Vulvodynia and Interstitial Cystitis: Causes of Pelvic Pain

An Expert Interview With Susan Hoffstetter, PhD, WHNP-BC

Steven Fox

October 30, 2012

Editor's note: Although about 1 in 7 women in the United States report experiencing chronic pelvic pain, the causes often go undiagnosed. Surveys indicate that about 15% of working women lose time from their jobs because of pelvic pain, and nearly half say it adversely affects their productivity.

Although the cause of pelvic pain can vary widely and is sometimes difficult to pinpoint, some clinicians think vulvodynia and interstitial cystitis are often unrecognized culprits.

A presentation at the National Association of Nurse Practitioners in Women's Health (NPWH) 15th Annual Conference, held in Orlando, Florida, highlighted insights on vulvodynia and interstitial cystitis, and provided practical tips on how to diagnosis and manage patients with those conditions.

In an email interview with Medscape Medical News, Susan Hoffstetter, PhD, WHNP-BC, FAANP, associate professor in the Department of Obstetrics, Gynecology, and Women's Health at the Saint Louis University School of Medicine in Missouri, discussed her presentation.

Medscape: What are the presenting symptoms of vulvodynia?

Dr. Hoffstetter: Women most commonly describe the pain of vulvodynia as a burning sensation, or stinging, soreness, rawness, irritation. Some even describe it as a "cut glass" sensation. Others say it is more of a searing, throbbing, tearing, or stabbing pain.

Women often present with complaints of dyspareunia or pain with tampon insertion. These women can be quite anxious during well-woman exams and report pain with insertion of the speculum.

Women with symptoms of vulvodynia often avoid activities that provoke or worsen the pain, such as prolonged sitting, biking, walking, or even wearing jeans or tight exercise clothes or underwear.

Medscape: What is the prevalence of vulvodynia?

Dr. Hoffstetter: The prevalence is anywhere from 3% to 18% of women of reproductive age, with onset most commonly between the ages of 18 and 25. Sadly, 60% of symptomatic women take an average of 3 different providers to receive the diagnosis of vulvodynia, and 40% of symptomatic women remain undiagnosed. There does not seem to be a difference between races; white, Hispanic, and black women have equal rates of occurrence.

Medscape: Are there predisposing risk factors?

Dr. Hoffstetter: Recognizing that we do not understand the etiology of vulvodynia means that the risk factors are broad and, thus, run the gamut from allergens, early age of menarche and coitus, nulliparity, history of childhood enuresis, abuse (physical, emotional, and/or sexual), chronic skin conditions, and adverse life events (divorce, pregnancy termination, difficult childbirth).

Some people believe the use of oral contraceptives plays a role, causing the downregulation of estrogen receptors, which in turn causes the vestibular epithelium to become thin, fragile, and vulnerable. However, studies don't confirm that association. There is a correlation between oral contraceptive use and increased perception of pain in women with vulvodynia.

Medscape: What are the primary steps for working up a patient suspected of having vulvodynia?

Dr. Hoffstetter: The best tool for making a diagnosis of vulvodynia is your ears — listen to what your patient is telling you! As part of the patient's medical history, make sure you note any association between the onset or exacerbation of symptoms and life changes/stressors, changes in medical status, surgeries, and hormonal changes, including childbirth, lactation, and menopause. Physical examination should include evaluation for infection, inflammatory process, and vulvar dystrophies.

Vulvodynia may present as generalized on the vulva or localized within the vestibule. Q-tip testing is very important in making the appropriate diagnosis of vulvodynia. Note if sensitivity is present on the vulva or within the vestibule at the Skene's and Bartholin glands. Use a 0- to 10-point rating scale, with 0 being no pain/symptoms and 10 being the worst level of pain/symptoms. If a diagnosis of vulvodynia is made, Q-tip testing is helpful as an objective measure of level of discomfort (and hopefully improvement) over time.

Vulvodynia is ultimately a diagnosis of exclusion after all other potential causes have been ruled out and symptoms have persisted for at least 6 months.

