“It's all my fault”: a qualitative study of how heterosexual couples experience living with vulvodynia

Abstract

Introduction

Vulvodynia, a chronic genital pain disorder with a high lifetime prevalence among women, has a significant negative impact on both women and their partners. Although there is a growing body of literature on the experiences of women with vulvodynia, there has been little research on the condition's implications for partners and romantic relationships. The aim of this study is to explore how heterosexual couples experience living with vulvodynia.

Material and methods

Eight Norwegian women diagnosed with vulvodynia by gynecologists were recruited with their partners (couples aged 19–32 years). Data was collected via individual semi-structured interviews and analyzed using inductive thematic analysis.

Results

Three main themes were identified in the analysis: Mysterious disorder, Social exclusion and Sexual expectations. The results show that the couples struggle with understanding the pain, as well as navigating their social and sexual lives. We discuss these findings in light of a new theoretical model: the fear-avoidance-endurance model of vulvodynia.

Conclusions

Heterosexual couples living with vulvodynia experience communication difficulties with partners, health professionals, and their social network. This sustains avoidance and endurance behavior, increasing pain and dysfunction over time and giving rise to feelings of powerlessness and loneliness. Social expectations regarding male and female sexuality also promote guilt and shame for both parties in couples affected by vulvodynia. Our results suggest that heterosexual couples living with vulvodynia, as well as health professionals treating them, should be helped to communicate more effectively in order to break vicious circles of maladaptive avoidance and endurance behavior.

Key message

For couples, the prevailing lack of knowledge about vulvodynia limits communication with partners and health care personnel, resulting in both avoidance and endurance behavior, which in turn increases pain.

1 INTRODUCTION

Vulvodynia is an idiopathic chronic pain disorder, defined as chronic pain or discomfort localized to the vulva for which there's no identifiable cause and which lasts at least 3 months.¹ Between 7% and 28% of women are estimated to suffer from it during their lifetime,^{2, 3} and the prevalence seems to be on the rise.⁴ Yet although vulvodynia affects a significant section of the population, reduces quality of life⁵ and has a negative impact on patients’ partners,⁶ there are currently few evidence-based treatment options available.^{7, 8}

A significant proportion of women with vulvodynia may improve without any specific treatment⁹ but most need help from professionals for their pain. At a societal level, vulvodynia imposes significant costs: women often find it difficult to obtain a diagnosis, often consulting several gynecologists along the way, and many suffer for years before receiving effective treatment. In the meantime, their psychological well-being is undermined¹⁰ as they struggle with sexuality, relationships, self-esteem and identity,^10-13 as well as depression, anxiety and suicidality.^{6, 14}

Male partners to women with vulvodynia also tend to suffer from anxiety and depression symptoms^{15, 16} as well as sexual dysfunction.¹⁷ These partners are often the only people in the women's lives who see how much the pain is affecting them.¹⁸ Studies suggest that partners’ responses to pain influence patients’ pain intensity and level of functioning.¹⁹ Therefore, it is of particular interest to the authors of the current study to explore the implications of vulvodynia for heterosexual relationships and male partners. Gaining a better understanding of how vulvodynia impacts heterosexual relationships seems important for improved management of this painful condition and for future health outcomes.

A number of studies have explored how acute pain becomes chronic and is maintained. Vlaeyen & Linton's Fear-Avoidance model²⁰ and Hasenbring & Verbunt's Avoidance-Endurance model of pain²¹ are among the most prominent. Although these models are helpful for understanding many patients with chronic pain, they have limitations when it comes to explaining the behavior of women with vulvodynia. For our research, we turned instead to Engman's Fear-Avoidance-Endurance model of vulvodynia,²² a new theoretical approach to explaining the emergence and persistence of chronic pain in women with vulvodynia.

Previous approaches, such as the Fear-Avoidance model, have tended to connect the degree and longevity of acute musculoskeletal pain with the fear an individual experiences with their pain. It is argued that patients with little or no fear of pain are able to confront the pain they experience, leading to recovery.²⁰ Although the Fear-Avoidance model is commonly used in both clinical and research settings to understand chronic pain, it cannot explain how pain persists in women who do not avoid pain but rather endure it.

In a modification aimed at refining the Fear-Avoidance model, Hasenbring & Verbunt developed the Avoidance-Endurance model of pain.²¹ Here, patients’ endurance behavior (that is, persisting with activities that inflict pain) is taken into account alongside their avoidance behavior. In theoretical terms, two distinct types of endurance are highlighted by this model: those of eustress and distress. With eustress endurance, a patient's positive mood distracts from the pain, resulting in their continuing to endure painful activities through their desire to achieve a positive outcome. Distress endurance is characterized by a person being driven by a negative mood and cognitive avoidance; such individuals will continue to endure painful activities to avoid feelings of shame or guilt. The Avoidance-Endurance model proposes that both eustress and distress endurance maintain and worsen pain over time, through either the overuse and overload of physical structures²¹ or central sensitization.²³ Endurance behavior has been shown to be common in women with vulvodynia,^{24, 25} making it a behavior pattern of particular interest for our study.

