Keywords : endometriosis disease, diagnostic wandering, representations, coping strategies, quality of life, pain, healthcare.
This research work focuses on endometriosis disease. In recent years, many studies have been carried out on this disease in order to promote its recognition and better management.
Endometriosis is a gynecological disorder affecting 5-10 percent of women of childbearing age (Bourdel and al., 2020). Endometriosis affects the endometrial portion of the uterus. During menstruation, endometrial cells or fragments of the mucosa uterine[1] will implant and proliferate to other organs under the influence of hormonal stimulation. These cells can then affect other neighbouring organs such as the peritoneum[2], ovaries[3], fallopian tubes[4], intestine[5], bladder[6], ureter[7] or diaphragm[8]. To this day, it is still difficult to identify the endometriosis physiological causes and the genesis of this pain (Qu’est ce que l’Endométriose, 2021).
In the face of attempts to raise public awareness of endometriosis disease, the lack of knowledge of the disease and the gaps in healthcare are still significant. In France, the time to make an endometriosis diagnosis varies between four and ten years, depending on the woman. Faced with this diagnostic wandering, many repercussions on the quality of life are observed, leading to physical, psychological, social and family difficulties (Leroy and al., 2016).
In addition, a difficulty in legitimizing pain has been observed. Some women report a certain reserve in sharing their pain, due to the intimate sphere that comes into play. In addition, cultural norms sometimes take importance and depending on the education received, some women do not allow themselves to express their pain, to express complaints and they are forced to live their pain in silence (Lambert, 2019). Leventhal, in 1980, explains, through the model of self-regulation, that the representations, the experience of the disease and pain come into account in the experience and management of the disease. It has been shown that in endometriosis, women note that it is more the experience of pain that contributes to mental health difficulties and emotional distress (Ferreira and al., 2010).
Thus, the disease’s representations and the difficulty of legitimizing pain, influence the health behaviors and coping strategies put in place. A study by Zarbo et al. (2017) states that in the disease, pain is the first stressor for these women. In this case, they identified that women with endometriosis used, on the one hand, positive coping strategies with the search for social support, self-management, acceptance, increased exercise and nutritional changes. On the other hand, they used “maladaptive” coping strategies, such as limiting physical activity or repressing emotions. Another study shows a relationship between quality of life and maladaptive coping strategies, such as self-criticism and social withdrawal. The participants in this study report that the positive and maladaptive strategies for coping with pain and illness were dependent on their level of quality of life and their mental health status (González-Echevarría and al., 2018).
The objective of this quantitative study is to investigate the existence of inter-individual differences in the time of elaboration of the diagnosis, in order to observe the impact in the elaboration of the representations which would be operationalized by differences in terms of coping strategies and healthcare and consequently would act on the quality of life of the patients. To evaluate this, a questionnaire was circulated from May to October 2021 to 453 members of the EndoFrance association through Limesurvey, determining the characteristics of the participants and their care pathway. Then evaluating three areas : quality of life, with the SF-12 (Short-Form 12 Health Survey) and the EHP-5 (Endometriosis Health Profile-5) questionnaires, the disease representations with the IPQ-R (The Revised Illness Perception Questionnaire), and the coping strategies used with the Brief COPE questionnaire.
This study is intended for individuals with a female identity, with a functional female genital system and a reproductive function, excluding postmenopausal women who no longer have current menstrual cycles. With an established diagnosis, aged between 18 and 55, and living in France.
The first results of this study show on the one hand : a very heterogeneous diagnosis times, differences in the experience of symptoms and pain intensity, a heterogeneity in the appearance of the first symptoms of endometriosis (very late for some women), a clear link between pain and quality of life. Finally, the greater the pain and symptoms, the worse the quality of life.
[1] Muqueuse utérine ; [2] Péritoine ; [3] Ovaires ; [4] Trompes utérines ou de Fallope ; [5] Intestin ; [6] Vessie ; [7] Urètre ; [8] Diaphragme
Words I have learned :
- Childbearing age : en âge de procréer
- The lack of : un manque de
- Leading to : entraînant, conduisant
- Comes into play : entre en jeu
- Social withdrawal : retrait social
- Care pathway : parcours de soin
References
Bourdel, N., Matsusakï, S., Roman, H., Lenglet, Y., Botchorischvili, R., Mage, G., & Canis, M. (2006). Endométriose et adolescente. Gynécologie Obstétrique & Fertilité, 34(9), 727-734. https://doi.org/10.1016/j.gyobfe.2006.07.008
Ferreira, C., Gay, M.-C., Regnier-Aeberhard, F., & Bricaire, F. (2010). Les représentations de la maladie et des effets secondaires du traitement antirétroviral comme déterminants de l’observance chez les patients VIH. Annales Médico-psychologiques, revue psychiatrique, 168(1), 25-33. https://doi.org/10.1016/j.amp.2007.09.005
González-Echevarría, A. M., Rosario, E., Acevedo, S., & Flores, I. (2018). Impact of coping strategies on quality of life of adolescents and young women with endometriosis. Journal of Psychosomatic Obstetrics & Gynecology, 40(2), 138-145. https://doi.org/10.1080/0167482x.2018.1450384
Lambert, C. (2019). Face à l’imprévisible de l’invisible: Une approche corporo-sociéto-psychologique du vécu de la femme atteinte d’endométriose [mémoire de maîtrise, Université de Lausanne].
Leroy, A., Azaïs, H., Garabedian, C., Bregegere, S., Rubod, C., & Collier, F. (2016). Psychologie et sexologie : une approche essentielle, du diagnostic à la prise en charge globale de l’endométriose. Gynécologie Obstétrique & Fertilité, 44(6), 363-367. https://doi.org/10.1016/j.gyobfe.2016.03.017
Qu’est ce que l’Endométriose. (2021, March 26). Association EndoFrance. Retrieved on April 30, 2021, from https://www.endofrance.org/la-maladie-endometriose/qu-est-ce-que-l-+endometriose/
Zarbo, C., Brugnera, A., Frigerio, L., Malandrino, C., Rabboni, M., Bondi, E., & Compare, A. (2017). Behavioral, cognitive, and emotional coping strategies of women with endometriosis : a critical narrative review. Archives of Women’s Mental Health, 21(1), 1-13. https://doi.org/10.1007/s00737-017-0779-9