Medscape: What classes of medication are available and how effective are they?

Dr. Hoffstetter: The initial treatment for any woman presenting with vulvar symptoms is to institute vulvar skin-care guidelines. These are designed to remove any contact irritants to the vulva, such as scented soaps, detergents, hot water, shaving, and washcloths.

Neuropathic pain medications are the mainstay of treatment for vulvodynia. These alter the perception of pain by blocking reuptake transmitters, norepinephrine, and serotonin.

My first-line therapy is normally the tricyclic antidepressants, including amitriptyline, nortriptyline, and desipramine. I use amitriptyline primarily, which has a 60% response rate. It is generic and readily available at minimal cost. Fatigue is the primary side effect at the low doses used for treatment. Most patients develop a tolerance for this over time.

My next line of treatment is the anticonvulsants. Gabapentin can be used individually or in combination with amitriptyline. More than 60% of patients have shown significant improvement when prescribed gabapentin. I have also used pregabalin, which has been associated with results similar to gabapentin.

Infrequently, I use amitriptyline 2% with baclofen 2% as a topical treatment, but that preparation must be compounded and has greater costs. If the patient has concurrent depression, I will also use a selective serotonin–norepinephrine reuptake inhibitor, such as duloxetine.

I avoid most topical medications because they serve as a contact irritant over time and offer little symptom resolution. I have commonly seen women being prescribed topical lidocaine. This can become a contact irritant with routine use, but it can provide emergency relief to break the pain cycle.

Medscape: Are there any nondrug approaches that have proven to be beneficial?

Dr. Hoffstetter: Many women with vulvodynia have increased resting tone, poor strength, and/or irritability of muscles. In those patients, biofeedback therapy can be very helpful. Biofeedback has a success rate of 60% to 80%.

Physical therapy with a therapist trained in the pelvic-floor musculature can be very helpful, either alone or in conjunction with biofeedback. It is important not to start physical therapy or biofeedback until the vestibular Q-tip testing has improved (i.e., the gland scores have decreased). Starting these therapies too soon will likely inhibit results and give woman a sense of failure.

Since stress plays a role in vulvodynia, any stress-reduction technique, such as meditation and yoga, can be used. Some have found acupuncture helpful. Psychotherapy can be useful because this is a chronic-pain state and women often suffer with depression or relationship problems. It is especially important to let patients know that you understand their problem is a real and debilitating condition, not just "in their heads."

The last option for women suffering from localized vulvodynia is vestibulectomy. This should be considered only after all other options have failed.

Medscape: What is interstitial cystitis (IC), and is there an overlap between IC and vulvodynia?

Dr. Hoffstetter: IC is defined as an unpleasant sensation (pain, pressure, or discomfort perceived to be related to the urinary bladder) associated with lower urinary tract symptoms for more than 6 weeks. Importantly, those symptoms are in the absence of infection or other identifiable causes.

It is thought that there can be overlap between vulvodynia and IC. Studies suggest that the prevalence of concurrent IC and vulvodynia ranges from 12% to 68%. Both IC and vulvodynia are syndromes of the urogenital sinus, including pelvic-floor muscle dysfunction, inflammatory changes with activation of mast cells, increased angiogenesis, and neural hyperplasia.

Medscape: What is the prevalence of IC?

Dr. Hoffstetter: In a population-based study in 2011, it was estimated that the number of American women older than 18 years with IC was between 3.3 million and 7.9 million. IC has been identified across the lifespan, in pediatric and geriatric patients. There are slightly different clinical presentations at different ages.

Medscape: What are the risk factors for IC?

Dr. Hoffstetter: The only risk factors are being female and the association with other conditions, such as irritable bowel syndrome, orofacial pain (temporomandibular joint disorder and burning mouth syndrome), fibromyalgia/chronic fatigue syndrome, anxiety/depression, and psychosocial and sexual impairment.

Smokers have been shown to have more intense symptoms. However, it is important to remember that half of women with IC will have no other condition. As with vulvodynia, the cause remains unknown, so the risk factors are broad.

