Stigma and Endometriosis

Women fight every day to receive a diagnosis of endometriosis. Despite this, it takes most women an average of 8 to 10 years to get the proper diagnosis.

There is a stigma around endometriosis. A combination of gender bias and the stigma around menstruation is partly to blame for this delay in treatment.

Stigma with endometriosis

While there should not be a stigma around endometriosis, there is still a stigma. There are different stigmas: social stigma, self-stigma, structural stigma, and health practitioner stigma.¹

Social stigma

Social or public stigma is the most common type of stigma. This occurs “when the public endorses negative stereotypes and prejudices, resulting in discrimination.” The social stigma is based on the thoughts and attitudes of others, along with supporting stereotypes related to endometriosis.²

Self-stigma

Self-stigma focuses on an individual’s internalized shame, thoughts, and beliefs about their condition. This stigma can affect so much for the individual. It changes how they view themselves, their relationships with other people, and even the value they attach to their life.

Structural or institutional stigma

Structural or institutional stigma comes from an institution, governmental or organizational policy, or societal structures that decrease the rights and opportunities of individuals with the condition, in this case, endometriosis. This may be intentional or unintentional and can lead to health practitioner stigma.²

Health practitioner stigma

Health practitioner stigma is when a health professional allows stereotypes and prejudices to affect how an individual is treated. This is something that should never happen but sadly does occur.²

Gender Bias Stigma

Gender bias is a form of sexism. This bias creates a difference in how men and women are treated and how they are believed. There is a historical gender bias in the medical field. This bias negatively affects the quality of healthcare that women tend to experience. In the case above, the women were told the pain they reported was not as great as they had.³

Invalidation at the doctor

In a 2020 study of women with endometriosis, participants were labeled as “an excessive whiner or complainer without reason” in “family interactions, healthcare interactions, and social interactions.”²

While all of these settings should have been safe places for women to discuss their pain, at least two of them should have been extra safe. It is incredibly frustrating when families and healthcare providers do not offer women the support they need.³

These women were “expected to endure endometriosis-related pain and not allow it to interfere or limit their everyday lives, social activities, or familial responsibilities.” Society seems to be under the impression that any period of pain is normal, and women should simply deal with it.³

They experienced health practitioner stigma by the doctors normalizing their symptoms and invalidating their pain. Additionally, the societal stigma around menstruation etiquette placed these women in a position that limited with who they could discuss their pain and other symptoms.³

Have you experienced any stigma while dealing with your endometriosis?