The invisible illness

Endometriosis sufferers at the Materno hospital in Malaga where they believe the unit dealing with the illness needs strengthening.
Endometriosis sufferers at the Materno hospital in Malaga where they believe the unit dealing with the illness needs strengthening. / A. G.
  • Endometriosis affects more than ten per cent of women of fertile age, but it continues to be an almost unknown and invisible condition

“Endo what?” The diagnosis of endometriosis, which is nearly always late, comes as a blow to thousands of women like 41-year-old Ana Ferrer from Malaga, who spent a very long time consulting different doctors before finally discovering what was wrong with her. “For years, they made me think I was mad. They even sent me to a psychiatrist,” she says.

This condition, which consists of a growth of the endometrial tissue which covers the internal layer of the uterus, affects more than ten per cent of women of fertile age, according to the most cautious estimates. There is no cure for it, and the symptoms vary. Some women have none at all, while others suffer pain similar to nephritic colic or even a heart attack. The general lack of knowledge about the problem and its association with menstruation means that sufferers are often ignored and diagnosis can be delayed by an average of eight to ten years.

Fed up with being dismissed by part of society and the medical community, some of the women affected by endometriosis have set up a group in Andalucía and are ask ing the regional government to draw up a plan for this illness.

They want units manned by specialists to be opened in each province and a multidisciplinary team to be set up to treat the most serious cases. Several sufferers from Malaga are due to meet the general director of the Sanitary Assistance department of the Andalusian Health Service, Juan Tomás García, in Seville, and they will propose that this multidisciplinary team should be based in Malaga due to its strategic location.

Until now, the provincial unit has consisted only of one consulting room and a specialist at the Materno hospital.

The endometrial tissue depends on the hormones of the menstrual cycle, which is why the discharge and bleeding coincides with periods. Most women have grown up being told that they are exaggerating and that their symptoms are nothing more than “normal” period pain.

It was insinuated to Ana that her attacks of pain, which were sometimes so bad that she fainted, could be due to a sexual injury. A doctor told Julia she had gastroenteritis. Izarbe, whose uterus has had to be reconstructed, was told that her test results were “perfect.”

Endometriosis is benign initially, but the growth of the tissue can reach different organs and cause slight, serious or even fatal injury to the ovaries, intestines, bladder, stomach or lungs.

A guide published by the Andalusian Health Service confirms that it is a chronic illness with no known cause, and recommends that treatment should depend on individual cases. The different symptoms makes diagnosis difficult, and the condition is often only discovered when a woman is unable to become pregnant.

The health service admits that it has sometimes taken 12 years from the first symptoms to a definitive diagnosis. Women who come from families where others have also suffered from the problem have six times as much chance of developing it than others.

Risk of heart attack

Women with endometriosis are at greater risk of myocardial infarction, cancer, fibromyalgia and angina, according to a recent study carried out by the Brigham and Women’s Hospital in Boston.

Although this is one of the most common gynaecological conditions and one which some specialists believe could be the cause of half of all infertility cases, research into endometriosis is still in the embryo stage, a situation which many womens’ associations attribute to the ‘machismo’ which has existed in medicine for decades.

Because of the lack of research, society in general has accepted that menstruation is painful, a belief which is deep-rooted in our culture and means that many women do not consult a doctor about problems related with their periods even though experts insist that intense menstrual pain “is not normal.”

The principal problem with endometriosis is the formation of cysts which can cause pain, vomiting, cramps, constipation, depression, tiredness, discomfort when urinating and during sexual intercourse, excessive bleeding during menstruation and diarrhea, among other symptoms. When the illness is badly diagnosed, the treatment often involves anxiolytics and sedatives.

The Association of Endometriosis Sufferers says that scientific androcentrism “has perpetuated the discrimination and invisibility of women in medicine,” and it urges doctors to take a more gender-conscious perspective to achieve “equality in health” and overcome the idea that the pain is related to menstruation.

The lack of attention given to endometriosis reached the Spanish parliament last week, with a proposal by the Unidos Podemos political party which was approved unanimously.

The proposal, which described the condition as a “great silent epidemic”, called for a national strategy, with the agreement of the regional communities, to improve the way the illness is dealt with and increase the funding for research.

In 2008 the Observatory of Women’s Health had already produced a guide to treating women with endometriosis, but the associations of those affected say that most doctors are still unaware of its recommendations.

Endometriosis is classified into four levels of severity, a system developed by the American Society of Reproductive Medicine. These range from small lesions to serious health problems which can result in organs having to be removed, temporary or permanent disability or even death. Although there is no cure yet, early diagnosis is key to preventing complications and minimising symptoms.

Among the illnesses and consequences associated with endometriosis are infertility, chronic fatigue, continual pelvic pain, arthritis, cardiovascular accidents and hypothyroidism, a collection of risks which women who are affected consider “more than enough” for the administrations to put measures into immediate effect.