“Normalization” of menstrual pain delays diagnosis

The second period brought me to the emergency room. Irene Atienza. She spent years with severe intestinal cramps, trips to the toilet every time she menstruated, and discomfort in sexual relationships. She was told that menstrual pain was normal, although sometimes she could not even walk.

One day she was about to be operated on for appendicitis: “In the hospital, my period started. The doctor asked me if this was why I was in pain. He replied that I needed to be stronger because periods hurt.” While working as a medical assistant in a gynecology service, she also heard colleagues tell her that what was happening to her was normal, as if this pain was the price she had to pay for the simple fact of having a female reproductive system. While she didn’t feel one of these severe and constant pains, they decided to take her to the operating room. They opened her up and finally saw that what they called “normal” was endometriosis, a disease that she had already lived with for 17 years.

Now her goal as public relations secretary of the Spanish Association of People Suffering from Endometriosis (ADAEC) is to ensure that women do not have to wait so long to receive a diagnosis that will lead to effective treatment.

Last September, the Spanish Society of Contraception presented the Contraception 2024 study, which showed that up to 40% of women have difficulty leading a normal life due to pain and bleeding during menstruation. And nearly half (46.3%) of participants aged 15 to 49 required medication every month to cope with this pain.

Another survey conducted by journalists Maria Zuil Navarro and Antonio Villarreal and published in Bleeding Half (KO Books) found that nearly half of women rated their pain greater than 7 (range 8 to 10) on the worst day of their period, with a score of 10 meaning they felt unable to “do any activity and/or need to take painkillers.” . “Only 39% lived a normal life every day they had their period.

A percentage of them – about 8% according to the SEC, 1-5% according to the Ministry of Health – suffer from endometriosis. It occurs when tissue normally found in the lining of the uterus migrates and grows in other places, such as the ovaries, fallopian tubes, or other organs, causing life-altering consequences for those who suffer from it, such as chronic pain, gastrointestinal disorders, intestinal tract or other organs. infertility.

Although the time has been reduced, 35.9% of patients diagnosed with endometriosis or adenomyosis are still diagnosed less than five years after their pain began. 39.3% – from five to ten years, and every fourth (24.8%) – more than 10 years.

“Like cancer, but it’s not cancer”

Diagnosis Maria Isabel Pelaez She was admitted to the emergency room by a gynecologist when she was 22, but her ordeal began at 13 when she got her first period. At school they didn’t think it was normal for a girl to be bored so much, but her parents always understood her: her daughter had to carrytriple fat pack“to go to the center because of the bleeding he was having. And, of course, you can’t lie about it.

In the small town of Toledo, there wasn’t a month when his mother or father didn’t have to take the car to go to the emergency room. Later, as an adult, she went to live in Madrid. It was in the capital that the diagnosis was made. He still remembers the specialist’s words. “He told me: you have endometriosis. This is a chronic disease and instead of progressing, it is degenerative, like cancer, only it’s not cancer“.

He had previously heard this word from a pediatrician, but not a single gynecological specialist confirmed this. “The diagnosis is often made late because the symptom is menstrual pain. And severe dysmenorrhea is sometimes frivolous,” he admits. Alicia Hernandez GutierrezHead of the Gynecology and Obstetrics Service at the La Paz University Hospital in Madrid. Another reason explaining this delay is that in addition to digestive symptoms, there may be other atypical pain in the intestines or urinary tract, which can be confused.

In the small town of Toledo, there wasn’t a month when his mother or father didn’t have to take the car to go to the emergency room. Later, as an adult, she went to live in Madrid. It was in the capital that the diagnosis was made. He still remembers the specialist’s words. “He told me: you have endometriosis. This is a chronic disease and instead of progressing, it is degenerative, like cancer, only it’s not cancer“.

He had previously heard this word from a pediatrician, but not a single gynecological specialist confirmed this. “The diagnosis is often made late because the symptom is menstrual pain. And severe dysmenorrhea is sometimes frivolous,” he admits. Alicia Hernandez GutierrezHead of the Gynecology and Obstetrics Service at the La Paz University Hospital in Madrid. Another reason explaining this delay is that in addition to digestive symptoms, there may be other atypical pain in the intestines or urinary tract, which can be confused.

“A woman who has severe pain does not normalize it, her life is bad, but she had a lot of consultations and was not given an answer,” the specialist adds. Overall, he said, there is much more awareness among the medical community today than there used to be.

Investigation

Recent research is examining the causes of endometriosis and why some people are more susceptible to it than others. Now, says the head of the gynecological service of La Paz, a lot of basic research is being carried out. “It was discovered somewhat late. The pathophysiological basis is not fully understood, although we know that it is a very inflammatory disease. Research directions are moving there,” points out the professional. “However, the translation of this research to the clinic and to treatment is another step that still has a long way to go,” he laments.

He pelvic examination, transvaginal ultrasound, MRI or laparoscopy These are the tests that are commonly used today to confirm the disease. The latter is an operation involving a small incision in the abdomen.

Naming it brings relief to patients who have been suffering from it for many years, although there is still no definitive cure. Most patients are prescribed hormonal contraceptives, such as the pill, vaginal ring, or IUD. These hormones reduce estrogen levels and slow the growth of endometrial tissue, which helps relieve pain. But it doesn’t cure.

Some studies have also shown that lifestyle changes can help manage endometriosis pain. For example, a study published in 2012 found that women with endometriosis reported a reduction in symptoms after switching to a gluten-free diet. Other research suggests that eating anti-inflammatory foods such as fruits and vegetables and limiting caffeine may also help relieve pain.

What about the birth rate?

The fact that there is nothing that can stop pregnancy can be a problem for patients suffering from this disease who want to become pregnant. “My illness has not improved. I remained the same. Currently, treatment is pills or IUDs, painkillers when it hurts, and running,” says Maria Isabel, emphasizing that the problem “fertility is another melon“Fortunately, despite only being given a 40% chance of getting pregnant, she managed to do so naturally through in vitro fertilization. She thought it was gastroenteritis, but no. She needed two fortune tellers. cheap, for some they didn’t believe it, for others it’s more expensive – to understand that yes, she will have a child, even if she has not completed the process.

“We as professionals need to think a little about the future with the patient and plan for her fertility to the extent we can and according to what she wants, because everyone has different social or life circumstances. We need to evaluate a patient with endometriosis,” says the gynecologist. Knowing that the disease reduces the quality of oocytes, we can consider the possibility of storing them.

“If we make an early diagnosis, at the first period, and tell these girls that 50% of patients with endometriosis may have fertility problems and can be referred for conservation, it may help us in the future to put an end to this problem.” A little. But without this early diagnosis, we cannot inform, prevent or treat. We find women over 30 diagnosed who can no longer be mothers, as in my case,” says Irene Atienza.

At 34, she had her uterus removed. He had been with his partner for 10 years but was the visible face of the disease. stopped them from continuing to ask when the baby was due. Many other women don’t do this: they tolerate comments about wanting to become mothers and hide their endometriosis so as not to talk about it. “It’s very difficult for them,” he says.