More Than a Pelvic Disease: Understanding the Full-Body Reality of Endometriosis
You might have been told that endometriosis is a “pelvic condition.” But for many people, it doesn't behave like one. Endometriosis is increasingly understood as a chronic, inflammatory, multisystem disease, where endometrial-like tissue can be found beyond the pelvic cavity. This broader view helps explain why symptoms can vary so widely from one patient to another, and why care often requires more than one specialist.
Where can endometriosis grow?
The pelvis remains the most common location, but the disease can extend well beyond it.
Pelvic
Ovaries (endometriomas), uterosacral ligaments, rectovaginal space (pouch of Douglas), peritoneum, retrocervical space, and vagina.
Symptoms: Painful periods (dysmenorrhea), pain with sex (dyspareunia), chronic pelvic pain. [1]
Gastrointestinal tract
Most commonly the rectum and sigmoid colon; represents the majority of extragenital disease.
Symptoms: Pain with bowel movements (dyschezia), bloating, cyclic bowel changes. [1]
Urinary tract
Bladder and ureters.
Symptoms: Pain with urination (dysuria), urgency, and sometimes silent ureteric obstruction. [1]
Thoracic (chest)
Diaphragm (the most common extrapelvic site), pleura, and lungs — often right-sided.
Symptoms: Chest pain, cyclical shoulder pain, shortness of breath, catamenial pneumothorax (lung collapse around menstruation), or rarely coughing up blood (hemoptysis). [2]
Abdominal wall
Surgical scars (for example, C-section scars), umbilicus, groin.
Symptoms: Palpable mass, cyclic pain, sometimes umbilical bleeding. [2,3]
Nervous system
Sciatic nerve, pelvic nerves, and very rarely the central nervous system. Less common, but increasingly recognized.
Symptoms: Radiating leg pain, numbness, tingling, cyclical “sciatica-like” pain. [2,4]
Endometriosis has also been reported, more rarely, in organs such as the kidneys, liver, pancreas, and — in isolated cases — the nasal cavity. While uncommon, these findings highlight how diverse this disease can be. [2]
Why this matters: different organs, different expertise
When endometriosis affects different organs, symptoms often reflect the function of that organ. Bowel involvement may cause digestive symptoms, urinary disease can affect kidney function, and nerve involvement can mimic neurological conditions.
Because of this, treatment is not always straightforward.
- Bowel disease may require a colorectal surgeon
- Urinary tract involvement may require a urologist
- Thoracic disease may involve a cardiothoracic surgeon
- Nerve involvement may require neuropelveology expertise
- Complex pelvic disease often requires an advanced gynecologic surgeon
In many cases, these specialists need to work together — sometimes even during the same surgery.
The role of multidisciplinary care
This is why expert guidelines increasingly recommend a multidisciplinary team (MDT) approach, particularly for deep or complex endometriosis. [6]
A typical MDT may include:
- Advanced gynecologic surgeon (often coordinating care)
- Colorectal surgeon
- Urologist
- Specialist radiologist
- Pain specialist
- Pelvic floor physiotherapist
- Psychological support when needed
This approach helps to:
- Accurately map disease
- Plan safer and more effective surgery
- Address pain beyond lesion removal
- Support long-term quality of life
Evidence suggests MDT care is associated with more coordinated decision-making and improved patient-centred outcomes in complex endometriosis. [5]
Key takeaway
Endometriosis is not confined to one organ. While it most commonly affects the pelvis, it can also involve the bowel, bladder, chest, and the abdominal wall. Because of this, symptoms can look very different from one person to another.
We are still learning about the full extent of this disease, but one thing is becoming more and more clear: endometriosis is a multisystemic condition where patients may benefit from a multidisciplinary approach. Understanding where it can exist is the first step toward getting the right team involved, and ultimately, more comprehensive, effective, and compassionate care.
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Please note: This article is for educational purposes only and reflects patient advocacy and published research. It is not medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your symptoms and treatment options.
References
- Chamié LP, Ribeiro DM, Tiferes DA, Macedo Neto AC, Serafini PC. Atypical sites of deeply infiltrative endometriosis: clinical characteristics and imaging findings. Radiographics. 2018;38(1):309–328. doi:10.1148/rg.2018170093
- Andres MP, et al. Extrapelvic endometriosis: a systematic review. J Minim Invasive Gynecol. 2020;27(2):373–389. doi:10.1016/j.jmig.2019.10.004
- Dridi D, Chiaffarino F, Parazzini F, Donati A, Buggio L, Brambilla M, et al. Umbilical endometriosis: a systematic literature review and pathogenesis theory proposal. J Clin Med. 2022;11(4):995. doi:10.3390/jcm11040995
- Lukac M, Schmid M, Pfister K, Janni W, Schäffler A, Dayan D. Extragenital endometriosis in the differential diagnosis of non-gynecological diseases. Dtsch Arztebl Int. 2022;119(21):361–368. doi:10.3238/arztebl.m2022.0176
- Fang QY, Campbell N, Mooney SS, Holdsworth-Carson SJ, Tyson K. Evidence for the role of multidisciplinary team care in people with pelvic pain and endometriosis: a systematic review. Aust N Z J Obstet Gynaecol. 2024;64(3):181–192. doi:10.1111/ajo.13755
- ESHRE Guideline: Endometriosis, 2022.