Because chronic pain can be a complex problem to diagnose and treat—and may require doctors from various specialties, depending on the cause—it's a good idea to start with a doctor whom you trust to help coordinate your efforts to seek relief. That may be your primary-care doctor or your gynecologist. "The most important feature of a doctor is somebody with whom you have a good relationship," Scialli says. "See a doctor who will listen, who will take a careful history and do a careful physical, and [who] doesn't use surgery as the only treatment for everything."
To determine the cause of pelvic pain, doctors ask patients many questions as part of the evaluation process. "I routinely ask them about where else they hurt" to help figure out whether the person has a regional pain problem or a more specific cause like endometriosis or irritable bowel syndrome, Scialli says. "I say, 'Does your neck hurt? Does your shoulder hurt?' The fact is sometimes they hurt everywhere, but it's the pelvic pain they can't explain." In contrast, they may attribute back pain to a car accident long ago, shoulder pain to carrying a heavy purse, or headaches to migraines. If the answer is that the pain is widespread throughout the woman's body, Scialli says, the woman may have a pain processing problem rather than another cause for her pain.
For women whose pain is caused by a problem with pain processing, regular exercise can be helpful, Scialli says. But exercise is "difficult because it's uncomfortable for people in chronic pain," he adds. Getting regular, consistent sleep also helps, which can be done by improving sleep hygiene or trying a tricyclic antidepressant, prescribed not for depression but to help people in chronic pain get a good night's rest. "Tricyclics will often improve sleep and pain processing, and along with exercise, they can work really well," Scialli says. Newer medications such as Cymbalta, approved for the treatment of fibromyalgia, are also used for the treatment of chronic pelvic pain. And a referral to a pain clinic or physical therapist or for cognitive behavioral therapy can be helpful, too, experts say.
For those diagnosed with endometriosis, the recommended treatment options potentially include prescription or over-the-counter nonsteroidal anti-inflammatory medications, hormonal therapy, and laparoscopic surgery to remove scar tissue, growths, or adhesions while leaving reproductive organs intact. A hysterectomy is considered to be a surgery of last resort, especially if doctors are not certain a hysterectomy will totally eliminate the pain. About 30 percent of women with chronic pelvic pain who are ultimately referred to pain clinics for treatment have already undergone a hysterectomy, according to the National Pain Foundation.
Some doctors are relying on unusual methods to handle hard-to-treat endometriosis and chronic pelvic pain cases. The most recent laparoscopic procedure Collins underwent, in November, was a pain mapping procedure in which she remained awake while Cook, her surgeon, probed various points in her pelvic area to try to determine the source of her pain.
"Conscious pain mapping can help identify the cause where we're not sure of the cause," Cook says of the procedure he's been doing since the early 1990s. When a source is identified, the patient is then put to sleep, and Cook removes the offending tissue. But because this procedure is painful—about a 6 on a scale of 1 to 10, despite efforts to keep the patient comfortable—it's not commonly done elsewhere in the country. Still, a small study Cook conducted suggests it can be useful for difficult endometriosis cases. The cause of pain was identified in 11 of 13 cases Cook studied, and endometriosis was confirmed in eight out of the 13 cases.
Collins says that she would have a repeat of the pain mapping procedure, during which Cook removed adhesions causing her to have pain along the right side of her pelvis, if it became necessary. "It means that I can actually have a quality life," she says. "I don't have to sit and watch everybody else have a life."