During Lisa Collins's first menstrual period at age 14, she says she experienced terrible pelvic pain, and she couldn't imagine suffering that way every month. "I remember sitting in my room and crying horribly," says the 47-year-old San Jose, Calif., resident. She has continued to have bouts of excruciating pain over the years because of lingering endometriosis and scarring on her ovaries, but she has found relief in the form of surgeries that removed painful adhesions.
Some 12 to 20 percent of women experience chronic pelvic pain, and about 61 percent of the cases go undiagnosed, according to the National Pain Foundation. Many women spend years searching for a cause—and a solution—to their pain. The gold-standard method of evaluating pelvic pain that more conservative methods, such as ultrasound, have failed to pinpoint is laparoscopy (a procedure done by inserting a lighted telescope into the belly), according to a study published in January in Archives of Gynecology and Obstetrics. Collins's chronic pelvic pain was diagnosed as endometriosis in 2004, via laparoscopy. It's a condition in which the endometrium—which normally lines the uterus—grows elsewhere, causing pain. It affects about 90 million women worldwide. Since then, she has gone through multiple surgeries over the years to try to get rid of the pain. Her experience shows that with persistence and the help of a patient doctor, relief from chronic pelvic pain is possible.
Part of the difficulty in dealing with chronic pelvic pain like Collins's is that it's so complex, says Andrew Cook, an endometriosis and pelvic pain expert and founder and medical director of the Vital Health Institute. "There are so many things that can cause pelvic pain," he says, such as endometriosis, interstitial cystitis, irritable bowel syndrome, or a pain processing problem in which nerves are rewired, sending pain signals to the brain. Much like fibromyalgia (a chronic pain condition that affects the whole body), some cases of chronic pelvic pain result when "the whole communication up and down the spinal cord changes and it gets hypersensitive," Cook says.
As chronic pain problems such as fibromyalgia have become more widely recognized and accepted, experts say, so too has chronic pelvic pain. In some cases, women appear to be wired to experience pain in this region, for reasons that doctors haven't yet figured out. "It appears there is a section of the population that is genetically and environmentally predisposed to have changes in their neurological system that cause them to have chronic pain, and that becomes the diagnosis," says Fred Howard, professor and associate chair of obstetrics and gynecology at the University of Rochester Medical Center and chairman of the board for the International Pelvic Pain Society.
Some doctors say that they consider chronic pelvic pain first as a pain processing problem and treat it as such, with pain medication and referrals to pain management clinics or physical therapists, to see if that brings the patient relief before trying more aggressive methods such as surgery. "We think of chronic pelvic pain as a regional pain syndrome," says Anthony Scialli, clinical professor of obstetrics and gynecology at the George Washington University School of Medicine, who has researched chronic pelvic pain. "People with pain processing problems have abnormalities of sleep and mood and have other pain," such as chronic headache, neck pain, or joint pain, he says. "The fact that it's not isolated suggests that it's a more global pain processing problem."
No matter the cause, chronic pelvic pain can be life-altering. About 25 percent of those with this type of pain are confined to bed for nearly three days per month, and about 60 percent limit their daily activities one or more days per month owing to the pain. Collins says she hasn't held a full-time job since 1999 because of her pain.
Of course, pelvic pain can be caused by primary dysmenorrhea, typically known as menstrual cramps. The key is to know when your pelvic pain has gone beyond minor discomfort and into a category where a doctor's intervention is necessary. The simplest rule is "if it's starting to impair your life, then it needs to be addressed," Howard says. "If you have menstrual pain for a day or two each month and you can control it with ibuprofen (Advil) or naproxen (Aleve)," it is probably OK to keep handling it on your own. "But if it's three to four days each month and you're out of commission," then you should be looking for some help, he says.
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."
[Read what our Health Advice expert Dr. Bryan Arling has to say about fibromyalgia medications.]