For as long as she can remember, Claudia King has experienced pain with urination as well as pain during and after sex. She thought it was normal. She was diagnosed with severe endometriosis at 17, but later, when a urinary tract infection wouldn’t clear up, a doctor wrote her off as having a sexually transmitted disease.
“There were no other questions, no attempt to discuss symptoms and figure it out. I just ‘must’ have an STD,” she shares. “This was humiliating. It was just over a month from my wedding, and this doctor (in my mind) is calling me a slut.” After a barrage of embarrassing and invasive tests revealed she did not have an STD, King was sent to her gynecologist for further testing.
Her gynecologist correctly diagnosed King with interstitial cystitis (IC), a painful bladder disorder. But since her gynecologist didn’t feel familiar enough with IC, he offered her only a few days’ worth of pain medicine and said he was not comfortable prescribing more.
Like many individuals living with chronic pain, King has been labeled a drug seeker or denied medication strong enough to treat her pain. Nurses have made comments or challenged her to ask for morphine only if “really needed.” King brings her husband with her to appointments as an advocate and to provide additional support. “Of course, as I say this, I realize that this was actually getting a man to advocate for me because I felt like my own word wasn’t good enough,” she says.
Women disproportionately experience chronic pain—but remain underrepresented in research
Monica Mallampalli, PhD, MSc, is an expert in women’s health and the senior scientific advisor for HealthyWomen (healthywomen.org), an organization that provides health-related resources and programming to women so that they can make informed decisions for themselves.
Studies have found that 70% of people living with chronic pain are women. Yet 80% of pain studies are conducted on men or male mice, according to a report from Harvard Health Publishing. In fact, until 30 years ago, it was not common to include women in clinical studies at all.
“We don’t know how a certain medication will work for women,” Mallampalli says. “We don’t even know the extent of the biological mechanisms that are different between men and women; they still need to be researched.”
Mallampalli notes that women need equity in pain research and treatment. “If you don’t have equity, you will never have equality, because if your health is bad and you are not getting the treatment you need, you will never achieve true equality,” she says.
“Migraine is such a great example,” she adds. Women are twice as likely as men to have migraine. “These women are debilitated to the point they can’t even work, and most of the treatments out there don’t work well for migraine patients, particularly women.”
There is a lack of scientific information surrounding migraine and many women’s health conditions, including endometriosis, polycystic ovary syndrome, and uterine fibroids, because “certain conditions were not funded,” explains Mallampalli.
“Policy change takes time,” she says. “That’s why self-advocacy is so important. If you’re diagnosed with something, it is important to inform and educate yourself on your condition. Ask your clinician if the treatments are available, if they would work for you. The FDA has made some information available now about whether a drug is being approved or has just been approved. You can go find who was in that trial—were there more men than women? Were there any side effects that they found?”
She also acknowledges the importance of traditional advocacy. “Research funding happens because of advocacy. It is so key for people to speak up,” she says. “How do they get funding dollars? Because advocates are so passionate, they go to Capitol Hill, they bring attention to an issue, get Congress to hear them. And then, Congress can require the federal agencies to respond.”
For women who don’t feel heard
Mallampalli notes that the reality for many women is not being listened to or believed, even when they’re knowledgeable about their condition or pain.
“What I have heard mostly [from women] is not being heard, not being believed, being told it’s all in your head,” Mallampalli says. The women she speaks with “feel very frustrated. [They] like to explain and communicate what they’re feeling. Clinical visits are very short. The clinicians do not have time to listen, but I think communication with physicians is crucial. Communication is so important to get a full picture.”
King advises women to bring a list of questions to appointments so they can make sure their concerns are addressed. “Have your list ahead of time, and don’t feel bad about asking legitimate questions about treatment, symptoms, medication,” she shares. “And, like me, if your advocate is a man, that’s OK. There is no benefit to being a martyr: If you have to get a man to advocate for you because that’s what you need, then do that. Ignoring disparities doesn’t make them go away.”