Association Between Self-Perception of Genital Image in Patients Diagnosed with Endometriosis and Chronic Pelvic Pain and Healthy Women

Introduction: endometriosis is a pathology that carries a high social stigma and a factor in the quality of life of the sufferer. Its etiology is unknown and treatment includes surgical and conservative measures, including hormonal suppression.

Objectives: the main objective of the study is to demonstrate a distortion of the genital image in patients diagnosed with endometriosis with chronic pelvic pain, the secondary objective is to associate the distortion of the genital image with the quality of life.

Material and Methods: a cross-sectional study of cases (women with endometriosis and CPD) and controls (healthy women) were carried out with a total of 284 women over 18 years of age.

Results: statistically significant differences were obtained in favor of a lower perception of genital self-image and quality of life (for the physical component), in women with endometriosis and CPD, compared to healthy women.

Conclusion: more studies with medium-long term follow-up are needed to be able to make a correct understanding of the process and offer an adequate multidisciplinary approach, aiming at the reconciliation of the idea that the body and the mind are one.

Chronic pelvic pain (CPP) is defined as pain located in the lower abdomen, pelvis or pelvic structures, lasting more than 3-6 months, which can manifest itself continuously or intermittently. There are several causes that can produce it, among them we highlight endometriosis, a benign estrogen-dependent chronic inflammatory disease, which affects women during their reproductive stage and is characterized by the proliferation of glands and endometrial stroma outside the uterine cavity [1,2]. It can become a debilitating and disabling disease, with ectopic lesions commonly located in pelvic organs and/or in the peritoneum, although sometimes they can also be found in other parts of the body. Currently, there is a 50-60% prevalence in women with CPD and endometriosis.

Many chronic pelvic pain syndromes (CPPS) are associated with a number of concurrent negative psychological, behavioral, and sexual consequences that need to be described and assessed. Many of these biopsychosocial consequences are common to other persistent pain problems, altering patients' quality of life. [3]. Only a better understanding of the process will allow the establishment of multidisciplinary preventive, diagnostic and therapeutic strategies for this type of patients [4]. The pain experiences suffered by patients generate a distorted perception of the body, resulting in body dissatisfaction [5]. Other research suggests that a positive female genital self-perception is associated with increased sexual desire, a parameter of overall sexual experience, which led to the development of the Female Genital Self-Image Scale (FGSIS), which found that, in women with dyspareunia, a negative genital self-image was associated with negative sexual functioning [6].

In addition, we found studies showing that the appreciation of body functionality is also significantly lower in people with endometriosis than in those without endometriosis, thus determining that endometriosis-related pelvic pain correlates negatively with satisfaction with body appearance [6]. Therefore, it is important to understand how individuals perceive their body and how they cope with pain experiences, as it has been observed that a more positive perception of their body image coincides with a better acceptance of their chronic pain [5].

However, more research is needed on this topic, and that is why we considered it necessary to study the impact of the diagnosis of endometriosis and CPD on the perception of genital self-image and quality of life of these women.

Type of Research

This is an observational, descriptive and cross-sectional epidemiological study.

Target Population

The target population consisted of women over 18 years of age with endometriosis and women over 18 years of age without diagnosed disease.

Sample Size

To achieve a power of 80%, detecting a mean effect size (d ≥ 0.5), with a significance of p < 0>

Inclusion and Exclusion Criteria

Patient selection has involved the following inclusion criteria: women over the age of majority, clinically diagnosed with endometriosis and have CPD with a score ≥6 on the Mohedo CCP-Q questionnaire. As exclusion criteria, the following were determined: women not residing in Spain, with a diagnosis of adenomyosis, abdominal surgery, oncological processes.

Methods of Data Collection

For the collection of information an online questionnaire was created using the Google Forms tool. The participants were able to access the link to the form through social networks. The survey took approximately 20 minutes to complete. No incentives or similar were offered. Participants completed the questionnaire between September and November 2023.

The first page consisted of a letter of introduction to the researchers explaining what the questionnaire consisted of and providing contact information in case any doubts arose during its completion. In addition, they were asked for their authorization to participate in the study.

