Women with chronic pain disorder struggle to be diagnosed

By Valerie Lapointe

Katie Payne was in the prime of her life – a 25-year-old married illustrator living in New York City.  Yet she was suffering quietly from  the worst pain of her life.

The sharp painful sensation emanating from inside her vagina and externally on her vulva had intermittently plagued her since puberty. But since hitting her 20s it had become chronic and consistent, affecting her ability to comfortably walk and sit, not to mention having a sex life or using feminine hygiene products.

“I had no idea what was wrong with me, I just knew I was in a lot of pain and regular painkillers did nothing to help. So I started researching vaginal pain and all sorts of frightening things came up, none of which seemed to pertain to me,” said Payne.

She first sought help from her ob/gyn, who told her the pain was an adverse reaction to her IUD. She had it removed, but she felt no change. Her general physician suggested the problem was all in her head, and referred her to a psychiatrist.. Still the pain persisted.

“It got to the point where I would run home from work, lay on my bed and cry.” said Payne. “I was in too much pain to do anything else.”

Eventually Payne ended up in Washington D.C. at a practice that specializes in vulvo-vaginal disorders. By this time, her insurance had cut her off, so Payne paid $1,000-plus dollars out of pocket for the appointment, and left with a diagnosis of pelvic floor dysfunction, a condition requiring physical therapy and a specially formulated medical suppository.

Returning to New York, she dutifully endured more than 20 physical therapy sessions that involved laying down while a therapist applied pressure to her pelvic muscles to relieve stress. But it was an  excruciating ordeal since any contact was painful. When her condition failed to improve, she was told that botox injections were the next step in calming her over-tensed muscles.

Payne returned to D.C. for the botox injections and was told by the specialist that her pelvic muscles had in fact improved, and her diagnosis had changed. The specialists told her she had hormonally mediated vulvodynia, meaning that her pain was being caused by a hormonal imbalance. Blood work confirmed low estrogen levels, so low in fact that it appeared she was entering menopause. She was advised to stop going to physical therapy and instead begin regularly applying a topical estrogen cream.

“At 25 years old, I was told I was going into menopause, I knew that couldn’t be correct, so I found a hormone specialist who looked over my blood test results from D.C. and asked me if I had been approaching menstruation at the time of the test. And when I said I had, she told me that my hormone levels were normal for that point in my cycle. I was livid. How could they not have asked that question? They’re a doctor’s office that works exclusively with women!”

She still didn’t have a correct diagnosis. To compound the problem, the prescribed hormone ointment failed to relieve her pain – intensifying it instead. After a few weeks of using the hormone cream, her pain had escalated from irritating to debilitating.

“It felt like I was rubbing acid on my body when I used the ointment, at one point I fell on the floor, gasping from the agony.” said Payne. “Then I took myself to the hospital. I didn’t know what else to do.”

At the hospital, Payne consulted with another vaginal specialist, and after presenting her medical file and the ointment she was using, a doctor told her “that’s not going to help you at all.”

“There was a moment where the specialist dropped his guard and said, ‘Doctors want to try and fix people, we want to diagnose you, we want to help. But the truth is, no one knows why this happens, we can only treat the symptoms, or perform a vulvectomy.’”

A vulvectomy is a gynecological procedure in which the vulva is partially or completely removed. It is usually performed as a last resort in certain cases of cancer, human papillomavirus, or in cases involving genital mutilation. The recovery lasts 2-3 months, and requires you to be bedridden, as sitting puts too much pressure on the stitches. Payne had heard this procedure mentioned before, but had hesitated to accept such drastic measures.

“This specialist told me, it’s not that bad, it’s not that invasive. How could cutting off part of my body that is full of nerve endings not be that bad, or invasive?! But that was my rock bottom, I had tried so many things, I was desperate for relief and thought it was my only remaining option. So I scheduled the surgery.”

Frustrated, Payne utilized art as an outlet. “Anything to do with the vagina often comes with pictures of flowers, beautiful colorful flowers like Georgia O’Keeffe. And they look so delicate, so sanitized, so beautiful. What was happening to me was none of those things, it was painful, and I was made to feel ashamed and lost about it. So I bought some flowers, and I burned them.”

Photo by Katie Payne

Awaiting her surgery but desperate to find more information about the procedure she had hesitantly signed herself up for, Payne spent her evenings frantically googling her symptoms in hopes of finding another solution. What she found instead was that she wasn’t alone.

“In one of my pain-induced googling binges, I found a closed Facebook group for women called ‘Vulvar Vestibulitis Syndrome (VVS) & Vulvodynia Awareness.’ Reading the testimonies of the women in the group, I knew I had what they had.”

