Introduction

Multiple Sclerosis (MS) is a chronic inflammatory disease that causes progressive disability in the patients by damaging nerve fibers [1, 2]. It mostly develops during the reproductive age, and its incidence is three times more in females than in males [3, 4]. MS is highly prevalent in Iran with a prevalence of 29.3 per 100,000 and a growing incidence [5].

The complications of this disease widely vary depending on the site of the damaged nerve fibers. In addition to spasticity, lack of balance, tremor, visual impairment, speech disorders, cognitive problems, psychological problems, urinary and fecal incontinence, sexual dysfunction is considered a prevalent complication of MS that affects patients’ quality of life [3, 6, 7].

The patients may experience sexual problems at any stage of the disease, even in periods of mild disabilities [2]. Research suggests 40–80% of women with MS face problems in their sexual life [8]. A meta-analysis conducted in Iran found 62% of women with MS experience sexual problems [9].

Sexual problems and disability are two completely separate concerns that vary among individuals; nevertheless, a large body of literature has focused on the quantitative and non-individual investigation of these problems [10]. Moreover, qualitative research is a method of discovering covert phenomena and investigating the perception and experiences of individuals with the study subject [11]. Few qualitative studies have so far examined the perception and experience of women with MS with their sexual life. A study conducted in Canada in 2007 found women with MS to make efforts to solve problems alone and in silence to avoid conflicts in their marital life. These women tended to avoid intimacy with their husband, as this intimacy could lead to sexual relationships, which caused their discomfort and harassment [10]. A study in Turkey in 2017 investigated sexual life in women with MS, and found these women to perceive MS as an earthquake in their sexual life and to have developed a useless self-image associated with changes in their roles as wives and mothers [12]. A qualitative study by Dehghan-Nayeri et al. [13] in Iran found women with MS to hide their sexual life behind a mask. They were found to withhold their sexual problems from their spouse and refused to express their sexual problems.

Talking about sexual issues is a taboo in many countries [12, 14, 15]. Iran is not an exception. In the Iranian society, given the cultural and religious background, women feel ashamed and embarrassed about expressing their sexual problems, and perceive talking about these issues as a taboo, especially when they get sick [13, 16, 17]. The results of a qualitative study in Iran showed that in addition to feeling embarrassed and uncomfortable talking to patients about sexual problems, physicians and health service providers had inadequate knowledge about these problems [16]. Therefore, despite the high prevalence of MS and the associated sexual dysfunction and impaired quality of life in the patients, this complication is usually neglected in the treatment process and women with MS do not receive suitable treatment for their sexual problems [9, 13].

On the other hand, given the use of quantitative methods in most studies on sexual life of women with MS, performing only one qualitative study on the sexual life of Iranian women with MS [13], and a lack of studies on discovering the dimensions of sexual life in these patients, the questions raised include “What is the sexual life of women with MS like?” and “What is the perception and experience of Iranian women with MS with their sexual life after developing MS?”.

Therefore, due to the high prevalence of sexual dysfunction in Iranian women with MS, neglect of sexual issues in these patients during treatment process and the lack of sufficient research in this area, it is essential to perform a qualitative study that discovers the covert aspects of these patients' sexual life, add important perspectives to the missing literature and help to design interventions with the aim of improving sexual life of women with MS. Essentially, this study was conducted to explain sexual life in Iranian women with MS and the perception and experience of these women with their sexual life.

Materials and Methods

Study Design and Participants

The present qualitative study used conventional content analysis to explain sexual life in Iranian women with MS and the perception and experience of these women with their sexual life. The study setting comprised Iran MS Society in Tehran and private places in which the participants were comfortable, e.g. a hospital, health center, home and workplace. The study population consisted of married women with MS presenting to Iran MS Society and key informants including husbands of the women with MS and MS specialists and experts. The eligible patients comprised married Iranian women aged 18–50 years with MS diagnosed by a neurologist based on the McDonald criteria, with at least six months of experience of sexual activity after developing MS, without other acute and chronic diseases, not being menopausal and with no sexual dysfunction in their husband according to their self-reports. The eligible key informants comprised men with at least six months of married life with an MS woman and health service providers, including specialists in neurology, sexology, reproductive health and psychology with at least two years of work experience. The subjects’ willingness to withdraw from the study was the only exclusion criteria.

