This leaflet is to help you understand what bowel endometriosis is, what tests you need, and what the implication of being diagnosed means to you.

What is bowel endometriosis? 

Endometriosis is a benign gynecological condition affecting up to 10% of women of reproductive age causing pain and/or infertility. Tissue similar to the lining inside the uterus (“the endometrium”) implants and grows inside the abdomen causing inflammation and scarring. Among 5-12% of women with endometriosis have bowel endometriosis, which are lesions that grow on the bowel that can cause severe pelvic pain, pain during menstruation and intercourse but may also cause pain when passing stools. 

What causes bowel endometriosis? 

The reason why bowel endometriosis develops is not known. The most common theory is that during menstruation cells from the lining inside the uterus is transported and implants inside the abdomen. Endometriosis causes scarring that can develop into bowel endometriosis lesions. Endometriosis is dependent on estrogen, which is a hormone that is part of the menstrual cycle. Genetic factors also influence the development of bowel endometriosis.

How is bowel endometriosis diagnosed? 

Bowel endometriosis can be suspected based on clinical history and examination. Imaging like transvaginal ultrasound and/or magnetic resonance imaging are the gold standard tools for diagnosing bowel endometriosis. However, it can also be confirmed during key whole surgery. 

What does it mean for me in long term? 

Bowel endometriosis can have a negative impact on the quality of life and the fertility of women. Bowel endometriosis is not associated with an increased risk of cancer. 

How can bowel endometriosis be treated? 

1.    Medical treatment is based on suppression of symptoms, which aims to relieve pain like noninflammatory steroidal inflammatory drugs, oral contraceptives or intrauterine device and other hormonal treatments that can be used. 
2.    Surgery can be used if medical treatment fails, for women with contraindications for contraceptives, couples seeking natural conception, patient preference, or specific indications such as narrowing of the bowel. 

Will it happen again? 

Bowel endometriosis may come back although it is thought to grow slowly. When medical treatment is stopped symptoms may worsen. It also depends on what type of bowel surgery is used if it comes back again. 

What other questions should I ask?

  • What are my treatment options?
  • What are the benefits and the side effects/risks of the treatment proposed? 
  • What is the impact on my fertility?