Through the Facebook group she found Lacey Enderle-Tapp, a woman with the same condition, who had endured a vestibulectomy. She had a portion of her vestibular tissue removed,  after suffering through 15 years of misdiagnosis, disagreeing doctors, and treatments that caused more pain than they relieved. Like Payne, she was prescribed a lidocaine numbing cream and a topical estrogen cream, dabbled in diet changes and physical therapy to alleviate muscle pain, and even tried medical marijuana. Nothing brought significant relief. She too arrived at the decision that the surgery was her best, and potentially last option. She had the procedure.

“The surgery was a very difficult procedure to recover from.” said Enderle-Tapp. “I couldn’t sit directly on the stitches, and had to use ice packs constantly. Many times I thought I was going to pass out from the pain. Eventually I was released to fly home, but that was awful. I had to slump in the airplane seat to avoid directly sitting on the vulva. I ordered a wheelchair service to push me around and once I made it home I was bedridden for five more weeks until the stitches could come out. I will never get that pinching stinging horrible pain out of my mind.”

Despite the excruciating recovery, Enderle-Tapp said she made the best decision she could, with the information she had at the time. But unfortunately, her drastic step wasn’t as curative as she had hoped.

“My surgery went great and I did find significant relief from the burning pain for about six months. Then I noticed that I still needed numbing cream to function and have sex and my bladder was still spasming out of control. The burning began to get worse again which led me to continue searching for answers and relief.”

That search led her to the Facebook group where she pet Payne, a group where 700+ women were already sharing their stories and struggles.

One group member wrote on the group page, “I went to the doctor and they told me I had vulvodynia, and I was relieved until I learned that that meant. It means chronic, unexplained pain in the area around the opening of the vagina, but in Latin. That’s not a diagnosis, that’s an insult! I already knew I was in pain!”

Another woman lamented, “I had to do my own research. I had to tell my doctor I thought I had pelvic floor dysfunction. If doctors were more educated about this maybe I could have received the correct treatment sooner. This has been going on for 20 years now. I never had children and didn’t feel I should if I didn’t know what was going on with my body. I am now past child-bearing age. I lost out on a lot because no one diagnosed me properly or promptly.”

Some felt their struggles were examples of women’s health issues that generally ignored or under-served. “It’s hard for me when I see ads all the time on TV for erectile dysfunction. There are so many drugs out there to fix these problems that aren’t painful problems, they’re just sexual dysfunction problems for men, and then we have a condition like vulvodynia, which affects every aspect of life for women and it’s almost like we aren’t allowed to talk about it.” said another Facebook group member.

Women with vaginal pain disorders go to dozens of doctors appointments before receiving a proper diagnosis and helpful treatment.
Women with vaginal pain disorders go to dozens of doctors appointments before receiving a proper diagnosis and helpful treatment. Photo by Katie Payne

These stories are tragically typical for women with vaginal pain disorders. A study published in the journal Sex and Relationship Therapy, “The Diagnosis of Provoked Vestibulodynia,” surveyed women with the condition about their journey from their first appointment to their final diagnosis. The survey found that, “35 percent of women reported having over 15 appointments and 37 percent of women indicating it took over 36 months to receive a correct diagnosis.”

Participants in the study were asked to report on the most critical moments of their diagnostic journey. From this open ended prompt four themes emerged: the need to self-research; frustrations with lack of proper medical care; an appreciation of empathic health care; and negative emotions associated with the diagnostic experience. Nine percent of women mentioned that they brought information to their doctor, usually by finding it on the Internet and 52 percent reported the most crucial aspect of their experience was the frustration they felt over the entire process.

Women in the study echoed the experiences of women in the Facebook group – misdiagnosis, treatments that did more harm than good, having to make multiple doctors visits, and generally not being believed when they described the levels of pain they were experiencing.

After Payne heard Enderle-Tapp’s surgical story, she decided that she would cancel her surgery, and instead book a plane ticket to Arizona to see the physician that Enderle-Tapp and many other women in the group had turned to – Dr. Robert Fowler, a leading specialist of vulvovaginal health in Paradise Valley, Arizona.

“Right away he was so different from every other doctor I had seen,” Payne said. “Not only was he way cheaper than other specialists I had seen -, only $250 per appointment compared to the $1,000-plus I had paid before – but he seemed to really know what he was talking about, and performed a test I hadn’t had yet, which is amazing given all the doctors I had already seen.”

