Alt om endometriose

Endometriosis - the hidden disease

Can it really be true that it can take an average of 6 to 7 years before a correct endometriosis diagnosis can take place? Do we have to accept that the symptoms and sexual challenges of the disease are largely linked to societal discourses that normalize, taboo and stigmatize endometriosis? And is our genitalia perhaps just too mysterious for optimal diagnosis and adequate research?

Endometriosis - pain and sex

Endometriosis is the presence of uterine lining tissue (endometrioma) that spreads mutating into the abdominal cavity, intestines, ovaries and other organs. Endometriosis tissue undergoes the same cyclical and hormonal changes as mucosal tissue in the uterus, but becomes trapped in the abdominal cavity anatomy and becomes inflammatory. This can therefore cause severe and chronically debilitating pain during menstruation and the cycle (1).

Due to this pain, many people with endometriosis experience a lack of desire and great discomfort during sex. This may be due to prolonged penetrating friction in and around the vagina, which already feels strained by tension and pressure from the surrounding affected organs (2). It is therefore essential to slow down and create a more gentle and soothing warm-up to relax the vagina and pelvis before penetration. It can also be beneficial to include a present and loving attention to the bodily response, both as a sexual partner or with yourself.

Societal perspective

In addition to the many physical consequences, endometriosis has a complex symptom picture that is both socially conditioned and individually based. According to the WHO, endometriosis affects around 10% of people with a uterus globally (3), and with such a prevalence, it is assumed that research will also follow the remarkable curve - but on the contrary. Many endometriosis sufferers around the world go under the diagnostic radar due to a too flimsy and frivolous dialog and investigation of severely painful people with vulva and uterus.

This lack of dialog and visibility of endometriosis is due to an entrenched mystified narrative about the anatomy and somatics of the ''female gender''. It is well known that cyclical pelvic pain

and discomfort often go hand in hand with having a uterus, but for the same reason, endometriosis pain is misinterpreted and written off as habitual for a fertile person. This contributes to the lack of detection, precisely because it is disguised in the depiction of a ''typical female pain'' (4).

What can be done?

Expanding acceptance and understanding of endometriosis in a healthcare context is a fundamental part of treatment and recognition of the diagnosis. But how can endometriosis sufferers become visible and strengthen their self-care?

By making visible our own experiences with shame, grief, body image, sexuality and general existential issues, we can feel more connected, seen and heard through adequate dialog. Those of us born with a uterus can especially benefit from slowing down and paying attention to our needs and cycles in a society that encourages perpetual growth and busyness. Therefore, take the space to care for yourself, your body and the onset of pain. Get to know your anatomy anew through different methods of masturbation exploration, at a pace that is appropriate to your challenges and pain. Demand a sexual partner who can understand with integrity what you and your beautiful body entail, and find the courage to communicate your needs authentically.

Xoxo

Sophie Bryant V.

Co-founder of Womb. Sexologist and Nurse Practitioner

Reference list

  1. Endometriosis Community, 2022. Endometriosis - What is it? [Online] Available at: https://www.endo.dk/om-endometriose/fakta/ [Accessed 03 May 2024].
  2. Carter A, Ford JV, Luetke M, Fu TJ, Townes A, Hensel DJ, Dodge B, Herbenick D. "Fulfilling His Needs, Not Mine": Reasons for Not Talking About Painful Sex and Associations with Lack of Pleasure in a Nationally Representative Sample of Women in the United States.
  3. WHO, 2023. World Health Organization- Endometriosis. [Online]
  4. Available at: https://www.who.int/news-room/fact-sheets/detail/endometriosis [Accessed 03 May 2024].
  5. Dahl-Rasmussen, M., 2018. Sygeforsikringen.dk- Endometriosis - a taboo disease. [Online].Available at: https://www.sygeforsikring.dk/nyt-sundt/endometriose-en-tabubelagt-sygdom [Accessed 31 April 2024].
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