Data Collection

The data were collected using in-depth semi-structured interviews with open-ended questions. All the interviews were conducted by the first author (V.Gh.), as a Ph.D. student in reproductive health, who had passed qualitative research courses. The whole process of data collection and analysis was supervised by M.S. and G.O. as experts in qualitative research and faculty members of Shahid Beheshti University of Medical Sciences. Two pilot interviews conducted first were not included in the analysis process. The participants were selected through purposive sampling from February to June 2019. Maximum variation was observed in terms of age, level of education, employment status, disease duration, marriage duration, type of MS and disability status score. The score of disability status was determined by a neurologist using the Expanded Disability Status Scale (EDSS).

The researcher used interviewing skills to provide the participants with a safe and intimate atmosphere and helped them to participate and freely express their experiences, thoughts, feelings and perceptions of their sexual life. The interviews began with open-ended questions such as “How is your general sexual status?", “How is your sexual health after developing MS?", "Please express your feelings about your sexual life." and “How did MS affect your role as a sex partner?". The interviews continued to clarify the dimensions and characteristics of the study subject with probing questions such as "How?", “What do you mean by that?" and “Please elaborate on this point”. Every individual interviews lasted 45–60 min, and all the interviews were tape-recorded. In addition to interviews, field notes were used for data collection. Although data saturation was achieved with 15 interviews, three additional interviews were conducted for a greater certainty. Eighteen in-depth individual interviews were ultimately conducted with 13 women with MS and 5 key informants.

Rigor of the Data

Lincoln and Guba's criteria were used to confirm the rigor and trustworthiness of the data. To increase credibility, adequate time was allocated to data collection and frequently reviewing the data, (prolonged engagement and persistent observation). In addition, integration of data collection methods, i.e. individual interviews and observations, and data collection resources, i.e. women with MS and key informants also increased the credibility of the data. Some codes extracted from interviews were reviewed by four women with MS who had not participated in the study to ensure that the results accurately depicted patients’ experiences and their feedback on the results. To confirm the dependability of the data, code-recode and external checking were used. To confirm the confirmability of the data, the researcher abandoned all her assumptions and thoughts and carefully documented all the research steps and allowed for external auditors to investigate all the steps. To ensure transferability and comprehensiveness, a clear explanation of the methods of collecting and analyzing the data was presented along with examples of the statements made by the participants [18].

Data Analysis

As the data were being collected, they were analyzed in MAXQUDA10 using a conventional content analysis based on the criteria proposed by Graneheim and Lundman [19]. After transcribing the recorded interviews, they were carefully reviewed by the researcher several times to achieve an accurate understanding of the interview contents. The text was divided into meaning units, meaning units were condensed while preserving the meaning and labeled with codes. Similar codes were then categorized in subcategories, and the subcategories were classified into a category based on common properties. The latent content of the similar categories was eventually formulated as a theme.

Ethical Considerations

The present study was extracted from a Ph.D. thesis on reproductive health, and approved by Iran MS Society and the Ethics Committee of Shahid Beheshti University of Medical Sciences. Before conducting the interviews, the researcher briefed the participants on the study objectives, and ensured them of the confidentiality of their information and the voluntary type of participation. Informed written and verbal consent was also obtained from the participants for participation in the study and recording the interviews. All the interviews were conducted in a private and quiet room, and the participants were nicknamed.

Results

The study women with MS were 22–46 years old and had a mean age of 36.92 ± 6.66 years. The majority (61.5%) of the participants had a university degree and 53.8% were housewives. Tables 1 and 2 respectively present the other details of the participating women and key informants.

Table 1 The sociodemographic and clinical characteristics of with MS (N = 13)
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Table 2 Characteristics of key informants (N = 5)
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Three main themes extracted from analyzing the data included “declining quality and quantity of sexual relationships”, “self-neglect in sexual relationships” and “low sexual self-efficacy”. Table 3 presents the themes, categories and subcategories.

Table 3 Themes, categories, and subcategories of the perception and experience of women with MS with their sexual life
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Declining Quality and Quantity of Sexual Relationships

This theme comprised three categories of “poor sexual function”, “reductions in the frequency of sex” and “fear of recurrence of negative sexual experiences”.

