Any woman who makes the rounds of doctors without getting relief or even a diagnosis for chronic pelvic pain might begin to question if their pain is real. Experts know that it's real, and they're coming to a new understanding of this baffling syndrome that affects 15% of American women aged 18 to 50, the majority of whom go undiagnosed.
Chronic pelvic pain includes a cluster of conditions, some of which seem improbable because they don't involve the pelvic region. Endometriosis and interstitial cystitis (IC) are among the most common conditions that place women at risk for chronic pelvic pain. Related conditions include vulvodynia, pelvic inflammatory disease, irritable bowel syndrome, scarring after abdominal surgery, fibromyalgia and chronic fatigue syndrome. Many studies have even suggested that women who have suffered physical or sexual abuse are also at risk for chronic pelvic pain. Women with chronic pelvic pain may also have a normal physical exam.
Many women who have these conditions are treated successfully and do not go on to experience chronic pelvic pain. According to the International Pelvic Pain Society, pelvic pain is considered chronic when:
- It has been present for at least six months.
- Conventional treatments yield little relief.
- The degree of pain perceived seems out of proportion to the degree of tissue damage detected by conventional means.
- Physical appearance of depression is present, such as sleep problems, poor appetite, constipation, and slowed body movements.
- Physical activity is extremely limited.
- Emotional roles in the family are altered, and the patient is displaced from their accustomed role, such as wife, mother, or employee. WebMD talked to experts in chronic pelvic pain and pain management about the latest developments in understanding and treating chronic pelvic pain.
New Understanding of Chronic Pelvic Pain
What women already know is now validated by medical experts. A woman can experience severe pain even after physical exams and tests show that their risk factor for chronic pelvic pain, such as endometriosis, has lessened or disappeared. Moreover, that pain can become more severe over time.
"We know that people who have little pathology can hurt a lot," says C. Paul Perry, MD, founder and board chairman of the International Pelvic Pain Society in Birmingham, Ala. "Issues in the last four or five years have helped us understand there are neurophysiolgical processes that aren't discussed in the ob-gyn literature."
He says chronic pain causes what's called CNS upregulation, or an increasing sensitivity of cells that transmit pain sensation.
Perry explains that the spinal cord not only transmits pain signals up to the brain but also back down to other organs. "That's how the bladder can get involved, and there's such a huge association between endometriosis and IC -- the evil twins."
He tells WebMD that if chronic pelvic pain isn't stopped, it will lead to multiple disorders and ultimately become a total end-stage disease. "We want to educate health care providers so patients get proper treatment and avoid going into chronic pelvic pain syndrome."
Another expert, Deborah A. Metzger, MD, PhD, has a different take. She believes inflammation causes chronic pelvic pain. "Treat the inflammation, and a lot of the pain goes away," she says.
She's found that sugar and allergies are involved in chronic pelvic pain. "I always test for allergies," she says. "For example, vulvar pain for most women is related to food allergies. Another component is allergies to skin fungi, such as candida."
Metzger, medical director of Harmony Women's Health in Los Altos, Calif., takes an integrative approach to CPP. She tells WebMD it's time for health care professionals to expand their view of women's health. "It's more than periods, menopause, and having babies," she says. "The true picture of women's health involves all the problems that are predominantly female, including IBS, chronic fatigue syndrome, fibromyalgia, depression, allergies and asthma, autoimmune disease, and thyroid disorders."
The field of pain management adds another piece to the chronic pelvic pain puzzle. Roy E. Grzesiak, PhD, is a consulting psychologist with the New Jersey Pain Institute at the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School in New Brunswick, N.J.
"We need to differentiate between people who have persistent pain based on a biological illness or dysfunction and go on living and loving and parenting, and those people whose total being gets enmeshed with pain, treatment, the drugs, getting disability, etc. Many in this latter group have a history of trauma, such as rape, sexual abuse, or physical abuse."
He says the neurobiological effects of trauma are complex and don't always make sense from a biological scientist's point of view. Grzesiak is the author of A Psychological Vulnerability to Chronic Pain.
