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Not madness or period pains: it's called endometriosis

Laura, Malika, Jessica and Mari Carmen, at the Materno hospital.
Laura, Malika, Jessica and Mari Carmen, at the Materno hospital. / Ñito Salas
  • Four women talk about the incorrect diagnoses, pain and incredulous comments they have experienced over the years because they suffer from this hidden illness

Laura says it is a "sharp, shooting pain, like someone sticking needles into you". Malika compares it with fire: "You feel as if you are burning inside". Jessica admits that for years she had to self-medicate with Enantyum every four hours to cope with the pain. Mari Carmen believed that "I was going to die if it carried on like that". These women all have endometriosis, and have become very accustomed to hearing people say "Endo what?"

This illness, which is a growth of the tissue that coats the interior of the uterus, affects more than ten per cent of women. Most are unaware that they have it. They grew up thinking that heavy blood loss and waves of pain were normal symptoms of menstruation. A lack of research and general lack of knowledge of the problem, including among the medical community, have meant that it is often not diagnosed for eight to ten years. By then the illness has spread, forming cysts in different parts of the body, from the ovaries to the intestine and even the lung.

These cysts, although benign (non-cancerous) put pressure on different organs and can burst, causing frequent episodes of pain. However, it is not always like that. Sometimes there are no symptoms and the endometriosis, which lies behind a high percentage of cases of infertility and miscarriage, has been classified in four categories: minimum, slight, moderate and severe. The treatment depends on the severity.

In the first two categories the illness is usually kept under control with contraceptive pills or a hormone-releasing intrauterine device (the Mirena IDU). More severe cases need surgery, and this has historically been aggressive, removing the ovaries and fallopian tubes. Now, new technologies mean there is less damage to healthy tissues and the treated organs can be preserved.

She has had three miscarriages and undergone four ovarian stimulations and two embryonic transfers but has not managed to become a mother. “But I want to say that you do cope,” she says.

Jessica, 33: “I didn’t say how much pain I was in because they didn’t believe me”

She has had three miscarriages and undergone four ovarian stimulations and two embryonic transfers but has not managed to become a mother. “But I want to say that you do cope,” she says.

Before being diagnosed, women with endometriosis normally go through endless consultations, tests and uncertainty. Their symptoms are often confused with other problems and they are treated for cystitis, gases, hemorrhoides and even depression. On other occasions they are accused of exaggerating their pains, or are not believed at all. Jessica began to think she was suffering from mental illness.

"I didn't want to tell anyone how much pain I was in because they didn't believe me. My family has always supported me, but nobody understood that this was happening all the time and every ten minutes I would throw myself on the floor because of the pain," she says. A resonance scan revealed that she had "slight endometriomas". The doctors didn't recommend surgery, but she insisted. "I went into the operating theatre thinking I was mad," she says. Although she didn't expect it, they also removed her fallopian tubes and the left ovary because an endometrioma had attached to her uterus and it hadn't been spotted until then. She wasn't crazy after all.

Since 2016 she has suffered three miscarriages and undergone four ovarian stimulations and two embryonic transfers. She recently had her 33rd birthday and is still not a mother.

The other women agree when Jessica talks of her experience. They are of different ages, professions and even nationalities, but they share the same sensation of incomprehension. This illness, they say, affects social and emotional relationships and their work.

A doctor told her mother that she was attention-seeking, but her pains were real: she has had five operations because of the cysts and surgeons removed her fallopian tubes, one ovary and part of the other. She was a young mother.

Laura, 41: “They referred me for mental health treatment”

A doctor told her mother that she was attention-seeking, but her pains were real: she has had five operations because of the cysts and surgeons removed her fallopian tubes, one ovary and part of the other. She was a young mother.

Laura was often signed off work for "menstrual pain" until not long ago. A company threatened to sack her. Now she has managed to get her GP to write "endometriosis" on her certificates. And friends and relatives still say "Endo what?", even though she has lived with the illness all her life. She had surgery for the first time when she was 16. Since then they have removed her fallopian tubes, left ovary, almost the whole of her right ovary and nearly 20 per cent of her uterus and womb. She has had five operations, but even so on one occasion they referred her to a mental health unit, insinuating that she was exaggerating her pains: "They told my mother I was attention-seeking. Even the specialists themselves don't believe you," she says.

After a high-risk pregnancy, Laura had become a mother at a young age (the possibilities of gestation reduce with age), giving birth to a daughter in the seventh month. Now aged 41, she is a grandmother.

