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RESEARCH ARTICLE
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Citation: Veyrié A, Netter A, Carcopino X, Miquel L,
Agostini A, Courbiere B (2022) Endometriosis and
pregnancy: The illusion of recovery. PLoS ONE
17(11): e0272828. https://doi.org/10.1371/journal.
pone.0272828
Editor: Diego Raimondo, Dipartimento di Scienze
Mediche e Chirugiche (DIMEC), Orsola Hospital,
ITALY
Received: July 26, 2022
Accepted: October 20, 2022
Published: November 3, 2022
Peer Review History: PLOS recognizes the
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https://doi.org/10.1371/journal.pone.0272828
Copyright: © 2022 Veyrié et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Data Availability Statement: We uploaded the
minimal dataset, and it is now fully available:
https://doi.org/10.6084/m9.figshare.21354333.
PLOS ONE | https://doi.org/10.1371/journal.pone.0272828 November 3, 2022
Endometriosis and pregnancy: The illusion of
recovery
Axel Veyrié1☯, Antoine Netter ID1,2☯*, Xavier Carcopino1,2, Laura Miquel ID1,
Aubert Agostini1, Blandine Courbiere1,2
1 Department of Gynecology and Obstetrics, AP-HM, Assistance Publique-Hôpitaux de Marseille, Marseille,
France, 2 IMBE, Aix Marseille Univ, Avignon Univ, CNRS, IRD, Marseille, France
☯ These authors contributed equally to this work.
* antoine.netter@gmail.com
Abstract
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 achieved by
in-vitro fertilization (IVF). We conducted a qualitative monocentric study between May and
November 2020. Semi-structured interviews were undertaken with infertile women with
deep infiltrating endometriosis who achieved a first pregnancy by IVF and delivered at least
two years prior to the interview. Data analysis was performed using an inductive approach
to identify recurrent categories and themes. Fifteen interviews were conducted to reach
data saturation. Pregnancy appeared to improve all components of the experience of endo-
metriosis that were explored (psychological and physical well-being, social relationships,
professional life, and sexuality). This improvement was only temporary and all symptoms
and negative aspects of the women’s quality of life reappeared after a variable period.
1. Introduction
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 pro-
gresses 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 trans-
formation, 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 profes-
sionals 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 dur-
ing 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 symp-
tom-free during and immediately after delivery, 84% had a recurrence of moderate or severe
1 / 10
PLOS ONE
Funding: The author(s) received no specific
funding for this work.
Competing interests: The authors have declared
that no competing interests exist.
PLOS ONE | https://doi.org/10.1371/journal.pone.0272828 November 3, 2022
Endometriosis and pregnancy
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. Never-
theless, 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).
2. Method
We conducted a single-center qualitative study between May and November 2020 at the assis-
ted-reproduction center of La Conception Hospital (Marseille, France). The study had previ-
ously 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 par-
ticipants 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, dur-
ing 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.
3. Results
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 per-
son, one by videoconference, and 12 by telephone. The results of the interviews are presented
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PLOS ONE Endometriosis and pregnancy

Table 1. Main characteristics of the participants.

Participants Age at Time between Surgery for Hospitalization Pathology Resumption of Recurrence of Recurrence of
delivery delivery and endometriosis during pregnancy during hormonal treatment pain less than one pain more than
(years) interview before pregnancy pregnancy less than one year year after one year after
(years) after childbirth delivery delivery
P1 36 4 Yes No No No No Yes
P2 29 4 Yes Yes Placenta Yes No Yes
Prævia
P3 25 3 Yes No No No No No
P4 36 8 Yes Yes IUGR No Yes Yes
P5 28 9 Yes Yes TPL No No No
P6 37 7 Yes No No No No Yes
P7 33 6 Yes No Placenta Yes Yes Yes
Prævia
+ IUGR
P8 38 7 Yes Yes Placenta Yes No Yes
Prævia
P9 33 5 Yes Yes Gestational No No Yes
diabetes
P10 28 7 Yes Yes TPL No No Yes
P11 34 4 Yes No No No No No
P12 32 7 No No No No No Yes
P13 28 7 Yes Yes IUGR No No Yes
P14 27 2 Yes No No No No Yes
P15 40 3 Yes Yes IUGR No Yes Yes

IUGR = Intrauterine growth restriction, TPL = threatened preterm labor

https://doi.org/10.1371/journal.pone.0272828.t001

in three sections: 1) endometriosis and IVF management; 2) disappearance of symptoms dur-

ing pregnancy and immediately after pregnancy; and 3) recurrence of symptoms.

