Since 2017, May has been the official month for Pelvic Pain Awareness Month.
Chronic pain is considered non-menstrual pain that lasts “up to six months or more” and is located in the pelvic. Endometriosis, fibroids, pelvic floor muscle spasms, adhesions, and other disorders can lead to painful pelvic issues. This is also why pelvic pain can be difficult to diagnose, as there can be various complications to blame for the persistent cramping and throbbing. This is called a “multi-system disorder,” which includes sexual, bowel, urinary, gynecological, and musculoskeletal symptoms.
Not only does chronic pelvic pain feel isolating and confusing, but it’s also debilitating—both physically and emotionally—as it interferes with relationships, work, sleep, and simply existing pain-free.
Moreover, chronic pelvic pain can contribute to depression, anxiety, difficulty paying attention, relationship issues, and difficulty sleeping.
Roughly 881.5 million dollars is spent to cover healthcare costs for chronic pelvic pain the United States. A study found that only 15 percent of “individuals with chronic pelvic pain consult primary care providers,” and only 40 percent “of this group are referred to specialists” for further consulting. Because of this, patients are often juggled between various specialists without receiving consistent treatment.
A Gallop poll found that one in seven women between 18 to 50 suffer from chronic pelvic pain which is twice as high as the amount of men. By keeping track of your pelvic pain, how it feels, how often does the pain change, and how it’s affecting your livelihood are beneficial ways to begin working on recovery and treatment.
How can chronic pelvic pain change your identity?
Research has found that momentary pain does little to one’s sense of the self. However, chronic pain, lasting for several days will cause an interference with “behavioral tasks.” Once these tasks are continuously interrupted—much longer than a few days—grave damage can be done to “one’s sense of self or identity.”
And as we noted above, chronic pain is frequently tied to depression which can cause fatigue and changes in mood, sleep, and appetite. This completely alters a person and who they were before their persistent pain.
Michael Clark, a psychiatrist and director of the pain treatment program at Johns Hopkins Hospital told the Washington Post that “Approximately one-third to three-quarters of people with chronic pain experience moderate to severe depression.” He explains that, “Patients with depression experience increased pain because of overlap in the two affected systems: pain reception and mood regulation. Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.”
For almost a decade, attorney, public speaker and health advocate, Erin Jackson has been battling pelvic pain. “The way I viewed myself and the way others saw me was colored by the pain,” explains Jackson. “Even now, I feel like my life is split into two segments: in pain and after pain.” After her experience, she began to be an advocate for pelvic pain, began speaking with healthcare providers, and began her nonprofit Inspire Santé two years ago. Inspire Santé hopes to be a space for people to turn to in order to navigate a brighter future while also pushing for a systemic change.
For Jackson, her pelvic pain was isolating. Jackson says about her identity: “I’m a different person than I was during those years of hurting, and my after-pain self is continuously learning to treat myself with more empathy and kindness.” After having biopsies, pelvic exams, and tests leaving her with no answers from doctors, she was told that she needed psychiatric care. She explains that she felt lonely and guilty. These emotions penetrate all areas of someone’s life and livelihood.
Jackson explains that because chronic pain never goes away it’s “a part of each of your experiences, relationships, accomplishments, and challenges,” which in turn affects your identity. “I got married while in pain, graduated law school in pain, tried my first case in pain, had sex in pain, tried to fall asleep in pain, washed the dishes in pain,” she explains. It’s constant presence forces you to accommodate it since there is no alternative.
Since recovering from her pelvic pain she says that her professional and personal priorities have been impacted “because experiencing that much pain for so long indelibly impacted me and has made me desperately hungry for happiness and health.”
How can the healthcare system improve?
Time and time again, women’s pain in the medical field is ignored. Jackson hopes to see doctors asking patients specific symptoms and spending more time listening, something that doesn’t happen very often during an appointment.
“Pain is a serious, frightening experience for many women, and discussing it while your feet are in stirrups makes it even scarier, eliminates the opportunity for the provider to make eye contact with the patient and use empathetic body language to reassure her, and makes it less likely that the patient will fully vocalize the extent of her symptoms,” explains Jackson. The vulnerable, and often traumatic, position in the stirrups is an antiquated experience that should be considered by professionals who should also be trained in interpersonal relationships with their patients.
Other women are embarrassed of their pelvic pain due to shame or guilt. Jackson says that since starting Inspire Santé, she’s learned so much from women’s experiences. She says that many women find discomfort during sex completely normal and that being in pain is simply what it means to be a woman.
“Pain is not a normal symptom of girlhood or womanhood, and if you’re experiencing it, there’s help available,” she say. “”All of my tips for improving women’s healthcare essentially come back to one main point: we need to listen to, empathize with, and believe women a lot more.”