Pelvic pain is common and all too real

Washington -- Chronic pelvic pain is widespread, devastating and costly, plus poorly understood by physicians, said John M. Gibbons Jr., MD, past president of the American College of Obstetricians and Gynecologists.

It is also a disorder that inspires shame and isolation for women, said Christin Veasley, director of research and professional programs with the National Vulvodynia Assn. They are often accused of exaggerating or even imagining the pain, she said. It took eight years for Veasley to find a successful treatment for her pain.

It doesn't have to be that way, Dr. Gibbons said at a June 9 Capitol Hill briefing presented by the Society for Women's Health Research.

Among the suspected causes of the pain are uterine fibroids, pelvic endometriosis and vulvodynia, said Dr. Gibbons. Uterine fibroids, for example, are estimated to be present in more than 75% of women, said Dr. Gibbons. While they often cause no symptoms, fibroids have been associated with pelvic pain and pressure, pain during intercourse, heavy periods, infertility, miscarriages and preterm labor.

Fibroids can be treated medically with injections of a gonadotropin-releasing hormone, or GnRH, agonist -- which can only be used for six to nine months -- or with a daily mifepristone, or RU-486, tablet.

Surgical options include either a full hysterectomy or laparoscopic surgery to target the fibroids; or newer techniques such as uterine artery embolization that targets the fibroids' blood supply or MRI-guided focused ultrasound.

Endometriosis affects about 5.5 million women in the United States and Canada, said Dr. Gibbons. While its cause is unknown, a review of the condition in the June 10 Science suggests the pain could result from the growth of a nerve supply into the ectopic endometrial tissue that influences activity of neurons throughout the central nervous system. A genetic link is also suspected, since having a first-degree relative with the condition increases by 10 times a woman's risk.

Treatments include the use of oral contraceptives, GnRH agonists, progestin or danazol, although the later carries more side effects. Surgery to either remove the uterus, fallopian tubes and ovaries or to more conservatively target the errant tissue can also be performed, said Dr. Gibbons.

The discomfort of vulvodynia is most often described as burning, knifelike pain or pain on contact, and survey findings published in the spring 2003 Journal of the American Medical Women's Assn. suggest it could affect nearly 16% of women. Replicating those findings in larger studies would mean "this is a major, major problem that nobody talks about," said Dr. Gibbons.

Gynecologists have very limited knowledge of vulvodynia and patients are often left to do the research and find help themselves, he added. Pain with intercourse is what brings most women with the condition to their physicians, though it's often a long-standing rather than cyclic condition and can include pain with the use of a tampon or from wearing tight clothes.

Broad treatment principles include accurate diagnosis and the validation of a woman's symptoms. Treatment also needs to be sustained and individualized, he noted.

Although there is little information on the most-effective treatments, there is a long list of possible treatments which, because of its very length, can confuse the patient and the physician, said Dr. Gibbons. On the list are capsaicin, a low-oxalate diet, behavior modifications, interferon, gabapentin, lidocaine ointment and hydrocortisone cream.

While there is little research being done on pelvic pain, the National Institutes of Health has established a pain consortium to examine pain more broadly, said Linda Porter, PhD, program director at the National Institute of Neurological Disorders and Stroke.

In addition, Rep. Stephanie Tubbs Jones (D, Ohio), said she will soon reintroduce a bill in the House calling for funding authorization of $10 million each year for five years to study the causes of chronic pelvic pain and to convey information to the medical community.