For two years, at particular times of the month, whenever Denise*, a 33-year-old Toronto animator, had an orgasm, she'd experience painful spasms in her lower abdomen. The pain would start out intense and gradually dull, lasting as long as 20 minutes. Though initially embarrassed to discuss the issue with friends, one evening she mentioned the pain to a girlfriend, who replied, "Huh. That doesn't happen to me." Denise thought, Right, this isn't universal. I should probably check this out.
The trip to her GP was unpleasant; the doctor Googled Denise's symptoms for a while before proclaiming she was stumped. Denise's experience at the gynecologist was hardly any more reassuring. She was given a diagnosis: a condition called pudendal neuralgia, and more or less hurried out the door. "I wanted more time, and support, to process the diagnosis, but she wanted to get me in and out quickly," Denise told me.
Pudendal neuralgia is characterized by pain in one or more areas innervated by the pudendal nerve, which runs between a person's pubic bone and tailbone. The disorder is likely not as arcane as it might sound. It belongs to an umbrella condition known as chronic pelvic pain (CPP), usually defined as pain anywhere in the pelvic region lasting six months or longer.
CPP encapsulates a host of issues; including pain with intercourse, bladder pain, endometriosis, hip and lower back pain, constipation, rectal pain and incontinence. Health professionals who specialize in the area generally consider CPP to be understudied, underfunded and widely misunderstood. This is partly because CPP is complex, its causes often inexplicable; partly because sufferers tend to find the attendant problems embarrassing to raise with doctors and partly, some maintain, because the condition affects women more than men.
A 2014 review of prevalence studies of CPP among women published in the journal Pain Physician, found that the condition affects women of all ages worldwide, but health care professionals and researchers "frequently neglect" it. The review concluded that there's a "paucity of [CPP] studies," and that prevalence in general ranged from 5.7 percent to 26.6 percent.
"Women's health in general is under-researched," says Chana Ross, a Toronto pelvic physiotherapist. She notes that the most common issues she treats are incontinence, constipation, pain during intercourse and lower back, hip and tailbone pain. More than half of her clients are pregnant or postpartum.
Ross bemoans that treatment for these issues isn't publicly funded. "We're disempowering women. They're walking around in pain…At each life-cycle stage, women are told pain is normal… like, 'What do you expect? You had a baby. Of course sex is painful…' But there are so many things you can do."
She breaks down why dysfunction in the pelvis is so damaging, physically, and psychically. The pelvic floor muscles—these span the bottom of the pelvis and support the bladder, bowel and uterus—are responsible for bladder and sphincter control, supporting one's internal organs from below, assisting with sexual function, facilitating blood flow from the legs to the trunk and providing stability to the spine. If the muscles are too tight or too weak, pain and dysfunction can result.
As with most medical issues, stress is most definitely a factor. While some people carry tension in their back, or jaw, many hold it in their pelvis. "If your fight or flight system is working on overdrive, a very common coping mechanism is to clench your pelvic floor," says Ross.
Treatment involves strengthening and relaxation techniques, but it also takes into account one's personal history. "This isn't like an overused bicep, where you just do stretches. If the [pelvic] muscles are overused, you ask: 'What have you been told about sexuality? What's your family like, your religion? What shame have you taken in?"
A lot of the women she sees have experienced sexual trauma, and she often refers clients to therapists.
Laura Katz is a clinical psychologist in supervised practice who researches how women cope with CPP. She says reigning theories view pain in general as a "biopsychosocial (that's biological, psychological and social) construct." For example, the sense that pain is never-ending could trigger depression, which could, in turn, exacerbate pain.
"What's frustrating is that we know interdisciplinary and biopsychosocial treatment gives the best outcomes. But to date, [these types of] pain programs are grossly under-funded," Katz says. She has been hired to develop a CPP program at the Michael G. DeGroote Pain Clinic at McMaster University. It will offer eight weeks of pelvic physiotherapy, plus mindfulness, fitness and psycho-education classes. An influx of provincial funding means the program will be OHIP-funded, an anomaly.
Carolyn Vandyken is a pelvic physiotherapist and co-owner of Pelvic Health Solutions, a company that trains pelvic floor physiotherapists and clinicians ranging from GPs to midwives to assess and treat the pelvic floor muscles. She partly attributes pelvic neglect to North American "cultural unwillingness" to discuss problems like incontinence and sexual dysfunction save for "in hushed terms." In Europe, she notes, there's far less squeamishness. Indeed, in places like France, new mothers are entitled to 10 to 20 government-subsidized sessions of pelvic rehabilitation.
Vandyken believes women especially should be taught to stretch and relax their pelvic floors from a young age, to prepare for events like menstruation, intercourse and childbirth. "Young women with painful periods often have pelvic pain later on. We shouldn't just send them away with Advil," she says. "And we need to take better care of our post-partum women. There's trauma to the pelvic floor after delivering. A lot of dysfunction starts there."
For months now, Denise has been working with a pelvic physiotherapist to address her pain. The experience has been life-altering. "She's probably the best healthcare practitioner I've ever met. She's never dismissed me or made me feel weird. Everytime I go to her, I learn not just about my pelvis, but about my whole body."
*Name has been changed