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Endometriosis: you deserve a team, not just a single appointment

Multidisciplinary care is an official recommendation. Here's how to build the care team that fits you, at your own pace.

3 min read

You have a diagnosis, maybe a gynecologist, and yet you are still in pain and still have questions. You are not imagining it. In France, diagnosis takes 7 years on average [1]. The good news: the right team changes everything, and you can build it at your own pace.

A multi-organ disease calls for several specialists

Your pain is real and it has a physical cause. Endometriosis is a chronic inflammatory disease: lesions can grow on the peritoneum, ovaries, rectum, bladder, ureters, sometimes the diaphragm or nerves [2][3]. No doctor, however skilled, can master every dimension alone. And if diagnosis took a long time, that is not for lack of effort on your part.

You are not "a complicated case". The disease is complex, so the response must be too. For diabetes or cancer, no one is surprised that several specialists are needed.

French and European guidelines are clear: the best care relies on a coordinated multidisciplinary team [4][5]. Before diagnosis, many women see several doctors over nearly 7 years [6]. Team-based care is the opposite of a system working in silos: professionals who talk to each other and share a full picture of your situation.

Sources (5)
  • [2] Organisation Mondiale de la Santé (OMS). Fiche d'information sur l'endométriose. Mars 2023. who.int
  • [3] Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med. 2020;382(13):1244-1256. doi:10.1056/NEJMra1810764
  • [4] Collège National des Gynécologues et Obstétriciens Français (CNGOF) / Haute Autorité de Santé (HAS). Recommandations pour la prise en charge de l'endométriose. 2018.
  • [5] European Society of Human Reproduction and Embryology (ESHRE). Guideline on Endometriosis. 2022.
  • [6] Nnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011;96(2):366-373.e8. doi:10.1016/j.fertnstert.2011.05.090

The medical core: gynecologist, surgeon, pain specialist

You do not need to see them all at once. The point is to know who exists and what each one brings.

  • Specialized gynecologist: makes or confirms the diagnosis and offers first-line hormonal treatments (continuous pill, progestins, dienogest) to slow the lesions and ease pain [5][7].
  • Surgeon: removes lesions by laparoscopy (minimally invasive surgery, through small incisions, under anesthesia) when treatments are not enough. Ideally in an expert center, with the decision confirmed in a multidisciplinary meeting (RCP) [4][5].
  • Pain specialist (algologist): has one mission, reducing pain that resists hormones or persists after surgery, using tools a gynecologist may not have.
Sources (3)
  • [5] European Society of Human Reproduction and Embryology (ESHRE). Guideline on Endometriosis. 2022.
  • [7] Vercellini P, Viganò P, Somigliana E, Fedele L. Endometriosis: pathogenesis and treatment. Nat Rev Endocrinol. 2014;10(5):261-275. doi:10.1038/nrendo.2013.255
  • [4] Collège National des Gynécologues et Obstétriciens Français (CNGOF) / Haute Autorité de Santé (HAS). Recommandations pour la prise en charge de l'endométriose. 2018.

Other allies: physiotherapist, psychologist, dietitian

These professionals target what neither drugs nor surgery reach directly.

  • Pelvic physiotherapist: releases pelvic floor tension (massage, stretching, biofeedback, TENS neurostimulation), helpful for pain during sex [5][8].
  • Psychologist: a complement, never a replacement for treatment. Living with a chronic disease is heavy, and 48 to 80% of affected women have anxiety or depression [9]. Cognitive behavioral therapy and mindfulness help you manage pain better [5].
  • Dietitian: some studies suggest an anti-inflammatory diet (omega-3, fruit, vegetables, fiber) could ease pain and digestive symptoms [10]. The evidence is still emerging [5].
  • GP and midwife: coordinate your care, centralize your reports, renew treatments and refer you to an expert center.
Sources (4)
  • [5] European Society of Human Reproduction and Embryology (ESHRE). Guideline on Endometriosis. 2022.
  • [8] Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. PMID:29643586.
  • [9] Laganà AS, La Rosa VL, Rapisarda AMC, et al. Anxiety and depression in patients with endometriosis: impact and management challenges. Int J Womens Health. 2017;9:323-330. doi:10.2147/IJWH.S119729
  • [10] Parazzini F, Viganò P, Candiani M, Fedele L. Diet and endometriosis risk: a literature review. Reprod Biomed Online. 2013;26(4):323-336. doi:10.1016/j.rbmo.2012.12.011

Expert centers and concrete first steps

In 2022, France launched a national strategy against endometriosis: at least 29 expert centers were labeled nationwide [11]. They bring together gynecologists, surgeons, pain specialists and radiologists, and discuss your case in a multidisciplinary meeting.

Far from a center? Teleconsultation is growing, and your GP or midwife can stay in touch with the expert team. If fertility is on your mind, a reproductive medicine specialist can also join the team: 30 to 50% of affected women face fertility difficulties [5]. Here are concrete first steps:

  • Track your symptoms for one to two weeks: where, how intense (0 to 10), what they stop you doing. This log makes your voice precise and concrete in appointments.
  • Contact an association like EndoFrance or ENDOmind: helplines, directories of trained professionals and support groups [12].
  • Ask for a referral: "I would like to be referred to an expert center for multidisciplinary care." This request is backed by official guidelines [4][11].
  • Name a coordinator: your GP, referring gynecologist, or you. Gather your reports in one file so that everyone on your team keeps the overall picture.
Sources (4)
  • [11] Ministère de la Santé et de la Prévention. Stratégie nationale de lutte contre l'endométriose. 2022-2023. sante.gouv.fr
  • [5] European Society of Human Reproduction and Embryology (ESHRE). Guideline on Endometriosis. 2022.
  • [12] EndoFrance. Annuaire des centres et professionnels spécialisés en endométriose. endofrance.org
  • [4] Collège National des Gynécologues et Obstétriciens Français (CNGOF) / Haute Autorité de Santé (HAS). Recommandations pour la prise en charge de l'endométriose. 2018.

You do not have to become a doctor, but you are the most important person on your team. You have the right to ask questions, to get a second opinion and to change doctors if needed. Start small: track your symptoms in Endora so you arrive at appointments with concrete markers, then ask for a referral to an expert center. Care is improving, and you are not alone.

This article is for information only and does not replace the advice of a health professional. If a symptom worries you, talk to a doctor.

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