Building on the two models outlined above, Engman²² has developed the Fear-Avoidance-Endurance model of vulvodynia. This new model proposes that both avoidance behavior and endurance behavior act as vicious circles which work against positive outcomes. However, Engman et al. contend that eustress endurance may have a more positive outcome than distress endurance.²⁶ Moreover, they emphasize the influence of interpersonal factors as a contextual framework surrounding the model. The three different vicious circles and the adaptive path of pain confrontation are presented in Figure 1.

FIGURE 1

The fear-avoidance-endurance model of vulvodynia.²²

Engman²² argues that fear and pain-related catastrophizing result in the avoidance of painful activities. Over time, such avoidance leads to worsening pain and declining sexual function, including lowered sexual arousal, insufficient lubrication and increase in nociceptor sensitization.²⁷ But Engman also argues that the endurance of painful activities can have similar results: worse pain and impaired sexual function. These are the outcomes of one of two different vicious circles: the eustress and distress loops. Both kinds of endurance behavior are associated with worsening of pain over time, due to overuse and overload of physical structures.²¹

2 MATERIAL AND METHODS

The purpose of this study is to gain in-depth knowledge about women with vulvodynia in a Norwegian context, including the impact of the condition on their partners and romantic relationships. To our knowledge, there has been no research in which women with vulvodynia and their partners have been interviewed separately about their experiences. Our research has aimed to explore the experiences of heterosexual couples living with vulvodynia, what they experience as challenging, and how they manage those challenges.

2.1 Participants

The participants in our study comprised eight heterosexual couples in their 20s (aged 19–32 years) where the woman had been diagnosed with vulvodynia, either localized, generalized, provoked, or unprovoked. The length of their relationships varied from 1 to 10 years. One couple was married, and none of the couples had children. All the women and four of the men came from urban areas of Norway; the remaining three men were from other countries. One of the women was on sick leave due to another chronic pain condition. The remaining participants were either students or working full time. Some of the women had been diagnosed with anxiety or depression, either before or after being diagnosed with vulvodynia. The women were recruited through a women's clinic at Oslo University Hospital, a physiotherapy clinic at Oslo Metropolitan University and from the patient organization for vulvodynia patients in Norway. The women then invited their partners to participate in the study; only if both parties were agreeable, were couples recruited. Although one of the men withdrew from the study before being interviewed, his partner's interview forms part of the data. The participants are presented in Table 1.

TABLE 1. Ages of participants and their relationships.

Women	Men
Ann (29)	Arthur (32)
Christina (28)	Chris (27)
Gina (24)	George (30)
Linda (26)	(Withdrew from study)
Maya (26)	Matt (31)
Pia (20)	Paul (20)
Regina (19)	Roy (20)
Trina (31)	Tom (31)

2.2 Researchers

The authors of this article comprise three clinical psychologists and two physical therapists, all with clinical experience related to chronic pain. We believe the professional background of the interviewer (a clinical psychologist) encouraged participants to give particular thought to psychological aspects of their situation.

2.3 Data collection

Participants were recruited until we reached a point of saturation for both men and women. All participants were interviewed separately by the first author. In our view, interviewing the participants alone allowed them to be more open and honest than if their partner had been present and listening. The first seven interviews were conducted at a university office and the remaining eight interviews were conducted via video calls (with both interviewer and participant linking up from home due to the COVID-19 pandemic). It is the interviewer's understanding that the video call interviews allowed for a less formal setting, with glimpses of the home environment (including pets) enabling both parties to feel more at ease and talk more openly.

The interviews lasted 45–120 minutes. One interview was conducted in English and the rest in Norwegian and subsequently translated. Participants were encouraged to speak as openly as they felt comfortable with. They were told that their quotes might be presented together with their partner's quotes in the article, which meant they would not have full anonymity when it came to their partner. The interviewer perceived the participants to be open and truthful – to such to an extent that it was eventually decided to withhold certain statements for ethical reasons.

An interview guide comprising semi-structured questions was used, with a slightly different version for men and for women, to allow the women to describe how the pain first appeared and how they had navigated the healthcare system. Semi-structured interviews have the advantage of allowing the researcher to be flexible and sensitive to specific topics the participants wish to bring up,²⁸ including some the researcher may not have previously considered relevant.²⁹ For instance, experiences with the healthcare system and of sexual assault and trauma were not part of the original interview guide, but after several women brought up these topics, the interview guide was revised to include them. Most participants talked extensively in response to each question. When two of the men struggled to articulate their experiences, the interviewer encouraged them by asking follow-up questions. At the end of each interview, participants were asked if they wanted to add anything. They were also invited to call the interviewer afterwards if they wished to (none did).

2.4 Data analysis

Data were analyzed using Braun & Clarke's thematic analysis,³⁰ which we regard as flexible regarding research questions, theoretical standpoints and number of participants. The analysis was inductive/data-driven, which means that themes were derived directly from the data.³⁰ Thematic analysis follows six steps:

• familiarizing oneself with the data through interviewing, transcribing and repeated reading;
• generating initial codes;
• searching for themes and the relation between codes;
• reviewing (including combining and separating) themes to achieve internal homogeneity and external heterogeneity;
• defining and naming themes and organizing them into a coherent and internally consistent account;
• producing a report that can convince the reader of the merit and validity of the study.

