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Pelvic Pain Disorders: Understanding The Diagnostic Delay

January 21 2021 | Written by Rhea Kumar (She/Her)

In her early twenties, Leilani was a Master’s student pursuing her Master’s in Arts and Social Work at the University of Tel Aviv. Like many young individuals, Leilani went through primary education learning very little about her own anatomy, as health class and sex ed tutorials often preached the absolute bare minimum: “Don’t get pregnant! Get Plan B!”, she says. There was no discussion of sexual dysfunction, nor any mention of pain disorders like vulvodynia, a pain disorder that affects as many as 16 percent of American women aged 18-25. 

One day as she sat on the bus, she began to feel a strange and debilitating pain in her vagina that she says, “convinced me that my vagina was on fire.” 

Leilani had already suffered from central sensitization and Crohn’s disease. But this pain, she says, felt different. She thought it could be an STI or yeast infection. It wasn’t. That’s when she began searching for answers. This meant visiting a host of medical professionals including gynaecologists, a urinary gynaecologist, dermatologists, and psychologists. She made a list of all the things that she could possibly be diagnosed with, and she made the educated guess that she was suffering with vulvodynia, a chronic pain of the vulva with no known cause. 

An International Search for Answers

From Tel Aviv, she traveled to Jerusalem, where a gynaecologist confirmed her suspicions: she had officially been diagnosed with vulvodynia. While this should have been a celebratory moment, it wasn’t. She was handed numbing cream and sent on her way. “When [my doctor] handed me numbing cream I just thought, are you kidding me?” she says. "The doctor didn't even describe what vulvodynia was, and there were no resources at my disposal.” The pain began to worsen and the symptoms escalated from burning to throbbing. 

My sexuality was taken away from me. When I had sex, it felt like I was on fire. Mentally I’d want it, but physically, it wasn’t enjoyable.”

The pain was 24/7, she says. While she was sleeping she couldn’t feel it, but as soon as she opened her eyes, it would begin again. Though the numbing cream made it worse, she continued to use it until she returned back to Canada. Upon her arrival, she compiled a new list of specialists to see. In June 2020, she went to the B.C. Centre for Vulvar Health, but at that point she was losing hope. The pain was excruciating, she says, and there were still no proper answers from medical professionals. 

“I was told by one doctor before returning to Canada, if it’s pelvic pain it must be caused by sex, and they told me Just drink a glass of wine before sex.’ One psychologist told me that it must all be in my head,” she says. 

She decided that after visiting more than twenty-five specialists, it wouldn’t hurt to visit one more. In March 2020, she booked a flight to New York to visit Dr. Goldstein at the Centre for Vulvovaginal Disorders. According to the website, the center provides patients with expert diagnoses and treatments of vulvovaginal diseases. While COVID travel restrictions prevented her from traveling to the center’s New York office, Leilani was able to have a virtual appointment with Dr. Goldstein and that’s when she says the puzzle pieces began to come together. 

By examining her test results and assessments of her symptoms, Goldstein diagnosed Leilani with vestibulodynia, pelvic floor dysfunction, overactive bladder, and pudendal neuralgia - which affects both men and women. 

So, why did it take her 25+ specialists to seek the answers she needed?

Simply put, it’s difficult to diagnose such dysfunctions with a simple blood test or an invasive surgery, which is commonly used to diagnose endometriosis, another common pain disorder amongst women. Physical examinations require specific training. Training that Leilani says, a majority of the specialists she visited did not have. A cotton-swab test is a common procedure for diagnosing potential vulvodynia. However, this test can be painful and in some cases, it's not always accurate.  

Although Leilani is asking less questions today as she was two years ago, she still has many doctors on her list, as her pursuit for proper treatments continues. Through her journey, she has come to the realization that treatment requires a multidisciplinary approach. Currently, she works with a team of specialists including a gynecologist, vulvovaginal specialist, pain management specialist, naturopath, kinesiologist, psychiatrist, pelvic floor physiotherapist and a counselor.

Today, she is using social media to advocate for those suffering with painful pelvic disorders. Her Instagram account @pelvichealthguru has close to 2,000 followers. This is a space that Leilani says she encourages people to share their stories and know that they’re not alone. She is the co-creator of the Ultimate Pelvic Pain Resource Guide, which she believes will save sufferers many steps that she had to figure out on her own.

The Ultimate Vulvodynia + Pelvic Pain Resource Guide, a first of its kind, Created by Leilani A (@pelvichealthguru) and Michelle M (@the.happy.pelvis). Leilani and Michelle's hope for this guide is to help others learn about their conditions, advocate for themselves and find the support and treatment they deserve.

Writer’s note: Initially, I wanted this week’s blog to be an examination of the lack of proper medical guidelines to diagnose pain disorders such as endometriosis, a pain disorder that is caused when tissue that resembles the lining of the womb is found outside the womb. However, after meeting Leilani, I knew that her experience, despite not being caused by endometriosis, is all too common for sufferers who are searching for answers and was integral to understand the frustrating medical process. Although all pelvic pain disorders are uniquely different, there’s one commonality: there is an extremely long diagnostic delay. 

The Diagnostic Delay 

The average diagnostic delay of endometriosis is 6.7 years on average, mainly due to delays in referral from primary care to a specialist. 

Clinical guidelines do not provide a consistent approach to the diagnosis and management of endometriosis with little attention given to the presence of comorbidities, which may contribute to diagnostic delays. 

The delay from first symptom to surgical diagnosis can take up to 11 years. There’s a reason why Orrin Hatch, president pro tempore of the United States Senate called endometriosis nothing short of a public health emergency. 

What does this say about the medical health gap for the care of female reproductive disorders? 

Many health professionals argue that the current guidelines for diagnosing endometriosis are simply not effective, and are too reliant on surgical means. This isn’t to say that the impact of surgical diagnosis should be minimized. However, a panel of doctors at the American Journal of Obstetrics and Gynaecology believe that there’s a certain call to action that all practitioners should aim to meet, and should be compelled to make the diagnosis of endometriosis more accessible. 

 The current data on early early detections without surgery are scarce, however that isn’t to say that early detection solutions do not exist. On the future possibility of more accessible non-surgical solutions, the panel of doctors argue, “potential exists to relieve pain, to avoid central sensitization and pain persistence, to prevent infertility, and to change the trajectory of patients’ lives.”

The truth is, these aren’t just pain disorders. They impact a sufferer’s cumulative life as it imposes limitations on life choices including education, career, and family. 

In Leilani’s case, she has not been able to work since the onset of her pelvic pain. 

So, where do we go from here? 

Dr. Robert L. Barbieri says that both patients and clinicians are responsible for the delay of diagnosing endometriosis. He says that “women are often reluctant to report the severity of their pelvic pain symptoms, and clinicians often under-respond to a patient’s first report of severe pelvic pain symptoms”. 

Barbieri says that increasing vigilance for endometriosis will shorten the time between the onset of symptoms and definitive diagnosis. The same can be said for other pelvic pain disorders, says Leilani. Today, she is studying sexual education at the University of Alberta and points out that “we need to understand that good health and wellness is akin to good sexual health. Young women/individuals are taught that ‘the first time hurts’, so when you teach an entire group of people that ‘pain is okay,’ then you train them not to take initiative when their body is in pain.”

Despite her shakey journey that is still being fulfilled, she believes that awareness is an important step. Above all, she emphasizes the importance of hope.  

“Just to have a doctor to listen to you and validate your truths and symptoms makes a world of a difference. I just don’t want people to feel that pain, I can’t even imagine the pain that others are going through” she says.