Endometriosis is a chronic condition, although if diagnosed in time its development and symptoms, which tend to start with the first period, can be controlled. This is why associations of sufferers have spent years calling for specific training in the medical profession. In 2008 the Women's Health Observatory produced a guide for nurses on treating women with the illness, but many professionals are still unaware of its recommendations.

In addition to the pain, the cysts can cause vomiting, migraines, constipation, chronic fatigue, early menopause, pelvic pain, arthritis, hypothyroidism, discomfort when urinating and having sexual relations, excessive blood loss during menstruation and diarrhoea, among other symptoms.

Malika, who is 34 and comes from Tangier, has lost ten kilos due to intestinal problems caused by the illness: "The worst moment of the day is when I go to the loo," she says. She gets upset as she recalls her unsuccessful attempts to become a mother. "My partner and I separated recently, because of that among other things. I'm always tired and I have no appetite".

Her illness was diagnosed early but she was not given suitable treatment. She has tried unsuccessfully to become a mother and recently separated from her partner, “because of that, among other things”. Now doctors are studying her scan and deciding whether to operate.

Malika, 34: “I have lost my appetite and the will to live”

Her illness was diagnosed early but she was not given suitable treatment. She has tried unsuccessfully to become a mother and recently separated from her partner, “because of that, among other things”. Now doctors are studying her scan and deciding whether to operate.

Mari Carmen, 33, was diagnosed early. She began to menstruate before her 11th birthday and since then her "very painful" periods have been accompanied by vomiting and dizziness. She thought it was normal, until her symptoms became even worse when she started at university. Although at first doctors thought it could be a digestive disfunction, her gynaecologist soon sensed that it could be endometriosis and subsequent tests confirmed it. Hormonal treatment kept the pain at bay and also meant that surgery wasn't necessary.

"I have been very lucky with the specialists who have treated me. The evolution of the illness is highly controlled. I have check-ups, but I basically lead a normal life," she says. Motherhood doesn't feature in her plans at present, "but they haven't told me it would be impossible".

Despite being recognised in 2018 as a benchmark centre for the illness, the Regional Hospital in Malaga has just suspended its operations for severe endometriosis because of a lack of surgeons. The Asociación de Afectadas (Adaec) patients' association has criticised the cutbacks and is calling for the department to incorporate physiotherapy, nutritional and psychology services.

"They send us to a psychologist because they think we are exaggerating our pain, but when we are finally diagnosed and it is confirmed that we have a chronic illness, which is the time we really need emotional support, they leave us on our own," says a spokeswoman. The association also says that scientific androcentrism "has perpetuated the discrimination and invisibility of women in medicine" and wants a gender perspective to be applied to achieve "equality in health" and overcome the normalisation of the pain traditionally associated with menstruation.

Clinical test

She has grade two endometriosis which is kept under control thanks to early diagnosis and receiving the treatment she needed. Now she lives “a normal life” although she has to go for check-ups, and for the moment she has no plans to become a mother.

Mari Carmen, 33: “I was very lucky in terms of the diagnosis”

She has grade two endometriosis which is kept under control thanks to early diagnosis and receiving the treatment she needed. Now she lives “a normal life” although she has to go for check-ups, and for the moment she has no plans to become a mother.

The department in the Materno hospital, run by Dr Emilia Villegas, has gynaecology, surgical, radiology, anaesthesia and urology services and treats around 700 women a year, of whom about 30 per cent need surgery for endometriosis. As well as causing fertility problems, the illness causes adherences and anatomical distortions and alters the immune system. The lines of research so far have been on genetic inheritance and possible treatments with drugs. Dr Villegas' team is also taking part in a clinical test on the effectiveness of molecules which could help to reduce the pain.

"But I want to say that you do cope with it," says Jessica. "It's hard, it's painful, but we have to stay mentally strong and look for the treatment that means we don't end up in Emergencies every couple of days". Her marriage, she says, is stronger, even though one of the doctors she consulted looked at her husband and said "You do know it might stop you becoming a father"?

The other women are not surprised. They have spent half their lives putting up with people questioning their symptoms, erroneous diagnoses, incredulous looks. Even they began to think they were obsessed, crazy, that the pain must be normal but they were exceptionally weak. Now they know that they have always been ill and that their problems have a name and also a treatment. They no longer feel so alone. And they are prepared to answer calmly and patiently the eternal question: "Endo what"?