• What is endometriosis? Endometriosis is the benign disease that is characterized by the presence of endometrial-like tissue, in various parts of the body, outside the uterus.

• How common is endometriosis? Endometriosis is a common disease. Around 10% of women have endometriosis¹, however, in women with infertility, its frequency can rise to 35-50%².

• What are the common symptoms of endometriosis? The classic symptom is pelvic pain (pain in the region below the belly button). The pain can vary from mild to severe, just before or during menstruation. In some cases, the pain may not be related to menstruation. Other possible symptoms arise from the bowel (pain during defecation, bleeding, bloating, constipation, diarrhoea), the urinary tract( burning on passing urine, bleeding, frequent micturition, incomplete emptying of the bladder), pain during sexual intercourse, pain in the right shoulder (endometriosis of the diaphragm) or pain in the back and lower limbs (endometriosis of the sacral plexus and sciatic nerve). It may also be associated with chronic tiredness and fatigue. In some cases, however, endometriosis causes no symptoms (asymptomatic). The disease is often associated with infertility.

• How is endometriosis diagnosed? Diagnosis of endometriosis, for the time being, is based on history-taking, clinical examination, imaging tests (ultrasound, MRI) and diagnostic laparoscopy(surgery), with or without taking biopsies (tissue to be tested under the microscope for an accurate diagnosis).

• Is endometriosis a potentially fatal disease? No. However, there are certain cases, where urgent management is required. Those are: ureteric stenosis, risk of bowel obstruction, possibility of malignancy.

• Why some (and not all) women have endometriosis? We do not have the exact answer to this question since we do not know the exact cause of the disease. It is possible that some women ‘’are born with endometriosis’’ and the expression of the disease may be triggered by exposure to certain environmental factors³.

• Is there a cure for endometriosis? Unfortunately, for the time being, no. We are, therefore, talking about management methods (not cure) of endometriosis. They involve medication, surgical management and alternative therapies.

• I have been diagnosed with endometriosis. Does that mean I cannot get pregnant? No. However, infertility rates are higher in women with endometriosis⁴.

• I have been diagnosed with endometriosis. Will I need in vitro fertilisation (IVF) in order to get pregnant? Not necessarily. However, every case is different and warrants an individualised management. Since endometriosis is associated with infertility⁴, IVF is a valid option, particularly in the presence of other conditions causing infertility⁵.

• I have been diagnosed with endometriosis. Will medical management be enough? In some, but not all, cases. Medical management is successful in around two-thirds of patients⁶. What is more, other than simple analgesics, medication also works as contraception. Unpleasant secondary effects from medication may lead to cessation of the regime⁷.

• I have been diagnosed with endometriosis. Will I need surgery? Not necessarily. Medical management can be tried first, in most cases. In certain circumstances though (failure of medical management, not wishing to try hormonal contraception, urgent conditions, wish for pregnancy), surgical management will be required.

• Is surgical management of endometriosis done via laparoscopy (small skin incisions)? Yes. Surgical management of pelvic endometriosis (the area below the belly button) is carried out, almost exclusively, via small skin incisions.4 small incisions are often used, one in the belly button and 3 below the belly button.

•  I will need surgery for endometriosis. Ιs it important who performs my surgery? Yes. It is important for the surgery to be performed by a specialist endometriosis surgeon. The disease often causes significant distortion of the anatomy, requiring a high degree of skill in order to achieve a safe removal of endometriosis lesions. What is more, the disease can involve other systems (e.g., bowel, urinary tract), requiring the cooperation of different specialties.

• I have been diagnosed with endometriosis. Will I need a hysterectomy? No. The aim of surgery is to remove all endometriosis lesions, whilst keeping the uterus, ovaries and fallopian tubes. This gives the patient the chance of getting pregnant after the operation. However, in cases of women who do not wish more children and have co-existent conditions (e.g., fibroids, polyps, heavy periods), hysterectomy may be a reasonable option. It is our preference not to remove the ovaries before the age of natural menopause⁸. 

