With endometriosis, tissue similar to the one lining the inside of the uterus (known as the endometrium) grows outside of the uterus — typically on the ovaries, fallopian tubes, pelvic tissue, bladder, gastrointestinal tract or, less commonly, in other areas of the body.
During a menstrual cycle, this misplaced tissue behaves like it would if it were in the uterus: It thickens, breaks down and bleeds, but the body has no way to shed it, causing inflammation. As a result, scar tissue, adhesions and cysts may form.
Symptoms of endometriosis may include intense cramping, chronic pain, heavy periods, fatigue, uncomfortable bowel movements and difficulty getting pregnant.
A study published in 2017 found that two-thirds of women with endometriosis experience some form of sexual dysfunction, which includes painful sex, known as dyspareunia.
Though endometriosis is common — an estimated 1 in 10 women of reproductive age in the U.S. are affected by it — doctors often misdiagnose the condition or write off symptoms as just normal period issues. It takes an average of nine-plus years for women to receive an accurate diagnosis. (Note that trans and gender-nonconforming people also deal with endometriosis.)
“Because of this long delay, young women often have years of painful sexual experiences before being properly diagnosed and treated,” Nan Wise — a New Jersey sex therapist, neuroscientist and author of “Why Good Sex Matters” — told HuffPost. “This perpetuates the cycle of pain, fear and avoidance, which may actually result in poorer outcomes.”
So how can you enjoy sex more while living with this condition? We asked OB-GYNs and sex therapists to share their best advice.
Why endometriosis can make sex painful
“It felt like a knife was going through my uterus and hitting the other side,” Jessica Duffin, creator of ThisEndoLife.com, told Women’s Health. “At times, it hurt so intensely that I felt removed from reality.”
Penetration or thrusting during intercourse can stretch, pull or push against the misplaced endometrial tissue, known as endometrial implants, in the pelvis. The severity of the pain may vary depending on a number of factors: how deep the penetration is, when sex is happening (for some women it’s worst during their periods) and where the implants are located.
“If the implants are on nerves, ligaments and tissue stretched during sex, pain can be significant and, often, unbearable lasting hours and days afterward,” said Dr. Sherry A. Ross, an OB-GYN in Santa Monica, California, and the author of “She-ology: The She-quel.”
Psychological factors may also play a role in the pain. When a person is dealing with endometriosis, the body can start to “equate sexual stimulation with pain,” Wise said.
“Essentially it causes a fear reaction in which the body braces for pain and the result is even more tension, which can exacerbate the pain,” she explained.
In the long term, this fear response can further decrease libido and reduce vaginal lubrication, making sex even more painful and thus perpetuating a cycle of more distress.
How to make sex more enjoyable
When sex becomes painful, it can be upsetting to the person with endometriosis, while also putting stress on the relationship with their sexual partner.
“Sex is supposed to be fun and if one partner is having severe pain this makes the act of sex much less enjoyable, not only for the woman who has endometriosis but also for her partner who does not want to hurt her,” said Dr. Diana Hoppe, an OB-GYN in Encinitas, California, and author of “Healthy Sex Drive, Healthy You.”
Here are some expert-backed pieces of advice to boost intimacy while avoiding pain:
Communicate with your partner.
As difficult as it may be to speak up, don’t suffer in silence. Inform your partner about the condition in general and then get specific about how it affects your sex life. Tell them what feels good and what does not. Some partners may interpret a lack of desire to have sex as a sign that you’re not attracted to them anymore. So it may help to explain that the dip in your libido isn’t about them — it’s a result of your endometriosis.
“The more your partner is informed about the pain and discomfort you are experiencing, the easier it will be for them to be supportive and helpful in finding alternative ways to express your sexual concerns leading to a healthy sex life,” Ross said.
Try different positions.
“For some women, being on top, rather than the missionary position, allows them more control with penetration and can lessen pain,” said Hoppe.
Discover what works best for the two of you.
Time it right.
Keep track of your cycle and how it affects your pain levels; that way, you can figure out if there are certain times of the month that tend to be better windows for some hanky-panky. Then plan accordingly.
“Some women say that having sexual activity after their period is less painful,” said Janet Brito, a psychologist and sex therapist in Honolulu. “Best to listen to your body and and find the best time where you feel the most relaxed.”
Experiment with sexual activities that don’t involve vaginal penetration.
In some cases, vaginal penetration may just be too painful, regardless of the position, speed or time of the month. Instead, try making out naked, mutual masturbation, giving and receiving oral sex, dry-humping or anal sex.
“Explore different sensations,” Brito said. “Discover new erogenous zones, such as nipple pinching, using sex toys or incorporating role play.”
“Since vaginal dryness is a common cause of painful sex, it’s always best to make sure you have a go-to vaginal lubrication during sexual intercourse,” Ross said. “You don’t want vaginal dryness to be confused with painful sex caused by endometriosis.”
Explore mindful sex.
Instead of engaging in goal-oriented sex where the only aim is orgasm, try to slow down and focus on sensations of pleasure, deep breathing, feelings of connection and a sense of curiosity that will help relax your busy mind.
“When you are not feeling pressure to perform, you are more likely to be present and appreciate the present moment,” Brito said.
Don’t underestimate the power of sexual imagery.
Research has shown that just thinking about pleasurable genital sensations can light up the brain as if it were responding to actual physical stimulation. In a 2016 study, Wise and her colleagues found that when participants merely imagined the insertion of a dildo, it generated “extensive brain activation” and produced sexual arousal.
“What this study showed was that it is possible to just think about sex and these brain areas become activated, ultimately confirming how powerful a sex organ the brain actually is,” Wise said. “What I recommend to patients whose genitals have become associated with pain rather than pleasure is to use the power of imagery to imagine experiencing pleasurable sensations in the genitals.”
Consider seeing a professional.
In addition to visiting a doctor to discuss your medical treatment options, it may be beneficial to make an appointment with a pelvic health physical therapist. This person can help you find ways to reduce your pain and improve your quality of life, inside and outside the bedroom.
Another great resource is a sex therapist specializing in endometriosis, who can help you explore less painful sexual activities and give you the tools to improve communication with your sexual partners or significant other.