In 1998, Susan Presberg-Greene, an ophthalmologist who practiced in New York state, decided to go ice skating. While at the rink, another skater smashed into her from behind, and Presberg-Greene fell. Her tailbone collided with the ice -- a minor accident that led to major, unexpected consequences.
Five weeks later, Presberg-Greene, now 59, experienced a "terrible, hot fiery pain in the urethra." It felt as if she had an acute bladder infection -- except the sensation never went away. For the next decade, Presberg-Greene struggled with chronic pelvic pain. It hurt to sit down or squat; she could no longer stay stationary at a desk for hours, nor could she play her cello. She had difficultly sleeping through the night. Sex was uncomfortable. Shortly after her accident, her symptoms grew so bad she had to quit her job and go on disability.
Presberg-Greene visited dozens of doctors across the country, and she tried just as many treatments. "I tried medications for my bladder," Presberg-Greene recalls. "I tried a neurostimulator" -- a small, surgically-implanted device that delivers mild electrical signals near the spine. "I tried physical therapy, acupuncture, other holistic therapies, prayer, meditation, counseling -- the list goes on and on." Medical specialists from all different fields -- gynecologists, urologists, physical therapists, mental health professionals -- incorrectly diagnosed Presberg-Greene with conditions ranging from a chronic bladder condition called interstitial cystitis to a psychological disorder. No one could pinpoint what, exactly, was wrong with her.
In 2008, after years of suffering, Presberg-Greene was diagnosed with a little-known condition called pudendal neuralgia. Hitting the ice all those years ago affected her pudendal nerve -- the major nerve that tells the pelvic floor muscles what to do in men and women. Both a sensory and motor nerve, it has several functions, including carrying sensations from the penis or clitoris, the nerve around the anus or the perenium.
Presberg-Greene's accident had caused the nerve to become compressed -- an invisible, overlooked injury that can cause searing, uncontrollable pain across the entire pelvic region.
According to doctors, pudendal neuralgia occurs in both female and male patients, and can stem from multiple causes. However, it's often mistaken for other conditions, or overlooked due to embarrassment or a lack of awareness. And the worst part? Sometimes it comes and goes in patients, but often lasts for years -- or even decades. Receiving an early -- and correct -- diagnosis and treatment, experts say, is key to finding relief.
Symptoms and Causes
A burning, stabbing or throbbing sensation in the crotch. Genital numbness. An inability to sit down because it hurts too much. Pain during intercourse. Bladder and fecal incontinence. The symptoms of pudendal neuralgia -- also called Alcock canal syndrome -- are both manifold and excruciating, experts say.
Although doctors don't know how often pudendal neuralgia occurs in the greater population, they say it affects women and men with almost equal frequency. It's also "much more common than people realize," says Dr. Jerome Weiss, a San Francisco-based urologist and founder of the Pacific Center for Pelvic Pain and Dysfunction. "It's unrecognized in a large portion of patients. I see it frequently; I probably have 1,000 patients [with the condition]. There are people who are suffering because they have no diagnosis made." This, he says, is because many doctors aren't trained on how to diagnose and treat the disorder, or they're so rushed during appointments, they don't have time for a thorough screening. Instead, he says, "they blame it on something else -- the prostate or the bladder. They don't think about the nerve."
There are many underlying causes of pudendal neuralgia. Scarring from pelvic surgery is often a factor. Childbirth can damage the pudendal nerve, as can the seat of a bicycle, which pushes up against the nerve and injures it. (Pudendal neuralgia is so common in bicyclists, it was originally referred to as "cyclists' syndrome" or "bicycle seat neuropathy.") Falls and accidents are common triggers. Constipation that leads to severe straining can injure that nerve. And sometimes physical alignment also plays a part, says Dr. Nel Gerig, a Denver-based urologist who diagnoses and treats pudendal neuralgia. Scoliosis, a bad knee and other physical conditions can create tension in the muscles around the pudendal nerve, which in turn can cause injury. Sometimes pudendal neuralgia can occur soon after the injury takes place. Other times, it can take years to develop, as other traumas exacerbate the original injury.
In women, Gerig says, doctors often mistake the symptoms for endometriosis -- a condition that also causes pelvic pain, bowel problems and inflammation, and occurs when the tissue that lines the uterus is found outside the uterus. They also confuse it for interstitial cystitis, which is characterized by chronic pelvic pain, pressure and discomfort, as well as the urge to urinate. And male patients are often wrongly diagnosed with a prostate infection.
