Caroline Helwick

October 31, 2017

SAN ANTONIO — When evaluating women with pelvic pain, consider the vestibule, says a urologist and sexual medicine specialist who says clinicians should stop ignoring this underappreciated component of the female anatomy.

Many women diagnosed with interstitial cystitis/bladder pain syndrome (IC/BPS) actually have provoked vestibulodynia disorder (PVD), which is not a bladder disorder and which needs different treatment, according to Rachel Rubin, MD, a urologist and sexual medicine specialist in Washington, DC.

"Women with interstitial cystitis/bladder pain syndrome may have underlying PVD as the pathophysiology and not intrinsic bladder pathology. Treatment of PVD, in turn, may improve bladder symptoms," Dr Rubin said here at the Sexual Medicine Society of North America (SMSNA) Fall 2017 Scientific Meeting.

There is wide clinical overlap between PVD and IC/BPS, as both conditions may include dyspareunia, chronic pelvic pain, and lower urinary tract symptoms. Patients with PVD are diagnosed by having confirmed vestibular pain and positive cotton swab (Q-tip) testing. IC/BPS, in contrast, is a diagnosis of exclusion, and tests that confirm PVD are frequently not performed on patients with bladder complaints, Dr Rubin said.

"Most urologists and gynecologists are not even trained to know what the vestibule is. It's a part of the female anatomy that a lot of people ignore. You cannot exclude a problem with the vestibule if you don't know that it exists," Dr Rubin said in an interview with Medscape Medical News.

In a study she reported here, based on a series of 75 women diagnosed with PVD, 49 achieved at least 40% improvement in pain after appropriate treatment; 33% of this subset had been previously diagnosed with IC/BPS and had not improved with treatment. Treatment of PVD resulted in improvements in bladder symptoms previously attributed to IC/BPS, Dr Rubin noted.

Just What, and Where, Is the Vestibule?

The vestibule is tissue located at the opening of the vagina, surrounding the urethral meatus. The vestibule is essentially the female version of the male urethra. Embryologically, it is the same as the bladder and is differentiated from the vulva and the vagina. Within the vestibule are glands that produce lubricant akin to preejaculate in men. The tissue is androgen-dependent, requiring testosterone to stay healthy, she explained.

Although the vestibule is a distinct entity, it is not recognized as such by most clinicians. "No one teaches about this to medical students or residents: what it is, how to examine it, and what to do about it," she said. "They just want to stick the speculum into the vagina, and when you do that, you don't see this tissue."

The way to examine the vestibule, she said, is to move the labia minora to the side and touch the tissue with a Q-tip. Touching the outside of the vulva or inside the vagina elicits no pain, but a light touch to the vestibule can be quite painful for women with PVD. The pain with the test is often described as burning and cutting, similar to what these women describe with intercourse or tampon insertion, but it can also be more generalized pelvic pain.

Dr Rubin emphasized that this examination, so frequently bypassed, is very simple. "It's not rocket science," she said. "It's a Q-tip around the vagina."

PVD can result from hormonal changes, inflammation, neurological factors, and hypertonic pelvic floor muscles. Deficiency in testosterone is especially common, mostly in younger women receiving oral contraceptives and in menopausal women. Pelvic muscle health is also a big factor. When pelvic floor muscles are tight and overactive, pain can be referred to the vestibule, and this can mimic bladder pain symptoms, she said.

"The pelvis is a bowl of muscles holding the bladder up. If it's irritated, it causes the bladder 'next door' to sense pain," she said. "But it's not actually the bladder that has problem; it's the tissue around and nearby the bladder that's the problem."

Survey Responses

The researchers emailed a web-based survey to 233 patients diagnosed with PVD to learn about their symptoms and treatment experience. Of the 75 women who responded, 49 (65%) reported having at least 40% improvement in their pain after treatment for PVD. Fifteen of the women who responded to PVD treatment had previously been diagnosed with IC/BPS and had not responded to the corresponding treatment.

Many of the women also reported having been erroneously diagnosed with vulvodynia, hypertonic pelvic floor muscles, endometriosis, and irritable bowel syndrome.

Half the women had seen three to five physicians before receiving an accurate diagnosis, and 20% had seen 5 to 10 physicians. More than 10% of women had visited at least 10 clinicians. The vast majority (92%) sought help from gynecologists, whereas 71% saw urologists and 53% saw primary care physicians.

The 49 patients with pain improvement of 40% or more after a PVD diagnosis reported their initial pain/bother symptoms to be dyspareunia (96%); burning, rawness, or cutting in the pelvis (76%); pain with tampon insertion (51%); generalized vulvar pain (49%); urinary frequency (37%); urinary urgency (33%); bladder pain (30%); and relief of bladder pain with voiding (12%).

For their PVD diagnosis, 50% were considered to have hormonally mediated PVD treatable by cessation of hormonal contraceptives (if currently using) and topical estradiol/testosterone creams. Other PVD pathophysiologies included neuro-proliferative PVD (63%), which is treated with vulvar vestibulectomy, and pelvic floor hypertonicity (44%), treated in part with physical therapy. Lidocaine, botulinum toxin into the pelvic floor muscles, nerve blocks, capsaicin, and pain desensitization were other treatments these women received.

Among the 49 patients with more than 40% improvement in pain after treatment for PVD, 88% reported their symptoms improved by at least 60%.

Conversely, under a previous diagnosis of IC/BPS and guideline-based treatment, 71% reported a magnitude improvement of less than 20% in bladder symptoms. These treatments included bladder instillations (69%), "IC diet" (69%), pentosan polysulfate sodium (Elmiron, Janssen Pharmaceutical; 63%), other medications (69%), physical therapy (50%), hydrodistention (38%), and long-term antibiotics (38%).

"The patients had tried many things for their bladder symptoms, but most did not get better under IC/BPS treatments. Then, we fixed their vestibule and most patients were 60% to 100% better. Everyone improved," Dr Rubin reported.

She emphasized the need to heal the vestibular tissue with local hormonal therapy and to relax the pelvic floor through physical therapy. "You fix the local tissue problem, and the muscles around it," she said.

The investigators' recommendation was that providers of women's health should be trained in performing vestibular Q-tip testing, and PVD should be excluded as a diagnosis in patients suspected of having IC/BPS. "Gynecologists and urologists need to learn how to manage these patients. We can make them better," she said.

Think Beyond the Bladder

Session moderator Irwin Goldstein, MD, director of San Diego Sexual Medicine in California, agreed that problems with the vestibule largely go unrecognized and that clinicians should look beyond the bladder. "I think a lot of people who are thoughtful, who don't have a bias toward the need to see this [IC/BPS] as a bladder disorder, will see that it's not a bladder disorder. It's actually outside the bladder," he told Medscape Medical News.

"You can have bladder symptoms when the urethra is made irritated by the vestibular gland surrounding it, or because of pelvic floor issues, or because of psychosocial issues.... We are identifying alleviation of symptoms without dealing with the bladder," he said.

"The key here is not to put the patient in a box, to not [believe you have to] get bladder distention, or intravesical infiltration," Dr Goldstein suggested. "Ok, you have bladder symptoms, but there are lots of potential reasons for this. Let's check them all out. Among other things, get a vulvoscopy, where you can examine the anatomy of the patient under magnification. This should be part of your work-up."

Dr Rubin and Dr Goldstein have disclosed no relevant financial relationships.

Sexual Medicine Society of North America (SMSNA) Fall 2017 Scientific Meeting: Abstract 011. Presented October 27, 2017.

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