Perplexed By Pelvic Pain: Seeking an Accurate Diagnosis

Kimberly is 32 years old. She was born in a small town in rural Pennsylvania; her mother was a schoolteacher, and her father worked as a lineman for the phone company. When she turned 21, she inherited enough to pay for college from her grandmother. In the words of a wise man, she inherited “enough to be able to do anything but not enough to do nothing…” In fact, she had to leave medical school after the first year because pain had started interfering with her life.

It began at age 13. After having a normal first period at age 12, which remained uneventful for a few cycles, she started experiencing premenstrual cramps. They became disabling after a few months and prompted her first visit to her pediatrician. She was missing one to two days of school every month on account of her painful periods. The gynecological issue perplexed her pediatrician, who knew a referral to a specialist was in order. With no pediatric gynecologist in her small town, either Kimberly would have to visit a non-pediatric gynecologist, or her parents would have to take her 275 miles to Philadelphia, which was not an option.

The local gynecologist, a compassionate septuagenarian, also treated her mother and remembered treating her grandmother. A number of tests and ultrasounds later, Kimberly was diagnosed with polycystic ovarian syndrome (PCOS). She started treatment, but it did not provide much relief. By the time she was 18 and ready to head off to college, she had tried most available treatments, as well as numerous ultrasounds and a number of laparoscopies. All efforts were futile.

She had become sexually active but never had much of a libido. Boyfriends were not very understanding of her frequent mood shifts, and she had difficulty maintaining steady relationships. By the time she was 21, she gave up on expressing her sexuality and dressed as simply as she could. She gave up on even trying and decided to go to medical school. Throughout most of her adult life, she had interacted with many doctors and figured she could withstand the training and lifestyle. It did not work.

Academically she had what it took, but the stress of school, poor sleeping patterns, and chronic pelvic pain simply drained her of the stamina to pursue a medical career. She had to admit defeat, something she never dealt with before. She started seeing a counselor and a psychiatrist.

Kimberly’s pain had taken a toll on her life and now demanded at least four days out of every month — four days at home, locked in her room, cramping, hating her ovaries.

She visited a new gynecologist, a young female doctor who suggested she see a pain specialist. Kimberly initially frowned upon the idea, not wanting to become dependent on drugs. A urology specialist found nothing wrong with her kidneys, ureters or bladder and referred Kimberly to a gastroenterologist. After a range of tests and having a scope explore every gastrointestinal orifice, she received the same disheartening news: “I do not know what is causing the pain, but there is nothing wrong with your stomach, gut, or colon. Not my area of expertise.”

Out of desperation, she visited a chiropractor who advertised chiropractic treatments for chronic pelvic pain. After 16 visits, she did not feel any better and knew this was another dead end.

Kimberly realized that the American health-care system is not user-friendly. Imagine taking your car to a mechanic for a new engine bay rattle. The mechanic tells you, “I do not work on that brand of car. It could be the muffler.” You go to the muffler guy next door, who charges you a fee just to look at the car but is not able to help. He tells you, “There’s nothing wrong with your muffler. It could be the transmission. That will be $100.” Then the transmission guy can find nothing wrong, so he tells you to see another specialist. And it goes on and on. Six months later, you learn to live with the engine rattle.

Our health-care system promotes specialization; the more specialized the physician, the more he or she can charge for a given level of service. An organ as small as the eye can have four or five subspecialists who each treat only one part of the eyeball. And each one charges more for a smaller segment of the organ.

A patient who accesses the health-care system at the wrong level can easily travel a journey of dozens of unnecessary tests, costly procedures, and ultimately poor satisfaction with the care. Whose fault is this?

Kimberly receives a diagnosis

Kimberly knew she had to reorient. She went back to her primary-care doctor but requested a new-patient appointment, insisting on quality face-to-face time and not leaving the office without two things: a diagnosis (even a working diagnosis) and a plan for care. She read on her insurance company’s website that it is her right to ask for these. After this appointment, she was referred to a pain management specialist.

Her first visit with the pain specialist showed how completely different the approach to diagnosing and managing the problem would be this time. It all went back to the basics: a thorough medical history and detailed physical examination. A sober look at the medical documentation of the tests followed. The conclusion? She never really had PCOS. It was a basket diagnosis assigned to her after everything else was ruled out. It is similar to going to the supermarket and seeing a strange fruit: it is not an apple or a pear, certainly not an orange; therefore, it must be a lemon. Even in this day and age, sometimes the process of elimination is the only way for doctors to diagnose conditions.

Irritable bowel syndrome turned to be a more plausible diagnosis for Kimberly — one missed by the gastroenterologist she’d visited years before. She worked with her pain specialist on a dietary modification regimen that included avoidance of trigger foods and taking up healthy lifestyle habits such as exercise, nutritious eating, and weight control. A diagnosis of pelvic floor dysfunction soon followed. Treatment was initiated by the pain management doctor that she once refused to see. After a number of diagnostic tests, she was prescribed a muscle relaxant, baclofen. It really made a difference. A pelvic floor rehabilitation specialist guided her through pelvic floor strengthening exercises. She also underwent a hypogastric plexus block, which yielded immediate and amazing results. Her pain was gone. For an entire week, she had no pain. Her hope for an answer to her maladies was finally a reality. Her pain returned after about a week but it was not nearly as bad — and she had gained something priceless: she now knew for a fact that her pain could be controlled.

Kimberly’s sleep patterns became more regular, and she was able to hold a steady job. Surprisingly, her libido was aroused, and she started dating a co-worker. Intimacy followed and was not nearly as painful as she remembered. With the help of a sex therapist, she was able to maintain a mutually exclusive satisfying monogamous relationship with Joe.

Kimberly exemplifies one of the most difficult medical conditions to treat — chronic pelvic pain. Often, patients get lost in the complex architecture of the health-care system, and the condition remains undertreated or not treated at all.

Access to the health-care system should start at the level of a well-trained family physician or primary-care provider (PCP). The idea is that he or she will identify the magnitude of the problem and consult with their subspecialized peers about a patient’s care. The connection with the PCP should never be lost, and the care should not be surrendered to the specialist but only subrogated to a specific problem. The health-care system can seem broad and convoluted, and it is easy to get lost without the guiding light of the PCP.

I like the analogy of building a house. When you are building a house, there are plumbers, electricians, and bricklayers, but there is one general contractor overseeing everything to make sure you end up with the house you wanted. Think of your family physician as that person, overseeing your health care.

Want to learn more about self-advocacy and the health-care system? Read “Patient Advocates for Hire” and “Your Move: Educate Yourself.”

Abraham Rivera, MD, is the medical director for Physician Partners of America and oversees 26 physicians in all facets of pain management. He is also the chief medical officer for the Florida Pain Relief Group, in the Tampa Bay area. He previously served as the director of pain management at the Florida Medical Clinic, a 200-physician multi-specialty group. Rivera specializes in spinal cord stimulation, intrathecal therapy, and other advanced pain-management interventions.

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