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When Doctor’s Don’t Listen, Women Treat Their Own Sexual Pain — Here’s How

At first, it only hurt during penetration. Certain positions would cause a jagged, stabbing sensation in Kim’s vagina that would force her to stop having sex. Then, the sensation spread. It started hurting all the time — when she ran, when she stretched, whenever her boyfriend touched her vulva, even if it was barely a graze.

“It felt like I was being stabbed,” the 31-year-old digital marketing manager says.

Her boyfriend was sweet and understanding, but she stayed quiet about just how badly it hurt. She didn’t want the pain — whatever it was — to drive them apart. Plus, she thought, didn’t all women experience painful sex from time to time?

Three months after her pain started, it got so bad that she had to go to the emergency room late one night. She was in agony after having sex, but the doctor told her it was just gas. She went home confused and ashamed.

Over the course of the next seven years, doctor after doctor misdiagnosed Kim’s sexual pain, prescribing treatments for indigestion, vaginal infections, and depression she didn’t have (these are all common causes of sexual pain, but none fit the bill for Kim). Flustered, some doctors made outlandish suggestions, like proposing Kim get pregnant. She remembers being told, “Nine months of estrogen can really knock you out!”

Worse than the swing-and-a-miss treatment plans was the constant implication that Kim had been making it up: Six separate medical experts told her she was just imagining things, brushing her off with the disturbingly common refrain, “It’s all in your head.”

“No one believed me,” she says. “I couldn’t get doctors to take my pain seriously.”

Not being believed is a common occurrence for the 7 to 22 percent of women who experience chronic sexual pain stemming from conditions like endometriosis, vulvodynia, pelvic floor dysfunction, and chronic infections (though that’s hardly an exhaustive list of what causes sexual pain). Despite such a list of conditions existing, according to data collected by gynecologist and sexual pain expert Dr. Robert Echenberg of the Echenberg Institute for Pelvic and Sexual Pain, more than half of women who experience this are told their symptoms are “in their heads.” If a correct diagnosis is reached, Echenberg has found it takes an average of five to ten doctors to get there, and women spend an average of five years in pain.

That’s why many women like Kim opt to take the management of sexual pain into their own hands, either because they need something extra to supplement the surgeries, medications and physical therapies their doctors recommend, or they’ve decided to branch out and find non-medical ways to try to manage their pain and regain their sex lives.

It was through her own research that Kim discovered other women were having success with CBD, the non-psychogenic compound in marijuana known for its relaxing, pain-relieving, and anti-inflammatory properties — results which have been found in studies of rats and mice, but have yet to be widely studied in humans. The trendy compound is now available in everything from seltzer water to body rubs and brow gel.

“CBD is the only thing that’s ever worked,” Kim says. “It makes it so I can relax. I’d say it takes away about half the pain. It’s the one thing that gives me a semblance of the sex life I used to have, but not one doctor I saw mentioned it to me.” (Thus far, the FDA has only approved a CBD-related treatment for seizures.) Her own online research, and chatting in support groups, is also how Kim found out about endometriosis, a condition in which uterine lining grows in painful lesions throughout the body. Its symptoms sounded eerily familiar. A few weeks later, Kim was definitively diagnosed with the condition.

“I found both a cause and a treatment [not a cure] by doing my own research,” she says. “You have to be your own advocate. Doctors are so helpful once you find the right one, but in the meantime, real people experiencing the same thing you are can pitch in with recommendations and resources that really help.”

Curious what other sorts of recommendations and resources women devise for themselves in the absence of medical relief, I posted a general inquiry on a private Facebook group of women in Los Angeles, asking people who had experienced it, what — if anything — made their sexual pain go away.

While I’m aware this is no gold-standard study design, I was still struck by the breadth of fixes women had tried out, to good results. Most of them said their personal solution involved a combination of following the right doctor’s orders and experimenting with their own pain management strategies, many of which they say were never brought up in a medical setting. These included diet and lifestyle changes; alternative therapies like acupuncture, mindfulness training and myofascial massage; and sexual workarounds that made it so they could still be intimate without being in pain.

And while Echenberg says these non-medical solutions should always be employed alongside proper medical care, and supervised by trained and certified alternative care providers, he also encourages women to do what Kim did and become their own pain specialists — the more they know about their own pain, and the more they can relay what they know to their doctors, the more likely they are to find help.

But until then, here are some of the more common ways the women I spoke with found relief.

When doctor's dismiss women's chronic vaginal pain, or painful sex, they resort to DIY methods — here are some that work. ]]>