Living"The rule does not hurt" The stigma associated with...

"The rule does not hurt" The stigma associated with endometriosis.

Endometriosis is a chronic disease that affects 10% of the female population worldwide . It is considered one of the most frequent benign gynecological pathologies.

To be able to talk about endometriosis, we have to know the female reproductive system called the uterus. It is pear-shaped and is located between the hips or also the so-called pelvis. The uterus is the place where the baby grows when a woman is pregnant.

Once we know the uterus and its function, we can explain that the endometrium is the inner layer of the uterus that protects it and that its main function is to receive the fertilized egg when pregnancy occurs.

Endometriosis is characterized by the presence of endometrial tissue outside the uterine cavity. These lesions are primarily found in the pelvis, but can also occur in multiple locations, including the intestine, diaphragm, and pleural cavity.

It affects young women, of childbearing and working age, of any ethnicity, race and social group, and has a significant impact on the quality of life of women.

How can I know if I have endometriosis?

Unfortunately , the origin that causes this disease is unknown and, furthermore, there is no treatment to cure it. The average to have a diagnosis can last even 10 years.

The main symptom is pain , which presents a great variability. It can be pelvic, chronic, and recurrent, and can be very acute, especially during menstrual periods. Its cyclical nature is a characteristic of endometriosis.

However, endometriosis can also be completely asymptomatic and discovered incidentally on examination for another reason. In addition to these signs and symptoms, endometriosis has been associated with women losing energy and feeling chronically tired .

Some of the signs and symptoms that can make us suspect endometriosis are the following:

  • Pain related to the menstrual period (dysmenorrhea) that can affect daily activities and a woman’s quality of life.
  • Chronic pelvic pain.
  • Pain in bowel movements (Dyschezia).
  • Deep pain during or after sexual intercourse (dyspareunia).
  • Gastrointestinal symptoms related to the time of menstruation.
  • Urinary symptoms such as blood in the urine or pain when urinating during the menstrual period.
  • Difficulty or inability to become pregnant.

Why is the diagnosis delayed?

The delay in diagnosis is influenced by the variability in the presentation of symptoms and the stigma associated with ” the period hurts “. Assessing a person’s pain may seem like an easy task, but specifying its origin is not.

In our society, menstrual pain has been normalized as something common and that women must assume for the simple fact of being a woman.

It is important to carry out a good in-depth interview to collect all the necessary data in the clinical history in order to find the diagnosis. The symptomatology of the patient and the gynecological examination are the first steps for the diagnosis of endometriosis.

As a general rule, symptoms and a transvaginal ultrasound are enough to clarify a diagnosis, but if we want to be 100% sure, a surgical intervention called laparoscopy must be performed.

The impact of endometriosis on quality of life

If we talk about endometriosis and the world of work, there are factors that are associated with the lack of awareness in people around women about the effects of this disease, generating stigma. In addition, absenteeism due to symptoms causes a feeling of guilt for not being able to work.

In the endometriosis care process , there is a general deficit in the care of these people in an effective and safe way. Better communication and information should be promoted to help strengthen self-care, reduce diagnosis time and guarantee comprehensive care with other specialists. Safe and fast care protocols and processes should be promoted.

We cannot forget the impact that endometriosis has on sexuality . It has been established that 60% of women suffer from some type of sexual dysfunction, reducing sexual hypoactivity and orgasm dysfunctions, which could be linked to psychosocial factors such as emotional stress associated with the disease, the quality of relationships intimate and above all avoid the pain that these can produce.

María Cervel, who lives with this health condition, can already be found on social networks like @dolor_mas. She tells us that “ Living with endometriosis means learning to manage the limitation of feeling pain permanently. A hidden pain that, due to modesty, guilt or shame, is relegated to the private sphere of women when, on the contrary, it affects all corners of their lives

Can you imagine the emotional impact that a disease that can take an average of 10 years to diagnose can have?

Mental health and endometriosis reflects that women have a high risk of psychosocial problems and can develop diseases such as depression and/or anxiety. There is no clear evidence regarding its cause-effect, but without a doubt, this process of uncertainty until reaching the diagnosis and including the associated stigma does not play in favor of having good mental health.

We can see that endometriosis is surrounded by enigma and uncertainty but the pain is real. Women are also affected by a taboo associated with the disease due to ignorance of the general population and lack of resources to help achieve a rapid and reliable diagnosis.

Thanks to the Internet, we can more easily find health information and even support groups. Eva Cortina from MoviEndo Spain tells us about the work they do through social networks “ we give visibility to the disease and what it means to suffer from it, training for citizens, information for patients and feedback with other professionals, union between patients so that don’t feel alone

Bibliographic references

Gołąb, A. (2021). The pains that kill–the metaphorical representation of endometriosis in women’s stories. http://bc.umcs.pl/Content/43866/czas13229_45_4_2021_10.pdf

Ministry of Health (2020). Study to find out the prevalence, morbidity attended and burden that endometriosis entails for the National Health System. https://www.sanidad.gob.es/en/organizacion/sns/planCalidadSNS/pdf/equidad/Estudio_Endiometrosis._Accesible.pdf

Perez, E. (2020). Diagnosis of endometriosis: laboratory tests and imaging tests. https://www.reproduccionasistida.org/diagnostico-endometriosis/

Pouly, JL, Gremeau, AS, Chauffour, C., Dejou, L., Brugnon, F., Vorilhon, S., … & Chauvet, P. (2020). Infertility and endometriosis. EMC-Gynecology-Obstetrics , 56 (1), 1-10.

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