Poor Sexual Function

This category reflects the effect of MS and its complications on the sexual function of these patients. The majority of the participants complained about their poor sexual function, and comparing their sexual life after with before MS, found their sexual function to have been severely affected by the disease and its complications. This category comprised three subcategories, i.e. “a decrease in or the loss of sexual desire”, “vaginal dryness and pain during intercourse” and” orgasmic disorder”.

A significant effect of MS on sexual function appeared as severe reductions in sexual desire. Most of the participants complained about their lack of or severe reduction in sexual desire after developing MS. A participant with a 10-year history of MS said,

My sexual desire decreased a lot after the disease, while I had a much better sexual desire before getting sick, but now, especially this last year, I have no sexual desire at all, I can say only 10% of it has left (p. 3).

Most of the participants also identified vaginal dryness and pain as a major factor contributing to their poor sexual function. A participant expressed her feelings as,

It hurts so much in my vagina because I don't get wet at all, it’s like something sharp rubbing in my vagina (p. 12).

Orgasmic disorder, including delays in attaining sexual climax and failing to experience a pleasant orgasm, was another factor cited by a number of the participants. A participant said,

I reach orgasm very late … The moment I’ve almost reached orgasm the sensation fades … I might have this feeling once in every 4 sexual relationships (p. 1).

Reductions in the Frequency of Sex

The majority of the participants reported a decline in the frequency of their sex due to the effects of the disease and its psychophysical complications and their spouse’s disinterest. This category comprised two subcategories, i.e. “the poor psychophysical status of the woman for having sex” and “the spouse’s disinterest in having sex”.

Some of the participants reported that their frequency of sex had been negatively affected by their poor psychophysical status appearing as muscle weakness, low energy levels for having sex, fatigue, muscle spasm, impatience and depression.

A participant with an EDSS score of 5.5 said while crying,

My disease has terribly progressed over the past few years, my phsycial strength and energy has been attenuated. I often feel exhausted, especially at nights, causing our sex to be unintentionally cancelled. Our relationship has become very very bad … The number of our sex has reduced so much that we are becoming like siblings as if we are no longer a couple (p. 3).

A participant in this regard stated:

Most often I feel depressed and in no mood even to think about myself let alone my spouse and having sex with him. In these circumstances, I surely turn his request for sex down (p. 11).

One of the key informants said,

Some of the patients undergo injections three times a week. After the injection, they show symptoms of fatigue and cold. These conditions surely affect the possibility of establishing sexual relationships (A neuorlogist).

Some of the participants also reported that after developing MS, their spouse had gradually turned cool and disinterested in sexual relationships. A participant expressed her feeling as:

I feel my husband is no longer eager for sex since I got sick. He no longer insists on having sex. Our sexual relationships have therefore been far and few between these days (p. 2).

The spouse of one of the women with MS with a 23-year history of marital life said,

She responds to sexual stimuli very late, it's very frustrating because men are different …This has lowered my interest in sex (A spouse).

Fear of Recurrence of Negative Sexual Experiences

Most of the participants reported reductions in the quality of their sexual relationship due to being afraid of recurrence of negative sexual experiences. This category comprised two subcategories, i.e. “fear of the recurrence of physical complications during sex” and “fear of recurrence of unpleasant sexual relationships”.

Some of these women explained their fear of recurrence of the physical complications as urine leakage during sexual activity. One of the participants with an 11-year history of the disease said,

I'm always worried by my urinary leakage, lest it causes my shame before my husband (p. 9).

Some of the participants expressed their fear of recurrence of unpleasant sexual relationships. To this regard, one of the participants said:

When we want to have sex, the first thing that crosses my mind is what if I don’t reach orgasm again? I almost always fear that I have sex without orgasm (p. 6).

One of the key informants also said,

A woman who is not stimulated, does not get wet, has pain and does not feel orgasm, which is a bad experience. That is why she does not want this cycle to be repeated and therefore further loses her sexual desire (A sexologist).

Self-Neglect in Sexual Relationships

This theme consisted of two categories, i.e. “priority of the spouse in sexual relationships” and “renouncing one’s own rights in sexual relationships”.