Analysis began during the interview process, with the first author's interpretations of participants’ descriptions and reactions during interviews and while transcribing the material. Next, three of the authors read all the transcribed material and generated initial codes. On this basis, the authors identified three main themes, perceived as particularly salient. The codes were marked with different colors and tabulated, together with the different themes, by the first author. The codes and themes were repeatedly revised: each main theme was split into two sub-themes, and the names of the themes were also revised several times.

Finally, the authors applied the lens of Engman's fear-avoidance-endurance model of vulvodynia²² to the results. This theoretical model was only used in the last stage of analysis: the discussion of our findings. Throughout the process, repeated discussions between the authors helped raise awareness of pre-understandings related to our clinical backgrounds.

2.5 Ethics statement

The participants filled out informed consents and the study was approved by the Norwegian Centre for Research Data in Oslo, Norway (registration form 846535). Date of approval: May 3, 2021.

3 RESULTS

Our analysis identified three overarching themes relevant to the couples’ experiences of living with vulvodynia: The first theme, “Mysterious disorder”, reveals how the lack of understanding surrounding vulvodynia led to participants feeling powerless, guilty and ashamed of their problems. Secondly, “Social exclusion” sheds light on how the participants experienced social support or loneliness in their social network and relationships. Finally, the theme entitled “Sexual expectations” explores the links between internalized gendered expectations and the couple's relationship dynamics. Quotations from interviews, included to support the findings, are presented in italics. All participants are given fictitious names, with each couple given names starting with the same letter, to allow for easier identification of the couples by the reader.

3.1 Mysterious disorder

3.1.1 Powerlessness

Only one of the participants had heard of vulvodynia before being personally affected by it. Whereas four of the women experienced a sudden onset of vulvodynia, the other four experienced a gradual increase in pain over time, making it difficult for them to realize they had a problem requiring medical attention. The women who experienced a gradual onset spoke of feeling stinging and burning sensations during and after sex. For several years they ignored this, having been told in sexual education that it was normal for women to feel pain during sex. Those with a sudden onset described waking up one morning and suddenly experiencing pain without any apparent cause. The couples emphasized how lack of knowledge about vulvodynia in society made it difficult to understand their own situation. As Pia put it:

I didn't know if this was something that happened because I was bad at [sex]. Was it because he was bad at it? He was my only sexual partner, and I was very sure I was his only one, so I thought that it couldn't be any STDs. It must be something that has to do with the two of us. Or only me, since it seems like he's not experiencing it. He doesn't feel pain. […] It's not anything you've heard about before. […] And it's not like you see it in TV shows or movies.

In the case of most couples, it was the women who paid for treatment, which they saw as their problem. The women emphasized the financial costs of having vulvodynia; most of them had spent considerable sums of money trying to get help. When they sought medical help, the women experienced difficulties getting a correct diagnosis and treatment. Regina recalled it like this:

My GP just gave me some cream and told me to relax, but it still hurt, so I started Googling it, and then I found out about vulvodynia. […] And then I started with creams and stuff. I sought a lot of help at pharmacies and so on, to find out if they knew anything, but there wasn't much help to get.

Most of the women spoke of having had negative experiences with health professionals they sought help from. This contributed to their sense of powerlessness. As Ann recalled:

[The gynecologist] was extremely degrading. He was very derogatory. He couldn't understand how a young woman like me was so sick… I was doing it to myself, and I had to get a grip. He said I was crippled. There were many mean things like that.

The uncertain etiology of vulvodynia made the pain difficult to handle. Most of the women worried about potential causes, including the possibility of cancer. Both men and women speculated about the origins of the pain. While some saw it as psychosomatic or stress-related, others wondered whether it said something about sexual orientation. Paul, for instance, put it down to his partner's sexual preferences:

Another reason I've considered, it's just that she's a lesbian and not interested in men anymore. I've thought about that a lot. […] My manly hands weren't … She doesn't see the appeal, in a way.

The lack of explanation for vulvodynia also made it difficult for the women to discuss it with their partners. Most of them had suffered for several years before telling their partner about it. In the meantime, they strove to accept the pain, all the while simulating pleasure. Typically, the women then told their partners that they had experienced pain for a much shorter period than was actually the case, in an effort to spare them from feeling guilty.

While seeking explanations for their pain, the women avoided various activities in an attempt to avoid triggering the pain – with varying success. The uncontrollability of the pain contributed to further powerlessness for the women, while the men often felt like powerless spectators to their partner's pain. While some of the men felt comfortable about their partner going alone to physical or psychological therapy, others wished they had been more included in the treatment process. Two of the men described how health professionals identified specific exercises they could help their partner with. They emphasized how this gave them something they could focus on, reducing their helplessness and strengthening both their self-esteem and the relationship. As Tom explained:

I got concrete exercises and techniques that could help her relax. […] Sorts of massages, that made her relax and not feel pain down there when we had intercourse. And of course, that's been helpful, both for us as a couple and for her specifically, but also for me. […] From not knowing what to do to getting concrete tools, that's like night and day. One doesn't feel so powerless anymore. […] That's probably the first time I've felt like I have any valuable contribution.

Those couples who had been to physical therapy or psychotherapy together emphasized how this helped them shift from seeing vulvodynia as the woman's problem to dealing with it as a shared relationship problem.

