March is National Disability Awareness Month. 2022 is the 28th year that the United States has dedicated a month to raising awareness around the support available to people with disabilities and their rights. 61 million people living in the United States are living with a disability. That means that 1 out of every 4 people you know has a disability as defined by U.S. disability law as a physical or mental impairment that substantially limits their life activities including employment and engagement in social and romantic relationships.
March is also Endometriosis Awareness Month. Endometriosis–a condition affecting 10 percent of people assigned female at birth–occurs when tissue similar to that which grows inside the uterus is found on other parts of the body. The endometrial-like cells found in the uterus can grow on the lining of the abdomen, ovaries, bladder, or colon. The symptoms vary from person to person but can include pain during periods, bowel movements, urination, and chronic pain in the pelvic area and deep vaginal pain during sex.
Doctors have historically been quick to dismiss the painful symptoms of endometriosis. As a result, it takes an average 10 visits to the doctor and 10 years to be diagnosed with endometriosis. In fact, more than 75 percent of cisgender women who ultimately receive an endometriosis diagnosis report being misdiagnosed with another physical or mental health condition. The gold standard of care to definitively diagnose endometriosis is through laparoscopic surgery and biopsy.
The majority of people who receive an Endometriosis diagnosis experience significant changes to their psychological health, quality of life, and sexual relationships. Female-at birth clients enter sex therapy when the pain they’ve endured for months or years becomes overwhelming in their day-to-day life. Some of my clients have reported losing as many as 10 days a month to debilitating bleeding and crippling pain. If the definition of a disability includes impairments that affect a person’s ability to…
- Be mobile
- Think clearly
- Engage in gainful employment
- Sustain fulfilling social relationships
- Retain good mental health
…shouldn’t workplace organizations consider endometriosis a disability?
The U.S. Social Security Administration does not have an official disability listing for endometriosis, but it can be categorized as such. Bringing awareness to endometriosis and its impact on women’s lives is in and of itself important. Identifying it as a disability is crucial.
Medical Providers and Cultural Stigma Around Infertility
Unfortunately, the medical avoidance and cultural secrecy around the mental health, sexual health, and sexual pleasure of people assigned female at birth means that endometriosis is often treated as a secret–or hidden disability.
Sex therapy clients report that they haven’t felt empowered to ask their medical providers about the pain issues affecting their sex lives due to embarrassment. Medical providers have traditionally not received much in the way of sexual health education during their professional training and may feel awkward about asking their patients about their sex lives. Particularly taboo are the mental health issues that an endometriosis diagnosis can cause. Especially common are mental health issues related to difficulty getting pregnant that are compounded by societal judgment of people assigned female at birth who remain childless (due to infertility or choice). As a result, many clients begin to doubt they can be what society might call a “good partner”.
Endometriosis and Partnered Sexual Pain
According to a Canadian Health research and educational site more than 50 percent of people with endometriosis feel pain during or after intercourse. They can experience “deep pain” during penetrative sex or “superficial pain” anywhere in the pelvic area and around the vagina.
While over half of women with endometriosis experience a deep pelvic pain during penetrative sex, some experience entry pain only around the opening of the vagina. Entry pain is commonly caused by a different condition called provoked vestibulodynia (ves-ti-byew-low-DIH-NIA) not endometriosis. This can feel like pain, burning, stinging, stabbing, or rawness at the opening of the vagina. The discomfort can be constant, or only happen when the area is touched. There is a 30 percent overlap between people who experience provoked vestibulodynia (also referred to as PVD) and deep pelvic pain caused by endometriosis.
Inability to have comfortable–let alone pleasurable–sex because of endometriosis or PVD can cause someone to feel that they aren’t able to be a “normal” sexual partner. As a result, people without partners may refrain from exploring the possibility of new sexual or romantic partners, and those with partners may experience issues around sex and intimacy in their relationships.
In fact, endometriosis in particular is associated with higher levels of sexual and relational distress. Partners in which one person experiences sexual pain report poor sexual communication, higher instances of erectile disfunction, less expressions of affections, and less overall satisfaction in their relationships–all else being equal. One of my clients who was unable to have penetrative vaginal sex with her husband because of intense sexual pain told me she felt like a “failure”. What she called her “brokenness”–her inability to have pleasurable, “normal” sex–outweighed her success at a fulfilling job, loving familial relationships, and emotionally loving relationship with her husband.
Partners of Females with Endometriosis
Because of the systemic nature of sexual pain, I recommend that clients struggling with these disorders to invite their partners in for couples sex therapy. Many couples continue to have vaginally penetrative sex while the partner with endometriosis is clenching or wincing in pain. This has an effect on their partner who may begin to feel anxiety and a sense that they are sexually coercing their partner–feelings that can create a negative self-identity and even a sense of self-disgust. Male partners may begin to avoid all aspects of sexuality in order to avoid their partner’s pain and their feelings of shame, or due to erectile, orgasmic and ejaculatory difficulties.
Sex Therapy with Couples Challenged by Endometriosis
The ability to engage in pleasurable and regular sex has profound increases one’s overall well-being. It affects how they view themselves, their value, and alters how they show up in their relationships and in their lives. It’s time to bring a large spotlight on endometriosis and chronic pain’s impact on people’s lives; centering female sexual pleasure.
There is hope for partners experiencing these difficulties. My initial intervention with couples dealing with endometriosis is educating both partners on the challenges of the illnesses. I recommend that couples take a break from painful sexual activity while the partner with endometriosis works with a gynecologist. I then invite the couple to imagine a larger sexual menu and make changes to their sexual script. Together we brainstorm new or previously enjoyed erotic and sexual play in order to reestablish emotional and playful intimacy in their sex life.
Other interventions including mindfulness and cognitive behavioral therapy provide additional hope for struggling couples. Mindfulness based cognitive therapy were found by Brotto et al. to help cisgender women decrease distress and rumination and improve their sexual satisfaction with provoked vestibulodynia. Evans et al. found that mindfulness practices can help couples to relax, reframe chronic pain, and ultimately help people with endometriosis to feel more embodied and empowered–particularly in communicating with their partner about intimacy. A recent study by Mikocka-Walus et al. also found that yoga and cognitive behavioral therapy is likely to have a positive impact on the quality of life of people living with endometriosis. These interventions bring hope to individuals and couples who are struggling with the debilitating effects of endometriosis and sexual pain.
As endometriosis can limit a person’s ability to work, care for themselves, engage in social and intimate relationships, and has a significant impact on their mental health, I would argue that it should be included as a legal medical disability. However, an endometriosis diagnosis does not have to mean a loss of intimate connections, pleasurable sex, and sex esteem. I have seen people with endometriosis and other forms of sexual pain make significant improvements to their health, sex lives, sex esteem, relationships, and lives by talking to their doctors, using mindfulness practices, and engaging in sex therapy.