Endometriosis: warriors against pain and silence

Endometriosis: warriors against pain and silence
Report
Emilia Laura Arias Domíngue

According to the Association of Women Affected by Endometriosis (ADAEC), more than two million girls and women suffer from this condition in Spain, yet there is a shortage of specialized medical units and institutional help. Experts attribute their ordeal to the delay in diagnosis, and this to the fact that it is a women’s pathology.

According to the Association of Women Affected by Endometriosis (ADAEC), more than two million girls and women suffer from this condition in Spain, yet there is a shortage of specialized medical units and institutional help. Experts attribute their ordeal to the delay in diagnosis, and this to the fact that it is a women’s pathology.

Concentration in reporting deaths from endometriosis *

Alicia Martínez Novillo is 34 years old and has already had 8 operations. She will wear a colostomy bag for life because she had part of her intestine cut out in one of those operations. Her illness has caused her to lose jobs, partners and her quality of life has deteriorated. “It hurts like I’m being stuck with needles.” Alicia has endometriosis, a disease that involves the abnormal growth of the endometrium, the tissue of the uterus. Yours is a severe, Grade IV case. Normally, it spreads through the abdominal capacity and other places where it should not be, but, as explained by Pere Barri, head of the interdisciplinary team that attends to these patients at the Dexeus Institute in Barcelona, “it can reach the lung, the rectum, the liver… It takes about seven years on average to diagnose this disease, although for some affected people it may even take decades. According to the experts, an early diagnosis would save many women pain, but the absence of specialists, specialized centers and funds for research make the path more difficult.

They are fighters against pain. Conservative estimates are that one in ten women between the ages of 15 and 49 suffer from endometriosis, that is, 10%. According to the Association of Women Affected by Endometriosis (ADAEC) there are between two and two and a half million girls and women with this condition in Spain.

Irene: “I felt judged. They even told me that I might have used a menstrual cup or that I might have been promiscuous”.

Francisco Carmona, head of gynecology at the Clinic in Barcelona, says that between 10 and 15% of the patients have very acute pain: “It is a disease that invalidates in a tremendous way,” he highlights. In less than half of the cases it is necessary to operate to remove the tissue that has grown and about 40% of women with endometriosis become sterile.

Irene Aterido is one of these women. In three countries of the European Union they did not know how to tell her what was wrong. She was diagnosed 18 years after her first period. Irene felt sick after a night out, thought it might be gastritis and went to the emergency room. “They even told me it was anxiety and I need to find the Best ways to manage stress and anxiety… then they said it was peritonitis and sent me home with ibuprofen,” she explains. “I had a gut like a seven-month pregnant woman and after five days I went back to the hospital because I couldn’t take it anymore. They asked me if I wanted to be a mother and I had surgery… I had my fallopian tubes removed because that was what my life was about.

She tells her story with medical precision and complains that “less than half of gynecologists know about this disease”. “Those of us who are in associations become active patients and almost experts on the subject,” she says. Irene, who belongs to the ADAEC, believes that if this “affected men, a cure would have been found long ago.

Carme Valls-Llobet, an endocrinologist who has been directing the Women, Health and Quality of Life programme at the Centre for Health Analysis and Programmes for 20 years, says that research into the causes has fallen by the wayside: “Its causes are not only genetic, but also include environmental pollution, especially dioxins from incinerators, and physical and psychological stress that alters the level of oestrogen, i.e. strenuous working conditions, changes in working hours. We don’t follow the rhythm of the day, but the rhythm of our work,” he says.

Eternal diagnoses

Mª Ángeles Poveda is president of the ADAEC. It took 17 years and several operations until she was diagnosed with endometriosis at 29. Now, at 37, she has been operated on twenty times. She lives with the pain and walks with a crutch because in an operation she burned the nerves in her leg trying to clean all the spots of the disease.

Early detection is key to dealing with endometriosis. For this reason, ADAEC is developing information campaigns in schools and colleges. In this association they fight for public health solutions and provide information and advice to patients on nutrition, fertility and other issues. Poveda says that they also try to “facilitate the physical recovery of patients through collaboration agreements and psychological support groups, which is fundamental for them”.

ADAEC demands reference units in all communities, with multidisciplinary teams formed

Alicia Martinez also knows what it means to go from O.R. to O.R. She began to suffer terrible pain at the age of 11. After a journey as a specialist, she was told in private health care that she had endometriosis. At the age of 20 she was operated on for the first time, “supposedly for appendicitis”. The pain continued and with 28 they discovered that she had affected the intestine, the uterus, the ovaries, the rectum-vaginal septum and the bladder. “I grew so big because I didn’t have the necessary tests done in time.” At 29, they cut out part of her intestine.

Among other consequences, Alicia has an atrophied bladder; “I don’t know when I feel like peeing, I’m in diapers on the street, I take a pill for life to control it…” His routine includes visiting rheumatology, fibromyalgia, urology, gynecology, general surgery, etc.