3.1.2 Guilt and shame

The lack of a well-defined cause led both men and women to believe that they might somehow be at fault, resulting in feelings of guilt and shame. Most of the men had found out about their partner's vulvodynia after she had already undergone a long period of suffering. Some described feeling guilty and depressed when they realized that they had unknowingly inflicted pain on their partner for months or years. As Paul put it:

I know she's told me many, many times that it's not my fault, but it feels like it's my fault. That maybe I pushed her too far once. […] That it could be something physically or physiologically wrong with her body – that's not a very relevant theory in my head. It's my fault. […] The general feeling was a sort of disgust for myself, because it was almost like, you know, it was always me who initiated [sex], and it was always me who led and stuff, and it felt really … I want to find a better word, but it was “rapey”, and it felt completely disgusting every time.

Two of the men (Paul and Chris) were in their first relationship, with no previous sexual experience. They wondered if they had caused their partner's pain by doing something wrong. They described how this uncertainty led to a fear of hurting their partner, resulting in reduced sexual desire and fear of sexual situations. At the same time, the women felt guilty for having a sexual problem that put strain on the relationship. As Trina put it:

It's all my fault. […] I'm the one that can't do it. I'm the one who has a physical stop.

Several of the women also believed it was their own fault they had got vulvodynia, which they attributed to being too sexually active, not sexually active enough, or something related to their personality. Most had at some point been told one of these things by health professionals they had consulted. The most common personality “flaws” identified were that they were too neurotic or uptight, or that they worked or exercised too much. Some of the women also blamed themselves for not having children, since they feared how pregnancy and childbirth could affect their pain.

3.2 Social exclusion

3.2.1 Loneliness

Several of the women described withdrawing socially because they felt ashamed of having vulvodynia and feared it might be revealed in conversation. In addition to shame, the women experienced reduced daily function. An important consequence of avoiding various activities was that the women withdrew from certain arenas of life, including work, social events and sports. Some women found it painful to remain seated for long periods, so they had stopped going to lectures or work. Some avoided parties or friend groups because they feared being pressured into conversations about sex and dating. Some of the women had previously exercised regularly but found themselves in a situation where they could no longer wear suitable clothes for their sport. In some cases, exercising triggered their pain. Linda described having to change her style of dress, social life, and work and exercise routine:

I can feel, when my friends talk about something that worked well [sexually], or it was amazing, or so and so, then I can feel like “Fuck, now I feel very immature or childish or left out.” […] The loneliness that comes with this is much bigger than one thinks.

While some of the women experienced support from friends, siblings or parents, most reported having little social support. In some instances, women felt blamed and shamed by their social network. Friends would criticize them for not having sex with their partner. Gina described how peer pressure among the girls in her high school made her desperate to have intercourse and be “normal”:

I remember several times thinking: couldn't [my partner] just knock me out? Just grab my head and punch it against the wall, so that I faint and don't have to be present for it? Or I could have drugged myself, or just got it over with – in some way or another. Because I had this idea that if I just got it over with the first time, it would be fine afterwards.

While the women withdrew from several arenas of their daily life, their male partners mainly withdrew from social conversations about sex and relationships. The men also experienced shame related to their sexual life. Such shame derived from their breaking social norms for masculinity by being in a relationship without having sex, and from fear of disclosing too much personal information about their partner. Chris explained it like this:

I think there is a lot of societal pressure on having a big sex life. I think that if you put your hand up to say “I'm the guy with a girlfriend who doesn't have sex”, that's a lot of social stigma to pick up. […] If we were to for example trying to have a kid, and we were having issues, I feel like I would be able to more comfortably talk to people about that sort of thing. […] I think it's more acceptable to society, to try to have kids, because that's something that we expect couples to do, sort of. And when they fail at it, we care about that journey. Whereas when it's like a couple is not having sex …

Most couples had never told anyone about their struggle with vulvodynia, as this required disclosing personal information about their partner. Some had been given unhelpful advice when they first opened up, encouraging them to keep their struggles to themselves subsequently. While the men got unhelpful advice on how to “set the mood” for sex, several of the women found themselves criticized by friends for wanting a monogamous relationship when they could not have intercourse with their partner. Christina told of her experience:

“You have to make sure to sleep with your man, or he'll leave you” – that's been the standard attitude. Then it's the “But he's a man, so you've got to understand that his head works differently from yours, so you just have to put up with it… just get on with it. If you can't do it, you have to suggest an open relationship or something. You've got to fix this.” That's tough because it puts all the blame … It's a very blaming way of seeing it, that I kind of hold on to a man who could have had a functioning sex life with someone who wasn't broken, or whatever you want to call it.

Experiencing negative reactions and/or unhelpful advice from friends prevented the couples from telling others about their struggles. They were left with only each other to talk to.

3.2.2 Stronger together

Despite feeling socially isolated, some couples found that their relationship grew stronger because of their shared problem. They worked collaboratively to find solutions to the dilemma of wanting intimacy yet needing to avoid pain. As Roy recalled:

We started doing other things, like taking a shower, and then we just touched in the shower and tried to compensate, in a way. […] I told her, “There's nothing that will make me like you less”, and I said I wanted to find a way to solve this, because that was the only thing I wanted. […] My only thought was that we are in this together. […] Of course, I don't think she should do this alone.