Priority of the Spouse in Sexual Relationships

This category consisted of two subcategories, i.e. “priority of the spouse’s sexual needs” and “priority of the spouse’s sexual satisfaction”. Most of the participants gave priority to their husbands’ sexual preferences and needs over theirs. A participant said,

In our sexual relationship, my husband’s sexual need is more important for me, I mostly have sex because of him; anyway, I know he is a man with needs … (p. 7).

Most of the participants also prioritized the sexual satisfaction of their husband. A participant described her oponion in this regard as follows:

I want my husband to be satisfied with our sexual relationships … his satisfaction with our sexual relationship has priority over my sexual satisfaction because I feel better if he feels satisifed even if I don’t (p. 10).

Renouncing One's Own Right in Sexual Relationships

This category comprised three subcategories, i.e. “disregarding one's own sexual pleasure and satisfaction”, “ignoring one's own demands in sexual relationships” and “sex, merely a duty”.

Some of the participants completely disregarded their sexual pleasure and satisfaction. A participant said,

My own sexual satisfaction is not important to me at all, I do not care at all whether I am satisfied or not, whether I enjoy it or not because, with this sickness, sex doesn’t matter to me at all, let alone enjoying it (p. 13).

Some of the participants ignored their demands in sexual relationships. A participant explained her experience as follows:

Since I am sick, he pays for my expenses and buys me medicines, I should not ask him any more what to do during sex, because I'm afraid my husband might think I’m so rude … That's why I ignore my desires … (p. 12).

The majority of the participants identified the structural nature of sexual acitvities and affairs as duty-based and sexual relationships as a duty to their spouse. A participant said,

I see sexual relationships as a duty squarely on my shoulders to satisfy my husband … to put it simply, for me it is not a two-way thing at all (p. 5).

Low Sexual Self-Efficacy

This theme consisted of two categories, i.e. “low sexual self-confidence” and “belief in inability in sexual relationships”.

Low Sexual Self-Confidence

This category comprised two subcategories. i.e. “feeling sexually unattractive” and “feeling weak and defective”.

Most of the participants reported a feeling of not being sexually attractive to their husband due to the disease complications. Feeling sad, a participant said,

MS has made my skin dry, I have lost a lot of hair and turned overweight due to the complications of corticosteroids. I don’t have things that make women attractive (p. 5).

A participant with a four-year history of MS expressed her low self-confidence as:

I don't believe in myself any more, I don’t think I can be a good and attractive woman to my husband in sex (p. 2).

Some of the participants identified their disease as a weakness and defect. A participant said,

I always think I have a weakness or defect in my sexual relationships compared to other women, and this defect is my disease (p. 8).

A psychologist with 10 years of work experience said,

These patients perceive the disease as a defect and feel weaker than other women in sexual relationships (A psychologist).

Belief in Inability in Sexual Relationships

This category comprised three subcategories, i.e. “inability to provide and receive sexual pleasure”, “inability to provide favorable physical conditions for sexual relationships and inability to solving sexual problems”.

Some of the participants believed they were no longer capable of providing and receiving sexual pleasure. A participant with an 8-year history of MS said,

I can neither enjoy our sexual relationship nor do something to help my husband enjoy. I know I’m not that capable any more and my efforts are in vain (p. 4).

A participant expressed her inability to provide physical conditions for sexual relationship as:

I used to make lots of preparations for our sexual relationship before I got sick, like decorating the room, wearing attractive clothing and lighting candles, but it is not the case after getting the disease. I would like to provide conditions for a better sexual relationship as before, but I find myself unable, I don’t have sexual desire and have lost my power (p. 10).

The experience of some of the participants also suggested their inability of solving sexual problems. A participant said,

Having developed MS, I can’t solve sexual problems facing me. I neither know what to do nor can solve these problems that have been added to my problmeatic disease.

Discussion

The present qualitative study was conducted for the first time in Iran to explain sexual life in women with MS and the perception and experience of these women with their sexual life. Three main themes extracted from analyzing the data included (1) “declining quality and quantity of sexual relationships”, (2) “self-neglect in sexual relationships” and (3) “low sexual self-efficacy”.

