Endometriosis is a condition that afflicts 176.000.000 women and their families globally. The lining of the uterus, called endometrium, is found outside the uterus. The endometrium is found at the wrong place. Its causes are poorly understood and the complicated nature of the disease, have contributed to the creation of many myths and misunderstandings.
Our aim is to reveal some facts and dispel some of the myths surrounding this disease.
It is difficult to understand endometriosis
From a woman’s point of view, endometriosis is a mysterious condition surrounded by taboos, myths, delayed diagnosis and above all ineffective treatments.
Its symptoms are similar to other diseases and that delays the diagnosis, the condition progresses and finally is turned into a chronic illness.
Women find that their quality of life is negatively affected. Sometimes their options of education and career are limited by the disease and finally realize that their social activities and relations are greatly affected. About half of the women suffering from endometriosis cannot have a normal sexual life due to pain (dyspareunia).
We must clarify the myths and misunderstandings of endometriosis, so that women are timely diagnosed and treated.
Severe Dysmenorrhea (period pain) is not normal
The legacy of 19th century medicine still prevails. In those days, women’s symptoms were considered a reflection of woman’s nature, that is unstable and sensitive. Although 21st century medicine is very different from those days, some doctors still display similar attitudes towards some symptoms, such as period pain.
Many women seeking medical help for pelvic pain, not only during their period, but at any time of the cycle, are told that this is part of woman’s nature or that it is in their brain. Others are told that they have a very low pain threshold or that they are psychologically unstable.
The truth is, that if the pain interferes with normal daily activities such as going to school or to work, this is not normal.
If the pain upsets your normal daily routine, you must seek medical attention. You must insist on the proper investigation of your symptoms, the finding of the cause and the right treatment.
Endometriosis also affects young women
Even today, many doctors think that endometriosis is rare in young girls and adolescent women. When women in this age bracket complain of pelvic pain, dysmenorrhea or dyspareunia, the diagnosis of endometriosis is missed.
Before laparoscopy became a routine procedure in the seventies, endometriosis was diagnosed only in women undergoing a laparotomy. This is a big and costly operation performed for serious indications in older women. That is how the misconception, that endometriosis is only found in older women prevailed.
When laparoscopy became a routine procedure in the investigation of infertility, doctors started to find endometriosis in younger women, in their twenties and thirties.
The diagnosis of endometriosis even in younger women was the result of a research project in the eighties. Many respected gynecologists participated.
Dr. Marc Laufer in Boston studied young girls and adolescents women with pelvic pain. His research showed that when the pain was not responding to the contraceptive pill or anti-inflammatory drugs (Ponstan), the incidence of endometriosis in this population was as high as 70%.
A recent worldwide study of women’s health in 16 centers across 10 countries, revealed that two thirds of women seeking treatment before the age of 30, had the very same symptoms from their first period. Young women in their twenties are not to young to have endometriosis. Unfortunately diagnostic delays of ten to twelve years are not uncommon. Many teenagers are diagnosed with endometriosis at the age of thirty.
Hormonal treatments do not eradicate endometriosis
Many hormonal treatments have been in clinical use for very many years. Medications such as the contraceptive pill, progestins, danazol and GnRh analogues are commonly prescribed to women with endometriosis. However, these medications do not have a long term effect on the disease. They suppress the symptoms for the duration of the treatment. Once the treatment is stopped is more likely than not, that the symptoms will recur. These hormonal treatments do not eradicate the disease.
Only surgical treatment will eradicate the disease. Experienced surgeons in the treatment of endometriosis have the best results.
Hormonal treatment should not be used to improve the chances of natural conception in women with endometriosis. Not only are they totally ineffective, but they also increase the time to conception. When the contraceptive pill is prescribed, the woman can obviously not get pregnant, because the ovulation is suppressed.
Women with infertility are better off seeing a reproductive specialist. He will advise them on the best treatment.
Pregnancy does not treat endometriosis
Fortunately this myth, that the pregnancy treats endometriosis is slowly disappearing. The pregnancy hormones, produced by the placenta, do suppress the symptoms of endometriosis. However the symptoms recur sometime after birth.
Many women try to delay the recurrence of the endometriotic symptoms with breast feeding. They must breast feed full time so that the menstrual cycle is suppressed.
Endometriosis is not synonymous with infertility
A lot of women with endometriosis think that they are infertile. This is not true. Many women with endometriosis will spontaneously conceive and give birth.
However, we ignore what percentage of women will conceive without problem. We do not even know, how many of those who had problems, managed to become pregnant and how many did not succeed even after treatment.
Therefore, is very difficult to accurately consult a woman on her chances of becoming pregnant. The more serious the stage of disease, the more difficult it is to achieve a pregnancy. The strongest predicting factor, endometriosis or not, is the age of the woman.
It is believed that 60-70% of women with endometriosis are fertile. Even of those women with difficulties, at least 50% will finally become pregnant, spontaneously or with medical help.
The relation between endometriosis and infertility is poorly understood. In cases of severe disease, anatomical distortion of the pelvic organs may explain the problem.
Endometriosis of the tube is not very common and rarely leads to infertility. Other factors interplay. Despite many decades of intensive research, we do not have the answers. We are still far away from fully understanding the way that endometriosis is causing infertility.
Hysterectomy is not a treatment for endometriosis
In endometriosis, the endometrium is found in places outside the uterus. Therefore, removing the uterus and or the ovaries is not going to treat the symptoms of endometriosis. We must also destroy the lesions of endometriosis outside the uterus.
Endometriosis is an organic and not a psychological disease
Endometriosis is an enigmatic disease. Is the result of complex and intricate interactions of genetics, environmental and molecular mechanisms. It is a truly multifactorial disease.Although women with endometriosis report more frequently psychological problems, due to pain or infertility, these are the results and not the cause of endometriosis.
Miscarriage does not cause endometriosis
There is not scientific evidence or indication linking either a spontaneous abortion or a termination of pregnancy with subsequent development of endometriosis.
Vaginal douching does not cause endometriosis
There is not scientific evidence linking endometriosis with vaginal douching. Those claiming the opposite confuse endometriosis with endometritis. Endometritis is an infection of the endometrium, that can be treated with antibiotics.