"We're not mad, we're sick"

Ana Ferrer and Soledad Domenech, secretary and president of Adaec, at an event to raise awareness of endometriosis.
Ana Ferrer and Soledad Domenech, secretary and president of Adaec, at an event to raise awareness of endometriosis. / SUR
  • It affects more than 10 per cent of women of fertile age but endometriosis, characterised by painful periods, is still very much an unknown illness

  • Soledad Domenech and Ana Ferrer President and secretary of the Aedec association

Endometriosis affects more than ten per cent of women of fertile age, but this abnormal growth of the endometriotic tissue, which can cause damage to different organs, continues to be a silent epidemic whose sufferers face a lack of understanding and late diagnoses.

The president and secretary of the Adaec Association of Women Affected by Endometriosis, Soledad Domenech and Ana Ferrer, both of whom are from Malaga, say multidisciplinary units are needed to detect and provide specialised attention for the illness. One way of raising awareness, the International Endometriosis Week, took place from 3 to 11 March.

Many women with endometriosis don't know that they have it. What are the symptoms?

Ana Ferrer: It is characterised by crippling periods. Nothing can relieve the pain and it leaves you helpless. Depending on how advanced it is, it can also cause infertility. Oral contraceptives can sometimes help, but when you stop taking them it is dreadful again. Many women have renal colic without stones and gastrointestinal pains, but the main symptom is inexplicably heavy periods: very painful menstruation which is not eased by analgesics.

It is still hardly known, and on average it takes between eight and ten years to diagnose. Why is that?

Ana Ferrer: One of the main reasons is that medical staff don't know much about it either. The problem begins with GPs, because if a girl complains about period pains the doctor prescribes Ibuprofen. It would be easy to stop this illness at an early age, but we are taught that periods are painful and neither parents nor teachers take any notice of the girls when they say they can't go to school or do something because of the pain. Because we normalise this pain, it can take a long time to diagnose.

So it's also a cultural and educational problem.

Soledad Domenech: When you say you have period pains everyone tells you it's normal, even though some people suffer worse pains than others. You even believe it yourself, and put off going to the doctor. A lack of knowledge has resulted in women being diagnosed with haemorrhoids, Crohn's Disease and other things, even depression. Endometriosis is hard to pinpoint unless it results in a large endometriotic cyst.

Do you think sexism is a reason why there is so little research, and why the illness is so invisible?

Soledad Domenech: Of course. It is an illness which only affects women. Obviously that will have an influence on whether men research it any further.

Ana Ferrer: Medical androcentrism is largely to blame for the lack of research and interest in early diagnosis. It's easy to say “you're hysterical” because of course that comes from 'hystérie' and means uterus. There is also clear gender discrimination in the Social Security Law, because it does not include different degrees of endometriosis. A total hysterectomy isn't considered mutilation, but the amputation of a testicle is.

You said earlier that people in general believe that menstruation has to be painful...

Ana Ferrer: Periods are uncomfortable or painful but are bearable. You take an analgesic and it goes away, just like toothache does. But women with endometriosis have periods which last much longer and hurt a lot more than healthy women.

Soledad Domenech: Periods are uncomfortable or painful, but if they incapacitate you there is a problem behind it. When the pain isn't relieved by Ibuprofen you have to take notice, because it could be endometriosis or another gynaecological illness. That's why we are calling for early detection. You have to listen to girls who tell you their periods are so painful they can't go to school or do PE. Early detection means that a stage one illness doesn't become stage four, which can cause all sorts of medical complications.

Which organs can be affected by uncontrolled growth of endometric tissue?

Ana Ferrer: All of them. The genital area is most common, with ovarian cysts, or the fallopian tubes, but the tissues also travel through the bloodstream or lymphatic system and can reach the intestines, colon, lungs, rectum, kidneys, liver...

It is ironic that there should be so little information about such a relatively common illness.

Soledad Domenech: There is a contradiction, obviously. Endometriosis is still hardly known but one out of every ten women suffers from it.

Ana Ferrer: Many women die never knowing that they had it, but it is an illness which can lead to others such as fibromyalgia and cardiovascular accidents.

What effect does this lack of knowledge and late diagnosis have?

Ana Ferrer: We start to think we're going mad. We lose jobs and partners. Many of us find sexual intercourse painful, or afterwards, because of the contractions of the uterus after orgasm, but our partners don't know what's wrong with us because we don't even know that ourselves. There are doctors who issue sick notes not because of deep endometriosis, which is something recognised by the World Health Organisation, but for premenstrual syndrome. Imagine the consequences when a boss is given a certificate saying you are off work with premenstrual syndrome.

Do you think menstruation is still a taboo subject?

Soledad Domenech: Unfortunately yes, even for some women themselves. There is nothing to be ashamed of. We have to talk more about menstruation and infertility, and never normalise the constant pain which makes us turn to drugs like opiates or morphiates which stop us going out, working, partying and so on. People around us often don't understand that situation, and that is because there isn't enough information. We're not making it up. It is a misunderstood and unknown illness, even medically. We're often prescribed anti-depressants. We're not mad. We're sick.

What do you want from the authorities?

Soledad Domenech: We want the Junta de Andalucía to put into practice the attention guide for patients which has existed since 2009 and just been updated. It does no good for anybody if it is just left in a drawer. We also need multidisciplinary units, because this is not an illness which remains in the reproductory apparatus; in its third and fourth stages it invades other organs of the body.

Ana Ferrer: The main thing is for the established protocols to be applied and for more research to be carried out. The Junta de Andalucía has also promised us provincial teams which can cover up to stage three.

What is the situation in Malaga?

Soledad Domenech: In Malaga we have Dr Emilila Villegas, who is a benchmark in Spain. Thanks to the Da Vinci surgical robot she and her team are operating on some cases of endometriosis and obtaining good results without organs being lost. Malaga is a pioneer in clinical tests thanks to this team, to such an extent that patients from other provinces are being referred here. Now the problem is that Dr Villegas' team are stretched to the limit.

Ana Ferrer: Dr Villegas has put an end to the ordeal for many of us, but there are still not enough operating theatres and consultations only take place one day a week.