Symptoms

What are the symptoms of endometriosis?

Symptoms vary and some individuals have only infertility

  • Severe pain during menstruation (see “Pain“)
  • Pelvic or abdominal pain not associated with menses
  • Low back and/or leg pain
  • Pain with sex (see “Sexual Functioning“)
  • Painful bowel movements
  • Stomach problems including nausea, bloating, diarrhea and/or constipation (see “Bowel/GI“)
  • Fatigue (see “Fatigue” and “Inflammation“)
  • Infertility (see “Fertility Issues“)

Less common symptoms

  • Pain with breathing and/or shoulder pain particularly during menstruation may indicate diaphragm or lung endometriosis (see “Thoracic (diaphragm)“)
  • Coughing up blood or collapse of lung during period may indicate lung endometriosis

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Endometriosis symptoms

Endometriosis symptoms can vary widely in both presentation and severity. While endometriosis can present with “typical” symptoms such as chronic pelvic pain during menstruation, it can also present with symptoms not readily attributed to endometriosis. One example is sciatica type symptoms- pain running along the lines of the sciatic nerve (from the low back down the back of the leg). For some, infertility rather than pain is the first sign that they note.

Pelvic Endometriosis:

The following study performed a literature review on pelvic endometriosis in order to identify signs and symptoms (hoping to lead to more timely investigation into the possibility of endometriosis).

Riazi, H., Tehranian, N., Ziaei, S., Mohammadi, E., Hajizadeh, E., & Montazeri, A. (2015). Clinical diagnosis of pelvic endometriosis: a scoping review. BMC women’s health15(1), 39. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4450847/pdf/12905_2015_Article_196.pdf

Some signs of endometriosis in other places/specific places might include:

(catamenial refers to menstruation; pneumothorax is air leaking into the space between the lung lining; hemothorax is blood leaking into the space between the lung lining; hemoptysis is coughing up blood)

This qualitative study describes symptoms as experienced by individuals with endometriosis:

“All women had suffered severe and progressive pain during menstrual and non-menstrual phases in different areas such as the lower abdomen, bowel, bladder, lower back and legs that significantly affected their lives. Other symptoms were fatigue, tiredness, bloating, bladder urgency, bowel symptoms (diarrhoea), bladder symptoms and sleep disturbances due to pain….

“The women described the pain as ‘sharp’, ‘stabbing’, ‘horrendous’, ‘tearing’, ‘debilitating’ and ‘breath-catching’. Severe pain was accompanied by vomiting and nausea and was made worse by moving or going to the toilet. The frequency of pain differed between the women with some reporting pain every day, some lasting for three weeks out of each menstrual cycle, and another for one year…

“Most of the women complained of dyspareunia during and/or after sex….

“Heavy and/or irregular bleeding was another symptom experienced but in some women, it was a side effect of endometriosis treatment. Bleeding when exercising and after sex were experienced by only a few women. Women and their partners were particularly worried when bleeding occurred after sex….

“Most women reported that endometriosis had significant impacts as they lived through it every day of their lives…. The physical impact was associated with symptoms, treatment side-effects and changes in physical appearance. Pain in particular was reported to limit their normal daily physical activity like, walking and exercise. Women who had small children mentioned that they were not able to care for them as they would like…Fatigue and limited energy were also among reported physical impacts of endometriosis. Although infertility was primarily a physical impact of endometriosis, it had a negative impact on the psychological health, relationship, and financial status of the women….

“Most women reported a reduction in social activity, and opted to stay home, and missed events because of severe symptoms especially pain, bleeding and fatigue. They resorted to using up their annual leave after exhausting their sick leave because of their disease. Some women also decreased their sport or leisure activities and some gave up their routine sport including water ski, horse-riding, swimming and snow skiing….”

References

Charatsi, D., Koukoura, O., Ntavela, I. G., Chintziou, F., Gkorila, G., Tsagkoulis, M., … & Daponte, A. (2018). Gastrointestinal and urinary tract endometriosis: a review on the commonest locations of extrapelvic endometriosis. Advances in medicine2018. Retrieved from https://www.hindawi.com/journals/amed/2018/3461209/

Malutan, A. M., Simon, I., Ciortea, R., Mocan-Hognogi, R. F., Dudea, M., & Mihu, D. (2017). Surgical scar endometriosis: a series of 14 patients and brief review of literature. Clujul Medical90(4), 411. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683831/

Medical News Today. (2018). Can endometriosis cause bladder pain?. Retrieved from https://www.medicalnewstoday.com/articles/321439

Nezhat, C., Lindheim, S. R., Backhus, L., Vu, M., Vang, N., Nezhat, A., & Nezhat, C. (2019). Thoracic endometriosis syndrome: a review of diagnosis and management. JSLS: Journal of the Society of Laparoendoscopic Surgeons23(3). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684338/

Saar, T. D., Pacquée, S., Conrad, D. H., Sarofim, M., De Rosnay, P., Rosen, D., … & Chou, D. (2018). Endometriosis involving the sciatic nerve: a case report of isolated endometriosis of the sciatic nerve and review of the literature. Gynecology and minimally invasive therapy7(2), 81. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6113996/