Imagine not being able to have sex, wear jeans, or even sit for prolonged periods of time without experiencing excruciating pain. For the 16% of women who suffer from a pelvic pain condition called vulvodynia, this is their life. (For comparison, 1.3% of women are diagnosed with ovarian cancer and 12% are diagnosed with breast cancer.) From failed marriages and abandoned careers to suicidal thoughts and the struggle to discover medical answers — this condition controls how women attempt to live. What’s it like to endure this level of pain, and why aren’t more doctors qualified to diagnose and successfully treat women with vulvodynia?
Jessica, 24, from Kalamazoo, Michigan is one of many women who asks herself these questions every day. Her journey with vulvodynia began when she woke up with a red rash. She assumed it was a yeast infection, like many women who suffer from vulvodynia do, but when the burning persisted, she sought medical help.
“I’ve visited 11 doctors in four months,” says Jessica. “I’ve been to gynecologists, dermatologists, and primary care doctors, just because nobody could figure out what’s wrong with me. So I kept going to different doctors, showing them my symptoms and seeing if they had anything they could figure out. They couldn’t. They just kept passing me along to other people.”
Dr. Pamela Morrison, a doctor of physical therapy who has expertise in treating pelvic pain and Vice President of the National Vulvodynia Association, says it’s common for patients to visit three to five doctors before finding someone who can provide them with the right care. “They have to find a practitioner that has expertise,” says Dr. Morrison. “There are OBGYNs that specialize in vulvar pain. It’s up to an OBGYN who doesn’t have specific training in vulvodynia to know who those providers are.”
I’ve visited 11 doctors in four months. I’ve been to gynecologists, dermatologists, and primary care doctors, just because nobody could figure out what’s wrong with me. I kept going to different doctors, showing them my symptoms and seeing if they had anything they could figure out. They couldn’t. They just kept passing me along to other people.
If your regular gynecologist doesn’t provide recommendations, she suggests doing your own research to find the right care provider. “Find a provider that is an expert in pelvic pain,” Dr. Morrison says. “Don’t just go to the regular gynecologist, but research for a new provider. How participatory are they in the field of pelvic pain? That’s going to really help get better, faster.”
Elisa, 24, from Parma Ham, Italy was also originally diagnosed with having yeast infections, something Dr. Morrison says was very common about 10 years ago. When Elisa’s pain continued, she consulted with additional doctors but struggled to be taken seriously. “Every time I said, I’m really in pain, everybody said, ‘Oh, but you’re really young. It’s probably just because you’re having your first sexual experiences’ or ‘You just need to relax,’ and it felt really frustrating.”
Vanessa, 20, from Calgary, Alberta, Canada experienced pelvic pain after her first several sexual experiences. She described the pain as having glass in her vagina. “I’ve actually had doctors tell me that it was in my head and that vulvodynia was something women used to get sympathy for what was ‘normal pain.’”
My friends don’t understand it at all. They told me it was all in my head and I needed to reduce my stress, like I was maybe causing a physical manifestation.
For women with vulvodynia, the pain is so real it can force life changes like having to quit work.
Angelina, 38, from Charlotte, North Carolina was a surgical technician for three years. When she became diagnosed with vulvodynia two years ago, her daily surgical responsibilities became too strenuous to continue working. “If I worked a two-hour surgery, I’d have to go into the restroom and apply 5% lidocaine cream so I could get into the next surgery.” Even wearing scrubs would irritate her vaginal burning. Most days after work, she’d come home and lay with ice packs to recover.
“I loved my job,” Angelina says. “I used to look forward to going to work. I’d be excited to come home and say I helped this person. And now I stay home and I’m lucky if I can do the laundry because of the bending and lifting. I get up in the morning and think, why get dressed? I’m not going to do anything today but lie around the house.”
Depression is often a side effect of vulvodynia. Dr. Morrison shares research from a literature review, which describes how women who suffer from chronic pelvic pain experience depression more often. Between 17% to 38% of women with chronic pelvic pain also suffer from depression and anxiety disorders.
Jessica had previously suffered from depression and anxiety, but the vulvodynia diagnosis has worsened her symptoms. Some days are so severe she can’t leave bed, and suicidal thoughts pour into her mind: “I think a lot of people think of suicidal thoughts as cries for attention, but they’re very real. The thoughts are more like, ‘I don’t want to be here because I’m so tired of the pain.’”
Her suicidal thoughts increased the night she came home after a doctor’s appointment at a pelvic pain clinic. Jessica had entered the office hopeful and prepared as she carried a three-ring binder full of prior test results and symptoms.
“They sent me home with a bunch of pills that I knew weren’t going to help me, and it felt like a death sentence,” Jessica says. “Almost like, well, you have cancer and you’re going to die, but here are some pills to help with the pain. See you at your funeral.”
For women with vulvodynia, the pain is so real it can force life changes like having to quit work.