Medscape: When assessing a patient with symptoms that suggest IC, what clinical "tip offs" do you look for?

Dr. Hoffstetter: Woman will have lower urinary tract symptoms (urgency, frequency) for longer than 6 weeks, with negative urine culture(s) or other identifiable causes.

It's important to be cautious with a diagnosis of recurrent urinary tract infection (UTI). All UTIs should be culture-proven. Many of these patients have IC rather than recurrent UTIs.

Other helpful tips are to have the patient complete a voiding diary that includes a urinary frequency and volume chart, a symptom chart, pain scores, and a food/fluid diary for symptom triggers.

On pelvic examination, woman may have bladder and pelvic pain or discomfort, with tender anterior vaginal wall/urethra, tender levator muscles, and/or sacroiliac/pubic symphysis tenderness.

Medscape: What other disorders/diseases need to be ruled out?

Dr. Hoffstetter: A differential diagnosis should include kidney stones, cancer, tuberculosis, previous chemotherapy or radiation, and gynecologic conditions.

Medscape: What are the most effective treatments for IC?

Dr. Hoffstetter: Treatment for IC is multifaceted. For some, a cystoscopy and hydrodistention, which is a diagnostic procedure, can also be a treatment. Pentosan polysulfate sodium is the only medication approved by the US Food and Drug Administration for the treatment of IC. It has been shown to reduce pain and urgency, but its effects on nocturia are less pronounced. It is most effective when the classic Hunner's ulcers are found in the bladder. When prescribing this drug, it is important to counsel patients that it can take 3 months for the drug to reduce symptoms.

The use of a urinary analgesic, such as phenazopyridine, is very useful in symptom management. Calcium glycerophosphate is a urinary alkalinizer that can be taken with food and serves to neutralize acids commonly found in such beverages as coffee or juice.

Hydroxyzine has been helpful and, in observational studies, produced greater than 90% improvement. Other options include antidepressants. Several randomized controlled trials have shown amitriptyline to be very helpful in the reduction of symptoms. Other options include selective serotonin reuptake inhibitors (like fluoxetine, paroxetine), serotonin norepinephrine reuptake inhibitors (such as duloxetine), norepinephrine reuptake inhibitors (such as atomoxetine), and bupropion.

Dietary modifications and restrictions can give a woman a sense of self-control over her triggers and symptoms. The Interstitial Cystitis Association has developed IC diet guidelines that can be helpful. However, there are always individual variants, which makes it essential for patients to maintain a food diary. Other dietary options include gluten-free, anti-yeast, or alkaline diets. However, there is little controlled research to support those options.

CystoProtek, a nutritional supplement, has been shown to be helpful in observational studies and may work to improve the glycosaminoglycan (GAG) layer and reduce inflammation.

Fluid intake is also important. Caffeine and alcoholic beverages can be a trigger for many women with IC. Concentrated urine is very irritating, so patients must be counseled about this risk and encouraged to drink adequate amounts of water.

Medscape: Are alternative therapies of any benefit?

Dr. Hoffstetter: Bladder retraining is very helpful and allows patients to play an active role in bladder control. Since stress plays a significant role in symptom flares for women suffering from IC, all types of massage therapies, manipulation, and body-based practices are helpful, as are energy medicine and any intervention that helps reduce stress.

Medscape: Are there guidelines for clinicians managing patients with IC?

Dr. Hoffstetter: Guidelines are available from the American Urological Association.

Medscape: When should nurse practitioners refer a patient to a physician or specialist?

Dr. Hoffstetter: Any patient who has symptoms suggestive of IC, negative urine cultures, and no other gynecologic problems should be referred to a specialist for further evaluation.

Medscape: Is there anything else you would like to add?

Dr. Hoffstetter: Both vulvodynia and IC are chronic-pain states that will wax and wane over the course of a lifetime. Stress plays a major role in the expression of symptoms. I find women with vulvodynia and/or IC challenging; they can be difficult to manage for the busy clinician.

Dr. Hoffstetter has disclosed no relevant financial relationships.