The pain associated with endometriosis It has been described as one of the worst feelings a person can experience. it is chronic gynecological disease It is characterized by the growth of the tissue that normally lines the inside of the uterus, outside of it. Foci of endometrial tissue can be found in different parts of the body, such as ovaries, fallopian tubes, intestines, bladder and even on the skin. Although its causes are still unknown and different hypotheses have been raised, one of them is the migration of endometrial cells through blood vessels or the lymphatic system. The disease can cause pelvic pain, pain during menstruation or sexual intercourse, infertility and other symptoms that can significantly affect the quality of life of patients. Often, patients compare it to the pain felt during an attack of appendicitis or labor contractions. “The pain is unbearable. It takes your breath away, it makes you dizzy. It’s like someone is stabbing you repeatedly in the abdomen. And what’s worse is that you not only suffer physical pain, but also psychological pain from helplessness and uncertainty, realizing that you are she is responsible for you moving away from the people you love the most and imagining that, one day, this will come to prevent you from getting out of bed”, guarantees María Molina.

She was diagnosed with endometriosis twelve years ago, but her ordeal began much earlier. “I remember the first time I got my period. I was 11 years old and in my room, writhing on the bed as my mother tried to calm my screams in pain. At the time, I had no idea that that pain would be the beginning of a battle that would last for years,” recalls María. Since then, all of your the periods were very profuse and accompanied by pain so intense that it made it impossible for her to attend classes or lead a normal life. “Sometimes they had to take me to the emergency room for an injection. The doctors told me that the rule was like this: it hurt and bleed. When I was 15 I had surgery and they removed some chocolate cysts. In 2011, when I was getting married, it was the first time that endometriosis was mentioned to me. It was then that they operated on me for endometriosis on both ovaries and did a myomectomy under the abdomen for an open side-to-side operation on the hip,” she says.

crippling pain

precisely, the menstrual pain It is the most common symptom of endometriosis. “It usually goes unnoticed because society tends to normalize it. In fact, most patients who come to the consultation are women who have suffered from this condition for years and have normalized their menstrual pain without advancing the diagnosis. Although many women experience pain during menstruation, those with endometriosis often describe menstrual pain that is much worse than normal and increases over time,” says gynecologist Miriam Al Adib Mendiri. And that’s it, normal menstrual pain may feel like a sharp or cramping pain in the lower abdomen, but the pain of endometriosis is different. It is a more intense, lasting, and sharp pain that radiates through the body. It can also cause pain during sexual intercourse, during bowel movements or when urinating.

“This intense menstrual pain is an invaluable wake-up call for healthcare professionals because it allows us to perform this early diagnosis It is so necessary to establish an individualized treatment that allows stopping the situation before the pain turns into more complex conditions such as neuropathic pain and guaranteeing that the patient has a good quality of life”, guarantees the specialist. And is that, the main risk of delaying diagnosis and adequate treatment is the chronicity of symptoms. In some cases, the pain is so continuous and for so many years that it persists despite receiving adequate treatment. It “centralizes”, that is, the brain gets used to it.

Another obstacle that professionals face is the symptom variability. “There are women whose fertility is affected, others who experience pain, others who suffer from both symptoms and others who are asymptomatic. Not all endometriosis is the same,” she points out. The evolution of this disease, which is unpredictable, is also a challenge. “The natural history of the disease says that sometimes it remains stable, sometimes it gets worse, and sometimes it gets better. There is no way to predict”, says the doctor.

endometriosis and infertility

In María’s case, the disease worsened both clinically and in the marital context. And it is that, after their marriage in 2011, María and her husband tried to become parents, but their efforts did not give the desired results. “My husband wanted to be a father at all costs. We tried tirelessly for three years, but to no avail. In fact, I felt a lot of anguish and frustration because I knew the problem was my ovaries”, explains María. According to Ana Lombardía, a psychologist specializing in sexual health and well-being at Womanizer, it is common for women with endometriosis to suffer anxiety, stress, low self-esteem, bad mood or even depression… It is the result of this constant struggle with pain. “On a sexual level, it is quite frequent lack of desire, pain during penetration and difficulty reaching orgasm’ he argues.

