Pelvic Pain Resources

The Pelvic Pain Association at Cornell is a student-run support and advocacy group. We want you to know that chronic pelvic pain is extremely common!! Here are some links that we've found to be helpful. (Note: some of the links refer exclusively to women, but people of all gender identities can have pelvic pain, and we welcome people of all identities in our group!)

Our on-campus health provider, and a good first stop for treatment of pelvic pain, is Cornell Health. They have several reproductive health experts, but no gynecologists; we are leading an effort to ask Cornell to fund an MD gynecologist who can treat pelvic pain.

The University of Rochester is (unfortunately) one of the closest university hospital systems with many resources devoted to studying and treating pelvic pain. Their website has a useful definition of pelvic pain and a list of many of its potential causes: University of Rochester Health Encyclopedia: Pelvic Pain

We'd also like to share several links with information from condition-specific nonprofits and patient advocacy groups.

Endometriosis

(affects ~10% of cis women; can cause intense menstrual pain, pain with sex, and/or other chronic pain; can also cause infertility and irregular periods)

EndoFound: What is Endometriosis?

EndoFound: Endometriosis Symptoms

Vulvodynia

(affects ~16% of cis women; can cause intense pain with sex, sitting, wearing tight clothing, tampon insertion and/or gynecological exams)

National Vulvodynia Association: What is Vulvodynia?

Tight Lipped info@tightlipped.org

PCOS

(affects ~13% of cis women; can cause pelvic pain from ovarian cysts; can also cause infertility, irregular periods, and excess androgen levels)

PCOS Awareness Association: What is Polycystic Ovarian Syndrome?

Pelvic pain has other causes too! IBS, fibroids, cysts... here's a site that has a thorough, but not exhaustive, list (scroll to the end of the page): University Hospitals: Chronic Pelvic Pain Syndrome in Women

Does your pelvic pain require special dietary requirements? Look up ingredients and nutritional info at Cornell Dining.

Getting help from a supportive community

One of the absolute best things to do is talk to other students who have pelvic pain. It's really powerful to realize that you're not alone, and hear about others' experiences with healthcare and healing. If you'd like to grab a coffee with other students who have pelvic pain, or if you'd like to join the Pelvic Pain Association at Cornell (PPAC) listserv to get notified about our events, email arj66@cornell.edu!

You can also find a supportive community on social media.  This guide from the company Somedays has a great list of online discussion groups to join and social media accounts to follow for different pelvic pain conditions.

Further reading (well, listening): podcasts

Several podcasts have crafted fascinating personal and historical narratives around pelvic pain!  We especially like Tight Lipped, which focuses entirely on vulvovaginal pain, and Bodies, which has great episodes on painful sex as a side effect of hormonal birth control, fibroids, and PCOS and fertility.

Further reading: books

It can be affirming to read about pelvic pain in fiction, memoir, and nonfiction books!  Here are some that we've found:

  • Guts by Raina Telgemeier (YA graphic novel, IBS-- this was our PPAC winter book club book for 2021-2022)
  • Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics by Lara Parker (memoir, endometriosis, vulvodynia, pelvic floor dysfunction-- this was our PPAC winter book club book for 2020-2021)
  • Giving up the Ghost by Hilary Mantel (memoir, endometriosis)
  • Doing Harm by Maya Dusenbery (nonfiction about gender bias in the medical system)
  • The Camera My Mother Gave Me by Susanna Kaysen (memoir, vulvodynia)
  • PMSL: Or How I Literally Pissed Myself Laughing and Survived the Last Taboo to Tell the Tale by Luce Brett (memoir, pelvic floor dysfunction, incontinence)
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman (memoir, endometriosis)
  • Reproductive Injustice: Racism, Pregnancy, and Premature Birth by Dána-Ain Davis (nonfiction about medical racism in reproductive medicine)
  • Conversations With Friends by Sally Rooney (novel, endometriosis- somewhat inaccurate depiction)

If you notice any errors or have any helpful links that you would like to see on this page, please send an email to arj66@cornell.edu and we will get them added!