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.
Diet, Exercise — and Food Allergies?
After seeing nine separate doctors, being prescribed antidepressants for her vaginal pain, enduring a $5,000 exploratory surgery, and losing a relationship over what she eventually discovered was a painful, yet hard-to-diagnose condition called vulvodynia, Jasmine decided to look somewhere other than the medical field for answers — her diet. In doing so, the 27-year-old yoga instructor discovered a completely unexpected solution to her problem: eliminating soy.
Soy has been shown to alleviate some women’s sexual pain — particularly the types caused by low estrogen levels — but in some cases, it can actually make things worse. This is because soy is one of the foods known to cause as many as 90 percent of IgE food allergies, a category of food intolerance that often results in the sort of inflammation known to exacerbate the painful condition.
“I wish dietary allergies were discussed in relation to painful sex so other women could live pain-free,” Jasmine says. “Now that I’ve cut out soy, the pain has stopped.” Of course it’s not as simple as that for everyone. There are several foods in this same allergy category, including dairy, corn, sugar, eggs, wheat, peanuts and fish — which is quite a list to work through process-of-elimination style.
Even in the absence of food allergies, some women, like Claire, a 35-year-old veterinary assistant, find pain relief from experimenting with their diet and exercise routines. After tearing her pelvic floor muscles and vaginal opening during childbirth, Claire developed chronic pelvic pain that left her unable to have sex for two years. “During that time, I had no libido whatsoever,” she says. “I gave up trying to get in the mood.”
While the pelvic floor therapy her doctor had prescribed helped, it wasn’t until she started experimenting with vegetarian and vegan diets that Claire says things really turned around for her. “The more fruits and veggies I ate, and the more water I drank, the greater my libido became,” she says. Given that vegetarian, olive-oil rich diets can improve blood flow to the genital area, it makes sense Claire found relief from eating this way. Proper circulation is crucial for tissue repair, vaginal lubrication, arousal, and muscular relaxation, all things that can make sex less painful for women with certain conditions, like pelvic floor dysfunction.
Exercise helped, too. “Doing yoga and Pilates made a big difference,” Claire says. “The healthier I was and the more I got my blood pumping — the easier it was for me to get horny and wet." After a few months, Claire says her libido began to return, sex started to hurt less, and she started to see herself as a sexual person again.
Dietary changes can also benefit women whose pain is caused by chronic yeast infections or bacterial vaginosis (BV). After years of chronic, antibiotic-resistant BV that left her unable to have penetrative sex, 30-year-old Heather says what helped her was limiting her diet to protein, vegetables, fermented foods, yogurt, whole grains, and an immune-boosting daily vitamin cocktail of folate, Vitamin A, zinc, Echinacea and probiotics (the latter of which Jezebel writer Kate Jenkins also found helped treat a rare vaginal infection called ureaplasma that sidelined her sex life).
When I asked Echenberg whether he backs these dietary changes as solutions to painful sex, he told me he sees them as not only useful, but as necessary in treating certain conditions, especially those caused by inflammation, like endometriosis or vestibulitis, which is localized pain at the opening of the vulva that can be exacerbated by everything from tampon use to tight clothes.
“All conditions that involve chronic inflammatory components require at least some well planned anti-inflammatory diet approaches,” he says. “Proper hydration and a low-acid diet that’s high in vegetables and vitamins is always helpful in lowering the excess inflammation, and can go a long way in reducing pain.”
VIDEO: Ease Pain Without Medication
Using a sexual wellness product called Foria also made a huge difference for Kim, Jasmine, and a surprising number of the women I spoke with. A THC-based cannabis lubricant, Foria can be enormously effective at reducing painful inflammation while increasing circulation that leads to arousal and natural lubrication. Unlike your CBD-infused mascara that is totally drug-free, Foria includes THC, the psychoactive compound in marijuana. That said, the dose in Foria is far too low to make you feel stoned. Though some say the lubricated-and-relaxed sensation it can create is like getting your vagina high.
Foria is far from the only THC or CBD product out there (the brand does make both) — if you live in a state where marijuana is legal, you can find other brands of weed lube, water, edibles, oil, tinctures and body lotions that may help to reduce pain and increase pleasure.
Switching Things Up, Sexually
Even in the face of vaginal pain, there are plenty of sexual workarounds women have developed to keep their sex lives robust, and satisfying.
“Flexibility is key,” says Caroline Pukall, Ph.D., psychology professor, director of the Sex Therapy Service at Queen’s University and co-author of the book When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain. “Sometimes, this just means changing the type of sex you have until your pain subsides. It’s like taking a detour on a road trip if there is construction — if penetration is painful, then engaging in activities that are pleasurable and not painful can allow for erotic energy and intimacy to thrive even in the face of sexual pain. Penetration isn’t everything, and discovering what else is out there can be a great source of adventure.”
Heather had an adventure of her own when her BV was at its worst. During that time, she learned to utilize the rest of her body and mind for pleasure in ways she had never considered before. “Having painful sex taught me I have so many other erotic zones,” she says. “Before, I completely glazed over my lips, ass, and nipples, but, since I haven’t felt comfortable touching my vulva or vagina for the last few years, they took over as the parts of my body that felt pleasure.”
Heather’s sexual pain also opened her eyes to the other types of sex she can have. In particular, she found that BDSM allowed her to have a passionate erotic exchange without any genital involvement, something she says gave her hope and made her feel like her usual, sexual self, even in the midst of an infection that just wouldn’t quit.
“If anything,” she tells me, “I’ve learned that I’m more dynamic and adaptable than I thought. For all the women out there struggling with the loss of their sexuality, you don’t have to. You can still feel pleasure, have fun, and be intimate. It might look different than it used to, but that’s okay.”
Actually, Pukall says it’s quite common for women experiencing sexual pain to find unexpected silver linings like this. “Some people even report feeling closer to their partner because of the better communication due to the sexual pain issue,” she says. “Others report more sexual creativity. Many even tell me the pain makes them feel more in tune with their sexuality and overall selves because they have to listen to their bodies in new ways.”
Mandy, a 29-year-old musician who experiences a searing, clenching sensation in her vagina during penetration for a still-unknown reason, also says lots of foreplay, using high-quality lubricant, and warming up with a small vibrator makes activities like penetrative sex possible for her (most of the time).
“It’s important not to give up on the types of sex you like to have,” she says. “Even if that type of sex isn’t possible today, there’s always tomorrow, and there is always a way to figure it out, even if you have to go through a couple of doctors to do it.”
It may sound more abstract and intangible than weed lube, but many of the women I spoke with, including Kim, told me their physical pain became manageable once they learned to use their minds to relax and accept themselves when their bodies were functioning less than optimally.
For Kim, a loving relationship with herself she developed through years of therapy and self-reflection was almost as effective as CBD. Now, when her endometriosis flares up, or she’s feeling down, she sinks into a place of self-love that she’s spent years teaching herself to develop. “Sitting with that feeling of love de-stresses me so much,” she says. “The less stressed I am, the less it hurts.” Kim’s pain is far from “all in her head,” but mental relaxation has been shown to calm the physical pain of conditions like endometriosis.
Her biggest source of self love and confidence these days is getting to help other women going through what she did. After picking through every online chat room, trying every therapy, and talking to dozens of other women about sexual pain, she’s now become an invaluable resource for others. “It took seven years for me,” she says. “I want to make sure it never takes that long for anyone else.”