The questionnaire consisted of the following parts:

Sociodemographic Variables: Sociodemographic data were collected from the participants: age, educational level (ESO, vocational training or university studies), marital status (single, with a partner, married or divorced), menopause, pregnancy, oncological processes and previous surgeries.

Chronic Pelvic Pain Scale: The variables obtained have included CPPD using the CPPQ- Mohedo questionnaire. This scale, validated in Spanish, is based on a previous study for greater discrimination between patients with and without CPP symptoms. This tool consists of 7 items covering two dimensions: pain and quality of life. It is a quantitative scale with an internal consistency of Cronbach's alpha = 0.75 and a total score of 27. If the score is greater than or equal to 6, the subject has CPD. A visual analog scale (VAS), which ranged from 0 to 10, was used for pain assessment.

Genital Self-Image Scale: Genital self-image has been obtained using the FGSIS scale, which is translated from English and validated in Spanish. The FGSIS quantitatively assesses women's feelings and beliefs about their genitalia and perceived genital self-image based on 4 themes: odor, appearance, sexual function, and pride/acceptance. It consists of 6 items, each item is answered on a Likert scale of 1- 4, with 1 being completely disagree and 4 being completely agree. The sum of the total will have a score between 7- 24. The lowest score corresponds to a low perception of genital self- image. This questionnaire had a test-retest reliability with an interclass correlation 0.86, P< 0>

Quality of Life Scale: The quality of life of women diagnosed with endometriosis and with CPD has been measured through the SF-12 questionnaire, which consists of 12 items assessing 8 aspects of health-related quality of life (HRQoL): physical dimension, mental dimension, physical function, physical role, bodily pain, general health, vitality, emotional role, social function, mental health. The response options have formed Likert-type scales (where the number of options has varied from three to six points, depending on the item), which have evaluated the intensity and/or frequency of people's health status. The score has been between 0 and 100, where the higher score has implied a better health-related quality of life. Research has verified that this instrument is a valid and reliable measure, finding internal consistency estimates above 0.70 and significant correlations between the versions of the scale.

Ethical Aspects

Before starting the research, ethical authorization was obtained from the Ethics Committee of Malaga, in accordance with the ethical precepts formulated in SAS Order 3470/2009 and the Declaration of Helsinki of the World Medical Association on ethical principles for medical research on human beings and its subsequent revisions. Likewise, the researchers have committed to compliance with the Organic Law 3/2018, of December 5, on the Protection of Personal Data and guarantee of digital rights. The processing, communication and transfer of personal data of all participants have complied with the provisions of this law.

Data Analysis

Data have been collected in the Microsoft Excel 2022 database to be subsequently analyzed using the IBM SPSS version 25.0 statistical package. A descriptive analysis of the variables included in the study was performed. Qualitative or categorical variables were summarized using absolute frequencies and relative percentages. Quantitative or numerical variables were expressed using summary measures: mean and standard deviation. The Chi-square test was used to determine the association between two independent qualitative variables. In cases in which this test could not be used because values greater than 5 were not obtained, Fisher's exact test was used. The normality of the dependent quantitative variables was determined using the Kolmogorov-Smirnov (K-S) test, obtaining a normal distribution when the value obtained was p- value > 0.05. To determine the association between a dichotomous qualitative variable and a quantitative variable with a parametric distribution (K-S), the student’s t test for independent samples was used. When the quantitative variable violated the normality assumption (K-S), the Mann Whitney U test was used. To determine the association between a polytomous qualitative variable and a quantitative variable with a parametric distribution (K-S), the ANOVA test was used and when the variable violated the normality assumption (K-S), the Kruskal Wallis test was used. The level of statistical significance considered in all cases was p<0>

First, the results of the CPPQ-Mohedo, FGSIS and SF-12 questionnaires were analyzed according to the presence of endometriosis. Then, the results of the FGSIS and SF-12 questionnaires according to the presence of CPD. After that, the users were classified according to the two conditions (with/without) endometriosis and (with/without) CPD. Of the four groups, participants without endometriosis and with pain were excluded for the subsequent analysis of the results because they had a small sample size (2 participants).

