Lorraine Martinez he went to bed on a Monday in July, and the next morning he couldn’t get up. For decades, the rule had always arrived, on time, like a sweeping storm. three or four days of bed, vomiting, diarrhoea, cold sweats and disabling pains. She, raised in a family of acute mensesI thought that was “normal”. However, that Tuesday she began to suffer from abdominal pain that paralyzed her and that, from then on, took her from consultation to consultation. “For months, no one could say what was wrong with me.” The following March, they operated on her for fibroids and discovered that what was actually happening to her was called endometriosis: a chronic disease, without cure and silenced –despite the fact that 10% of women suffer from it– that those affected and a handful of specialists are managing to remove not from the broom room, but from the locked basement where it has traditionally remained.
Lorena, 40 years old and unable to work due to the effects of the disease, is today the president of the Association of Women Affected by Endometriosis of Catalonia. And both in her support groups and in her meetings similar stories swirl about the effects of this disorder by which the inner layer that lines the uterus and that is expelled in each menstruation –the endometrium– grows out of its original cavity: whether in the uterus, ovaries, fallopian tubes, intestine, bladder, rectum, or peritoneum.
In endometriosis, the inner layer that covers the uterus and is expelled in each menstruation grows out of its original cavity
A clarification goes ahead: it is not that more than a million Spanish women of childbearing age suffer from these symptoms, but it is that 25% of them – a figure already brutal in itself – suffer from disabling ailments or that penalize their daily life and their work and economic life: from menstrual and coital pain to digestive disorders and infertility. “Let no doctor treat us like crazy again. If you take an analgesic and it still hurts, you should look at it, because there may be an underlying problem,” says Lorena. “So if the doctor tells you that period pain is normal , go to another, because it is not”.
It is not normal
It is not normal, for example, that Ruth Aguayo, a telephone operator, had to take a couple of anti-inflammatories every two hours or lock herself in the bathroom at work until the medication relieved that pain that “doubled” her. Nor that Carol Álvarez, a journalist, got used to sleeping on her knees in a fetal position and writing with her feet on a trash can, folded over her uterus, in order to cope with an infernal pang – “she felt as if she had an alien inside” – for 15 days a month. Not of course that Ana Corcelles, security guard, heard the word for the first time when she came out of an operation in which they had to intervene for a fibroid and ended up removing her uterus when discovering that her body was splattered with tissue.
“Who wants to be next to someone who is always complaining? There came a time when I thought I was making everything up to get attention,” says Ana Corcelles
“Until then, I had never heard of endometriosis. For years, I complained of having spasms, of vomiting in pain, of living badly for 25 days a month. I couldn’t take it anymore, it was unbearable. And after doing an ultrasound, a specialist told me that I only had a fibroid and that it couldn’t hurt me. The disease closed me in on myself. My surroundings did not understand me and I felt ashamed. Who wants to be next to someone who is always complaining? There came a time when I even thought that I was making it all up to get attention”. In the face of persistent pain and misunderstanding, many affected, like Ana, also end up suffering anxiety and depression.
“If men had pain during and after intercourse, as can happen with this disease, we would have had a super treatment for years”
All of these stories – and hundreds of thousands of others – could serve as grand evidence against the minimal credibility that society has conferred on women and the none that science and health have dispensed to the female body. Even more so in an ailment that affects atavistic taboos such as menstruation and sexuality. “Pain and woman seem to go hand in hand since the Bible, when Eva was cursed with the saying that ‘you will give birth to your children in pain and you will pay for your affront in blood,'” the president of the association points out. “And that belief, already inoculated from the family, that period pain is normal is the first obstacle in early detection”.
“Pain and women seem to go hand in hand since the Bible, and the belief that period pain is normal is the first obstacle in early detection”
And then there is, of course, the medical ordealoften a maddening and agonizing labyrinth. On average, diagnosis usually takes nine years., also due to the lack of training and listening skills of professionals. Ruth, for example, and at the insistence of her family doctor, had five ultrasounds over the years until two specialists were able to read her endometriosis. And we have already seen that Ana, with damage to her bladder, ovaries, rectum and intestine, spent years calling her exaggerated.
See the light
“If a woman goes to a consultation 10 times saying that it hurts, she has to be listened to, not belittled. I have had patients who seemed to see the light when, paradoxically, they were diagnosed with a chronic disease with no cure such as endometriosis. Suddenly, someone reassured them that they were not crazy, but that everything that happened to them has a name and a possible treatment,” says Dr. Francesc Carmona, from the Hospital Clínic.
“It is a disease that still generates more questions than answers”, says Dr. Francesc Carmona
A lifeline for many affected when everything else has failed, Carmona points to not insignificant advances such as the fact that, in recent years, Catalonia has trained referents in endometriosis –both in ultrasounds and in diagnosis and follow-up– for the Atenció a the Sexual and Reproductive Health of the CAP.
However, he also admits that much remains to be clarified about this elusive disease of which still the origin is not well known and its evolution is absolutely uncertain in each patient. “It still generates more questions than answers,” admits this international reference who, optimistically, predicts that in this decade more effective treatments will arrive than the current ones, which range between the prescription of analgesics, hormonal therapy to block menstruation or advance menopause, or removal of the uterus.
But do you know? Both affected and specialists agree that, beyond clinical trials, it is also urgent 1/ a good sex education in the obligatory stages, in which mantras are repeated like that the rule should not hurt to the point of invalidating you and two/ deepen the conversation about menstrual health that is also coming from places that were unsuspected until recently, such as the entertainment industry (there are, if not, all the celebrities who have explained suffering from endometriosis or even the film Pixar’s “Red”about a girl’s first period and the almost science-fictional changes that puberty activates) and that pushes traction Legislative initiatives such as that of the Ministry of Equality to include sick leave due to painful menstruation, closely linked as we have seen to endometriosis. “The less secrecy that surrounds our body and sexuality, the better it will be for us,” says Lorena Martínez, president of the association of affected women. “It is clear that if men had pain during and after intercourse, as can happen with this disease, we would have since a super treatment years ago”.