20 years until the diagnosis of endometriosis: “The pain was so acute that I couldn't stand up”

“I was in so much pain… It was such a sharp pain that I couldn't stand up. “I had to get on the ground.” This is how the story of Inma Menés, vice president of the Association of People Affected by Endometriosis of Zaragoza (Adaez), begins, since it was not until 2011 when the intense period pains, among others, that this psychologist suffered had a name: “It took around 20 years to diagnose me, when I was already 42 years old. I was not a person who did not go to check-ups or who had not gone to specialists to find out the reason for my severe pain, however, it took me two decades to find out what was happening to me. When they diagnosed me, they had to remove my ovary and left tube.”

And endometriosis, which usually has as symptoms not only intense period pain, but is sometimes also accompanied by pain during sexual relations, chronic pelvic pain or can even affect the urinary and digestive system, is a disease, Although it is common, it is estimated that it affects at least 10% of women of reproductive age, it has been “silenced” and “invisibilized.” Of course, at least in Aragon work is being done to leave behind this delay in diagnosis, since in 2018 the Endometriosis Strategy was created, which also brought with it the launch of a Multihospital Unit for the treatment of this disease. , dependent on the Gynecology and Obstetrics Units of the Lozano Blesa University Clinical Hospital and the Miguel Servet University Hospital.

“Before, I think the delay in diagnosis could have been due to not thinking about it, not thinking about endometriosis. Coupled with the fact that it was seen as normal to have pain and it was not consulted or given importance,” explains Yasmina José, gynecologist at the Miguel Servet Hospital. "But in recent years this is changing and work is being done on raising awareness and training, also, for midwives and Primary Care doctors, which in the end is the first contact that patients usually have." In addition, work is now being done to create a form, which is expected to be available in April, which will specify, among other issues, whether there is a history or whether the patient has needed surgery.

“It really is a very common pathology among women between 20 and 30 years old,” José notes. "And since endometriosis is a chronic disease for which there is no cure, because only when menopause approaches, being an estrogen-dependent disease, do the symptoms disappear, we try to treat it, at first, with medication, either hormonal or analgesic. Only in certain cases is surgery chosen, since as young women, if this treatment is chosen from the first moment, too many operations may be needed throughout life and it is not recommended."