the women as a new approach that changes the focus from gynecology to a muscle and pain condition. The treatment was perceived helpful if you get the right support from a physical therapist who installs confidence and has expert knowledge about vulvodynia. Our results highlight the perceived importance of the pelvic floor examination, including feedback and guidance from the physical therapist, here interpreted as a collaborative process increasing the patient’s knowledge and self-awareness.

However, the participants described that physical therapy treatment is a hard-to-access resource, with long waiting times or offered far from where they lived. They were often referred to several different healthcare providers before finding someone who could help them. This finding is in line with the Swedish National Board of Health and Welfare report (Socialstyrelsen, 2018) which describes the shortcomings of the entire care chain. Similarly, this problem is highlighted in several international studies (Connor, Brix, and Trudeau-Hern, 2013; LePage and Selk, 2016; Shallcross et al., 2019; Törnävä, Koivula, Helminen, and Suominen, 2018; Webber, Miller, Gustafson, and Bajzak, 2020).

This study demonstrates the need for more accessible physical therapy treatment. A Swedish healthcare guideline was published in 2022 (Socialstyrelsen, 2022) proposing an overall structure to improve the care chain and provide equitable healthcare. Physical therapy is recommended in basic and specialized care for vulvodynia, as a cost-effective treatment without side effects (Socialstyrelsen, 2022). To meet this recommendation, increased competence is needed among physical therapists. Also, the physical therapist´s role needs to be clarified in relation to other healthcare professionals to be perceived as a natural part of the team. The participants in our study pointed out the importance of the multidisciplinary team to give a sense of security, also advocated in previous studies (Bergeron, Reed, Wesselmann, and Bohm-Starke, 2020; Goldstein et al., 2016; Sadownik, Seal, and Brotto, 2012).

In the interviews, we found that a key factor for successful treatment and interaction with the physical therapist is the experience of feeling understood. Physiotherapists need to embrace a holistic approach to understand the patient’s experience, their story, situation, beliefs, and culture. Applying a phenomenological approach to physical therapy, the interaction between physical therapist and patient is an ongoing process and co-construction of meaning (Øberg, Normann, and Gallagher, 2015). It takes both great empathic ability and interpersonal competence to create mutual trust in an intimate and vulnerable situation. In recent years, the concept of therapeutic alliance has grown stronger, and studies suggest that a good alliance improves physical therapy treatment outcomes (Ferreira et al., 2013; Kinney et al., 2020). Communication is the basis for the alliance, where the therapist sees the person behind the patient, legitimizes their experiences, and shares their journey through the treatment (Søndenå, Dalusio-King, and Hebron, 2020). The therapist’s empathy and a safe environment is important so that the patient dares to bring up intimate questions and problems (Danielsen, Dahl-Michelsen, Håkonsen, and Haugstad, 2019). Acknowledging the patient´s experience and situation by taking time to listen also contributes to the patient’s development and new understanding of themselves.

To enhance communication about sexual health, models like PLISSIT (i.e. Permission, Limited Information, Specific Suggestions, and Intensive Therapy) may be useful for physiotherapists (Areskoug-Josefsson and Gard, 2015). The first two steps, permission, and limited information can be provided by all physiotherapists and do not require specialized knowledge. These steps are about providing a safe environment, showing an open attitude to sexual issues, and including sexual health in the information about a disease or symptoms. The third step, specific suggestions, involves counseling and intervention based on a patient’s individual needs. The last step of PLISSIT, intensive therapy, requires further education and should be provided by physiotherapists with specialized knowledge and experience (Areskoug-Josefsson and Gard, 2015).

This study shows that the examination situation itself must be safe. It is important to bear in mind in that many women with vulvodynia have high anxiety before physical examination of the pelvic floor. In our study, we found that it was a positive experience for the study participants that the physical therapist embraced an approach based on interaction. As the examination was performed on a regular physical therapy table instead of in a gynecologist’s chair, which made the participant feel less exposed and more included in the examination. In a similar way, Goldstein et al. (2016) advocate an interacting educational pelvic examination in which, while being examined, the patient is educated about her anatomy.