"The terror and violation of the body do not go into one's memory system as 'I have been raped,' or 'I have been violated,'" Grzesiak says. "It goes into the non-linguistic side of brain as the experience of terror and as the feeling of being violated, not as the memory of the event."
In addition, he says trauma speeds up the nervous system so that any painful sensation is perceived to be severe. "These patients can't graduate pain, like it's a two or three or four. The pain is either off or on, and when it's on it's severe."
Another effect of trauma that's being explored has to do with issues of a patient's trust. "They may have difficulty trusting health care providers," says Grzesiak, who is also clinical associate professor of psychiatry at UMDMJ-New Jersey Medical School in Newark. "Invasive surgeries and a lot of medical procedures violate people. The physician is doing something that's made them anxious all their lives."
Chronic Pain Treatment
Perry, medical director of the C. Paul Perry Pelvic Pain Center in Birmingham, Ala., says certain antiepileptic drugs -- especially Neurontin but also Pregabalin, Depakote, and others -- are effective in treating chronic pelvic pain.
"Eighty to 90% of CPP patients have depression," Perry says.
"The medications we've had the best results with for depression and neuropathic pain are Cymbalta and Effexor," he says. "There are other SSRIs that are good for depression, and you'd think they would help, but those two drugs are the only ones substantiated in the literature."
Metzger sometimes combines Elavil or Neurontin with medications such as Allegra and Singulair. In addition, she advises patients who have severe vulvar pain to spray Nasalcrom, an over-the-counter nasal spray, directly on the vulva.
Perry adds that for most patients, opioid drugs should be avoided. "That's not an absolute, because some patients can't function without them. But the danger of opiods is you can end up with two problems: chronic pelvic pain and dependency."
Perry says it's now understood that women should try to avoid multiple surgeries as it can set up a cycle of pain, surgery, more pain, more surgery, etc. "We try to teach minimally invasive surgery because it helps prevent upregulation to the spinal cord," he says.
He adds that women should avoid emergency room visits unless absolutely necessary. "A patient can get into a vicious cycle of pain crisis, ER, getting a shot, going back in the next month. We never tell them to stay out of the ER if there's a problem, but if it's the same-old, same-old, it can interfere with their treatment plan. ER doctors focus on the pain crisis. They may not understand why someone is hurting with so little pathology and tend to dismiss them as drug seekers, when usually they're relief seekers."
Chronic pain can take over a woman's life, but experts now advise staying active, working, and engaging in physical activity. "Low-impact aerobics might be good," says Grzesiak. Some studies have suggested that physical therapy and exercise may be effective for chronic pain relief.
"We discourage patients from getting on disability," says Perry. "That's a downward spiral. We encourage functionality and distractions. Young women should stay in school. Others should keep working, at least some."
Metzger has found that many patients test positive for allergies to foods, such as wheat, soy, corn, rice, and baker's yeast. "When we get them off the food they're allergic to, their pain goes away." She adds that vulvar pain may be related to allergies to skin fungi. "When we desensitize patients with daily, sublingual [under the tongue] drops, the pain goes away."
She's also seen results in patients who go on the Sugar Busters diet. "Money isn't the root of all evil," she says. "Sugar is."
Dealing With 'Collateral Damage'
Cognitive-behavioral therapy, including stress management and relaxation techniques, has been used for some time to help patients cope with chronic pain. A new therapy, called Eye Movement Desensitization and Reprocessing (EMDR), helps patients process trauma.
The treatment involves having the patient follow a moving object with their eyes while talking about a traumatic event. "The best treatment is to get the brain to light up both sides. You need to activate the side of brain that has stored this terror. That's a new perspective."
Metzger says while some women with chronic pelvic pain get better and bounce back, others resist getting well. Their lives and family relationships are defined by chronic pain. She calls these dysfunctional relationships the "collateral damage" of chronic pelvic pain.
"It's hard when husbands have become so solicitous and helpful, Metzger says. "The relationship is more important than pain relief."
She empathizes with her CPP patients and advises them to email her when they need support and to find someone to talk to. "They've been through hell, and they can't get away from it, like getting away from an abusive husband. They need support."