The most reliable sign that someone has pudendal neuralgia, experts say, is if he or she feels pain while sitting. That person will find relief, however, if he or she stands up, lies down or sits on a toilet seat.
Receiving a Diagnosis
The first step to treating pudendal neuralgia, experts say, is to discover the root cause -- which is often trickier than it sounds.
"Patients talk to their doctors, [describe their symptoms] and the doctors don't know what they're talking about," Gerig says. "Typically, their tests look normal. The blood test, the urine test, their MRI. So they're either told they're crazy, or led to believe they're crazy."
Those who do receive the correct diagnosis have often suffered for about four years and have seen 10 professionals without any diagnosis, says Dr. Jacques Beco, a Belgium-based obstetrician and gynecologist who treats patients with pudendal neuralgia. "Neurologists and neurosurgeons never make a gynecological examination or a rectal examination," he says. "And gynecologists, urologists and proctologists treat the organs, but have little knowledge about the nerves and muscles of the area." Because of this, a correct diagnosis of pudendal neuralgia sometimes requires a task force of urologists, gynecologists, neurologists and pain-management physicians.
The key to making a diagnosis, Beco says, is to take a full medical history, assess the patient's symptoms and conduct a thorough external and internal physical examination.
Pudendal neuralgia is painful, but treatable. After identifying physical problems that might've contributed to the nerve damage -- say, abnormal body mechanics -- and possibly treating them with physical therapy, doctors can try treatments such as muscle relaxers and neuromodulator drugs, as well as manual therapy.
"I go in internally with my finger, into the rectum and vagina," Weiss says. "I find the areas of muscle tensions and nerve sensitivity, and I relieve the muscles with manual techniques around the nerve so that it's no longer compressed by the muscles. I do that, and over time with treatment -- maybe every week or so -- the muscles start releasing. The nerve isn't compressed and the patients start getting better."
If manual therapy doesn't do the trick, pudendal nerve blocks -- an injection of a muscle anesthetic with or without a steroid, which resembles an epidural injection -- can help reduce inflammation in the nerve so it heals faster.
If all else fails, surgery may be necessary. Several different types exist, Weiss says, but the overall goal is the same: to identify the area of scarring around the pudendal nerve, remove the nerve from the scar and relocate the nerve. This procedure, he says, protects the nerve and helps it heal.
Living With Pudendal Neuralgia
Pudendal neuralgia isn't just physical -- it can also affect psychological and sexual well-being and interfere with day-to-day activities and hobbies.
Many patients who experience this type of chronic pain suffer from mental health problems, experts say. "I have worked on the pudendal nerve since 1995," Beco says. "Since then, three of my patients have killed themselves because of the pain. It's a very, very bad disease, and many patients are depressed because of it."
Many patients opt out of sex because it hurts too much -- although some doctors say "outercourse," or non-penetrative methods, might be less painful. Men can experience penile or orgasmic pain, or pain during ejaculation, while women who have vulva pain, known as vulvodynia, can't have intercourse because penetration is too painful. And pudendal neuralgia can also trigger another issue called persistent genital arousal disorder, "which gives men and women a constant urge to have sex without any provocation," Weiss says. While that may not sound so bad, he says it is extremely distracting and has even resulted in suicide.
Often, those who suffer from pudendal neuralgia can't sit down for long periods of time -- meaning they'll have to try a standing desk at work, or rethink their stationary hobbies. Bicycling is almost always a no-no.
However, many of these activities can be resumed -- with caution -- after a patient starts to feel better. A special cushion can help patients sit down without pain. Stretches and exercise can reduce pain. And sports like swimming or low-intensity walking are good, low-impact forms of exercise that won't exacerbate symptoms.
Bottom line? "Sometimes, some of the things you read about pudendal neuralgia can sound pretty scary," Gerig says. "The number one thing patients need to know is that it can be treated, and you can get better. It's not always going to require surgery."
When asked to give advice to others in her situation, Presberg-Greene -- who tried injections and medicines before finally opting for surgery -- says she would tell individuals "not give up" if they haven't yet received an official diagnosis.
"Don't assume that because you haven't been able to find a working diagnosis, you don't have one or it can't be found," she says. "And if you've tried a treatment but it hasn't worked, don't be afraid to [circle] back later and try it again."
And finally, she says, don't think it's all in your head. If you feel pain, it's legitimate -- no matter what anyone else might say. "Nobody fakes pelvic pain," she says. "That's not something people come up with."