Patient PerspectiveLara Parker, a Wise Friend for Those with Vagina Problems

Lara Parker, author of Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (Photo credit: Mary Costa Photography)

Before I knew Lara Parker, I felt like she knew me: She was writing about her vagina for BuzzFeed, I knew we had the same condition—endometriosis—and therefore shared the same pain. Parker was the only person I knew at the time who talked about this hellscape of a disease in a way that mirrored my own experience; she was honest about her incessant pain, the ins and outs of dating and having sex, and the mental toll it takes on those living in a body that’s constantly in revolt. Endometriosis, which occurs when tissue similar to the lining of the uterus grows elsewhere in the body, can cause chronic pain, organ dysfunction, fatigue, and infertility. It can also set off a chain of events in the body that spawn new and even more confounding conditions, like pelvic floor dysfunction, hormonal imbalances, vulvodynia, and vaginismus.

These myriad conditions inspired Parker’s aptly titled Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics. Parker’s book unravels some of the issues women are told to be demure and quiet about, including painful sex, menstruation, living with chronic pain, and pleasure—and she firmly opposes a world that aims to condense women into palatable tropes. Parker’s now one of my closest friends: We’ve been there for each other through surgeries and more bad pain days than I can count. We help each other pick nudes to post and give each other affirmations that we don’t have to forfeit our sexuality, our desirability, or our horniness because we live with this disease. Vagina Problems made me cry because I felt like I was seeing myself in another person all over again. I knew I wasn’t alone. Just as Parker has been there for me, Vagina Problems feels like a warm affirmation from a close friend.

People with endometriosis should read this book. People who love someone with endometriosis should read this book. People who know nothing about endometriosis should read this book. Everyone should read this book. These conditions affect more than one in 10 people born with a uterus; they’re intrinsic to the human experience. Patients diagnosed with endometriosis are bombarded with information—about the best treatments, the best doctors, which foods to eat, the best exercises for treating our condition—but our own voices are woefully underrepresented. Parker’s book fills that void, telling a singular story about endometriosis from the ultimate expert in the disease: someone living with it. Parker illustrates how patients can balance pain, sex, and an array of doctors without losing their sense of humor or their humanity. Bitch spoke with Parker about her vagina problems, navigating nightmare doctors’ appointments, and the challenges of publishing a book about her experiences.

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Talk to me about the difficulty of selling agents on the idea of Vagina Problems.

When I first started thinking about writing a book, I queried several agents. I didn’t really get any feedback until I had a phone call with the agent [I have] now. She’s great, but she didn’t have [specific] experience with endometriosis or vagina problems of any kind. I really had to convince her that this [book] was marketable. Certain agents and publishers want to tell important stories, but they also want to make money. It’s a business. So I had to convince them not only that this [topic] wasn’t niche, but it was something that people really cared about. Once my agent and I started trying to sell the book, I just continually got feedback that this [was to] niche [a topic]. One publisher asked me if I could change the concept of the book to just be about sex. This sort of book didn’t exist in the way I felt it should. There are a lot of books that break down the research, which is really important, but I’m not qualified to do that. And then there’s the other part of it: Doctors telling you what you need to do to cure yourself. [That’s] helpful to some people, but [is] not what everyone wants to read when they’re going through this. I saw an opportunity to fill the void.

What was your experience writing about these topics while living through them?

The one word that comes to mind is exhausting. As you know, [endometriosis] never leaves our mind, whether we want it to or not, [but] we do our best to get through our days. [Writing Vagina Problems] became my second job. I was working full-time, writing my book, and going through one of the worst pain years of my life. Part of that was because my endometriosis and pelvic floor dysfunction had gotten a lot worse. And part of it was because reliving trauma brings pain. For a really long time, it was hard for me to acknowledge the emotional aspects of pain or what trauma does to the body because that was used against me. The idea that it’s all in your head or it’s an emotional issue has been used against a lot of people for a really long time. It’s not fair because we’re living with a disease and that disease causes a lot of emotional trauma. Unfortunately, these things aren’t taken seriously because of the way the medical industry [treats] women, especially women of color and Black women. So on top of this daily physical pain, [there’s] also this emotional trauma that adds to the pain. I had to relive the things that added on to the emotional pain I was feeling.

What are some of the similarities between the vulnerability that accompanies living with endometriosis and the vulnerability that comes with talking about experiences considered “taboo?”

I’ve never felt like I had a choice in being vulnerable. I’ve had vaginismus, vulvodynia, and pelvic-floor issues [for] as long as I can remember. I’ve never been able to have pain free penetrative sex. I’ve always associated orgasms with pain. I’ve struggled to have gynecological pelvic exams; it definitely [made me] feel vulnerable. And in the month leading up to my book coming out, [I] felt so anxious because I [was] like, oh my god, people are going to read [my] innermost thoughts. But [vulnerability] felt almost like second nature because I’ve been forced into it since I was 15. In order to get help from doctors and be taken seriously, we have to be really vulnerable. That sucks because if people would just take us at face value, and if doctors would listen to us and value how much these conditions can wreck people’s lives, then we wouldn’t have to bleed ourselves out like [that].

