“Societal bias often tells us pain is simply ‘part of life’ and that symptoms of endometriosis like dyspareunia (painful sex) are somehow ‘normal’ or that we ‘shouldn’t talk about them.’ This is wrong.”

Guest Post by Nancy Petersen, RN

Endometriosis significantly impairs health-related quality of life across multiple domains, including pain, sexual, psychological and social functioning. The disease often creates a constellation of symptoms, each patient presenting with her own unique combination of various indicators. Dyspareunia (painful sex) alone represents a significant morbidity; for at least half of all affected by endometriosis, it is among chief complaints.

Many studies have demonstated ‘dyspareunia’ as a chief impact of endometriosis in affected individuals.

Sexual dissatisfaction and impairment are common, particularly among those with deeply infiltrating/fibrotic disease. However, stage matters not: research indicates those with limitations towards ovarian or other involvement were only ‘slightly less likely’ to experience dyspareunia than counterparts with deep/rectovaginal endometriosis.[1] Moreover, when compared to other gynecologic disorders, endometriosis was significantly linked to less sexual/partnership satisfaction: 61% vs. 35%.[2] For some, lesions in the lower pelvis are struck during penetration, resulting in pain akin to that felt when the blades of the bivalved speculum are opened during pelvic exam. For others, it is pain with or inability to achieve orgasm; for still others it may be loss of libido altogether. Dyspareunia can ruin relationships, impact an individual’s sense of self and overall well being, contribute to infertility, and cause severe impairment of sexual functioning.

“Sexual health is a state of physical, emotional, mental and social wellbeing related to sexuality; it is not merely the absence of disease, dysfunction or infirmity…Sexual health is a global issue that is vital to overall wellbeing.” World Health Organization; Abdool, et al.

Bearing in mind painful sex is among cardinal symptoms–a unique agony which can be exquisite in nature — we must address sexual health and well-being as a global issue and indeed, a human rights issue. Societal bias often tells us pain is simply “part of life” and that symptoms of endometriosis like dyspareunia are somehow “normal” or that we “shouldn’t talk about them.” This is wrong. This kind of silence can be crippling, and we MUST talk about it. But who is listening?

“Your poor partner; just lube up and take one for the team.”

The pain of dyspareunia is real and grounded in corporeal origin. So why the continued psychological dismissal? When over 10,000 respondents in our endometriosis community were recently surveyed on this topic, response was fast and furious. These are among the saddest narratives I have seen in women’s healthcare over the fifty+ years I have been involved:

“Have more sex, it will stretch things out and relieve your pain.” –to a 16-year-old virgin

“Get a hobby. I’ve gotten into motorcycles and I love them! You should, too.” –to a woman forced into abstinence by pain

“[The doctor said he] couldn’t feel anything and pain during sex was a result of ‘use it or lose it.’ In other words, because we didn’t have sex often — which we didn’t because it was painful — that it was causing the pain. He also asked if I was planning on getting married, because I wasn’t married to my husband at that time.”

“I was told sex hurt because I was fat. No exam done, nothing at all. That was it.”

“…All the doctors through the years who said ‘the pain is only in your head. Intercourse is an important and natural part of a relationship, you need to ignore the pain and learn to relax. Go and see a psychiatrist.’”

“If you don’t have sex with your husband soon, he’ll get it somewhere else…move past the pain.”

“Five years post diagnosis, my doctor insisted (in front of my husband) that I take an STD test, as I ‘couldn’t possibly still be having problems with endometriosis after surgery’ — even though I’d clearly told her several times that I’d been in a monogamous relationship with my husband for many years. Feeling vulnerable and weak, I complied and permitted a blood test for STDs. Of course my results came back clean, free from any STDs. But I felt dirty, ashamed and hopeless. This same doctor told me on another visit, ‘maybe your job will have to be your baby’ — after we were unsuccessful in our two IUI attempts and had two miscarriages.”

“After complaining of pain with sex many times, I was sent to [a psychiatrist]. Luckily, he was a good sort and told me that my pain was definitely real, and he was tired of being used as a dumping ground by the NHS for women with my problem. It took me twenty years and switching countries to finally get diagnosed.”