Irene was told that she had pelvic inflammatory disease, which is caused by a sexually transmitted infection: “I felt judged. I felt judged. I was told that maybe I had been too promiscuous to use a menstrual cup. She says that her life was saved but that she underwent “a badly performed emergency operation”. She has pelvic pain, sitting and standing, swelling, and suffers consequences at the sexual level and also in the nervous system. She finds it painful that no one sat down to explain what was wrong with her: “I felt like a madwoman looking for the source of my pain,” she confesses.

Carme Valls-Llobet attributes the ordeal of these patients to the delay in diagnosis, and this one to the fact that it is due to a female pathology: “30 years ago we were told that it was 2 or 3 percent and it turns out to be 10. And she adds that “the period should not hurt; if it hurts a lot and it does not remit with anti-inflammatory drugs, we have to see why”.

Pain without help or support

For Alicia, as for other endometriosis patients, morphine is part of her life: “First I was in pain five days a month, then 25. You faint and vomit, what you want is for them to open you up and take out what’s inside you,” she says. Irene doesn’t keep track of her income from pain: “I had pain from penetration and I bled on my pap smears. Before the operation I was better. Now I have visceral pain, cramps, incontinence, lower back pain. It took me six months after the operation to do an hour’s walk. No one offered him rehabilitation.

The president of the ADAEC explains that the lack of understanding on the part of friends, partners and family “hurts a lot”: “We can be treated as mentally ill because it diminishes you on all levels. You stop going out, making plans… and not everyone understands. They call us hysterical or sick,” she says. This speaks volumes and Voices of Mental Health can help in this situation.

Alicia has lost jobs because of endometriosis. She has been unemployed for five years, lives with her parents and depends on them financially while waiting for the disability she has requested. Meanwhile, she does not receive any public assistance. Mª Ángeles, on the other hand, continued to work as a cleaner and her health worsened because she was doing physical work that she should not have been doing. Irene explains that it would help a lot if the most severe degree of this illness were recognised as “serious and chronic”.

Alicia has lost jobs to endometriosis: “You stop going out, you stop making plans… and not everyone understands that. We are branded as hysterical or sick”

All the interviewees denounce the absence of institutional support. There are very few communities that have units to treat endometriosis: Madrid, Barcelona, Cordoba, Bilbao, Malaga and Valencia are the only cities with specific equipment according to ADAEC. The Ministry of Health, for its part, says that it does not have information on specialized units because that is up to the autonomous communities.

The ADAEC demands that health teams be trained; that there be reference units in all communities, with multidisciplinary teams, and that at least one hospital collect cases at the national level to deal with the disease. “We need specialists in digestion, urology, sexology, physiotherapy, pelvic floor… It’s not just a disease of the reproductive system,” says its director.

“Even the doctors themselves are losing it, there are no means to investigate, these are expensive operations that have to be dealt with by multidisciplinary teams,” says Alicia. Irene complains about the lack of training and coordination and the paternalism of many doctors: “They treat us like children. It’s not normal that they don’t tell you what they’re operating on. She also considers it a mistake to take a one-sided approach: “Endometriosis involves many things. It is a systemic disease. She asks for psychological support because it is a “disabling disease and difficult to fit in because of the physical deterioration it causes.

Not only that. The sexual life of these women is affected and no solution is offered, “while impotence in men is studied and there are a thousand drugs to treat it,” says Aterido.

Menopause and motherhood as treatment

Alicia wants to be a mother, the age of her ovaries is five years older than girls her age and the waiting list in public is 3 years. In the Community of Madrid she is not allowed to do so if she does not have a partner, “as if I were incomplete”, she complains. She does not have the means to do it in a private centre.

Dr. Valls-Llobet is more confident about the benefits of a paraben- and hormone-free diet than about treatments based on contraceptives

Irene sums up her feeling with a phrase: “I went from thinking I was sick of a few drinks to being castrated. I lost the possibility of thinking about becoming a mother. She followed a hormonal treatment and went into a depression: “I couldn’t do anything, nor could I take charge of my life. On another occasion she was recommended to take the pill from 36 to 50; a medicine that has already left the social security portfolio and costs about 30 euros a month.

In some cases patients are offered maternity care as a treatment. Irene was recommended to become a mother so that she could stop the production of estrogen. On other occasions they treat the disease with induced menopause. This is the case of Mª Ángeles, who assures that induced menopause has caused her joint pain and osteoporosis. She has also been treated with antidepressants to reduce the pain: “I came to have agoraphobia and acute psychological problems,” she says.

Dr. Valls-Llobet stresses the importance of “knowing the origin of the problem” in order to adapt therapies. For example, she has witnessed students at the MIR develop the disease during that period, which may indicate that shift changes lead to hormonal changes. Removing the rule “is not the solution,” and “it doesn’t seem that contraceptive-based treatments are working well,” she adds. Instead, she relies on the benefits of a “green, natural, paraben- and hormone-free” diet.

Irene, Alicia, MªAngeles are three of the many women who live a daily struggle with pain, but all three want to make it clear that those who suffer this ailment to a severe degree are not alone: “We are many”.

*Last April, Marta died in Toledo due to complications from her illness, endometriosis. Other “warriors” like her gathered in small groups in cities throughout Spain to learn about each other, to pay homage to Marta and to remind other women that they are not alone in this fight against endometriosis.