• Ι have been diagnosed with endometriosis. Will I need special surveillance if I get pregnant? No. Endometriosis may have some negative effects on pregnancy, however, the numbers are not large enough to negate a change in routine antenatal care.

• I have been diagnosed with endometriosis. Will I need a caesarean section? Not necessarily. It is important to discuss mode of delivery with your obstetrician during pregnancy. In certain cases of previous endometriosis surgery (e.g., removal of part of the vagina, bowel surgery), an elective caesarean section is the safest option.

• Ι have been diagnosed with endometriosis. Am I at higher risk of developing cancer? Endometriosis appears to slightly increase the risk of 2 types of ovarian cancer⁹. It might be associated with a slightly higher risk of thyroid cancer and a slightly higher risk of breast cancer, with a lower risk of cervical cancer⁹. We have to, however, remember that the absolute numbers remain low.

• I have been diagnosed with endometriosis. Does that mean that my daughters will also have endometriosis? Not necessarily. There could be some pattern of familial inheritance, as endometriosis appears to be more common in first-degree relatives of women with endometriosis¹⁰. So, if those women present with symptoms suggestive of endometriosis, it is advisable for them to see a gynaecologist with experience in the management of the disease.

• Diagnostic laparoscopy found no evidence of endometriosis. However, my symptoms persist. What can I do now? There are diseases that ‘’mimic’’ the symptoms of endometriosis. What is more, endometriosis may often co-exist with other conditions causing chronic pelvic pain¹¹. For this reason, it is important for healthcare professionals to cooperate in the management of such complex cases.

References:

1. Rogers PA, D’Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.
2. Bulun, SE. Endometriosis. N Engl J Med 2009; 360: 268–279.
3. Bouquet de Jolinière J, Ayoubi JM, Lesec G, Validire P, Goguin A, Gianaroli L, Dubuisson JB, Feki A, Gogusev J. Identification of displaced endometrial glands and embryonic duct remnants in female fetal reproductive tract: possible pathogenetic role in endometriotic and pelvic neoplastic processes. Front Physiol. 2012 Dec 3; 3:444.
4. Holoch KJ, Lessey BA. Endometriosis and infertility. Clin Obstet Gynecol. 2010 Jun;53(2):429-38.
5. G.A. Dunselman, N. Vermeulen, C. Becker, C. Calhaz-Jorge, N. D’Hooghe, B. De Bie, et al. European Society of Human Reproduction and Embryology. ESHRE guideline: management of women with endometriosis. Hum Reprod, 29 (3) (2014), pp. 400-412.
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7. Vercellini, P. Are combined hormonal contraceptives the neglected treatment for symptomatic endometriosis? Fertil. Steril. 2018,110, 61–62.
8. Parker WH, Feskanich D, Broder MS, et al. Long-term mortality associated with oophorectomy compared with ovarian conservation in the nurses’ health study. Obstet Gynecol. 2013;121(4):709-716. doi:10.1097/AOG.0b013e3182864350.
9. Kvaskoff M, Mahamat-Saleh Y, Farland LV, Shigesi N, Terry KL, Harris HR, Roman H, Becker CM, As-Sanie S, Zondervan KT, Horne AW, Missmer SA. Endometriosis and cancer: a systematic review and meta-analysis. Hum Reprod Update. 2021 Feb 19;27(2):393-420.
10. Simpson JL, Elias S, Malinak LR, Buttram VCJ. Heritable aspects of endometriosis. I. Genetic studies. Am J Obstet Gynecol 1980; 137:327–31.
11. Smorgick N, Marsh CA, As-Sanie S, Smith YR, Quint EH. Prevalence of pain syndromes, mood conditions, and asthma in adolescents and young women with endometriosis. J Pediatr Adolesc Gynecol. 2013 Jun;26(3):171-5.