There are women who suffer from excruciating pelvic pain. One in ten women, moreover, hears that these pains, disabling in many cases, are “normal” because they are women. But no, this is not normal period pain. Endometriosis is more than that, it is a disease suffered by 1 million women in our country and up to 170 worldwide. Women who live with chronic pelvic pain and who even see their fertility at risk. Women who also live with the misunderstanding that their pain is silenced. With the #HastaElEndometrio campaign we want to put a voice and face to the disease, through testimonies of patients with Endometriosis.
IVI gives a voice to its patients with the #HastaElEndometrio campaign
As we said, what women with Endometriosis suffer -diagnosed or not- cannot be reduced or normalized as pain associated with menstruation. The symptoms of this disease are, as we said, chronic pelvic pain, intense pain during menstruation or sexual intercourse, or when going to the bathroom. These intense pains, sometimes incapacitating, are due to the abnormal growth of the endometrial tissue outside its cavity.
We have been seeing patients for years who come to our consultations after a long journey in which they have taken years to find an explanation for their pain or even who have not yet received a diagnosis. It is important that, both at a social and professional level, the impact that the disease has on the quality of life of women who suffer from it be given the consideration it deserves. Therefore, as a result of listening to our patients and wanting to give them a voice, the #HastaElEndometrio campaign was born. Because yes, ‘we are up to the endometrium’ that the disease is underestimated, when it is essential to act in time in order to limit its consequences. This is an initiative with which we want women who suffer from the disease to tell how they feel, how they live with it.
The importance of diagnosing Endometriosis
“It is possible to act on this disease, although we must not lose sight of the fact that it is highly disabling and that it requires greater knowledge on the part of health professionals, to prevent the patient from getting lost in a spiral of erroneous diagnoses and misunderstanding in her environment. psycho-social”comments Dr. García Velasco, Scientific Director of IVI and specialist in Endometriosis.
This is the case of Raquel, a patient at IVI Burgos and the first testimony we want to tell you about. She is #UntilTheEndometrium that it took several years to tell her what she had. Why did she suffer from pain every month? She went to the doctor’s office and to the emergency room, but the only thing she heard was that they are normal period pain. “Many women who suffer from Endometriosis have had to go to different specialists with the idea of being cured. It is a disease that needs to be more visible, we need to know that the rule does not hurt, that this is not normal “Rachel says.
But also the story of Beatriz, who is up to her endometrium “To see that the years go by and reality improves little. When I hear that other women suffering from Endometriosis are going through my situation and even throw in the towel. Years ago, in one of the gynecological examinations, I was diagnosed with Endometriosis. I lived with a lot of pain during my period, I noticed it even when I breathed. This, accompanied by excessively abundant bleeding and very long periods. No patient with Endometriosis should hear in any consultation that there is no solution to improve her quality of life”.
Endometriosis has no cure, but there are solutions
At a medical level, one of the pending challenges regarding the disease is its early diagnosis. Although it is true that Endometriosis begins to develop when menstruation is regulated, the diagnosis does not come until years later, even if the first symptoms have already appeared. If it is not detected in time and treated, it can lead to a serious stage, the main consequence of which may be the future infertility of the patient.
“Although in recent decades there has been no scientific advance that manages to cure Endometriosis, early detection and early initiation of treatment are essential to prevent the progression of the disease, and today we are able to control a large part of the symptoms and prevent consequences such as infertility, so that no woman should resign herself to the impact of Endometriosis, and for this it is very important that there is information and understanding of the disease at a social level”adds Dr. García Velasco.
If we talk about not resigning ourselves to a hopeless diagnosis, we have to talk about Beatriz again. She is a patient at IVI Zaragoza, but before arriving at our consultations, she received the misunderstanding we are talking about. “After the surgical treatment, when I was supposed to be in the best position to try to get pregnant, they told me I couldn’t do it. That I psyched myself up that I would never be a mother. Until I came to IVI, because now I am the mother of an 8-year-old boy and 5-year-old twins. My conclusion is that, with the help of science, when a woman is determined to be a mother, there is nothing to stop us.
Other women who are #UntilTheEndometrium
As we explained at the beginning, with this campaign we want to give a voice to some of our Endometriosis patients.
Eight years ago, when I was 28, my partner and I decided we wanted to try being parents. Around me I had quite a few people who had had a hard time, that’s why we decided to live it in a ‘calm’ way. The first month passed, the second, the third… It seems normal to you, but when you’ve been trying for a year without success, you begin to think that something is wrong – actually, you begin to think about it much earlier. After a first visit to the gynecologist at Social Security, I was referred to the infertility clinic. I couldn’t believe it… That word scared me so much! Here began my journey of almost 6 years: many appointments, tests, waiting lists… At last you are diagnosed, you know the reason why the long-awaited pregnancy does not arrive: it is called Endometriosis. The disease sounds familiar to you, you’ve heard it ‘glancingly’ somewhere. You don’t know whether or not to read more about it, it scares you how little you know. Because I? When ‘your turn’ finally comes, you begin with fear, but enormous enthusiasm. A cycle, another cycle and another one… Your strength and your head are so at the limit that you consider stopping, accepting and continuing to live as you did years ago. Then a doctor appears, an angel for me, who asks me to please go to IVI. We hesitated a lot, but in the end we decided to take the risk and try it one last time. First cycle at IVI, first transfer and, at 9 months… Julia, our little great revolution. Now, 18 months later, 12 weeks of life inside me again. I will never have enough words of gratitude for Dr. Guillén and all his colleagues.
Before finishing I want to look back, because this story did not start 8 years ago. It starts much earlier, when I was still almost a child and learned to live with super abundant periods, very very painful and even disabling. Due to ignorance in my house those pains were normalized. Periods were thought to hurt… Too bad. Although I do not blame my parents or the society that even today continues to treat Endometriosis as an almost taboo subject.
Endometriosis patient and mother thanks to IVI Madrid.
My story begins when I was 14 years old, when they detected an ovarian cyst. I had an emergency operation, but since then I have always had problems associated with the ovaries and Endometriosis. Since then it has been hard, always living with pain, even when I had my period. In 2018, when I had been trying to get pregnant for a year and many tests, they discovered that I had both ‘broken’ fallopian tubes. If she wanted to be a mother, the only option to achieve it was through Assisted Reproduction. IVI was recommended to me, specifically Dr. Clara Colomé. In the summer of that same year I went to the clinic and a few months later we started treatment. We got it first time! Thanks to you I have the best of my life.
Endometriosis patient and mother thanks to IVI Mallorca.
Information, knowledge and understanding about Endometriosis
In addition to the campaign that we have presented to you, at IVI we have other tools to help those who suffer from Endometriosis, whether they name their pain or not. We have an Endometriosis Unit, made up of a team of specialists in pathology, who can offer comprehensive care with the aim of improving the quality of life of those who suffer from it. But you also have at your disposal the Endometriosis Guidecreated by these experts, with first-hand information to resolve all doubts about the disease.
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