María’s situation worsened in 2014. “Doing theater in Mérida gave me a lot of pain. I was hospitalized for 28 days. I had laparoscopic surgery for left salpinguectomy, partial ovariectomy and endometriosis. And they induced me into menopause. The gynecologist then told me that due to my deep endometriosis, my chances of becoming a mother were practically nil: 1%”, details. Her husband did not consider that this percentage could give him the slightest hope of fulfilling his dream of becoming a father and she returned to Castellón, leaving María in the hospital. In October, upon receiving medical discharge, María decided to look for him. “It was bad, I was alone, but I had to,” she says.

Sometimes, in the darkest moment, the best decision is to step up and take control of your life. In María’s case, this decision turned her unhappy situation around 180 degrees and, as fate would have it, in the most unexpected way. “I took a Blablacar and, on the way, I told my story to the guy who was driving. I felt in him the support, understanding and affection that I lacked so much. We fell in love six months ago I got pregnant with Erika. Three years later, from Lolo. Gynecologists could not explain it to her, ”he recalls fondly. And it is that, in addition to pain, infertility is one of the most common symptoms of endometriosis. It is estimated that between 30% and 40% of women with endometriosis are infertile. However, experts emphasize that today this does not mean that they cannot have children. Assisted reproduction techniques allow these patients to achieve a safe and full-term pregnancy. Miriam Al Adib Mendiri explains that there are very affected women who become pregnant and others who do not. “It could be due to the poor quality of the egg, the oxidative stress that this disease causes, changes in the endometrium, the existence of scar tissue in the tubes that prevent them from working well and collecting the egg well… the cause could be any of these ’ he says.

Today, after almost 30 years of pain, treatments and interventions, Maria continues to deal with the symptoms of endometriosis. “In 2021, they sent me from Mérida to Madrid to be treated in a specialized unit. Then they intervened again and, currently, I only have one ovary to delay menopause. But I continue to suffer intense pain that makes it impossible for me to walk, that annuls me. The pain shifted to my pelvis. In a week they will do a hypogastric plexus block to relieve pain in the pelvis,” she says. And he criticizes: “It’s always not knowing, not living because I’m not sure at any point if what they’re doing to me will have an effect. I go like a puppet from one hand to another. And all I want is to get rid of the pain so I can live and stop pulling away from the people I love the most.

social misunderstanding

Another challenge reported by patients is the misunderstanding of the disease, both in society and among the medical community. “I feel very misunderstood. Pain cancels you out, but no one understands you. In fact, not even the medical courts. They discharged me because they didn’t consider that endometriosis was a reason for absence from work. It’s very sad, because at 41 I find myself totally disabled”, laments María. This same opinion is shared by gynecologist Miriam Al Adib Mendiri. “We have advanced in seeing endometriosis as a systemic disease, where we take into account other morbidities and other diseases that may be associated with it relatively frequently. It has also been a success to understand the multidisciplinarity in patient management, where there are several professionals, not just gynecologists, who approach the treatment. But there are still cases where the disease has not been diagnosed because menstrual pain is considered normal, ”she concludes.

To the
social media are facilitating understanding with these patients. At least that’s how Ana Lombardía considers it. “I think that social networks have been essential in recent years to publicize how endometriosis affects psychologically, as it has made many problems visible and that patients can feel identified and understand what happens to them. Countless influencers and actresses -from Emma Roberts, Alexa Chung, Marta Pombo, Sara Sálamo or Lena Duham- have reported in their profiles that they suffer from endometriosis and that means that it is no longer something to hide and be ashamed of, a problem that is fundamental to coping with any illness or disease. In addition, films and documentaries about the figure of Marilyn Monroe, who suffered from endometriosis, have also given a great “boost” to the visibility of the disease and how it affects the daily lives of these women”, applauds the psychologist who collaborates with Womanizer .