Help for Intimate Pain

By Denise Foley

Chronic pelvic pain affects 1 in 7 women and is notoriously difficult to heal. New treatments are bringing hope - and genuine relief

As a hypnotherapist in Franklinville, NJ, who works with women with chronic pelvic pain, Loretta Sernekos, PhD, is intimately familiar with her clients' symptoms. She has CPP, too. So she's aware of how, in addition to all the ways they hurt, their distress is compounded by one terrible, frustrating fact: Even after extensive consultations, many still haven't found the root cause of their problem or a treatment that works.

Their doctors, of course, haven't either. What that means for Sernekos's clients and the 15% of American women who suffer from CPP is that nothing can be taken for granted: not walking, sitting, having sex, going to the bathroom, even wearing a favorite pair of tight-fitting jeans, which can press in all the wrong places. "Thank God I love hippie skirts," says Sernekos.

But unlike 1960s-inspired fashion, chronic pelvic pain is ready to be resigned to the past. "Women no longer have to settle for being debilitated," says C. Paul Perry, MD, chairman of the International Pelvic Pain Society and an assistant clinical professor of obstetrics and gynecology at the University of Alabama at Birmingham. "We've made a lot of progress in the past decade in educating physicians about chronic pain."

What doctors now know is that CPP is rarely due to just one problem. "Most women have three or more conditions, each of which adds to their overall discomfort," says Richard Marvel, MD, director of the Center for Pelvic Pain at the Greater Baltimore Medical Center and an assistant professor of gynecology and obstetrics at Johns Hopkins School of Medicine. "If you treat just one cause, the patient won't get much better."

After finally seeking help at a pelvic pain center, Sernekos, for instance, learned she had several underlying conditions: generalized vulvar dysesthesia (pain anywhere in the vulva), vulvar vestibulitis (excruciating tenderness at the entry to the vagina), and a pelvic joint problem that pulls her pelvic floor muscles taut as a drumhead. A carefully tailored treatment regimen has made her 90% better: "I'm no longer in hell," she says.

Still, to find relief, you'll need to be your own educator and advocate. It's essential that you understand some of the more common components of CPP, the subtle differences between them that even doctors miss, and how the various conditions interact with one another and exacerbate your symptoms. Familiarize yourself with the tests you'll need, as well as the menu of conventional and natural therapies available to you. Most important, learn how to find a specialist who knows how to untangle the myriad, mysterious causes of your pain. Your first challenge: Learn why you hurt.

Five common conditions for which your doctor will test are:

1. Endometriosis

5 million women have it

Cells similar to the tissue lining the uterus migrate elsewhere and break down each month in sync with your period.

Telltale signs Severe cramps, often coinciding with your menstrual cycle, that radiate to the lower back and leg.

How it's diagnosed Laparoscopy (a minimally invasive surgical procedure) to perform biopsies (removal of tissue samples for examination under a microscope).

Treatments Frontline remedies include nonsteroidal anti-inflammatory drugs, such as ibuprofen and naproxen sodium, along with birth control pills and other hormones to shrink endometrial tissue. Your doctor may recommend minimally invasive surgery to remove or destroy endometrial growths or, in severe cases, a hysterectomy.

2. Interstitial Cystitis

900,000 women have it

This involves recurring discomfort in the bladder, which may be caused by a breakdown of mucin, cells on the surface of the bladder that protect it from acidity.

Telltale signs Women say interstitial cystitis (IC) is like the worst urinary tract infection they ever had, with burning or stabbing pains when their bladders are full and when they urinate, which some do as often as 60 times a day and night.

How it's diagnosed By ruling out other conditions that could cause the same symptoms. Your doctor will test your urine for bacteria to eliminate a urinary tract infection and use a thin, lighted instrument called a cystoscope to examine your bladder; a bladder wall biopsy may be needed to cross off cancer as a possibility.

Treatments Elmiron, the first oral drug developed for IC, coats the bladder surface and may take 6 to 9 months to be totally effective. Doctors have also had some success with antihistamines, a variety of tricyclic antidepressants (used for their antipain properties), antiseizure medications (increasingly prescribed for hard-to-treat pain), and other medications instilled directly into the bladder.

