RETRACTED: Endometriosis and pregnancy: The illusion of recovery

Although endometriosis affects approximately 10% of women of childbearing age, its natural history is still debated [ 1 , 2 ]. It is commonly accepted that endometriosis is a disease that progresses inconsistently and slowly [ 3 , 4 ]. Recent studies, in particular imaging studies, suggest that continuous amenorrhea induced by hormonal treatments can limit the progression of deep endometriosis [ 5 ]. This also appears to be verified for amenorrhea due to pregnancy [ 5 – 8 ]. The underlying pathophysiological mechanisms are not entirely clear, but could involve the hormonal environment, in particular the increase in progesterone levels leading to luteal transformation, decidualization, and atrophy of the ectopic endometrium [ 9 ]. The interruption of retrograde menstruation has also been suggested as a pathophysiological explanation [ 10 , 11 ]. The supposedly positive impact of pregnancy on endometriosis lesions has led health professionals to recommend pregnancy as a treatment for endometriosis for almost a century [ 12 , 13 ]. Paradoxically, there is little research investigating the evolution of painful symptoms during and after pregnancy [ 13 ]. In 2018, Alberico et al. conducted a retrospective study involving 131 women with endometriosis. The authors found that while the women were indeed symptom-free during and immediately after delivery, 84% had a recurrence of moderate or severe pain symptomatology two years after delivery [ 14 ]. These quantitative data, although modest, appear to contradict the age-old myth of pregnancy as a treatment for endometriosis. Nevertheless, there are various reasons to suggest that pregnancy remains a uniquely special period for women with endometriosis: first, because of the difficulty in achieving pregnancy, since endometriosis is often associated with infertility; second, because of the lull in the painful symptoms; and finally, because of the complications of pregnancy, which are more frequent in women with endometriosis [ 15 ]. The objective of this study was to investigate the feelings and experiences of infertile women with deep infiltrating endometriosis during and after a first pregnancy obtained by in-vitro fertilization (IVF).

Data saturation was achieved after 15 interviews. The women who agreed to participate were on average 37 ± 5 years of age at the time of the interview and had given birth on average 6 ± 2 years earlier ( Table 1 ). Of these women, 13 of 15 had had laparoscopic endometriosis surgery before pregnancy. All patients had at least one painful symptom (dysmenorrhea, dyspareunia, or chronic pelvic pain) immediately before pregnancy. Two interviews were conducted in person, one by videoconference, and 12 by telephone. The results of the interviews are presented in three sections: 1) endometriosis and IVF management; 2) disappearance of symptoms during pregnancy and immediately after pregnancy; and 3) recurrence of symptoms. IUGR = Intrauterine growth restriction, TPL = threatened preterm labor Invariably, discontinuation of contraception at the time of planned pregnancy was accompanied by an increase in pain. Several women described the ambivalence between the desire for pregnancy and the desire to resume hormonal treatment to combat painful symptoms. Pain was often identified as the main factor precipitating the abandonment of attempting to conceive naturally. Participant 12 : “ Going back on the pill to stop the pain was my big question because there was always the desire to have a child , and at the same time you put yourself on the pill … Finally the hope of getting there naturally is no longer possible . “ During the interviews, IVF treatment was often described as a social and professional hindrance in addition to the symptoms of endometriosis. Some women who already had to justify regular absenteeism from work because of painful symptoms described the fear of being dismissed or sidelined during their IVF course. Participant 10: “My employer was making remarks to me , ‘still absent’, ‘ah you’re extending the time off work…’ yet it was a woman.” Some women also reported almost complete avoidance of social situations to avoid having to justify their absence. Participant 7: “This disease depletes the number of true friends ( … ) It is impossible to warn people that because of endometriosis you may have to cancel everything at the last minute. It’s very difficult to meet new people, I was always afraid I wouldn’t feel well, thinking ‘what am I going to say to them if I don’t feel well in the middle of a meal?’ It restricts everything.” Many women described sexuality as a taboo subject within the couple because of dyspareunia. The pregnancy project was also often described as destabilizing for the couple’s equilibrium, with resumption and often planning of intercourse despite the pain. The women described their own anticipatory anxiety and the guilt of their partners. Conversely, at the time of the IVF treatment, the partner’s involvement in the attempt at pregnancy was experienced as an element that strengthened the couple’s cohesion. Participant 5: “Sometimes my husband would say to me ‘I don’t come to you because I don’t know if you’re going to be okay , I’m afraid I’ll hurt you, I’m afraid I’ll be intrusive, I’m afraid you won’t feel like it anymore.’” Invariably, the women described the period of pregnancy as a period of lull in the symptoms of endometriosis, leading to a very positive experience despite the occurrence of pregnancy complications for more than half of the participants. This lull was often interpreted as a cure. Most of the women explained this belief as having been encouraged by a health professional or by information from the Internet presenting pregnancy as a treatment for endometriosis. This feeling of healing persisted after childbirth, and the women interviewed often said that this was justification for not taking hormone treatment. In addition, still following the idea of a cure, some patients said that they had persisted for a long time in attempting to achieve a second spontaneous pregnancy when the first had required IVF. Participant 13 : “ The symptoms did not return for three years; I was at peace . I had no more pain . I told myself that I was cured . It worked; it was great . I didn’t feel the effects of endometriosis anymore ( … )” Participant 1 : “ I think after my pregnancy , looking back , I should have stayed on the pill . We had hope of having another child . I didn’t think the endometriosis would come back . ” Women often reported that the improvement in symptoms during and immediately after pregnancy allowed them to resume activities that promoted a normalization of social life. Participant 13 : “ Yes , I took up sport . ( … ) Since high school , because of my painful and irregular periods , I avoided sports . It was the discovery that I was able to run 10 km . ” In addition, the new status of pregnant woman or mother was described by the patients as an opportunity to conform to the norm. The entourage that had been distanced during the IVF process was, on the contrary, very present during the pregnancy and after the birth. Several patients also described that the period immediately after their maternity leave had been marked by new professional aspirations, either by the construction of more ambitious projects than before or by the idea of finding a professional field that was more benevolent towards their illness. Participant 9: “After I changed jobs . I was fully honest from the day I was hired. The employer welcomed me with open arms (…). Talking about it paid off.” Consistently, patients described a marked improvement in interactions with their partners during and immediately after pregnancy. Several explanations were given: on the one hand, the disappearance of painful symptoms and, on the other hand, the feeling of having won a victory for both of them and the relief of achieving a pregnancy following the IVF procedure. On the other hand, most of the women described a decline in their sexuality, often attributed to the disappearance of spontaneity in intercourse following the infertility process. Participant 10 : “ the IVF treatments destroyed certain things , the quality of sexual relations in particular , but strengthened other things in our couple . ” The women consistently described that, after a period that varied in length but generally exceeded one year, their symptoms had gradually reappeared. The most frequently reported comments were regarding marked feelings of disappointment or disillusionment, which were related to the conviction that the pregnancy had allowed endometriosis to be cured definitively. The women described this period of gradual reappearance of symptoms very negatively. Several of them mentioned forgetting of the symptoms or denial of the disease during the lull period. The regret of not having resumed hormonal treatment after the pregnancy, often despite the advice of health professionals, was also expressed. Participant 6 : “ You hope to have relief , but the relief for me was short-lived . You think maybe it will come back , but you forgot how bad the pain was . In fact , the pain before the pregnancy was more acceptable . When the pain became more intense again , ( … ) I even discussed a hysterectomy . ” Most of the women described a return to almost the same social situation as before the pregnancy, often with social avoidance. Some women verbalized the difficulties they had encountered in making their family and friends, who thought they were cured, understand the recurrence of painful symptoms. Participant 2 : “ It’s been forgotten , clearly we don’t talk about it at all . Endometriosis is still associated with infertility , and I have had children , so for them it means that I am cured . ” The women also most often described a feeling of professional limitation, with the renunciation of projects that had been developed immediately after the pregnancy. Only the few patients who specifically pursued a reorientation towards an environment sympathetic to their illness reported an improvement in their professional life. Participant 6 : “ I later tried to go back to work full time but it was impossible . It definitely affected my work life . ” More than half of the women interviewed mentioned a deterioration in their relationship with their partner some time after the birth when the pain was on the rise. Often, women said that they had felt their partners’ weariness of the symptoms and sometimes their disinterest or disinvestment in their illness. Although only a few women had separated from their partners after delivery, the majority had already discussed the subject of divorce or separation. Participant 7 : “ My husband has gotten used to seeing me in pain . ( … ) . He has lost all his empathy; he has become impervious to pain ( … ) . I blamed him and I still blame him but it’s human ( … ) he tells me it’s happened so many times . ” Participant 1 : “ The suffering , the pain , the difficulty in managing relationships . My spouse can’t understand . Another couple might have gotten divorced . ”