In line with recently-conducted studies [2, 10, 17, 20], the present findings showed that MS significantly affects the quality and quantity of sexual relationships in patients with MS. The present study women with MS had experienced poor sexual function including a decrease in or the loss of sexual desire, vaginal dryness and pain during intercourse as well as orgasmic disorder. In line with the present study, a qualitative study conducted by Yilmaz et al. [12] in Turkey in 2017 found changes in the sexual function of women with MS after developing the disease. These women reported vaginal dryness, decreased sexual desire and arousal and decreased vaginal sensation.

A large body of literature suggests a high prevalence of sexual dysfunction in women with MS and that they are highly vulnerable to sexual dysfunction during the course of their disease [3, 8, 9, 21]. Sexual dysfunction in these patients was also found to be associated with the neurological damage, physical complications including fatigue; urinary and fecal incontinence; spasticity; tremor and psycho-emotional responses to the disease including depression; stress; anxiety and side effect of medications [2, 3, 22, 23].

The women in the present study identified their poor psychophysical condition as the cause of reductions in the frequency of their sexual relationships. Evidence suggests the lower frequency of sexual relationships is the initial symptoms of changes in sexual life after developing MS [10, 24, 25]. These changes can be explained by the debilitating nature and psychophysical complications of MS, which lower the ability of women in having sexual relationships [12, 13]. In addition, the present study found the spouse’s disinterest in having sex to be another cause of reductions in the frequency of sex. The spouse of one of the women with MS attributed his disinterest in and indifference to sex to the poor sexual responses of his sex partner. In contrast to the present study, Esmail et al. [10] in their study reported that the male partners of women with MS identified fatigue-associated reductions in the frequency of sex as the only effect of the disease on the sexual response of their wife and these men therefore had no major complaints about this issue. This discrepancy of results can be explained by the fact that, being afraid of conflicts and arguments, the women in this study made efforts to hide and solve their sexual problems by themselves.

The present study women expressed fear of recurrence of negative sexual experiences. According to Basson's non-linear model, women’s sexual function is affected by their previous negative and unpleasant experiences [26, 27]. Observing a decrease in willingness to have a sexual relationship in these women is therefore not unexpected given their unpleasant previous sexual experiences, such as vaginal dryness and pain, not achieving orgasm, urinary and fecal incontinence, bodily pains and muscle stiffness in legs. These women were afraid of the recurrence of these negative experiences in their future sexual relationships. According to the Basson's model, having pleasant previous sexual experiences acts as a motivational factor that can trigger the next sexual cycle [27].

According to the theme of “Self-neglect in sexual relationships”, the results of the present study showed that the women with MS gave priority to their husbands’ sexual needs and satisfaction over their own sexual needs and satisfaction. Similar to our study, the interviews conducted with Canadian women with MS and their husbands in a qualitative study, to determine their experience of their sexual relationships showed that the majority of the women gave priority to the sexual needs of their partner [10]. Moreover, in a study by Dehghan-Nayeri et al. [13] women with MS earnestly sought to satisfy the sexual needs of their husband owing to their love for them or being afraid of losing them. Evidence suggests giving priority to husband by women in sexual relationships can be generally associated with their fear of losing their husband, their efforts for sexually satisfying their husband, avoiding sexual life conflicts, seeking husband pleasure, fear of their husband’s betrayal and saving marital life [13, 16, 28].

The results of our study showed that some of the participants did not consider any rights for themselves in sexual relationships. In fact, these women considered sex a duty to their spouse, and disregarded their rights in sexual relationships by ignoring their sexual pleasure and satisfaction and desires. Having sexual relationship can be considered a duty toward the spouse based on the socio-cultural background and religious beliefs of Iranian women who regard meeting the sexual need of their husbands as a moral and religious responsibility [16, 29]. In general, self-denial in sexual relationships in these women can be explained by the disease priority over their sexual life and their unawareness about their sexual rights [16, 30]. According to the results of this theme, sexual relationship is regarded as a personal rather than marital concept.

“Low sexual self-efficacy” was another theme of this study. Sexual self-efficacy refers to one’s belief and confidence in the ability to have an effective, enjoyable and pleasurable sexual function, acceptability to the sex partner, ability to manage the challenges of sexual life, evaluate one’s ability in sexual life and controlling sexual experiences [31,32,33].

