Endometriosis (Endo) is a condition where tissue similar to the lining of the uterus grows in areas like the abdomen, intestines, and bladder. In these other locations, the tissue develops into “growths” or “implants”, causing chronic pain and a range of other symptoms. While the symptoms of Endometriosis on cis-female’s physical well-being is widely discussed in medical journals and forums, it still takes 5 to 12 (at times very painful) years for a symptomatic patient to FINALLY receive a clinical diagnosis. Additionally, its effect on intimacy and sexual health is often overlooked by medical providers, leaving individuals and their partners feeling isolated and frustrated. This Endometriosis Awareness month, I want to shed light on this important aspect of living with Endo, drawing on recent research and clinical insights.

Describing and Defining Pain: Dyspareunia and Endometriosis

When I began specializing in sex therapy, I noticed more and more women in their twenties and thirties coming into my practice with issues of pain during and at times outside of vaginal penetration. This frequently leads to lower desire, arousal, lubrication and increased ‘hypertonic’ tone or tightening of their pelvic floor muscles. People with vulvas and vaginas with Endometriosis-caused sexual pain frequently experience feelings of sadness, anxiety, and frustration in not being able to have a “normal” life, including their sex life. Endometriosis pain can manifest as deep Dyspareunia, felt during deep vaginal penetration, often due to contact with endometriosis lesions on pelvic structures. Research illustrates that up to 50% of women with Endo experience Dyspareunia. Some may also experience superficial dyspareunia: pain at the vaginal opening with or without penetration. 

When women are brave enough to talk about their symptoms’ impact on their sex life before receiving an accurate diagnosis, their primary care or Ob/Gyn doctors usually recommend using lube or prescribing medication for bacterial vaginosis or yeast infection. Why? Because the majority of medical schools are not providing adequate training in Endometriosis or in pleasure positive sexual health. Due to Endometriosis causing Dyspareunia cis-women develop anticipatory anxiety of pain when the slightest sexual encounter is initiated by a partner. I most commonly see this presenting problem in my practice when a partnered woman reaches out on their own for individual sex therapy. During the admission call, they usually state that they need individual treatment “because I’m the issue”.  Female clients experience an enormous amount of shame around not being able to ‘perform’ in sexual encounters without anxiety or pain.

How Couples Sex Therapy offers a Systemic Holistic Approach  

Endometriosis-related pain during intimacy doesn’t solely affect the woman experiencing it. Partners also embark on their own journey. Studies on male partners of women with dyspareunia show increases in distress and their own sexual difficulties, including lack of desire, anxiety, erection problems, and orgasm difficulties. While it’s often assumed that similarity in partners’ sexual desire is beneficial, research suggests that both partners simply feeling supported through intimacy helps with engagement for everyone. Having open dialogues with a partner around pleasure and intimacy is crucial to creating a meaningful, positive sex life for everyone. This may mean offering couples therapy so they both can learn to reframe the way intimacy can be shared and expand the definition of what partnered sex actually can mean. 

Challenging What is “Normal” by Expanding the Definition of ‘Sex’

Often, the idea of “normal sex” in the heterosexual world is defined as penis in vagina (P in V) penetrative intercourse. However, for individuals with endometriosis-related pain, this definition can be limiting and distressing. You don’t need penetration to have sexual pleasure and intimacy for each partner. Rosemary Basson’s Sexual Response model introduced the idea of responsive desire, which is critical to understand when one is suffering with sexual penetrative pain, fatigue, and the many symptoms that are associated with Endometriosis. Responsive desire is a feeling of motivation based on erotic context or a partner’s approach. What Basson’s model offers us is a willingness to enter an erotic or sexually pleasurable experience that isn’t exclusively based on desire. What I invite readers and clients to take away from this Sex Esteem® lesson is that partners don’t exclusively need penetration to enjoy a wide range of sexual pleasure!

Sex researchers have identified a wide range of motivations for sex, categorized as approach motivations (positive aspects like pleasure) and avoidance motivations (fear of disappointment or rejection). Pushing through painful sex often stems from these avoidance motivations, which can lead to more pain and negative associations with intimacy. Part of healing is to rewire the connection between your body and mind that sex will lead to pain. Helping clients to forge a new neural pathway between the body and mind will help a client and couple experience relaxed sexual pleasure. To do this, many women and their partners need to take a break from vaginal penetration and begin a new practice of pleasure-focused sexuality either through solo pleasuring or what sex therapists call: partnered ‘outercourse’.

Initial Steps for Outercourse

• Begin by using mindful breathing to invite your psyche to become aware of your body’s senses without judgement.
• Give yourself sessions where you explore your pleasure zones first by yourself then with your partner (if you are partnered).
• Find a vibrator that has just the right pressure to arouse you externally.
• Show your partner the wide menu of erogenous zones on your body’s skinscape to caress, tease or stimulate.
• Explore erotic fantasies through your imagination, listening to erotic stories, or watching ethical feminist sexual media. Notice the sensations that get activated as a result of erotic thoughts. 
• Invite your partner to touch you in exactly the place and manner you enjoyed on your own
• Ask your partner what kind of touch they would like. Consider if you’re able to provide all or any of this request and then let them know.  

Positive intimate experiences are possible for those with Endometriosis and/or suffering from Dyspareunia. By openly communicating with one another, looking outside the rigid beliefs about what ‘sex’ is, and reducing shame surrounding pain and intimacy, women and their partners can pursue pleasurable and more fulfilling intimate lives.