When my doctor told me that I needed laparoscopic surgery on my right ovary to remove an asymptomatic cyst nearly the size of a baseball, I didn't think to ask about sex, and my doctor didn't think to mention it. She did advise against cartwheels, explaining that gymnastic exercise could create a surgical emergency by twisting the fragile ligaments that tied together my uterine wall and my poor defenseless ovary, saddled with its lopsided dermoid sack of fat and hair.
"Maybe cool it on the running," she added, saying I should avoid strenuous activity before my surgery (though I have never needed a doctor's permission to avoid destroying my knees through the devil's exercise). After my appointment, I collected my thoughts and called back to ask whether I could continue with a form of exercise in which I had actual plans to engage.
"If your doctor didn't say 'pelvic rest', you can have sex," the nurse said.
"Okay, um, what about... energetic sex?"
"What do you mean?"
"Like, um, really active sex, I guess?" I could hear the nurse stifle a laugh, but the answer was important to me. Several years ago, some slightly Olympian intercourse in my husband's spartan dorm room caused the scary, painful, and expensive rupture of an ovarian cyst, and I did not want to repeat that part of my medical history.
Two hours after my query, the nurse called back to relay my doctor's advice: Avoid "vigorous sex." This instruction prompted the same question from both me and my husband: What exactly is _non_-vigorous sex? We have been together ten years, in large part because the sex is really good. Neither of us has been much satisfied by the kind of copulation I imagined when I heard the word non-vigorous: soft focus, lots of candles and satin and slow jams, like a Mariah Carey video.
My unexpected semantic debate with the well-meaning nurse revealed the distinct lack of language patients and doctors have to talk about sex. "There are linguistic and cultural barriers [to] getting on the same page with providers, especially in a country where so much discussion of sex is full of euphemisms," said Aida Manduley, a sex educator and clinician studying social work at Boston University.
Sex is deeply individual, and the intimacy of the topic can stymie necessary discussions. "The recommendation to avoid sex or certain positions, speeds, or intensity needs to be individualized per person based on their specific anatomical considerations," said Stephanie Prendergast, a physical therapist, founder of the Pelvic Health and Rehabilitation Center, and coauthor of the forthcoming book Pelvic Pain Explained. With so many variables and so little language, both patient and doctor can find themselves at a loss for words. "It is common knowledge that the majority of the medical community, including gynecologists and urologists, would like more training on how to talk to their patients about sex. They are just as uncomfortable as the patient is frustrated."
I find that 'should' and expectations in sex are what kill you.
Some doctors take a harder line to avoid causing confusion or pain. "I say 'no sex', specifically nothing in the vagina, to my [postoperative] patients for one to eight weeks," said Dr. Danielle Staecker. She is one of the founders of the Center for Pelvic Pain and Sexual Health, an interdisciplinary team of medical professionals at the University of Kansas Medical Center who work together to treat patients with pelvic and sexual health concerns. Dr. Staecker is most concerned about avoiding pain and infection in her postoperative patients. "If they're breastfeeding, there are physical changes that make the vaginal tissue very frail and thin, and sexual activity very painful. If people engage in vaginal sexual activity too soon, they can tear through sutures, and that becomes a real emergency. In some situations, the bowel can fall through." She also rebutted my doctor's advice against running before surgery, saying that she "wouldn't advise against marathons" before the removal of a cyst, though I did not mention how big and weird mine was in our conversation.
When I interviewed my doctor months after my surgery, she didn't remember the specific instructions she gave me, but she explained why she would have recommended pelvic rest. The theoretic risk of torsion was present in my case because the cyst was lopsided and more than seven centimeters in diameter. But to my memory, she didn't mention pelvic rest before surgery. Though I was generally very happy with the care I received, I wonder if she would have said anything about sex at all if I hadn't gone out of my way to ask.
Other health care providers don't want to discuss sex or satisfaction at all. Kirsten Schultz, who blogs about her rare form of arthritis called Still's Disease and leads a #chronicsex Twitter chat every Thursday night to discuss sex for people with chronic illnesses, said that a specialist who repeatedly asked about her quality of life would ignore her sexual symptoms—even when Schultz brought them up herself. "My primary care physician is also an ob/gyn [because] I need to be able to have these conversations with someone!" wrote Schultz.
Sexual health issues can be fraught with pain and shame. People often deal with vaginismus or vulvodynia alone, not realizing their symptoms can often be treated. "Broken was a word I used to describe myself for a long time," said Dani, a student in her 20s who has experienced symptoms of vaginismus for the past decade. "Several girls that I've been with have had the same condition, but didn't know it before me. They're like, 'Wait, you too? I've never really vocalized that because I thought it was just me.'"
And stilted conversations in the doctor's office can magnify the often invisible discrimination endured by marginalized communities. "Many people of color and people with disabilities carry the historical trauma of knowing our bodies have been violently and non-consensually used for scientific progress," said Manduley. Dani expressed frustration with the medical community's focus on penetrative heterosexual sex, which she referred to as "the Great Heterosexual Intercourse." "It's posited as the One True Thing," she said. "It's all about how they want you to be able to receive your husband's penis."
Though these conversations can be difficult, there are solutions for people who have to be careful about having "vigorous sex"—sex that is too fast or too hard. "Having pelvic health issues doesn't mean people have to upend their entire sexual scripts and avoid everything they used to enjoy," said Manduley. "While penetration may have to shift, can other body parts get involved in new, helpful ways? Can the person increase their breathing speed so their heart rate increases even if the body isn't moving very fast itself?" Manduley also makes a case for going slow and soft: "Going slower can also increase the 'tease' factor [and] delay gratification in a sensual way."
It's all about how they want you to be able to receive your husband's penis.
Reframing what "vigorous sex" means can change expectations and increase satisfaction. "A lot of common rhetorical focus is on penetrative vaginal sex as the main definition of sex, which is exclusionary and means people are less likely to ever explore the variety of other erogenous zones and sexual activities," said Yvonne Yu, who has worked in sexual education with the Center for Sexual Pleasure and Health and the Women of Color Sexual Health Network. Dani saw intercourse as unnecessary to intense sex, for example. "Vigorous sex for me is a lot more to do with the emotional intensity of the room, and the urgency and forcefulness of hands and mouths more than anything," she said.
Personally, my husband and I never figured out what good "non-vigorous" sex looked like for us. We had okay sex a couple of times before my surgery by taking breaks from intimacy, which lowered my arousal thresholds and made our usual friction and force less necessary. But I didn't feel as deeply satisfied as I knew I could. Though my surgery went very well, stressing out about my first major operation and the attendant sexual complications may have made sex more difficult. A 1999 study in Sexuality and Disability about sexual experiences after traumatic spinal cord injuries found that "[a] positive attitude towards sexuality [seems] to be of particular importance for a favourable outcome of sexual rehabilitation."
"I really try to approach it with a can-do attitude," Dani said of her current sex life. A good attitude by itself cannot correct pain completely, nor can it ensure that people will be satisfied with the changes in their sex life. But shifts in sexual behavior, even those prompted by illness and disability, can be liberating and healthy. "I find that 'should' and expectations in sex are what kill you," Dani told me. "When you say 'vigorous sex', people are going to think that looks a certain way. And it so doesn't have to. It can look like whatever you want."