More often than the women, the men emphasized how vulvodynia had contributed positively to their relationship and their own personal growth, sexuality, and communication skills. Tom put it thus:

My experience has been that through talking more about [vulvodynia] and keeping the focus on the goal of having children, she has got us to focus more on our sex life, which is good for us as a couple. And it's definitely good for us as individuals, too, that we kind of … What shall I say? In a way we're more in touch with our bodily feelings – including the sexual ones.

Since most of the men talked about their situation only with their partner, this made it important to improve communication within the relationship. The women talked to more people (never more than a few, however), but their partners were usually the only persons who saw their daily struggle and gave support and comfort.

3.3 Sexual expectations

3.3.1 Cultural expectations

The couples emphasized the importance given to sex in our society, and how intercourse is often considered an essential part of maintaining a heterosexual relationship. The women particularly emphasized cultural expectations tied to male sexuality, which they considered to take precedence over their own sexuality. These expectations added pressure on the women to perform sexually; almost all the women considered it their duty (as women) to have regular vaginal intercourse with their partner. As Pia explained it:

He's a boy, so if you don't give him sex, he will go to someone else.

Christina recalled how her friends amplified her sense of duty regarding intercourse:

Actually, I think my buddy who said that “You've got to sleep with your partner, or he will leave you” … I think he sums it all up in that sentence. I think it's because society has facilitated men's desire for sex, and when women can't give them that, the men are no longer interested in the woman, kind of. And then one feels – even though [my boyfriend] has told me a hundred times that “No, I'm not mad at you. I don't blame you” – but still one sits there with this deep feeling of “This is something I should do because it's my duty in this relationship.”

While the women struggled with not living up to cultural ideals about being a sexually active partner, they also felt sad about missing out on something they considered important. They saw themselves as not as “normal” as other women. Most of the couples considered vaginal intercourse the most important form of sexual activity, as well as an indicator of love and intimacy. This made most of the women endure painful intercourse instead of finding and enjoying other – pain-free – sexual activities. In some cases, a certain degree of bitterness was evident in women's accounts: for example, this from Trina:

What is sex? For me it's been a completely messed up thing that's all about doing what the man wants, and it always includes penetration.

Some of the men confirmed that they wanted only intercourse and were not interested in trying other sexual activities. However, most of the men welcomed the idea of trying new activities to build intimacy without pain. The men also brought up cultural ideals of masculinity and told of how they struggled with not living up to expected standards. The ideal man, according to our male participants, was one who successfully initiated sex regularly. The ideal man should also be considered sexually attractive, especially by his own partner, which made it difficult to deal with the rejection that came with vulvodynia. Chris had felt this rejection only too well:

I'm in the situation where I'm sort of waiting for a green light from her to say that she wants to be trying things again. […] I find myself in a situation where, obviously if I ask and get rejected, that hurts.

The men described struggling with conflicting expectations: on the one hand, pressure to conform to masculine norms of taking the sexual initiative and, on the other, wanting to be a supportive partner who would never pressure their girlfriend into any painful activity. Some of the men emphasized how they felt expected to take responsibility for the sexual side of their relationship, which included initiating conversations about sex and supporting their partner's efforts to improve her sexual function and desire.

3.3.2 Partner's expectations

The couples were affected by cultural ideals and norms regarding gender roles, sexual frequency and what constitutes “sex”. Cultural expectations were sometimes confirmed, and at other times refuted, by their partners. The women confronted two options: either to “grit their teeth” (Linda) and endure painful intercourse or avoid sending any signal that could be interpreted as a sexual invitation. Most of the women had at some point reluctantly considered offering their partner a non-monogamous relationship, given the pressure they were experiencing from their social network. While some of the couples had discussed this option, none had opened up their relationship. Christina described the following conversation with her partner:

I told him “If we must have an open relationship, then … you tell me if that's what you want”, kind of. But he was like “No, I don't want that.” […] It's an alternative, even though I maybe wouldn't have enjoyed it. […] I think I dared suggesting it because I knew deep inside that it wasn't for him.

Only one man in our study said this was something he might want if his partner could not have intercourse anymore. The other men expressed varying degrees of frustration at not having as much sex with their partner as they would have liked. George acknowledged that sex was important to him in a relationship:

If [her] pain had been so intense that she could never have sex, we couldn't have been in a monogamous relationship together. That would not work for me, because I have sexual desires that she - in that case - could not fulfill.

Arthur also emphasized the importance of sex in a relationship and how lack of sex becomes a stressful issue for him:

I feel like, as a couple, one should at least… try at least once a week, or … keep things alive, right? Otherwise, it's a little less than desired. […] It gets harder to do stuff with her. It gets to a point where I fear … or get a little tired. Not tired like that, but things become more and more stressful or draining. […] She could have used pain killers.

Some of the other men emphasized that, rather than the sex, it was the general lack of intimacy that put a strain on the relationship. As Matt pointed out:

I can see how [a lack of sex] affects the relationship, and especially how long periods without any intimate contact makes the relationship more like family than a romantic partnership.

In line with Arthur's suggestion that women should use pain killers, some of the women did self-medicate by taking ibuprofen or oxycodone before intercourse. In general, the women were willing to push their own limits and endure significant pain and discomfort in order to satisfy their partners. Some of the women reported having overstepped their personal boundaries in the past. Trina believed this to be a contributory factor to her pain:

The reason I have pain during intercourse is because I overstepped my own boundaries as a teenager. […] When I look back now, I've never had an intercourse I've wanted myself. Not even with my husband.

