Studies tell a grim tale: healthcare professionals provide worse care to women and people with vaginas simply because of their gender or their bodies. Of course, this isn’t always the case, but it is important to acknowledge just how pervasive this problem is. For instance, in cis-men and -women with similar symptoms, providers are more likely to believe a woman’s pain is psychological in origin—they’re also more like to further investigate and treat men’s symptoms (1). And sometimes this has life or death consequences; women with chest pain (which could be anything from heartburn to a heart attack) are less likely than men to receive diagnostic procedures or interventions that open clogged arteries—and women often report that physicians downplay their symptoms (2-4). Big yikes. 

When it comes to chronic pelvic pain and painful sex (dyspareunia), the story doesn’t change much. 

People with vaginas are convinced by both healthcare practitioners and people in their social circles that their chronic pelvic pain is normal, while people with penises reportedly do not struggle with healthcare providers not acknowledging their symptoms as out-of-the-ordinary (5). 

Participants in a recent qualitative study among cis-women experiencing sexual pain often reported their providers chalked their pain up to psychopathology, especially if they were emotional during their appointment (6). While mental health is an important pillar of sexual health, it’s not the only thing providers should be considering when they see a patient with sexual pain. 

So in March of 2021, we launched an informal study. We know healthcare practitioners are dismissing their patients’ pelvic pain and dysfunction symptoms—but how?

The I’m Not Ovary-Acting Study

We asked the Ohnut community to describe a time when they were dismissed, ignored, or belittled by a healthcare professional. We received 62 responses, and whittled that down to 51 people with vaginas who went to see a provider about pelvic pain or dysfunction. 

37.3% went to a healthcare provider to discuss pelvic pain, 35.3% for painful sex, 15.7% for painful or heavy periods, 13.7% for issues with their current birth control, 3.9% for infertility, 3.9% for infections, and 3.9% for unknown (several participants saw a healthcare professional for multiple complaints, therefore these numbers add up to over 100%).

Among these folks, we found that 78.4% reported instances in which their healthcare provider dismissed, ignored, or did not believe their symptoms or experiences. 

“The first time I was at an OB/GYN for pelvic pain, I was 23. I was not able to stand a pelvic exam, have sex, or use tampons. I was scared and frustrated. A good friend had recommended this OB/GYn to me and I decided to see if they could help me in any way, whether it was giving me a prescription for pelvic floor PT or maybe trying medication. I told this OB/GYN what the problem was, and she looked at me like I had two heads. Then, I'll never forget it, she told me if I got drunk then I would not have a problem. Alcohol is never the solution to pain.”

23.5% reported being misdiagnosed by their physician or reported their physician did not have the knowledge or training to adequately discuss a diagnosis or treatment plan. 

“When I was in my early 20's and newly sexually active I found sex to constantly be painful, uncomfortable, and generally not pleasurable. My gynecologist checked my vagina and said it looked "normal" and checked my hormone levels and said my testosterone was a little low but still in the "normal" range. The best she could offer was a testosterone cream to help boost my libido which I stopped taking after a few months of no effect.  Well, a whole bunch of sex toys and lubes and sex education and years later, it turns out I'm Asexual! I hope more doctors learn about Asexuality to factor in when a patient is struggling to find pleasure in sex.”

11.8% reported their physician chastised or judged them.

“I was complaining about unbearable period pains and it was always passed off as a female who experiences pain with her periods... finally my female doctor gave me a Pap test. She asked me how many sexual partners I have had in which I responded ‘3.’ Her response ‘wow hope you're planning on stopping soon.’”

9.8% reported their physician demonstrated overt racism, sexism, or fatphobia. 

“The new [doctor] absolutely refused to listen to my wishes of getting rid of my uterus, and completely dismissed my wishes to remain childfree. The most hurtful comment was: "I can't do a hysterectomy on a woman like you. Women in your culture are ostracized if they are infertile, and I can't allow you to lose your fertility". My parents are USA citizens, I grew up in USA, my culture is as American as hers, but because I have an accent and brown skin, somehow she assumed my "culture", and made me undeserving of a needed medical procedure and to be valued only as a walking functional uterus like a broodmare. I was in my late 30s at the time. I am old enough to know my body, I have medical reasons for it, [my] other doctor agrees that it is an acceptable treatment option, and I have a career in the medical field, so I understand very well the permanence of a hysterectomy. Instead, I was treated like an unwilling incubator.”

3.9% reported their physician did not do their due diligence, causing them harm. 

"The doctor saved my life with my transplant, but I was left with an unexpected and possibly preventable condition that now requires daily use of dilators and topical hormones."

Was that a bummer fest? Absolutely. On the bright side… a lot of these folks shared that they did eventually get the care they needed from a provider who truly listened and had the skillset needed. 

“I was able to express my concerns openly and tell her my thoughts -my guess was endo- and finally felt the benefits of advocating for myself. I requested a diagnostic surgery and she said yes - and I burst into tears at finally being heard.”

This is a hopeful start, but we believe folks shouldn't burst into tears because they're grateful they were finally heard and got the care they needed. As healthcare providers, it’s their duty to listen to and care for their patients—not shut them down. Fortunately we're seeing a lot of improvements as the years go on, but there's still work to do.

For now, know that you have the power to advocate for yourself and your health (here’s a helpful tool for communicating pelvic pain to a provider). Insurance and life circumstances can make it beyond difficult to seek additional care, but you do have the right to ask for a referral or see a different provider. 

Read Pt.II: Pelvic Health in the Doctor's Office

References:

1. Hamberg, K. 2008. Gender bias in medicine. Women’s Health 4 (3):237–43.
2. Hansen, K. W., R. Soerensen, M. Madsen, Hansen, J. K. Madsen, J. S., Jensen, L. M. von Kappelgaard, P. E. Mortensen, and S. Galatius. 2015. Developments in the invasive diagnostic–therapeutic cascade of women and men with acute coronary syndromes from 2005 to 2011: A nationwide cohort study. BMJ Open 5 (6):243–58. doi:10.1136/bmjopen2015-007785.
3. Tavris, D., A. Shoaibi, A. Y. Chen, T. Uchida, M. T. Roe, and J. Chen. 2010. Gender differences in the treatment of non-st-segment elevation myocardial infarction. Clinical Cardiology 33 (2):99–103. doi:10.1002/clc.20691.
4. McSweeney, J. C., A. G. Rosenfeld, W. M. Abel, L. T. Braun, L. E. Burke, S. L. Daugherty, G. F. Fletcher, M. Gulati, L. S. Mehta, C. Pettey, and J. F. Reckelhoff. 2016. Preventing and experiencing ischemic heart disease as a woman: State of the science: A scientific statement from the American heart association. Circulation 133 (13):1302–31. doi:10.1161/ CIR.0000000000000381.
5. Toye, F., K. Seers, and K. Barker. 2014. A meta-ethnography of patients’ experiences of chronic pelvic pain: Struggling to construct chronic pelvic pain as ‘real’. Journal of Advanced Nursing 70 (12):2713–27. doi:10.1111/jan.2014.70.issue-12.
6. Braksmajer, A. 2018. Struggles for medical legitimacy among women experiencing sexual pain: A qualitative study. Women & Health 58 (4):419-33. doi: 10.1080/03630242.2017.1306606