[image quote]: "I still wanted to feel attractive...I didn't want to feel like this girl with the science project vagina." - Erin, Episode 19; Interstitial Cystitis + Vulvodynia patient

[image quote]: "I still wanted to feel attractive...I didn't want to feel like this girl with the science project vagina." - Erin, Episode 19; Interstitial Cystitis + Vulvodynia patient

19 Keep Telling It and Keep Telling It (episode page)
Description: In this week’s episode storyteller and senior producer of The Story Collider podcast, Erin Barker, talks about her experience with Interstitial Cystitis and Vulvodynia, some of the the uncomfortable social situations her condition has put her in, being the weird girl at work, and the magic of Botox. In today’s bonus episode we talk about podcasting and sharing orr stories, Erin's work with The Story Collider and The Moth, and the somewhat unorthodox relationship she developed with her faith during some of the darker times in her experience with IC and Vulvodynia.


Hey there and welcome to In Sickness + In Health, a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is almost never not annoying.

I hope I didn’t scare you off with the vagina talk already, because it’s *kinda* my favorite topic, and this is a really fun episode. Well, as much fun as we can have with an episode about chronic pain in what is often indirectly referred to as the “lady parts.” Of course, as I’ve mentioned in previous episodes, owning a vagina, and/or any of it’s little pelvic organ friends, is not necessarily limited to the ladies. So unless you’re ready to start saying the word vagina loud and proud, we should probably come up with a more gender neutral euphemism.

So if you’re uncomfortable with some of what we’re talking about, take a deep breath, relax, try not to get the vapors. I promise this one is funny.

The terms vagina and vulva are often used interchangeably when talking about said parts, but they are actually two separate things. Well, they’re not totally separate, they are connected to each other, and part of a larger, more complicated constellation of pelvic organs. The difference is important, anatomically speaking, but colloquially and for our the purposes of this episode, vagina is often used to refer to the general area, and that’s okay. I just want to make sure you know the difference. A good example of how the terms are used interchangeably is when people suggest Georgia O’Keefe's abstracted floral paintings are actually paintings of vaginas, but more accurately, they’d be paintings of vulvas. It turns out they are neither, and actually, really are just pictures of some plants.

Georgia O’Keefe was an American artist, active from the 1910-1980’s, and is best known for her paintings of enlarged flowers, New York city sky scrapers, and New Mexico landscapes. If you don’t know who I’m talking about, you would probably recognize some of her paintings if you saw them, O’Keefe is considered by many to be the Mother of American Modernism. I’ll link to learn more about her, and see some of her work in the show notes. Even though she rejected the sexualized interpretations of her own paintings, O’Keefe’s work served to inspire generations of feminist art involving the vulva, all of which she shunned. Which side note: I think is total bummer, but at the same time, I can imagine how distressing it must be to have your work held up to represent something it does not.

Georgia O’Keefe struggled with mental health issues, which included what was referred to as a nervous breakdown in her mid-40’s. Those colorful floral paintings she is best known for was work she produced in her younger years. In her later years, she did more work in pencil, charcoal, and clay as her sight became compromised by macular degeneration, leaving her with only peripheral vision. She continued with this work into her 90’s. She’s always been one of my favorite artists, and as someone who identified first as an artist, and later as a disabled person, it’s been really cool to revisit many of my favorite artists to find they too lived with disabilities. So look forward to me finding excuses to talk about them more on the show. If you have recommendations of disabled artists or books or other media about them, send them my way. I’d love to hear about them.

In the show notes I’ll also include links to learn more about the other stuff we talk about in today’s episode, which will include some diagrams and discourse to better understand the whole vagina vs. vulva situation. Even without a diagram, a good short cut is to think of the vulva as the outside part, and the vagina as the part inside the hole. Like I said, they’re part of a larger system, so the thing about having a vagina and a vulva, is that there’s a lot going on down there. There’s also the uterus, fallopian tubes, ovaries and the bladder; add to it all the digestive plumbing we have hanging out in our pelvises, and there’s an awful lot that can go wrong.

It’s not uncommon for one problem to trigger another, or several, and that’s exactly what we talk about in today’s episode. I talked to Erin Barker, a New York-based storyteller and senior producer of the Story Collider, a podcast that records people’s personal stories about science told live onstage. In the show notes, I’ve also linked to some of Erin’s storytelling, including the story about her experience with Interstitial Cystitis and Vulvodynia that won The Moth GrandSLAM storytelling competition. We talk about her diagnosis, some of the the uncomfortable social situations her condition has put her in, being the weird girl at work, and getting Botox in my head and her vagina.

Interstitial Cystitis (or IC), also called painful bladder syndrome, is a little heard of, poorly understood condition that affects the lining of the bladder. Vulvodynia, which of course also remains, little heard of and poorly understood, literally translates to “unexplained vulvar pain,” and can be localized to one or more specific areas of the vulva, or more generalized pain in the area. We don't know the true prevalence of either condition, but it seems they are relatively common and present on their own, together, or secondary to other medical conditions.

As you can imagine, these are conditions that people don’t talk much about, even though they are relatively common. In episode 05 of the podcast, Cathy mentioned she has IC secondary to Rheumatoid Arthritis, but didn’t get to talk much about the bladder problem. I’ve actually gotten several requests from listeners to have people on to talk more about IC, as well as requests to cover Vulvodynia. I’ll use any excuse to talk to people about their pelvic pain, but not everyone is super psyched to talk about it themselves. I am really excited to bring you this episode, I was looking for someone to cover these topics with for a while. So I am so grateful to Erin for sharing her story, and doing it in a way that has made me laugh so much while I was editing.  

In today’s bonus episode, we talk about podcasting and the power of sharing our stories, her work with The Story Collider and The Moth, and the somewhat unorthodox relationship with her faith she developed during some of the darker times in her experience with IC and Vulvodynia.

You can find resources and more from us at insicknesspod.com, and on social media @insicknesspod. Shoot me an email at insicknesspod@gmail.com, I might not get back to you right away, but they mean a lot to me! Check out the podcast Erin produces at StoryColider.org, and like I said, find links in today’s show notes to her stories told live on stage. If you can, please rate and review both our shows on iTunes, which helps other people find us, and I hope you enjoy this episode!


*Just a note: I misspoke here, it’s up to 50% percent of women by age 80. I put a link to that article and more information about it in the show notes, but pelvic organ prolapse occurs when there is weakness or damage to the normal support of the pelvic floor.  The pelvic floor holds up the pelvic organs, so if the muscles and/or layers of connective tissue, become weakened, stretched, or torn the pelvic organs may fall downward. The organs drop down from where they should be and can cause trouble. In severe cases, women may feel or see tissue coming out of the opening of their vagina. So that’s a fun thing we can look forward to maybe dealing with.

[rest of interview]

Thank you for listening to In Sickness + In Health. Check out the links in the show notes to learn more about some of the things we talked about, and hear some of Erin’s stories told live onstage. You can find more from us at insicknesspod.com and on social media @insicknesspod. If you can take a few moments to rate and review us on iTunes, it will help other people find the show.

And don’t forget to be excellent to yourselves and each other.