Four women who have been seriously affected by endometriosis, where at least one of their vital organs has been affected by it, tell their stories to raise awareness of the need to consult a doctor when suffering from intense period pains, and to call for greater specialisation and faster and more effective diagnosis. Some decided to become mothers before they discovered that the condition had made them infertile, and they have all lost jobs and partners because of a lack of understanding. “People think we just have simple period pain and are exaggerating, when in reality we can bearly move,” they say.
Izarbe Bernués, who is 27, lives in Benalmádena. She has become addicted to morphine as the result of treatment for her pain. The first symptoms began in her teens. “Once a week, I would be in the Emergency Department,” she recalls. Her temperature went up to 42.1º, but her analyses showed no infection. After being diagnosed, she was treated with Danatrol, a hormonal medication to induce the menopause. It made her body hair grow, gave her insomnia and hot flushes. She has also taken Lyrica, Dolantina and Tramadol, as well as morphine hydrochloride: “I’m a complete junkie,” she says. She has had about a dozen operations, including one to reconstruct her uterus, because of the nodules throughout her body.
Elisabeth Santaolalla is 30 and suffered an ovarian complication as a newborn baby. Most of the doctors she consulted attributed her pains to those problems. “My first period was terrible, really painful, and that is how my life has been since,” she says.
She has had several operations, including the removal of her ovaries. Before being definitively diagnosed with endometriosis after a laparoscopy, a doctor told her the problems were caused by internal hemorrhoids. He had to close down his clinic when she was later found to have 11 tumors in the colon, rectum, kidney and bladder, among other organs. Her fallopian tubes had to be removed and she suffers from joint and muscle pain, in addition to fibromyalgia, menopause, early osteoporosis and hypertension. “What hurts most is knowing that many of those conditions could have been prevented if I was diagnosed earlier,” she says.
Julia Méndez is also 30 years old. She was born in Argentina and has been living in Spain for over a decade. She is an exception. She was diagnosed during her teens, although at that time treatment was limited to analgesics.
The pain decreased when she was pregnant, but returned years later, accompanied by heavy menstrual bleeding and anaemia. Even though she had been diagnosed with endometriosis in Argentina at a young age, in Spain she was told her pain was due to gastroenteritis and wind. Shortly afterwards, two cysts measuring six and five centimetres were discovered in her ovaries. The treatment resulted in a chemical menopause and depression.
“I wanted to go out, to spend a day with no pain, to have sex, live a normal life, but it was impossible,” she says. The cysts had grown larger, injuring her intestine. Julia, who becomes tearful when she recalls the days when she couldn’t take her son to school “because the pain was so bad I couldn’t get out of bed,” has been on the waiting list for surgery for more than three months, despite being classified as a priority.
Ana Ferrer was sent to see a psychiatrist. The doctors believed she was exaggerating her pains, which began when she started menstruating. “I kept fainting at school, and I only weighed 42 kilos. They took me to several health service and private doctors, but nobody realised what was wrong with me,” she says. When she became pregnant at the age of 20, the pains diminished in intensity but soon afterwards they came back “and were five times worse.” A gynaecologist at the Materno hospital, who has now retired, finally diagnosed endometriosis. “He saved my life,” she says. Two cysts measuring 11 and 17 centimetres were found in her ovaries. She had appendicitis and acute peritonitis and she was prescribed Decapeptyl, a medication used for prostate cancer and in assisted reproduction treatments to control ovarian function. Now she has relapsed again, after several months without serious complications.
“It is an illness that destroys relationships, because the treatments and drugs cause mood changes and there are times when it is impossible to have sex. People around you can’t understand. They think you’re being feeble because you can’t put up with period pains,” say these survivors, who are keen to raise awareness of this condition.