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Myths and misconceptions in endometriosis

by Ros Wood, Heather Guidone, and Lone HUmmelshoj

Gender issues and the complex nature of endometriosis have led to the unfortunate creation of too many myths and misconceptions about a disease which affects an estimated 176 million women (and their families) worldwide.

Here are the facts about endometriosis – and let’s dispel some myths as well!

Endometriosis is difficult to understand

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 in some cases fertility. About half of women with endometriosis will also suffer from pain associated with sexual intercourse.

These women’s access to timely diagnosis and treatment should not be impacted by the myths and mis-conceptions that are, unfortunately, remain at large.

→ 7 year delay from presenting with symptoms to diagnosis and treatment

Severe period pain is not 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 have 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 pelvic pain (which may occur apart from menses), many women with endometriosis are told that their (often 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’.

The net is that if pain interferes with daily life (going to school/work, partaking in day-to-day activities) it is not normal.

If pain interferes with your day-to-day life, please seek help and ask to be investigated to determine the cause of your pain.

→ Women’s productivity at work severely impacted by endometriosis
→ Long-term effect on physical, mental, and social well-being 

No-one is 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. Subsequently ‘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].

Most 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].

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.