Pain during sex isn’t something that should ever happen — unless, of course, that’s what you’re into. But so many people with vaginas and uteruses suffer through pain during intercourse without saying anything. The reasons for that are vast — we’re embarrassed; we’re not taught to stand up for our sexual needs; etc. — and the potential causes are legion. But pain during sex isn’t just a feminist issue (although it absolutely is that). It can also be a sign of endometriosis.
Endometriosis is a disease that affects one in 10 people with uteruses, according to the Endometriosis Foundation of America. Endometriosis occurs when tissue similar to the uterine lining grows outside of the uterus, causing lesions, scarring, and even the fusing of organs to each other or to the pelvic wall. People with endometriosis can experience symptoms ranging from slightly more painful periods to debilitating pain to infertility.
Dr. Rebecca Brightman, a New York based OB/GYN, tells Bustle that the most common sexual side effect of endometriosis is dyspareunia, which is pain during sexual intercourse. She says that people with endometriosis often experience dyspareunia during deep penetration and that pain is due to lesions preventing mobility of the cervix and/or uterus, scarring, uterine contractions during orgasm, or “implants behind the uterus that are tender.”
“If you have scar tissue and it’s preventing things from moving around as they’re getting bopped around, so to speak, it’s going to hurt!” Dr. Brightman says.
Dr. Brightman also points out that other symptoms of endometriosis — including gastrointestinal and urinary issues — can also put a damper on someone’s sex drive. “None of these things make women feel particularly sexy,” she says. “When women aren’t feeling well, the last thing they want to think about is having sex.”
Emily Sauer, the founder and CEO of Ohnut, a company that produces a sexual aid to help people who feel pain from deep penetration, says that people with endometriosis are the largest group to express interest in her product to date. She calls those more general side effects that Dr. Brightman referred to “life side effects.”
“People are so ashamed to have pelvic pain — let alone pain during sex — that they don’t speak up,” Sauer tells Bustle. “They often get wrong treatments that delay diagnosis. And at that point, endometriosis becomes really hard to manage. So it becomes a vicious cycle of pain and then shame and then reinforced pain.”
Currently, it can take around 10 years for someone to be diagnosed with endometriosis, according to the Endometriosis Foundation of America. Sauer says that the symptoms— including fatigue, body image issues, bladder and bowel complications, and pelvic floor muscle dysfunction — increase and worsen the longer someone goes undiagnosed. And even once someone has been diagnosed and start treatment, that pain may still linger.
“Physically what happens is called ‘central sensitization’ — when your nervous system re-habituates to organize around pain,” Sauer says. “So even when the complications of the disease are addressed, the symptoms can actually be maintained because of that physiological reorientation around pain.”
So what can a person experiencing pain during sex due to endometriosis symptoms do? First: Re-think what “sex” means. While penetrative sex can obviously be really fun, there are plenty of other ways to be sexually intimate with your partner. Oral sex, mutual masturbation, and frottage (aka, rubbing up on each other), are all fun, sexy activities that don’t include any penetration at all. Another option are sex toys that are designed to help with chronic pain. Ohnut is one of these — the device consists of three rings that are worn at the base of a penis (or a toy) that help control how deeply it penetrates.
Finally, both Sauer and Dr. Brightman encourage anyone who’s feeling pain during penetrative sex to ask their doctor about what's going on. “Women should know that they’re not being judged and don’t be embarrassed,” Dr. Brightman says. "This is what we do."