Patients with endometriosis have gone more than 20 years without new treatments

Marina Bonache began to suffer severe pain during her periods four years ago.

Her gynecologist told her that everything was fine;

her hormone levels were normal and nothing showed up on the ultrasounds she had had.

But she did not settle for that answer.

She kept looking, and two years later, at the age of 25, another doctor gave her problem a name: endometriosis.

It is a chronic pathology in which the endometrial tissue grows outside the uterus.

According to Emanuela Spagnolo, from the Spanish Society of Gynecology and Obstetrics (SEGO), it is estimated that in Spain between 10% and 15% of women suffer from this disease, which takes an average of seven years to diagnose, she explains.

And according to Raúl Gómez laments,

principal investigator of the Research Group on Therapies against endometriosis and endometrial cancer of the Health Research Institute (Incliva), for 25 years "the same strategies [generally hormone therapy] have been used, with slight variations, inherited from the latest studies that were done in patients”.

The researcher attributes this to the fact that historically the investigation of the disease has been poorly focused and has focused on knowing how it worked, what the lesions were like, what factors were involved, but they were not so aware of the pain parameters.

"Endometriosis has always existed, but it has been little visible, little recognized," he adds.

with slight variations, inherited from the latest studies carried out on patients”.

The researcher attributes this to the fact that historically the investigation of the disease has been poorly focused and has focused on knowing how it worked, what the lesions were like, what factors were involved, but they were not so aware of the pain parameters.

"Endometriosis has always existed, but it has been little visible, little recognized," he adds.

with slight variations, inherited from the latest studies carried out on patients”.

The researcher attributes this to the fact that historically the investigation of the disease has been poorly focused and has focused on knowing how it worked, what the lesions were like, what factors were involved, but they were not so aware of the pain parameters.

"Endometriosis has always existed, but it has been little visible, little recognized," he adds.

Some 190 million women suffer from this problem worldwide, according to the WHO.

In this disease, the endometrium, which is the tissue that lines the inside of the uterus, is found abnormally outside the uterine cavity.

The woman undergoes menstrual changes in the places where this tissue is inserted, producing cyclical bleeding in these areas without the blood being able to go outside.

This ailment can cause menstrual cramps, excessive bleeding, abdominal pain (which can sometimes be disabling) and problems having children or, directly, infertility.

It is diagnosed by ultrasound or laparoscopy (a minimally invasive surgery), but Gómez acknowledges that it is difficult to identify when it is in an early stage.

Although the prevalence of this disease is high, it is not known what causes it.

In order to live with the disease, Bonache follows a hormonal treatment based on antiestrogens, which reduce the levels of estradiol, the hormone that causes the proliferation of endometriosis, Gómez clarifies.

The problem with these drugs is that they end up inducing "a

that can cause the same symptoms as the climacteric, such as hot flashes, hormonal imbalances and the beginning of osteoporosis," says the expert.

Other options are surgery, anti-inflammatories and opioid analgesics, the last two in mild cases.

limit operations

Between 10% and 15% of women who undergo conservative surgery (without removing the uterus) suffer from the disease again one year later, a figure that rises to 40% and 50% after five years, according to a study published last November.

Now there is a tendency to limit surgical interventions to very specific cases: "It has to be carried out in highly specialized endometriosis centers by professionals from various specialties," says Silvia Iniesta, a member of SEGO and a specialist at the Hospital de la Paz in Madrid.

Marina Bonache, in Girona on December 28.Albert Garcia

In the case of Bonache, with the medication she has been able to control most of the symptoms, although she suffers from dyspareunia (painful sexual intercourse) and has difficulties urinating.

The young woman, who is now 27 years old, came to spend three weeks in bed, "without tolerating even water, from the vomiting that she suffered and the pain."

She suffers from peritoneal endometriosis and adenomyosis (the name she receives when she is in the womb).

"Life has given me a turn," says the Girona, who had to leave her job due to her condition.

“I am a nurse and in my hospital they told me that they could not adapt the position to me because my illness was not serious enough”, complains the young woman, who a year ago got a job in a laboratory.

For her, the hardest part of the disease is having to lead a life "measured to the millimeter" and, even so, not having control of her own body.

She cannot afford exceptions: she must sleep enough, exercise, but not excessively, nor can she skip her medication.

She must also follow a low estrogen diet and visit the physiotherapist and psychologist to better deal with the symptoms of her ailment.

And she wants to be a mother, but for that she has to have everything planned: "It's like you have a discount watch."

Between 30% and 35% of women with fertility problems suffer from endometriosis, says Spagnolo.

This ailment causes the ovaries to function less well and, in many cases, a low ovarian reserve, comments his partner, Silvia Iniesta.

All women can see their fertility reduced from the age of 30, but in the case of patients with this pathology, age implies an even greater risk for those who want to have children.

What helps Bonache the most to cope with her situation is, in addition to the support of her family and her partner, "following people on Instagram who suffer the same thing, seeing people who are the same as me", and the support of the Association of Affected of Endometriosis of Catalonia (Endocat).

Talking with other patients has helped her a lot, she says, in being able to manage the disease and feel fully understood.

In addition, there is the State Association of Affected by Endometriosis (ADAEC), which offers advice, mentions the young woman.

looking for a solution

One of the current goals of experts is the early detection of this disease, says Spagnolo.

The La Paz Hospital, where she works, is developing a project together with European universities to identify this condition in adolescents.

With this, they also intend to train primary care professionals and more gynecologists "so that the diagnosis does not arrive when the patients are older," she says.

"Detecting it in its early stages and treating it from the outset improves the quality of life of those who suffer from it because the pain and duration of the problem will be less," adds Gómez.

There are studies that look for markers in the blood (proteins or metabolites) that make it possible to detect identifiable alterations with the development of the disease.

Until now, none have worked, since, although in some patients they did appear elevated, in others they could be confused with the values ​​of pain caused by other pathologies, the researcher adds.

In addition, he stresses that in these cases only one marker is selected and points out that his team is working on developing a combination that makes it possible to find an algorithm and "can be used to detect most cases."

Other works that are focused on finding the origin of the ailment.

A study published in

this week has allowed these scientists to create an "endometriosis cell atlas" with samples from 21 patients, according to its lead author, Kate Lawrenson.

The researchers hope this finding will help them better understand "the origins, natural progression, and potential therapeutic targets for treatment," says the scientist and associate professor in Cedars-Sinai's Department of Obstetrics and Gynecology.

Regarding treatment, although alternatives to hormonal are being sought, none have yet given results.

Last November a study was published in which a natural component found in olive leaves (oleuropein) had been used to treat endometriosis in mice.

This substance slowed the growth of lesions caused by the ailment, according to the research, published in the

, but it could not be determined if it reduced pain, explains Sang Jun Han, one of the authors and a researcher at the Department of Molecular and Cellular Biology of the Baylor College of Medicine (Houston, USA), which considers that this would be the next step in the research.

Gómez is skeptical about translating the results of this research to humans.

"Mice do not have endometrium and are incapable of developing the disease naturally," he explains;

it must be induced by artificially creating the tissue or implanting lesions in these animals, something that does not fully reflect the real situation, the expert adds.

For Gómez, the future of research should focus on these alternatives because "an anti-estrogen treatment is incompatible with the natural fertility of the patient," he alludes.

Spagnolo is not so clear about it and raises the possibility that these alternatives are useful for only a part of the patients, since "the hormonal factor is the main cause of the disease," he concludes.

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