Ann was less certain of a link between previous negative experiences and her vulvodynia:

I have definitely stretched myself far for some people, I think, and done things I might not have wanted to. There hasn't been anything super-bad or proper painful, but I believe I've stepped past some personal boundaries. But I still don't think it's really related. Or, I don't really know.

Setting boundaries tended to be problematic for these women, since it seemed to involve rejecting one's partner. Some of the women found it easier to set boundaries after getting a diagnosis and professional medical support. As Linda said:

You can just grit your teeth because you don't know what it is. And I believe you - at least I – exposed myself to more than I wanted to, because it costs to say, “it doesn't work, it's too painful.” […] After we got an answer about what this is and was told that for some people it can be good to abstain from sex, [my boyfriend] has been just fine with us not doing it.

Receiving a diagnosis of vulvodynia gave some of the women the excuse they needed to turn down their partners’ sexual advances, something they had been unable to do in the absence of a medical excuse. While some of the women found it difficult to reject their partner's advances, others struggled to engage their men in exercises prescribed by health professionals. This was the case with Maya:

He could have helped me more with physical exercises and stuff like that, but he doesn't want to. […] He has chosen to be more on the sidelines. […] Maybe I've become a little bitter because he won't do those things for me.

While Maya wanted Matt, her partner, to participate more actively in her treatment process, Matt was unwilling to comply: he believed their relationship and shared sex life would suffer over time if it consisted only of physical exercises, without any spontaneity or emotion:

What caused a lot of problems was that we came back to these things that one should try to do together, that the sexuality completely lost all emotions and became a clinical exercise: “Now we're going to try something.” And it was difficult being motivated to participate in that, because it was kind of something … it had nothing to do with sex, really.

While some of the men were relieved when they were invited to physical therapy and got concrete exercises to be of help to their partners, Matt feared the consequences of this strategy. Arthur, too, reacted against the pressure and responsibility he felt had been placed on him:

I was going to do some massage stuff once. […] The only thing I didn't like was that I felt like it was very much up to the man, in a way, to just fix everything. He shall give massages, and then he shall do that for an hour or so, or I don't know.

All the couples struggled with communicating their sexual desires, fears and boundaries. Difficulties with communication were related to a lack of language to describe vulvodynia, feelings of shame and guilt, and cultural expectations about heterosexual relationships and sexuality. Under the circumstances, relationships became prone to maladaptive dynamics where both parties assumed they knew what the other wanted -- without ever having these assumptions confirmed or refuted.

4 DISCUSSION

Overall, the couples emphasized how their lack of knowledge and poor understanding of vulvodynia made it difficult to talk about, both within and outside the relationship. Social and cultural pressure to conform to gendered heterosexual norms put further strain on the couples, especially the women, who carried the burden of having a sexual problem. While all the couples struggled with handling vulvodynia and the challenges it created, some of the couples experienced personal growth through their encounter with this medical condition. In line with our theoretical framework, we now discuss our findings by applying the lens of the Fear-Avoidance-Endurance model of vulvodynia.²² How are factors such as the onset of pain, experiences with health professionals, and partner responses related to avoidance and endurance behavior in couples living with vulvodynia?

The mystery surrounding vulvodynia appears to have played a significant role in shaping our participants’ experiences. The women who suffered a sudden onset of the condition developed a significant amount of pain-related fear. This seemed to carry them into a fear-avoidance cycle in which they avoided various pain-triggering activities, including sexual activity with their partners. These women quickly sought medical help, suspecting their pain had a medical cause, and they told their partners about their pain at an early stage, perhaps because they perceived the pain as salient and temporary.

However, while a sudden onset might be easier to present to a doctor, it could lead women into a vicious circle of avoidance. US-based research indicates that around 35% of women attend more than 15 appointments and wait more than 3 years between the onset of symptoms and getting diagnosed with vulvodynia.³¹ The lack of explanation for their pain might contribute to ongoing threat monitoring, which is thought to drive the vicious circle of fear-avoidance.²⁰ Moreover, patients might deduce from the uncertainty and lack of understanding that the pain represents an ongoing threat that they need to monitor and pay attention to. In this way, lack of knowledge about vulvodynia leads vulvodynia patients into more catastrophic thinking patterns, sustained threat monitoring, and physiological stress responses. These, in turn, increase avoidance behavior, which is known to further decrease sexual function and sustain the pain.^{32, 33} Such findings underline the importance of early, accurate diagnosis and the need for health professionals to communicate better with vulvodynia patients.