There were nearly one thousand additional comments that followed within hours, all variations on theme. Blaming pain with sex on ‘frigidity’ or other psychological entities is an old myth that has no basis in science. Is this just an easy out for those who fail to answer the challenges faced by these patients? Professor Shirley Peace reviewed data on psychological profiles more than three decades ago.[3] The literature was replete with Minnesota Multiphasic Personality Inventory (MMPI) studies in women with pelvic pain, demonstrating an abundance of schizophrenia, neurosis, psychosis, depression and related differential diagnoses. Yet, as Peace revealed, few had retested those same respondents once their pelvic pain was relieved. In those who were, their MMPIs returned to normal or near normal. It is an injustice and indictment of our profession to continue to deny women their sexual life when pain with sex as a result of endometriosis can be alleviated through adequate and skilled excision surgery to remove disease and correct anatomic abnormalities alongside adjuncts like pelvic floor physical therapy.

Sexual intimacy is a fundamental aspect of humanity, and the inability to engage in sexual activity in a fulfilling, meaningful way has a profoundly negative effect on individuals and their relationships.[4] Multidisciplinary care for endometriosis-associated dyspareunia and other sequelae, incorporating meticulous Laparoscopic disease removal (excision) along with pelvic floor therapy, nutritional guidance, psychosexual counseling and other important adjuncts, is critically needed –yet most clinics still do not offer such holistic approach. This stark reality suggests that too many gynecologists and other providers are not up on the true symptom profile of the disease and feel helpless, so rather than refer to specialists, they attack mental health status and make inappropriate recommendations (more sex, hysterectomy, have a baby, take one for the team).

Is this misogyny or just ignorance?

References:

1. Vercellini P, Somigliana E, Buggio L, Barbara G, Frattaruolo MP, Fedele L.  “I can’t get no satisfaction”: deep dyspareunia and sexual functioning in women with rectovaginal endometriosis. Fertil Steril. 2012 Dec;98(6):1503-11.e1,
   Moawad NS, Caplin A. Diagnosis, management & long-term outcomes of rectovaginal endometriosis. International Journal of Women’s Health. 2013;5:753-763,
   Montanari G, Di Donato N, Benfenati A, Giovanardi G, Zannoni L, Vicenzi C, et al. Women with deep infiltrating endometriosis: sexual satisfaction, desire, orgasm & pelvic problem interference with sex. J Sex Med. 2013 Jun;10(6):1559-66,
   Gruppo Italiano per lo Studio dell’Endometriosi. Relationship between stage, site and morphological characteristics of pelvic endometriosis and pain. Hum. Reprod. (2001) 16 (12): 2668-2671
   
2. Di Donato, Montanari, Benfenati, Monti, Bertoldo, Mauloni, Seracchioli. Do women with endometriosis have to worry about sex? Eur J Obstet Gynecol Reprod Biol. 2014 Aug;179:69-74.
3. Broome, Annabel; Wallace Louise. Psychology & Gynecological Problems. London; New York:Tavistock, 1984; Pearce, S. The concept of psychogenic pain: A psychological investigation of women with pelvic pain. September 1987, Vol6, Iss3, pp219-228
4. Denny E, Mann CH. Endometriosis-associated dyspareunia: the impact on women’s lives. The Journal of Family Planning & Reproductive Health Care 33 (3): 189–93.

Nancy Petersen–fondly known as “Nurse Nancy”–struggled with endometriosis for decades. She has spent her life fighting for education, advocacy and awareness, with directed focus on the psychosocial aspects of the disease and societal attitudes towards menstruation and pelvic pain. She began her career over fifty years ago at Good Samaritan Hospital & Medical Center in Oregon, in the Neurosurgical Division and later founded the country’s first endometriosis surgical treatment program focused on evidence-based, high quality minimally invasive excision at St. Charles Medical Center. She acknowledges Heather Guidone of the Center for Endometriosis Care for her contributions to this article.

Note: This article was updated on March 15, 2016, 4:36 EST.