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What is Endometriosis?

Endometriosis is a common condition, mostly affecting women during their reproductive life span. Although exact numbers do not exist studies suggest a prevalence of approximately 5-10%. It is defined by the presence of tissue that closely resembles characteristics of endometrium if it is present outside the uterine cavity.

How does endometriosis develop?

Although many theories exist it remains unclear how and when endometriosis develops. Most people believe that endometrial tissue and cells enter the abdominal cavity through the Fallopian tubes at the time of the menstrual period. However, this is probably a normal phenomenon. Therefore, other factors must play a role if this ‘retrograde menstruation’ theory is the correct. Studies have demonstrated that endometrial tissue from women with endometriosis (over)-express factors necessary for the attachment to the abdominal wall, the invasion into deeper layers and acquisition of blood vessels necessary for further growth. Increasing evidence suggests that an impaired immune system also plays a central role in these processes. So far, though, the evidence is still circumstantial, but it could explain many aspects of the condition.

Anther theory assumes that endometriosis develops from cells that change their shape and characteristics due to genetic and/or external factors. However, none of the existing hypotheses have been completely proven and many mechanisms still remain unclear. It is possible that different mechanisms account for different presentations of endometriosis.

When does endometriosis develop?

This is another area that still entirely unclear. Endometriosis is almost exclusively found in women who produce sufficient levels of the hormone estrogen. Some young girls have painful periods, but it is unclear whether these are endometriosis related. Theories exist that connect the onset of endometriosis as far back as to the embryonic or perinatal period. It is unclear why endometriosis suddenly develops, over what time frame and whether and in whom it gets worse, stays the same or potentially even gets better spontaneously.

 Is endometriosis a genetic disease?


Where and how does endometriosis present?

The vast majority of endometriotic lesions are found in the female pelvis. These can have very different appearances, shapes and colours. They can be very superficial or deeply invading the abdominal lining (peritoneum) and organs such as the bowel, the bladder and the ureters (which are two long, tubes located in the posterior pelvic side wall that transport urine from the kidneys to the bladder). The lesions can be red, blue, brown, white, vascular, and look like adhesions, small vesicles, spots of different sizes or very hard nodules. There is some evidence that red lesions are more ‘active’, but it remains unclear what clinical impact this might have.

How do I know I have endometriosis?

Women with endometriosis can suffer from symptoms such as:

  • Painful periods
  • Cyclical and non-cyclical abdominal pain
  • Pain during sexual intercourse
  • Pain when emptying the bladder or their bowels
  • Fatigue
  • Feeling bloated

Much less common are symptoms such as usually menstrual period related:

  • Repeated spontaneous pneumothoraxes (rupture of the lung cavities)
  • Bleeding from Caesarean section scars, the umbilicus, the bowel, bladder or other body openings
  • Bulging and sometimes painful ‘lumps’

Endometriosis is a disease that is almost exclusively found within the abdominal cavity. So far no biochemical tests exist to detect or rule out the condition. Your GP or specialist may examine you depending on your symptoms. This often includes an internal vaginal examination if you agree and it is appropriate. This may identify rare lesions that can be seen in the vagina and also helps the clinician to assess the location and extent of possible disease. Again, depending on your symptoms, your clinical history and the findings during your visit it may be necessary to perform an ultrasound scan or, less likely, an MRI (magnetic resonance imaging) of your pelvis. As the lesions are very often quite small it is not uncommon that the imaging does not show any signs of endometriosis although you may still have it.

The gold standard to detect endometriosis, if it is located in the abdomen, is a laparoscopy (key hole surgery). However, a laparoscopy during which endometriosis could also be treated is an invasive procedure requiring general anaesthesia. Read more…

Should I be treated and if so how?

If you are suffering from endometriosis-associated symptoms then you probably should be treated. Treatment approaches ought to be tailored to your specific situation and take into consideration whether you are currently trying to become pregnant or not. Endometriosis is a disease driven by estrogen, the central female hormone. As such, most medical therapies are hormone based. However, in most circumstances, hormones should not be given if you are trying for a baby. Medical therapy also encompasses specific pain medication and can often be a combination of drugs.

The alternative is surgical therapy, which almost always should mean laparoscopic (key hole) surgery and not open surgery (laparotomy). This approach has the benefit of confirming or ruling out endometriosis. If you are having surgery, ideally your endometriosis should be treated at the same time. This can be done by removing, burning or evaporation the lesions. It is important to point out that endometriosis treatment, especially surgery, should be performed in a centre with vast experience in the field. This is particularly true for endometriosis involving other organs such as the bowel, bladder and ureters as a multi-disciplinary approach involving bowel surgeons and/or urologist may be necessary.

However, surgery is an invasive procedure and not entirely free of risks. Read more… Therefore, your doctor rightly may decide with you to assume that you may have endometriosis and treat it medically without surgical proof. This is known as empirical treatment and also frequently done. If your symptoms stop or at least become much better it may indicate that endometriosis is present and you are correctly treated. If you do not get better, it does not rule out endometriosis, though, and your doctor might change the medication, discuss the surgical approach or refer you to a specialist in a different field. In general, your doctor should discuss the various options with you so that you can make an informed decision which approach to take.

What do I do if I have endometriosis and I am trying to become pregnant?

Endometriosis can be associated with subfertility, but is usually not an absolute reason. If you have been diagnosed with endometriosis recently or in the past and you are now trying to become pregnant there is a good chance that you are going to be successful. However, if there is a delay, then you might want to consult a fertility and/or endometriosis specialist who will assess you and your partner’s situation and give you some advice. This may include investigations such as blood tests, semen analysis and investigations to check if you Fallopian tubes are open. It may also be suggested to you to have fertility treatment the type of which will depend on many factors.