She was prescribed a large bottle of Neurontin, an anticonvulsant pill. The pills sat in her medicine cabinet next to other bottles she had accumulated from prior doctor visits: antidepressants, anti-anxiety pills, and painkillers. “I was sitting in the bathtub and the only thing I could think about was how easy it would be to just take all of this medication and not have to wake up in the morning, not have to go through the pain, not have to go through the hopelessness,” Jessica shared.
This feeling of hopelessness enters the bedroom too, and romantic relationships become tested.
Angelina, married for 17 years, says her husband and her were like jackrabbits before her vulvodynia diagnosis and would have sex three times a week. Now she says it takes three things to have sex with her husband: time, patience, and lidocaine cream.
Her husband struggled to understand how intercourse could hurt her when she had previously been fine having sex. “You go to pull something out of the oven,” she explained to him, “and you hit your hand on the top of the oven, that searing red hot, that instantly blisters — that is the burning sensation that I have in my vagina.”
Jessica and her girlfriend have been dating for eight months, and she feels guilt for the lack of spontaneity in their sex life. “I tend not to engage in passionate kisses because I know it’s going to build in intensity and I never know if I’m going to be ready for it.”
Sex must be planned. Jessica needs time afterwards to take a warm bath and apply lidocaine cream. She avoids sex on nights before work because she often needs the next morning to recover from pain. “I feel like I’m robbing my girlfriend of the intimacy that you’re supposed to have in the first year — the honeymoon period of a relationship.”
Ashley, 30, from Oxford, Michigan struggled for two years to have sex with her then boyfriend and now husband, but the challenge became more frustrating as newlyweds: “I was determined to be a normal newlywed and have sex with my husband on my honeymoon. I went to my doctor and got the medication that had worked in the past…and it didn’t work. Then I tried marijuana because we were in Jamaica and why not? And it didn’t help.”
I feel like I’m robbing my girlfriend of the intimacy that you’re supposed to have in the first year — the honeymoon period of a relationship.
Ashley has been married for four years and she says she can count the number of times they’ve had sex on both hands. She tried explaining to her husband that she simply does not have sexual urges anymore. He questioned it and asked why she loved romance-related stuff like romantic-comedy movies and romance books. “Honestly, because I wish I was them,” says Ashley. “I wish I had the ability to do that stuff. They’re normal and they can do normal girl functions.”
Dipika, 29, from Toronto, Canada had been married for seven months before they could have sex. Within the first year of marriage, she discovered that her husband had an affair, and the two then divorced. Dipika says, “I did hear from my ex-mother-in-law after I think he may have told her. She was like, well he might not have cheated, if she had put up with it.”
Now Dipika keeps her experience with pelvic pain to herself, afraid of being judged by what others might say about her. Other women can relate to feeling alone in their struggle with vulvar pain.
“My friends don’t understand it at all,” says Jessica. “They told me it was all in my head and I needed to reduce my stress, like I was maybe causing a physical manifestation.”
Elisa struggles to have her mom and sister understand how serious the issue is too. They don’t believe that her pain is real. “They’re like, ‘You’re too focused on this, try to think about something else and get distracted.’ But I cannot get distracted. It’s not like I can get distracted and just put on my skinny jeans and go for a walk. I’ll burn for three days,” Elisa says.
Even within online vulvodynia support groups, she describes how women are shy to talk candidly about their conditions. “Lots of women are still embarrassed to talk about it,” Elisa says. “Women lower their voice when they say vulvodynia, as if it was Voldemort or something.”
Online support groups are a positive resource and an accessible way for women to not feel isolated. One of these groups is the popular private Facebook group, “Vulvodynia Support,” which hosts over 3,000 women and encourages its members to be candid with their emotions, struggles, and treatment plans.
Finding the right treatment is a common and frustrating challenge for vulvodynia sufferers. Dr. Morrison describes her method for assisting her pelvic pain patients. “The first way of helping women is to give them the time to tell their full health history and story of how their pelvic pain began. My office holds hour and a half evaluation time for these patients, which is needed to understand the history, complete the physical exam, create a treatment plan, and provide some treatment in the first session.”
Treatment plans can include physical therapy using specific techniques to address pelvic floor muscles. At-home exercise programs focused on pelvic floor muscles may also be recommended. Another common treatment is the use of vaginal dilators, used to help expand the vaginal walls.
“Once a plan is agreed upon by the patient, a report is sent to their referring physician,” Dr. Morrison says. “Because a multidisciplinary appraise has been proven to be most effective, we team up with their physicians to determine if other tests such as MRIs, nerve testing, or other interventions might be helpful such as pain management, acupuncture, sex therapy, or counseling.”
Finding the treatment to cure their vulvodynia is still a mystery and an ongoing mission for these women. And while living with pelvic pain can feel overwhelming, frustrating, and lonely, the one thing that motivates them to attend countless doctor visits, test new medications, and attempt to have intercourse is hope. Hope that one day it will get better, a doctor will prescribe the cure, and they can enjoy the simple pleasures of wearing jeans or taking a long car ride again.
“I’ve overcome a lot in my life, and this is just one of those things that I’m going to overcome,” Jessica says. “It’s going to become part of my story, but I don’t know how or when it is going to end.”