A total of 284 surveys were collected and, after applying the exclusion criteria, 14 surveys were discarded due to oncological processes, 42 questionnaires due to a diagnosis of adenomyosis, and 30 questionnaires due to having undergone surgery in the abdominal area, finally analyzing 198 questionnaires. As the participants were invited to complete the questionnaire online through social networks, it was not possible to analyze the response rate.

Characteristics of the Sample

The mean age of the participants was 32.81 ± 9.132 years and their academic training was mainly at university level (76.3%). Most of the participants had not reached menopause (90.9%) and were not pregnant (97.5%). Of the total, 98 (49.5%) had been diagnosed with endometriosis. On examining the sociodemographic variables in relation to the presence of endometriosis, no statistically significant differences were identified. Table 1 summarizes the sociodemographic and clinical characteristics.

Table 1: Main demographic and clinical characteristics of the population.

Table 2 shows the results of the CPPQ-Mohedo, FGSIS and SF-12 questionnaires according to the presence of endometriosis.

In the analysis of the CPPQ- Mohedo questionnaire, the average score was found to be 9.63 ± 8.44, with 56.06% of the participants experiencing CPD. Both the total score of the questionnaire and the presence of CPPD (CDPC ≥ 6) have been significantly related to endometriosis (p lessthan 0.001). Regarding the perception of genital image, the mean score obtained was 18.52±3.43. Participants with endometriosis have presented lower scores (17.79±3.38) compared to participants without the disease (19.24±3.15), and this difference has turned out to be statistically significant (p lessthan 0.05). As for the results of the SF-12 questionnaire, scores of 46.78 ± 6.42 for the physical component (PCS12) and 44.32 ± 3.76 for the mental component (MCS12) have been observed. The physical component showed a significant association (p lessthan 0.001).

Table 2: Relationship between the questionnaires CPPQ-Mohedo (CPPQ-M), FGSIS, SF-12 and the presence of endometriosis.

Table 3 shows the results of the FGSIS and SF-12 questionnaires according to the presence of CPD. Of the group of participants, 56.06% had experienced CPD. Those patients who had experienced CPD scored lower on the genital image questionnaire (17.80 ± 3.50) compared to women without CPD (19.44 ± 2.90), which was a statistically significant difference between the two groups (p lessthan 0.001). Regarding quality of life, a significant association was observed for the physical component (p lessthan 0.001), while the mental component did not reach a significant difference.

Table 3: Relationship between the FGSIS, SF-12 questionnaires and the presence of CPD.

The results obtained in FGSIS and SF-12 have been divided according to the presence of endometriosis and CPD, and are presented in Table 4 below. An association was observed between a negative genital image and the coexistence of endometriosis and pain. However, a significant association was identified with the physical component (p lessthan 0.001) versus the mental component in the quality-of-life questionnaire.

Table 4: Relationship between the FGSIS, SF-12 questionnaires and the joint presence of endometriosis and CPD.

Guided by the research of the study by Volver C, Mills J. [7] in which the relationship between endometriosis and body image was evaluated in women living in Australia, and where statistically significant results were obtained regarding a lower body image satisfaction and a lower appreciation of body functionality in women with endometriosis compared to women without endometriosis; The aim of the present study was to assess whether there are differences in the self-perception of genital image between women diagnosed with endometriosis with CPD and healthy women living in Spain; and if so, to determine whether there is a correlation between having an altered perception of genital self-image and having greater pain intensity and worse quality of life. The first significant data obtained was the relationship between a higher score on the CPPQ-Mohedo scale for CPD and the presence of CPD in women diagnosed with endometriosis compared to healthy women. According to this study, those subjects with a score equal to or greater than 6 have been diagnosed with CPD. As a result, three groups have emerged: without endometriosis and without CPD, without endometriosis and with CPD, and with endometriosis and with CPD [4].