The results of this qualitative study suggest that a first pregnancy obtained by IVF gives endometriosis patients the temporary illusion of a cure. The widespread myth that a pregnancy will lead to permanent improvement of endometriosis symptoms has deleterious consequences for women’s experiences at the time of symptom recurrence. More data are needed to understand the exact influence of pregnancy on the long-term evolution of the symptomatology.

We conducted a single-center qualitative study between May and November 2020 at the assisted-reproduction center of La Conception Hospital (Marseille, France). The study had previously received approval from the ethics committee of the University of Aix-Marseille (2020-07-05-07). All participants gave written consent after having been thoroughly informed orally and in writing about the terms of the study. The inclusion criteria were: age between 18 and 43 years; deep infiltrating endometriosis suspected on pelvic magnetic resonance imaging (MRI) or diagnosed surgically (stages III and IV of the revised American Society for Reproductive Medicine (rASRM) classification [ 16 ]); IVF management with achievement of a first pregnancy and birth of a child who is still alive and healthy; and presence of at least one symptom immediately before IVF (dysmenorrhea, dyspareunia, or chronic pelvic pain). Exclusion criteria were: delivery less than two years or more than 10 years before the start of the study; no follow-up for more than one year in our center; poor understanding of French; or refusal to participate in the study. Individual, in-depth, semi-structured interviews were conducted in person, by telephone, or by videoconference by a single investigator (A.V.). Signed consent was requested from participants before the interview began. The expected duration of the interviews announced to the participants was 30 minutes to one hour. A semi-structured interview guide composed of open-ended questions concerning the experience of endometriosis during IVF treatment, during pregnancy, and after delivery enabled the investigator to conduct each conversation in a semi-structured manner. Each interview was recorded and immediately transcribed verbatim , removing any information that might identify the participant. The recording was then deleted. The data collected was coded by conducting a micro-analysis of each interview and was analyzed using an inductive approach based on a thematic analysis specific to qualitative research methodology. The coding data were compared and analyzed throughout the study in order to enrich the interview guide as needed. The study was stopped when no new data emerged during two consecutive interviews (indicating that data saturation had been achieved). The codes were then grouped and organized to create categories, which were then grouped into themes.

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