3. Pelvic Floor Tension Myalgia

Common frequency unknown

Many issues, both physical (such as difficult childbirth) and emotional, can lead to chronic tension in the pelvic floor muscles, which support your pelvic organs.

Telltale signs A heaviness or achiness in the pelvis; burning, itching, and pain in the vagina or urethra (the tube that drains urine from the bladder).

How it's diagnosed Physical examination by an experienced pelvic pain practitioner.

Treatments The most effective treatments involve pelvic floor physical therapy: You'll learn how to align your pelvis and do a core strengthening and stretching routine that helps prevent pelvic floor muscles from going into spasm. Botox injections may prevent spasms by temporarily relaxing the muscles. Trigger point injections of the anesthetic lidocaine relieve pain for some women.

4. Pelvic Congestion syndrome

7 million women have it

Varicose veins in the pelvis cause pain. Like varicose veins in the leg, the valves in veins become weak and don't close properly, so blood pools, causing painful pressure.

Telltale signs Women complain of a dull, aching, throbbing pain in the pelvis, often describing a "heavy" feeling. The pain is absent or mild in the morning and gets progressively worse throughout the day. It improves when you lie down or apply heat.

How it's diagnosed A special test called a transcervical venogram enables your physician to measure the size of the abnormal vein and its rate of blood flow.

Treatments Doctors often first try a progestin hormone, which has been shown in studies to decrease pain and shrink the veins. If drugs fail to provide relief, embolization, a procedure that closes off problem veins, helps as many as 70% of patients. If a woman is finished with childbearing, a hysterectomy, in which the tubes and ovaries are removed along with the affected vein, has been shown to be the most effective therapy.

5. Vulvodynia

6 million women have it

Vulvodynia means "chronic vulvar pain," most often described as a burning or searing sensation. Although the causes of vulvodynia are unknown, experts speculate that previous yeast infections may make some women more susceptible to developing vulvodynia. Another possible cause: nerve damage caused by anything from horseback riding to childbirth. Seventy-five percent of women with vulvodynia suffer from vulvar vestibulitis--pain at the entry to the vagina.

Telltale signs A persistent or intermittent burning or stinging in the vulva that may spread to the buttocks and upper thighs. Inserting a tampon, sitting, or wearing jeans can bring it on. About 80% of women with the disorder have pain during intercourse.

How it's diagnosed The "cotton swab" test, in which doctors touch parts of the vulva to detect pain, helps identify vestibulitis. There is no test for vulvodynia; docs rely on an extensive exam, your health history, and tests to exclude other causes.

Treatments Frontline remedies include antiseizure drugs, anti­depressants, and the topical anesthetic lidocaine. Some specialists have had success by compounding all of these drugs into a topical formula that's applied directly to affected tissues, according to Christin Veasley, assistant executive director and research director for the National Vulvodynia Association. Surgery to remove nerve endings at the entrance to the vagina (the vestibule) helps up to 90% of women with vulvar vestibulitis but is a last resort.

Natural Remedies That Work

Relaxation exercises have been shown to ease pelvic pain. Other natural options:

• Nearly three-quarters of patients who have tried new biofeedback-guided Kegel exercises have found relief for pelvic floor tension myalgia, says clinician Howard Glazer, PhD, of Cornell Medical School.
• An organic diet with no red meat or dairy containing hormones helps some women with endometriosis.
• Women with vulvodynia or endometriosis have found relief from acupuncture treatments.
• A low-acidic diet that excludes bladder-irritating foods such as coffee, tea, citrus fruit, hot peppers, and chocolate may ease symptoms in women with interstitial cystitis.

Because CPP involves several body systems, including the bladder, colon, and uterus and all their respective nerves and muscles, only a pelvic pain specialist possesses the broad knowledge and experience required to provide you with an accurate diagnosis and appropriate treatment. Although some gynecologists have developed practices focusing exclusively on the syndrome, most CPP specialists can be found at pelvic pain clinics, which are usually affiliated with hospitals.

There, you will likely find your "specialist" to be a team that includes a gynecologist, urologist, physical therapist, psychologist, and specially trained nurse-practitioner. Experience has taught them that CPP almost always has more than one cause; if they find that you have endometriosis and a musculosketal problem, for instance, all can be treated at the clinic.

To find a center in your area, ask your regular doctor or gynecologist, consult teaching hospitals.