Within the study group, statistically relevant results were obtained with respect to genital self-perception. When analyzing this variable with the FGSIS questionnaire, a lower score was obtained in those women diagnosed with endometriosis with CPD. This finding has been supported by studies such as that of Brawn J. Central et al [8], which have shown that women with endometriosis who suffer from CPD experience changes at a central level that may be related to the increase or decrease in the volume of the cerebral area with respect to a region, which may be the genital area. In support of this statement, we have found the study of Pazmany E. et al [9], who have stated in their research that women with dyspareunia report significantly more distress about their body image and a more negative genital self-image, compared to the control group of women without pain. Furthermore, it has been found that in the study by Yamashita H. et al [10], when analyzing the perceived body distortion in people with cerebral palsy (CP) with low back pain, people with cerebral palsy without low back pain and people without cerebral palsy with low back pain; the body image appears altered in both the first group and the third, which has suggested that perceptual distortions may be more related to the presence of pain than to the presence of CP and associated postural abnormalities.

Regarding the SF-12 questionnaire for quality of life, controversial results have been obtained for the different dimensions [11]. When attending to the physical component, statistically significant results of a better quality of life have been obtained in people without endometriosis or CPD. This is in agreement with the studies of Berman L. et al. [12] and Ackard D. et al. [13] who have stated that women who have a positive body image have a better quality of life in physical and sexual aspects; and with the research of Markey CH, Dunaev J, August K. [5], who have stated that, if there is greater acceptance of pain, there is less rejection of body image and thus a better quality of life. Regarding the mental component, after having read the study by Maillé D.et al. [14] where higher values of anxiety have been obtained due to body exposure in sexual relations in women with pain, thus avoiding them, and therefore, reducing their quality of life; and the study by Gillen M, Markey C. [15], who add that body dissatisfaction is related to negative emotions and a higher percentage of depression, we also expected to find a lower quality of life in women with endometriosis and CPD, but the results obtained were similar in the 3 groups. This may be due to the fact that, as stated by Rodriguez-Marin in his research [16], quality of life is "a global evaluation of the subjective experience of life made by the person on the basis of different areas of life, fundamentally their physical, functional, psychological and social state", which results in a field of ambiguous character and very complex to evaluate due to the different conditions in which the women involved in this study find themselves.

The study had several limitations. Firstly, it did not include the stage of severity in which the woman with endometriosis was found, but it is true that, according to authors such as P. Vercellini et al [17], there is no clinically relevant association between the stage of endometriosis and the intensity of pelvic pain, since this is most likely not determined by the type and extent of endometrial tissue, but by the interaction of the endometriotic lesions with the sensory afferent nerve fibers. Secondly, after having carried out the CPPQ-Mohedo survey and obtaining very high scores on it, it was decided to add a third group, which made the data analysis of the study more difficult. Finally, taking into account the mental component in the quality of life of the participants, this study has focused on the variables of endometriosis and CPD, not considering other physical, psychological, functional and social aspects that may be affecting the quality of life of the members of the study, which shows the ambiguity and difficulty in this field/area [18,19].

The present study is the first to compare genital image perception in people with and without endometriosis. In line with the studies by Volver C, Mills J. [7] and Pazmany E. et al. [9] cited above, the findings of our research highlight the importance of genital image perception in women with endometriosis and CPD. As such, the study offers evidence to develop genital image interventions that include the treatment of self-esteem, social relationships, sexual function and/or esteem; as well as to work on the integration of women with endometriosis in current models of care, so that they can be applied in different treatment guidelines. Despite that, further work is needed based on current findings to involve people diagnosed with endometriosis. Further research on the range of endometriosis-related pain is also warranted to better clarify its relationship to genital image.

Author Contributions

N. Álvarez Boyero: Protocol Development/ Management, Data Review. P. Navarro Palomares: Protocol Development/Management, Data Analysis, Manuscript Writing/Editing. MJ. Suárez Herrera: Protocol Development or Management, Data Analysis, Manuscript.

Ethical Approval

Before starting the research, ethical authorization was obtained from the Ethics Committee of Malaga, in accordance with the ethical precepts formulated in SAS Order 3470/2009 and the Declaration of Helsinki of the World Medical Association on ethical principles for medical research on human beings and its subsequent revisions. Likewise, the researchers have committed to compliance with the Organic Law 3/2018, of December 5, on the Protection of Personal Data and guarantee of digital rights. The processing, communication and transfer of personal data of all participants have complied with the provisions of this law.

Conflict of interest

All the other authors declare no potential conflict of interest.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.