Previous research suggests that only half of women experiencing symptoms of vulvodynia seek help, with less than 2% obtaining a diagnosis.³⁴ The reasons for this are unknown, but our results illustrate how a gradual onset may keep women from seeking help. The women in our study who experienced a gradual onset of vulvodynia perceived painful intercourse as “normal” for young women, leading them to ignore their discomfort for a long time before seeking help. They also blamed themselves for their reduced sexual functioning, rather than viewing their lowered libido as the result of years of painful sex. This dynamic has been understood as driving distress-endurance behavior,²¹ and it goes against the hypothesis of the fear-avoidance model that confronting one's pain leads to recovery.²⁰

The women in our study also described distress-endurance behavior related to gynecological examinations, where they experienced their personal boundaries being repeatedly crossed by professionals. Most of the women had been told by doctors that their pain would get better by mere exposure, and this seemed to place additional pressure on them to endure intercourse despite pain. The shame many recalled experiencing during medical examinations may have also contributed to the circle of distress-endurance.^{21, 22}

Given the absence of visible symptoms and the inadequacy of testing, most women with vulvodynia experience being dismissed and misunderstood when complaining about their discomfort.^{10, 12} Lack of understanding, knowledge and sympathy on the part of health professionals contributes to the couples’ experience of vulvodynia as a mysterious disorder. This may ultimately contribute to the women overstepping their own boundaries in adhering to cultural norms of female sexual responsibility.

When the men eventually realized their partner's problem, they too experienced negative emotions: guilt about inflicting pain on their partner and also shame in the sense of feeling like a sexual predator. This again led to avoidance of sexual situations to avoid inflicting further pain, and to reduced sexual function. When male partners conclude they have little influence over their partner's condition, this can exacerbate a sense of powerlessness and frustration, possibly leading to the depressive symptoms that have been reported by male partners in previous studies.^{15, 16}

For some of the couples in our study, family and friends were a source of support in a difficult situation. For others, there was little support available in their social network, either because they did not dare disclose their problems to anyone or because those around them showed little understanding. Several of the women in our study had experienced explicit negative reactions when disclosing their sexual problems, like being told they ought to endure painful sex to please their partner. These attitudes suggest that male sexual pleasure is considered more important than a woman's right to avoid pain, accentuating women's shame and guilt. Social shaming like this might increase distress-endurance by making women feel obligated to endure painful sex so as not to lose their partner or feel the social stigma of being a “bad partner”. This suggests that distress-endurance can be driven by fear, as well as by shame and guilt.

Fear of shaming was also experienced by the male partners. Here, cultural norms for masculinity that emphasize the importance of sexual assertiveness appear to play a role. That such gendered expectations may influence a couple's experience of vulvodynia is underlined by a meta-analysis³⁵ that found a positive correlation between gender inequality and the prevalence of sexual pain across a range of countries.

In contemporary western society, sexual and social competence are intertwined,³⁶ which could explain why it is so difficult for women with vulvodynia and their partners to talk about vulvodynia. Being seen as socially incompetent might lead to social rejection and decreased self-esteem, which could explain why few people talk openly about their sexual health problems.³⁶ In line with this, some of the women in our study described themselves as “childish” and “immature”, which can be understood as a means of degrading themselves as less socially competent than their peers. Importantly, social rejection may in itself represent a type of social pain that shares brain circuits with physical pain.³⁷ As such, it may aggravate the pain experienced by these women.

Previous research has found that women often engage in painful intercourse to avoid romantic and social repercussions,³⁸ and several of our participants had in fact experienced repercussions in their romantic relationships and were consequently afraid of being left because of their sexual problems. This sexual endurance behavior is highly prevalent among young women,^{24, 34, 39} mainly because they prioritize their partner's sexual pleasure over their own.²⁵ The belief that penile-vaginal penetration is a “natural” sex act to which men are entitled appears widespread.⁴⁰ This could explain why women are more likely than men to engage in sex out of a sense of duty,⁴¹ and why every third woman with genital pain does not tell her partner about it.²⁵ By adhering to the cultural ideal of intercourse as the only “real” sex, couples overlooked other – potentially pain-free – sexual activities.

Our results suggest that, despite their sometimes believing otherwise, male partners exert an important impact on the relationship. Previous studies have shown how partner responses influence pain intensity, behavior and individuals’ ability to work.¹⁹ In particular, the consequences of catastrophizing can be mediated by the partner's response, or the patient's interpretation of that response.⁴² Catastrophizing is thought to be adaptive when experiencing acute pain, but it can decrease partner support over time.⁴³ In the fear-avoidance circle, it has been argued that catastrophizing increases avoidance and intensifies pain,^{20, 32} making it an important target of treatment. Partners can learn validation skills,⁴⁴ which is associated with higher relationship satisfaction.⁴⁵ While all men in our study spoke of caring for their partners, their degree of validation varied according to their understanding of the pain. As our results indicate, men who blame themselves for their partner's pain in fact burden women with intense feelings of guilt, an aspect which been shown to be correlated with women's level of pain.⁴⁶

Our findings suggest that a gradual onset of vulvodynia makes communication between the woman and her partner particularly challenging. The shame and guilt the women experienced made it difficult to tell their partners about the pain. At the same time, the gradual increase in pain intensity in turn made it difficult to stop having regular sex with their partners. Accustomed to ignoring pain and enduring painful activities, these women were aware that disclosing their problem would mean telling their partners how long they had been experiencing painful sex.

