It is not uncommon that patients suffering from endometriosis are advised by their doctor to get pregnant in order to ‘’cure’’ (or at least manage the symptoms of) endometriosis. Pregnancy itself is not a cure for endometriosis, however, we often neglect the impact this advice may have on the patients’ mental health and overall experience. Discussing conception is a sensitive issue and may not be the primary concern of women seeking help for endometriosis (1). A very recent paper explored this topic, demonstrating a profound and wide-ranging impact of the advice to get pregnant for patients suffering from endometriosis (2).

  It needs to be remembered that infertility is a major problem in patients with endometriosis (3), through a combination of different mechanisms. A systematic review found no evidence that pregnancy itself reduces endometriosis lesions (4), and an important scientific society (ESHRE) published a guideline stating that pregnancy should not be recommended in order to cure endometriosis (5).

  Back to the examined study (2), the results were based on an online survey filled in by patients with a diagnosis of endometriosis. The survey included 65 items with combination of fixed-response and open-ended questions. This study focused on the responses to the open- ended question “Can you tell us how the advice to consider getting pregnant or having a baby impacted your life in the next 12 months?”.

  Of the 3347 survey participants, 1892 answered this specific question, with the majority being diagnosed through surgery. In almost 9 out of 10 cases, the advice to get pregnant came from a healthcare professional, of which 72% were gynecologists. Of note, only 20% of those had asked the healthcare professional for advice on how to get pregnant. The patients were given three main reasons on why they should get pregnant: as a treatment for endometriosis (68.2%, where treatment meant the ability to moderate disease symptoms), because endometriosis affects their fertility (56.1%) and as cure of the condition (36.8%). 37% were advised to seek pregnancy immediately but less than half of healthcare professionals asked them about their interest in having a baby. Less than 20% reported being interested in having a baby at that time and almost half of them reported that they felt too young to have a baby. Only one third felt that the advice they were given were appropriate for them at the time.

  In analysing the impact of this advice to the participants, the authors identified several themes: health literacy, feelings of pressure or rejection, impact on major life decisions, experiences with healthcare system, mental health and adverse impact on relationships. In particular, certain patients felt that the advice to get pregnant improved their knowledge of the disease, whereas others reported that they knew that pregnancy was not a cure and described disbelief. Some described feeling pressured to have a baby, whereas others felt the advice was inappropriate for a variety of reasons. Some participants reported that the advice prompted them to make ‘’major life changes’’. Patients reported a mismatch between their expectations (Eg. Pain management) and the advice they were given, a fact that led to ‘’losing faith in the medical profession’’ in some cases. Of course, this was not the case in patients that attended with pregnancy intention as primary wish. Of particular interest is the impact of this advice on the participants’ mental health, with feelings of stress, anxiety and even panic being reported, whereas some patients needed help from a physchologist. Lastly, some participants reported negative impacts of this advice on their relationship, sexual life and even relationship with other family members.

  The aforementioned study is not the only one demonstrating the impact of the advice to get pregnant on women with endometriosis (6-8). Of course, since endometriosis impacts on fertility, giving fertility advice (rather than pregnancy advice) may be suitable in certain patients. This advice may include things like testing ovarian reserve and oocyte/embryo freezing and is, therefore, much more complex than the simple advice of getting pregnant promptly.

  Actively listening to the patients’ concerns and engaging in patient-centric conversations should be in the centre of discussion between the healthcare professional and the patient. Of note, there is a documented need for improved knowledge of endometriosis amongst healthcare professionals (9,10), and it can be anticipated that improvements in education will lead to a better care of women suffering from endometriosis.

References:

1. Young K, Fisher J, Kirkman M. Endometriosis and fertility: women’s accounts of healthcare. Hum Reprod. 2016;31(3):554–62. https://doi.org/10.1093/ humrep/dev337.
2. Sirohi, D., Freedman, S., Freedman, L. et al. Patient experiences of being advised by a healthcare professional to get pregnant to manage or treat endometriosis: a cross-sectional study. BMC Women’s Health 23, 638 (2023). https://doi.org/10.1186/s12905-023-02794-2.
3. Coccia ME, Rizzello F, Cammilli F, Bracco GL, Scarselli G. Endometriosis and infertility Surgery and ART: an integrated approach for successful manage­ment. Eur J Obstet Gynecol Reprod Biol. 2008;138(1):54–9. https://doi. org/10.1016/j.ejogrb.2007.11.010.
4. Young K, Fisher J, Kirkman M. Endometriosis and fertility: women’s accounts of healthcare. Hum Reprod. 2016;31(3):554–62. https://doi.org/10.1093/ humrep/dev337.
5. Becker CM, Bokor A, Heikinheimo O, Horne A, Jansen F, Kiesel L, et al. ESHRE guideline: endometriosis. Hum Reprod Open. 2022;2022(2):hoac009. https:// doi.org/10.1093/hropen/hoac009.
6. Facchin F, Saita E, Barbara G, Dridi D, Vercellini P. Free butterflies will come out of these deep wounds: a grounded theory of how endometriosis affects women’s psychological health. J Health Psychol. 2018;23(4):538–49. https:// doi.org/10.1177/1359105316688952.
7. Gomez AM, Arteaga S, Ingraham N, Arcara J. Medical conditions, pregnancy perspectives and contraceptive decision-making among young people: an exploratory, qualitative analysis. Contraception. 2019;100(1):72–8. https://doi. org/10.1016/j.contraception.2019.03.046.
8. Plotkin KM. Stolen adolescence: the experience of adolescent girls with endometriosis: University of Massachusetts Amherst. DOI: Not available; 2004.
9. Rowe HJ, Hammarberg K, Dwyer S, Camilleri R, Fisher JR. Improving clinical care for women with endometriosis: qualitative analysis of women’s and health professionals’ views. J of Psychosomatic Obstetrics and Gynecology. 2021;42(3):174–80. https://doi.org/10.1080/0167482X.2019.1678022.
10. Grigoriadis G, Roman H, Kalaitzopoulos DR, Christoforidis N, Pados G, Daniilidis A. Diagnosis of Endometriosis by Transvaginal Ultrasound: An Online Survey of Gynecologists Practising in Greece. Cureus. 2023 Apr 21;15(4):e37950. doi: 10.7759/cureus.37950.