Myths and misconceptions in endometriosis

by Ros Wood (revised by Lone Hummelshoj in 2011)

Gender issues and the complex nature of endometriosis have led to the unfortunate creation of a variety of myths and misconceptions about the condition.

This article aims to put the facts about endometriosis straight!

Let’s be clear about endometriosis

From a woman’s perspective, endometriosis is a disease surrounded by taboos, myths, delayed diagnosis, hit-and-miss treatments, and a lack of awareness, overlaid on a wide variety of symptoms that embody a stubborn, frustrating and, for many, painfully chronic condition.

It affects these women during the prime of their lives and through no personal failing in lifestyle choices.

These women’s physical, mental and social well-being is impacted by the disease, potentially affecting their ability to finish an education, maintain a career, with a consequent effect on their relationships, social activities, and fertility.

Their access to timely diagnosis and treatment should not be impacted by the myths and mis-conceptions that are, unfortunately, still at large.

Period pain is normal

‘Women’s problems’ perplexed nineteenth century doctors, who saw them as indicative of women’s unstable and delicate psychological constitutions. Even though attitudes towards women improved during the twentieth century, some of the old beliefs still linger unconsciously, and affect the medical profession’s attitudes towards women’s complaints, including period pain.

As a result, while seeking help for their period pain, many women with endometriosis are told that their (severe) period pain is ‘normal’, ‘part of being a woman’, or ‘in their head’. Others are told that they have ‘a low pain threshold’, or are ‘psychologically inadequate’.

Many women and girls do experience pain at the time of their period. However, severe pain that interferes with daily life is not normal, and is often due to the presence of an underlying condition, such as endometriosis. Any girl or woman with severe period pain should be investigated to determine the cause of her pain.

Too young to have endometriosis

Far too many doctors still believe that endometriosis is rare in teenagers and young women. Consequently, they do not consider a diagnosis of endometriosis when teenagers and young women come to them complaining of symptoms like period pain, pelvic pain and painful intercourse.

Unfortunately, this belief is a carry-over from earlier times. Before the introduction of laparoscopy in the 1970s, endometriosis could only be diagnosed during a laparotomy, major surgery involving a 10–15 cm incision into the abdomen. The risks and costs of a laparotomy meant it was usually done only as a last resort in women with the most severe symptoms who were past childbearing age. Because only women in their 30s or 40s were operated on, the disease was only found in women of that age. Nevertheless, the ‘fact’ arose that endometriosis was a disease of women in their 30s and 40s.

It was only with the introduction in the 1970s and 80s of laparoscopy to investigate women with infertility problems that gynaecologists began diagnosing the disease in women in their late 20s and early 30s, the age group being investigated. So, they revised the typical age range for endometriosis down to the late 20s and early 30s. Again, they did not consider that they might be ‘finding’ it because they were ‘looking’ for it.

The realisation that endometriosis could be found in teenagers and young women came about as a result of research by the national endometriosis support groups in the mid 1980s, which caught the attention of some eminent gynaecologists in the 1990s. Dr Marc Laufer of the Children’s Hospital Boston conducted studies of teenagers with chronic pelvic pain. One of his studies showed that adolescents whose chronic pelvic pain was not alleviated by an oral contraceptive pill and a non-steroidal anti-inflammatory drug like Ponstan had a high prevalence of endometriosis—as high as 70% [1].

More recently the Global Study of Women’s Health, conducted in 16 centres in ten countries, showed that two thirds of women sought help for their symptoms before the age of 30, many experiencing symptoms from the start of their first period [2].

So, teenagers and young women in their early 20s are NOT too young to have endometriosis – in fact, most women experience symptoms during adolescence, but unfortunately don’t get diagnosed and treated until they are in their 20s or 30s.

Hormonal treatments cure the condition

Synthetic hormonal drugs like the pill, progestins, Danazol, and GnRH-analogues have been used for many years to ‘treat’ endometriosis. However, these hormonal treatments do not have any long-term effect on the disease itself. They do suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms more often than not return.

This means that hormonal treatments do not have a role in treating (eradicating) endometriosis. If eradication of the disease is desired, surgery performed by a gynaecologist with extensive knowledge and experience of the specialised techniques used for endometriosis is the only effective medical treatment.

It also means that hormonal treatments should not be used to improve women’s chances of conceiving. Not only do they have no effect on the disease itself, but they also reduce the time available to conceive, because conception is not possible while on the drugs. If treatment is needed for infertility, surgery by a specialist gynaecologist is imperative.

Pregnancy cures endometriosis

Fortunately, the myth that pregnancy cures endometriosis is slowly disappearing.

However, it is not disappearing fast enough! The reality is that pregnancy—like hormonal drug treatments—usually suppresses the symptoms of endometriosis but does not eradicate the disease itself. Therefore, symptoms usually recur after the birth of the child. Most women can delay the return of symptoms by breastfeeding, but only while the breastfeeding is frequent enough and intense enough to suppress the menstrual cycle.

Endometriosis invariably causes infertility

Too many young women are given the impression that having endometriosis invariably means that they will become infertile. This is not the case, and many women with endometriosis do go on to have children.

Unfortunately, there are no reliable statistics that indicate what percentage of women with endometriosis have no problems having children, have difficulties but eventually succeed, or never succeed. Therefore, it is impossible to give women a reliable indication of their chances of having fertility problems. However, in general, it is believed that the likelihood of fertility problems increases with the severity of the disease and, as in women without endometriosis, with age.

It is generally believed that 60–70% of women with endometriosis are fertile. Furthermore, they say that about half the women who have difficulties do eventually conceive with or without treatment.

Infertility caused by endometriosis on the tubes

The statement that scarring of the fallopian tubes due to endometriosis is a common cause of infertility is appearing more and more frequently in lay publications. The authors of such publications are usually people who have very little understanding of the condition and are probably confusing the causes of endometriosis-associated infertility with those of pelvic-inflammatory-disease-associated infertility. Pelvic inflammatory disease is an infection that damages or blocks the fallopian tubes. It causes infertility by preventing movement of the egg and sperm through the tube.

The reality is that endometrial implants are rarely found on the fallopian tubes. Therefore, endometriosis does not usually cause scarring of the fallopian tubes or infertility due to scarring of the tubes.

The mechanisms by which endometriosis causes infertility are still largely unknown, despite years of research. It may be years or even decades before the riddles of endometriosis infertility and sub-fertility are solved.

Facts about endometriosis

The World Endometriosis Society and World Endometriosis Research Foundation have published a one-page information sheet with Facts about endometriosis, which you can download as a PDF.

References

1. Propst AM and Laufer MR. Endometriosis in adolescents. Incidence, diagnosis, and treatment. J Reprod Med 1999;44(9):751-8.
2. Nnoaham KE et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011;96(2):366-73.