3.1. Experience of endometriosis during IVF management

3.1.1. Discontinuation of hormonal treatment. Invariably, discontinuation of contra-
ception 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. “

3.1.2. IVF, endometriosis, and social and professional life. During the interviews, IVF
treatment was often described as a social and professional hindrance in addition to the symp-
toms 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.”

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PLOS ONE Endometriosis and pregnancy

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.”

3.1.3. Infertility, dyspareunia, and sexual life. 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.’”

3.2. Experience of symptom resolution during pregnancy and immediately

after pregnancy
3.2.1. Lull and hope for recovery. Invariably, the women described the period of preg-
nancy as a period of lull in the symptoms of endometriosis, leading to a very positive experi-
ence 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 preg-
nancy 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 endome-
triosis 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.”

3.2.2. Social and professional normalization. Women often reported that the improve-
ment 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 irregu-
lar periods, I avoided sports. It was the discovery that I was able to run 10 km.”

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PLOS ONE Endometriosis and pregnancy

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. Sev-
eral 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.”

3.2.3. Calmness within the couple. Consistently, patients described a marked improve-
ment 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.”

3.3. Experience of the recurrence of symptoms

3.3.1. The resurgence of symptoms. 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 disap-
pointment 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 symp-
toms or denial of the disease during the lull period. The regret of not having resumed hor-
monal 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.”

3.3.2. Social and professional disillusionment. 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 renunci-
ation of projects that had been developed immediately after the pregnancy. Only the few

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PLOS ONE Endometriosis and pregnancy

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.”

3.3.3. Lassitude and inconsistent partner support. More than half of the women inter-
viewed 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’ weari-
ness 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.”

4. Discussion
To our knowledge, this article represents the first qualitative study ever conducted about the
feelings and experiences of infertile patients with endometriosis during and after a first preg-
nancy obtained by IVF. Inductive analysis of the interviews enabled us to construct a chrono-
logical scheme of the experience of the disease during this period. Our results suggest that
during pregnancy and for a variable length of time after pregnancy, women have the momen-
tary illusion of being cured of endometriosis. This illusion is explained in part by the lull in
painful symptoms, but it is also maintained by the medical discourse, which frames pregnancy
as a treatment for endometriosis. This cognitive phenomenon sometimes extends to forgetting
or denying the disease, which, according to the women interviewed for this study, justifies the
absence of resumption of hormonal treatment after childbirth, despite the advice of health pro-
fessionals. After a variable length of time, the resurgence of symptoms is experienced very neg-
atively by the women: first as a disappointment or disillusionment with the prospect of a cure,
then by resignation and a renunciation of plans for a normal life.
Our study focuses on infertile women who have undergone IVF and achieved pregnancy.
Some data in the literature have already established that endometriosis and endometriosis-
induced infertility have a negative impact on quality of life [17, 18]. The qualitative data we
present allow us to explore the changes that take place precisely when infertility treatments
have worked, and patients are pregnant. Our results are indeed in favor of an improvement
during the pregnancy following IVF but suggest that this improvement is only temporary.
Only quantitative data based on questionnaires should clarify whether quality of life is durably
improved after pregnancy, but our results do not seem to suggest this. The interviews deliber-
ately address very little about surgical treatment, even though most of our patients had under-
gone surgery prior to IVF according to an integrated approach already described in the
literature [19, 20]. It is likely that this integrated approach for endometriosis-associated infer-
tility has an impact that should be explored to determine which of surgery or IVF has the great-
est influence on patient experience. Several of our results also showed how these changes in