The majority of women with MS in our study identified the disease as the cause of their low sexual self-confidence. According to the literature, disability and chronic diseases can be associated with low self-esteem and poor self-image [22, 34]. Bronner et al. [3] identified self-esteem and body image as the effective factors in the sexual life of patients with MS.

Women with MS often develop negative body image due to changes in their appearance caused by MS and its complications, and feel they have lost their feminine sexual attractiveness. This causes anxiety, depression and loss of sexual self-confidence [13, 35, 36]. This low sexual self-confidence and negative self-concept develop a sense of inconfidence in oneself to have desirable sexual relationships, which causes low self-efficacy in sexual relationships [37, 38]. Moreover, Assarzadeh et al. [39] found sexual self-confidence to promote sexual self-efficacy.

The present study women believed that their ability to have sexual relationships had decreased and that they were no longer capable of receiving and providing sexual pleasure, providing proper physical conditions for sexual relationships and solving sexual problems as before. The debilitating nature and psychophysical complications of the disease cause inability in these women to enjoy a desirable sexual life and cope with the sexual problems arising from the disease [38]. In fact, believing in inability in sexual relationships causes a sense of ineffectiveness and consequently deteriorates sexual self-efficacy [12, 32, 38]. A study by Fraser [40] on 550 women with MS in the US suggested negative correlations between disabilities and self-efficacy. In addition, the results of a study showed that self-efficacy is positively related to problem-solving and the adoption of coping strategies for different disease conditions in patients with MS [41]. Given the high prevalence of sexual problems in women with MS, sexual self-efficacy and the ability to tackle the effective problems in sexual life appear to improve the quality of sexual and marital life in these patients [38].

Generally, preserving the family is highly important for most Iranian women, and thus they wish to have a favorable sexual and spousal role in order to experience quality and strong marital life [42]. Having a proper motherhood role and attending to household matters and children are also very important for most Iranian women. Given that most patients with MS are young women at the peak of their sexual activity and family and social responsibilities, disability caused by the disease, may harm proper performance of their social roles such as sexual; spousal; and motherhood roles, cause marital dissatisfaction and feelings of weakness; inadequacy; low self-esteem; anxiety; stress, and fear of rejection by their husbands and families [10, 12, 38]. On the other hand, fear of social stigma due to the disease and resulting disability makes these women withdraw from society and weak in social interactions. Fearing loss of their social position, many of them attempt to hide their disease and experience further stress [13, 43, 44].

Therefore, certain interventions are recommended to be integrated with the process of treating these patients to physical and psychological rehabilitation and improve self-efficacy and self-esteem of these patients.

The strengths of the present study include interviewing key informants in addition to women with MS. The study limitations included the selection of samples from only married women with MS given the sociocultural conditions in Iran, which prohibits single, divorced and widowed females from having sex. Although the study samples were collected from only one center (Iran MS Society), it is a rehabilitation referral center in Tehran, Iran, to which the majority of patients with MS present to receive free-of-charge services.

Conclusion

This study highlighted the concern that MS and related complications can significantly and negatively lower the quality and quantity of sexual relationships in women with MS. These women neglect themselves in their sexual life, and experience low sexual self-efficacy.

Given that sexual problems of women with MS are multidimensional, and most Iranian women feel ashamed and embarrassed about expressing their sexual problems, it is recommended that sexual counseling centers with a trained team provide all MS-women and their husbands with need-based and culture-based sexual education and counseling as an essential part of their routine care during their treatment course. Furthermore, rehabilitation and psychological programs focused on improving sexual relationships are recommended, because improving these women's physical and psychological abilities can significantly improve their sexual relationships. Therefore, designing and implementing comprehensive and multidisciplinary interventions and training program to address all the physical and psychosocial factors affecting sexual life in the patients appears to play a key role in promoting their sexual life and improving their sexual quality of life.

Implications

The results of this study showed the sexual life of women with MS and their experiences and perceptions with their sexual life and suggested many difficulties facing Iranian women with MS in their sexual life. The present findings can help the treatment team to notice the importance of sexual life in these patients and lay plans for providing comprehensive sexual services in treatment process. Moreover, given that the present study recruited women with MS living in Tehran, it is possible that women from other parts of Iran may share different experiences. Hence, the present study could initiate further studies in other cities with different social and cultural backgrounds.