Engman et al. have proposed that the different endurance circles may be associated with different motivational goals.⁴⁷ While approach goals motivate an individual's behavior by offering something positive (for example, a sense of intimacy or pleasure), avoidance goals motivate an individual to avoid something negative, such as criticism by others or emotions such as guilt or shame.⁴⁸ Previous research has shown how approach sexual goals are related to better sexual function than avoidance sexual goals.⁴⁹ A previous study on women with provoked vestibulodynia supports the idea that both avoidance and approach sexual goals are associated with endurance behavior, whereas avoidance behavior alone is associated with avoidance sexual goals.⁵⁰ This finding supports the notion that endurance behavior can be understood as a form of avoidance behavior, since pain is endured to avoid other negative outcomes that the individual might fear more than pain: for example, relational conflict or losing one's partner.⁴⁷

Our results suggest that women's coping strategies can also change over time. After enduring painful intercourse for several years, some of the women in our study reached a point where they started avoiding painful activities that they had previously endured. Here, the change in coping strategy can be understood as a change in goals: for instance, from the goal of pleasing a partner to that of feeling less pain. In light of our findings, this turning point seems related to the women losing hope of improvement after years of pain and unsuccessful treatment, or to the emergence of new worries around pregnancy and childbirth.

Importantly, a few of the couples experienced personal growth because of their shared struggle with vulvodynia; they found a way to communicate and break the vicious circles. By developing emotionally supportive and sexual skills beyond the negotiation of intercourse, they were able to enrich their ways of being sexually intimate without inflicting further pain.

One result of the difficulty of finding competent health professionals to diagnose and treat vulvodynia¹⁸ is that individuals usually require access to expensive private healthcare. All the women in our study had the means and knowledge to navigate the public and private health care system, suggesting they had received more healthcare than most women suffering from vulvodynia. In addition, most of the women in our study had suffered from vulvodynia for a long time. Since many patients get better more quickly and with less treatment,⁹ the women in our study may have been more severely impacted by vulvodynia. While the women we contacted were generally eager to participate in our research, many male partners declined participation for unknown reasons. All the couples in the study had been together for at least a year. This means that couples who broke up early because of vulvodynia were not included in the study. All the women had also told their partners about their vulvodynia, which many women with genital pain choose not to do.²⁵

A further limitation, while at the same time representing the novelty of our study, is our use of the fear-avoidance-endurance model of vulvodynia for discussing results related to couples. Indeed, this theoretical model was developed for use with individual patients suffering from chronic pain, and not couples. However, by including partners it can be argued that our study adds new insight into the relational aspects of the model and how cultural notions of sexuality intertwine with these aspects.

5 CONCLUSION

Our results build on previous research by showing how lack of knowledge about vulvodynia, including among health professionals, can contribute to couples’ difficulties. For women and their partners, the mystery surrounding vulvodynia pain inflicts stress and evokes negative emotions such as fear, shame and guilt.

Although some couples grew closer because of their shared challenge, others experienced loneliness both in their social network and in their romantic relationship. Some of the loneliness and social exclusion these couples experience seems to be tied to cultural expectations around men and women's sexuality, duties and rights when in a committed romantic relationship.

Our results suggest that women with vulvodynia sometimes find it easier to endure pain rather than avoid it, despite a possible increase in pain and distress over time. These findings offer new insights on how different forms of vulvodynia onset, experiences with health professionals, and partner responses may impact avoidance and endurance behavior.

Finally, our results suggest that sexual avoidance can be driven by feelings other than fear (with shame prominent among these) and that endurance behavior can also be driven by fear (of social repercussions or losing one's partner).

Our results highlight the importance of effective communication by health professionals when working with vulvodynia sufferers. Providing a concrete and precise explanation of vulvodynia, as well as validating the woman's experience of it, seems of paramount importance to counteract the notion of a mysterious disorder, and through that reduce threat activation.

Our findings also underline the importance of including partners in the understanding and treatment of vulvodynia. Including partners can help couples manage feelings of powerlessness, guilt and shame by presenting vulvodynia as a relationship project rather than a woman's problem. This may in turn encourage communication and cooperation, helping couples move beyond avoidance and endurance behavior to discover more adaptive coping strategies: ones that reduce pain intensity and improve sexual function and satisfaction.

Health professionals should be particularly mindful of how they communicate their understanding of sexuality and vulvodynia to their patients, as well as how they give advice concerning sexual activity. A focus on sexual pleasure, rather than sexual function, as the measure of sexual health may open up possibilities for couples to develop new ways of being sexual together: ways that are pain-free yet sexually satisfying, thereby improving emotional intimacy and social competency.

Finally, it is important to acknowledge that each patient is unique. For many women, the most fearful aspect of vulvodynia may not be the physical pain but rather the fear of being left by their partner. Exploring each person's fears and motives may enable a better understanding to emerge.

6 AUTHOR CONTRIBUTION

LMS contributed to study design, data collection, analyses, and writing the manuscript. GKH and SLS participated in recruitment of participants and data analyses. All authors helped with the interpretation of results, reviewed and commented on the manuscript draft and approved the final version.

ACKNOWLEDGMENTS

We would like to thank all the user representatives included in this project for their invaluable contribution. We would also like to thank the Norwegian patient organization for vulvodynia and Oslo University Hospital for help with the recruitment process. We want to thank Linnéa Engman for developing the fear-avoidance-endurance model of vulvodynia and letting us use her illustration of it in this article. Finally, thanks to the Norwegian Women Public Health Association for funding this study and helping to educate health professionals and others about vulvodynia.

FUNDING INFORMATION

This article is part of a Ph.D. project funded by the Norwegian Women Public Health Association (project number 40017).

CONFLICT OF INTEREST STATEMENT

None.