Fowler worked at the Mayo clinic as a vulvovaginal specialist for 22 years and, while there, he developed a different approach to diagnosing vulvovaginal issues. “Obstetricians in medical school are taught that there are only four typical patterns for vaginitis, but it is actually far more complicated than that.” Fowler said.

In 2007,  Fowler published a landmark study in the peer- reviewed Journal of Lower Genital Tract Disease, which expanded the known spectrum of altered vaginal flora patterns. Up until then, medical literature commonly referred to vaginitis as consisting of four types of flora patterns. Fowler proposed a new vaginitis classification system that expands the types of vaginitis to 10 types.

In order to detect these altered vaginal micro-flora patterns, meaning any microbial pattern that deviates from the known four patterns of flora, Fowler developed a vaginal fluid analysis (VFA) test. A VFA test provides quantitative analysis of the vaginal fluid constituents, providing far more information that the conventional wet-prep pelvic exam women receive at the gynecologist’s office. The analysis can determine if your vaginal micro-flora is one of the normal healthy patterns or one of the abnormal “altered vaginal micro-flora patterns.”

Many “healthcare providers are unaware of the existence of altered vaginal micro-flora states, which is why it is so often misdiagnosed.” Fowler said.

“The vagina has a normal micro-flora ecosystem consisting of 30+ co-existing strains of bacteria at any one time. Normally, the “good” bacteria are numerous enough to coat the entire vaginal mucosal surfaces forming a protective barrier. Problems occur when a shift in bacteria milieu occurs and the “bad” strain proliferate and dominate the “good” strains,” according to Fowler’s website. “The vaginal secretions that result from the altered flora patterns flow down and bathe the tissues surrounding the vaginal opening causing variable symptoms including discharge, odor, irritation, itching, burning, sense of urinary frequency and urgency depending on the innate sensitivity of a particular woman’s tissues and even the propensity for recurrent bladder infections in some women. Altered vaginal micro-flora patterns are in and of themselves relatively harmless; but the symptoms that can occur in association with their presence can range from annoying to agonizing and lifestyle altering.”

If a woman has one of these altered vaginal micro-flora states, and given the resulting diagnosis of Inflammatory vaginitis, Fowler puts them on a protocol that involves medication, and a system of skincare products that helps get them back to normal, and generally within six to eight months, the pain stops.

“I am strictly following Dr. Fowler’s protocol. So far my bladder is back to normal. Which is HUGE for me. I was peeing every five minutes with pressure and pain and now i function normally again without constant urgency and pain.” said Enderle-Tapp “The vestibule is slowly getting better. Dr. Fowler says it won’t be until the 8 month mark that I feel significant relief. I am at 4 months now so I am halfway there, but very hopeful.”

She said she is far more optimistic about the future but with one caveat, “I am concerned that if I am fully healed by Dr. Fowler’s protocol I may regret having the surgery.”

Payne has just begun her treatment, but reports already finding some relief. “He gave me a laundry list of soaps and products to avoid, anything with [preservatives  or] irritating fragrances, and said to give eight months for the medication to work. With all the information and literature he provided I am confident that this time, with this treatment, I might finally be healed.”

Fowler’s VFA test has produced accurate diagnoses leading to positive results, according to the women in the Facebook group. Testimonies lauding his success are abundant on the Facebook group page and on Fowler’s website. However, detecting altered vaginal micro-flora patterns requires extra time, training, an advance set of skills and expensive microscopic equipment, resources many ob/gyn offices don’t have, according to his website.

Since proper diagnosis for the condition is so elusive, estimates of the prevalence of this condition vary, ranging anywhere from 4 to 40 percent of the female population. A study published in the British Columbia Medical Journal, “Provoked vestibulodynia: A qualitative exploration of women’s experiences” estimates that of the women who are diagnosed, anywhere from 4 to 28 percent of them are chronic lifetime sufferers. A different study published in Obstetrical & Gynecological Survey puts the number of chronic sufferers more narrowly at only 7 to 8 percent.

As the recently publicized congressional inquiry into the defunding of Planned Parenthood demonstrates, sexual health and reproductive health are very political issues for women, often plagued by excess of opinion and rhetoric. But vulvodynia sufferers would argue that any women’s health issue that lies outside that spectrum can too often be overlooked.

“There seem to be no solutions for women who aren’t experiencing a sexual issue or pregnancy,” said Payne. “But my pain was real, and getting it treated properly was the feminist fight of my life.”

Photo at top: Patient room at Dr. Fowler’s practice in Paradise, Valley AZ. (Katie Payne)