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PLOS ONE Endometriosis and pregnancy

patients’ experiences make it difficult to resume hormone treatment after pregnancy. Several
data in the literature suggest that this treatment is important to reduce the symptoms and pro-
gression of endometriosis [5, 21]. Our study highlights the need to better inform patients of
the importance of this medical treatment after childbirth even in the absence of symptoms.
In 2018, Leeners et al. conducted a systematic review of the literature regarding the effect of
pregnancy on endometriosis [13]. Although the data were derived from a limited number of
studies, some of which were not recent and all of which were retrospective and involved a
small number of patients, it appears that the majority of lesions decrease in size during preg-
nancy. The authors nevertheless highlight that the evolution of endometriosis lesions is unpre-
dictable, with progression in some women, and that very little research has been conducted on
the long-term evolution after pregnancy. Millischer et al. conducted a retrospective study in
2019 involving 21 patients (67 deep endometriosis lesions) who had never undergone surgery
and who had an MRI before and after pregnancy (with an interval of 20 ± 8 months between
the two MRIs) [6]. The authors report a decrease in the mean volume of all lesions. Another
retrospective study conducted by our team in 2019 on patients with rectal endometriosis
lesions, eight of whom had a pregnancy, reported more mixed results for a longer duration
between MRIs (51 ± 26 months), with regression noted for only one patient [5].
From a histological point of view, although there is a rationale for regression of endometri-
osis lesions during pregnancy due to decidualization of the ectopic endometrium and atrophy
of the epithelium covering the lesions, the scientific literature is rather in favor of an inhomo-
geneous response of the lesions [13, 22]. Indeed, decidualization is an inconstant phenomenon
and is initially responsible for an increase in lesion size before being associated with regression
[23–25]. Similarly, depending on the histological studies, atrophy, fibrosis or necrosis are
inconsistently described, and some cases of cell proliferation have also been reported [26–28].
Concerning the evolution of the symptomatology, the data are even more rare and appear
to suggest a lull in symptoms during pregnancy [7, 11, 29–31]. The best data concerning the
evolution of symptoms after pregnancy are reported by a recent retrospective study by Alber-
ico et al. involving 131 women interviewed before and two years after pregnancy [14]. The
authors’ findings favor an overall improvement of symptoms during the long term, but never-
theless indicate the persistence or the reappearance of at least one symptom of moderate or
severe intensity in 84% of participants. At the same time, the authors noted a modest improve-
ment in quality of life and no improvement in sexual function.
Our study reports qualitative data that are broadly transferable to these findings and thus
contribute to the current trend relativizing the impact of pregnancy on the long-term outcome
of patients [12]. As the majority of the women who participated in our study reported, the
myth of pregnancy as a treatment or principle of management of endometriosis still appears to
be largely supported among health professionals treating endometriosis. Not only is there no
data in the scientific literature to support the claim that pregnancy is a sustainable way of
improving the life and health of women with endometriosis, but this false claim appears to
have a negative impact. In fact, according to participants’ comments reported in our study,
this assertion appears to be the source of false hope for women, resulting in a delay in resump-
tion of hormonal treatment for endometriosis and a greatly degraded experience of the reap-
pearance of symptoms. There is no doubt that pregnancy is an unavoidable and central issue
in the care plan of patients with endometriosis. These women must be informed early on of
the risk of infertility and must be supported in their pregnancy planning. We agree with Bri-
gitte Leeners and Cynthia M. Farquhar in the notion that the decision to become pregnant
should not be influenced by the positive or negative effect on the evolution of endometriosis
[12].

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PLOS ONE Endometriosis and pregnancy

5. Conclusion
The results of this qualitative study suggest that a first pregnancy obtained by IVF gives endo-
metriosis 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.

Supporting information
S1 Dataset.
(XLSX)

Author Contributions
Conceptualization: Axel Veyrié, Antoine Netter, Blandine Courbiere.
Formal analysis: Antoine Netter.
Investigation: Axel Veyrié, Antoine Netter.
Methodology: Antoine Netter, Blandine Courbiere.
Project administration: Antoine Netter.
Supervision: Antoine Netter, Xavier Carcopino, Laura Miquel, Aubert Agostini, Blandine
Courbiere.
Validation: Antoine Netter, Blandine Courbiere.
Writing – original draft: Antoine Netter.
Writing – review & editing: Antoine Netter, Blandine Courbiere.

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