What is Endometriosis?
Endometriosis is a very common gynaecological condition in which tissues that normally line the inside of the womb, is found in other places. This leads to a cascade of problems for affected women, mostly resultant from an inflammatory process in the background. The main symptoms are pain and infertility, although the presence and severity does not always correlate with the symptoms. This makes it a very difficult condition to diagnose; in fact, many cases are not picked up until they consult an endometriosis specialist. The typical painful symptoms may be broadly classified into pain during menstruation, urination, bowel movement, intercourse or constant background abdominal / pelvic pain. An estimated 5%-10% of women supposedly has endometriosis, but this is very likely an underestimate as awareness and diagnosis rates are still lower than desired. This blog post will explore some facts behind this disease so you can determine if you belong to the high risk group for carrying this condition.
Is Endometriosis Inherited?
This has been the perennial question when it comes to determining the cause of endometriosis. The truth is, we do not know for sure, yet. You may know someone who is affected by endometriosis and somebody in her family too, but that does not confirm a genetic link for developing the disease, as the prevalence (how common the disease is) most likely is underestimated. Awareness, after a member of the family is diagnosed with endometriosis, may contribute to the higher pick-up rates within a family. A lot of research is going on currently to find out how endometriosis starts in women and whether different groups of women have different factors affecting their risk for developing endometriosis. The older hypothesis of retrograde menstruation (back-flow of menstrual blood) causing endometriosis is now being challenged. Newer evidence is suggestive of an immunological basis for developing this dreaded condition, at least for some women.
What are your first symptoms of endometriosis?
The first step towards successfully diagnosing endometriosis lies with awareness. Painful symptoms should prompt women to seek a consultation with an endometriosis specialist, especially when previous reviews with other doctors have resulted in “normal results”, or if treatment have not been effective in alleviating the pain. Below are the typical signs symptoms of endometriosis:
- Menstrual cramps (may be of variable intensity, not just the severe ones)
- Heavier menstrual flow, especially those with coexisting pain
- Cramps during or after sexual intercourse
- Pain when passing urine or stool
- Constant pain / discomfort in the pelvis
- Infrequently, symptoms may mimic irritable bowel syndrome
Can you die from untreated endometriosis?
Endometriosis can be a debilitating condition, in severe cases, the digestive and urinary tracts, as well as nervous systems may be affected. The destruction of the reproductive organs may also render a woman infertile. This dreaded disease mainly affects the quality of life, but it is not a fatal condition per se, unlike cancer.
Rarely, severe atypical endometriosis may lead to severe organ damage or bleeding, which might become life-threatening. Being inflammatory in nature, the extent of physical damage may often rival that of cancer, making the surgery to eradicate endometriosis sometimes even more difficult than cancer surgery.
Some studies have shown that certain cases of severe endometriosis may actually harbour tiny spots of cancer within the endometriosis, However, there is still no evidence that endometriosis causes cancer, rather, endometriosis may share common pathways with the development of cancer.
What are the Risk Factors
While the actual cause(s) of endometriosis is still unknown and likely to be multifactorial for different women, the presence of the following increases the chance of a woman having it:
- 1. Congenital malformation of the reproductive tract - some women may be born with an incompletely fused womb, leading to abnormal drainage of menstrual blood (the retrograde menstruation theory)
- 2. Acquired conditions affecting menstrual flow - some treatment or conditions that caused partial blockage of the menstrual tract and may also lead to abnormal drainage of menstrual blood
- 3. Polycystic ovarian syndrome - if you have PCOS and do not have regular ovulation, you may be more likely to have endometriosis as well
- 4. Age - Endometriosis only affects women in the reproductive age group, hence pre- pubertal girls and post-menopausal women are spared from endometriosis; some menopausal women may still experience symptoms related to organ damage or endometriosis scars, they do not develop new or active disease. If a woman is diagnosed with endometriosis at a younger age, she is likely to have more severe disease and will likely require multiple surgeries in her lifetime.
Can it be prevented?
Unfortunately, there is nothing proven to affectively prevent the onset of endometriosis.
Effective treatment exists for the various types of endometriosis and the individualised treatment objectives of each woman. Certain diets (generally low in oestrogen) may help in alleviating symptoms of women by complementing medical treatment. Exercise may also benefit by optimising body weight, provide a sense of wellness and endorphins may help with pain.
What you can do about endometriosis
The key to managing endometriosis is diagnosis, which in turn depends on affected women coming forward for consultation with an endometriosis specialist. The exact treatment regime should then be tailored to suit the individual woman / couple.
Treatment options for endometriosis are varied. Each woman (or couple, if main symptom is infertility) should have her treatment customised to suit her medical profile, severity of disease, type of symptoms(s) and objective(s) of treatment. For certain individuals, not prescribing any treatment at all might be the most appropriate.
The proper diagnosis of endometriosis requires visualisation (and identification) of the endometriotic lesions on the pelvic structures; this can only be done with laparoscopy (keyhole surgery). To the untrained eye, milder / more subtle lesions may be missed. A thorough assessment of all the surfaces of the pelvic organs and environment is mandatory. During this keyhole surgery, once the disease is identified and extent of spread (severity) mapped out, careful and thorough removal of the disease may be undertaken at the same setting.
For women with severe endometriosis that may not be completely removable, or if she prefers to have medical therapy to suppress the disease, there are several options available; these are generally more suitable for women who do not intend to conceive again. The choice of treatment agents will have to be customised to the needs and desires of the woman.
Is there any endometriosis specialist near me? This question is common for those women who suspect they have the condition. We recommend visiting your doctor and ask for a referral to an experienced endometriosis surgeon / specialist near you. Doing this will be your first step in your journey to win your battle against this dreaded disease.
Author: Dr Steven Teo
Obstetrician & Gynaecologist
STO+G Laparoscopy & Fertility Practice
(Accredited IVF Clinician and Advanced Laparoscopy for Endometriosis)