Traditionally in physical therapy, a third-person perspective on the body is adopted with the intention of understanding, for example, anatomy or the physiological functions of the body (Øberg, Normann, and Gallagher, 2015). Understanding the body solely as a biological organism can lead to the perception that the body is just an object of manipulation, the “thing” that needs to be “fixed”. Rather, it is required to understand the body as a lived body, or body-as-subject. The embodied interaction is not just a matter of movement or manipulation of a patient’s limb. It implies an understanding of each other that is partly based on facial expressions, postures, movements, gestures and give and take of sensory-motor processes (Øberg, Normann, and Gallagher, 2015). This is well in line with the participants’ experiences where an embodied approach seemed to facilitate a construction of meaning. The physical therapist was perceived as a guide to support the patient to experience the difference between tense and relaxed muscles when learning to control the pelvic floor. The experience of positive bodily changes seems to be essential to develop an understanding and motivation for continued treatment and to regain contact with one’s genital area. In line with our findings, a recent study showed that women with provoked vulvodynia who had received physical therapy (somatocognitive therapy), reconnected to their bodies with more self-compassion (Danielsen et al., 2023). They started to integrate their vulvas as part of themselves, increased their awareness of sensations and emotional states, and developed a more positive approach to their bodies (Danielsen et al., 2023).

The physical therapy treatment of vulvodynia is largely based on self-care where the patient needs to take responsibility (Socialstyrelsen, 2022). This study shows that it can be difficult to keep up the self-care routines regularly and for a longer period. As self-care is of great importance for a good treatment outcome, further studies are needed to identify obstacles and facilitators in patients’ strategies and continuation of self-care.

Strengths and limitations

To achieve trustworthiness, including the concepts credibility, dependability, and transferability (Lincoln and Guba, 1985) we took several measures. To obtain a rich and varied material, which is essential for credibility in qualitative research, we recruited participants with demographic differences (Graneheim and Lundman, 2004). The participants had different ages, durations of pain and they lived in different parts of the country, which enabled nuanced experiences and rich data. To strengthen credibility of the analysis, the two researchers reflected individually on content and meaning in the data, and then discussed together. The interviewer (first author) has a pre-understanding as she has treated women with vulvodynia for several years, which can be an advantage in the interview situation but also influence the analysis. Pre-understanding was addressed by critically reflecting and discussing with the second author throughout the process, to avoid quick, taken-for-granted interpretations.

To ensure dependability in the data collection, all interviews were performed in a similar manner with the same interviewer, using the same open-ended questions. Another way to enhance dependability was the stepwise process of detailed coding and categorization of all data (Graneheim and Lundman, 2004), exemplified in Table 1.

The interviews were conducted digitally to make it easier to reach women from a larger geographical area, and because the study was conducted during the COVID-19 pandemic when physical contacts needed to be limited. There is a risk that the digital format could have hampered interaction and trust in the interview situation. However, research has shown that video meetings are perceived positively by participants, resembling physical meetings with the possibility to read each other’s emotional state through facial expressions and gestures (Mirick and Wladkowski, 2019).

This study had 14 participants. The number of interviews in a qualitative study depends on the quality and richness of the material and it is therefore not possible to plan for a fixed number of interviews (Graneheim, Lindgren, and Lundman, 2017). In the later interviews, similar stories and recurring experiences emerged which indicates enough data richness to cover significant variations. Regarding transferability of results, the results are to be interpreted within the context of Swedish healthcare. Since there were no participants with a foreign background or aged >45 years, the results are mainly applicable to adult Swedish women of younger age.

Clinical implications

Since feeling safe central for the patient, physical therapists need to take this into account when preparing for treating women with vulvar problems. There is a need for a safe environment both mentally and in the physical room, with time to develop a trustful relationship and a clear treatment plan with follow-up appointments to the same therapist. Since many patients experience insufficient knowledge of the genital area, it is important to take time to thoroughly educate about pain mechanisms, anatomy, and function of the pelvic floor, preferably using models to increase the patient’s understanding. The physical therapist should also offer an examination of the pelvic floor function, while emphasizing dialogue and interaction, to guide the patient’s understanding and reconnection to their vulva. Vulvodynia often needs to be handled as a trauma for both body and mind, which warrants multidisciplinary teamwork.

Conclusion

Physical therapy is perceived by women with vulvodynia as a promising and yet unknown approach, offering new opportunities to manage pain and work with muscle tensions. Focusing on creating a therapeutic alliance, including embodied interaction, seems to facilitate trust and collaboration in the physical therapy treatment. Essential in this process is the pelvic floor examination, where direct feedback and guidance from the physiotherapist may increase the patient’s knowledge and awareness. There is a need for increased access to physical therapy, as part of the multidisciplinary treatment for women with vulvodynia. Physical therapists should work toward increased competence within the profession to support this growing patient group.

Acknowledgments

This work was supported by Futurum Academy for Healthcare, Region Jönköping county and Minnesfonden, Swedish Association of Physiotherapists.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by the Futurum- the academy for healthcare, Region Jönköping county [982578]; Minnesfonden, Swedish Association of Physiotherapists [-].