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I always struggle with feeling like I need to withhold from myself or not do certain things. That can be so toxic. You wanted to write your book; it was a joy. The fact that your joy had to be intertwined with pain is such a stark illustration of how pervasive this disease is. It takes us down, even when we’re doing something that’s supposed to make us feel joyful and successful.

It’s always there, reminding us that we don’t really [hold] the power in our own lives. That’s a hard pill to swallow—and we have to swallow it every single day. It becomes more apparent in those instances [when] we’re making these decisions for ourselves, moving forward in our lives, and doing something that’s really exciting like going to law school, writing a book, or just going to a friend’s fucking birthday party pre-COVID. We don’t get to make those decisions for ourselves; our body makes [them] for us and that’s really frustrating and hard.

Why was it so important to amplify your voice as a patient rather than relying on a doctor or an “expert?”

I got a lot of the pushback around [this] book [because] publishing houses wanted me to have an expert or doctor attached to it. I didn’t want that and I was very adamant that I wasn’t going to write a book that involved a doctor. I just don’t believe that’s a patient-first [mindset]. If you live with [endometriosis] or [are] ingrained in this community, then you know that we unfortunately can’t trust doctors. Doctor’s books can be really helpful if you’re looking for that sort of information, but it can also be extremely overwhelming to open books and see a million things that you’re seemingly doing wrong. Your diet’s wrong. You’re not going to physical therapy. You’re not getting this surgery because you can’t afford it. You’re not eating super fucking clean. You’re not doing yoga every day.

It’s really important to have that patient perspective to understand what it’s like to be in the trenches and to be at your absolute worst—when you’ve just vomited in your toilet for the seventh time and you’re in so much pain [that] you think you’re going to die. A doctor is never going to understand that level of pain. It’s really important to uplift patient stories, perspectives, and experiences because those are the ones that matter. We’ve heard enough from doctors; like all of us, doctors have the platform, the money, and they [can] get this information out there. Patients don’t and we’re [often] screaming into a void. Obviously, this book is about my own experience, but I really wanted [people] to read it and [be able to] relate.

What were some of the barriers to care that felt important to discuss in the book?

When I [discuss] the barriers that I face, I really try to make it clear [that] I’m a thin white woman. All the stuff I had to do—Googling my symptoms, seeing all these different doctors, doing all these different diets, having to diagnose myself, and waiting [more than] five years to get an accurate diagnosis—would be way worse for a fat woman, a Black woman, or a woman of color. It takes an average of seven years to get an [endometriosis] diagnosis, [though it’s a disease that] affects millions of people. And that’s [after] seeing multiple doctors and being able to access multiple doctors. What are you supposed to do if you’re living in small-town Indiana, like I was, don’t have good health insurance, and your local ob-gyn tells you that you need to go on birth control for the next 10 years? I don’t even know what to say about the barrier to care. [Good endometriosis treatment] is basically inaccessible [for] anyone who doesn’t have thousands of dollars.

Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics by Lara Parker (Photo credit: St. Martin’s Griffin)

Can you talk about the sexism you faced when you talked to doctors about painful sex?

My first surgery was an ablation, which, as we both know, isn’t effective and caused me a myriad of pelvic-floor dysfunction issues. [After my ablation], I literally couldn’t insert a tampon. I couldn’t wear pants. I couldn’t wear underwear. My vulva was burning badly every single day. I couldn’t do anything, much less have sex, but I wanted to have sex. I’ve always wanted to have a sex life. I express myself sexually; I want to orgasm. And for the longest time, I didn’t feel like I was allowed to. Anytime that I brought it up to a doctor, I was shamed for having sex before marriage. I’m sorry, is [it] 1887? I was told to try a different position, drink wine first, try lube—all these things that dismiss how detrimental it is on someone’s psyche to deal with this stuff.

It’s awful. It’s so embarrassing. The lowest I’ve ever been in my entire life was after I developed those intense pelvic-floor issues. I realized that they really don’t believe we deserve pleasure. It comes down to, “You’re not dying, so I’m not sure why I should care about this.” [Lili Loofbourow’s 2018] essay “The Female Price of Male Pleasure” [helped me realize] that [female pleasure] is what it comes down to. There are a million different medicines for erectile dysfunction, but female pain during sex is seen as something we just have to endure. I’ve had multiple doctors tell me not to have sex, as if that’s a viable solution for a 19-year-old in college. That’s devastating, and it doesn’t have to be like that. There are things you can do, [like see a] pelvic floor physical therapist, but the base level of care is, “Just deal with it. Now, pay me $500.”

If you could put your book in the hands of a couple of people, who would they be?

Obviously, [I would give my book to] a 14-year-old girl who’s going through something. [I’d want her to read] this [book] and say, “I don’t need to listen to this asshole doctor. I can find a different one.” I would like my first surgeon, who I write about in the book, to read [it]. I don’t name him for legal reasons and because he doesn’t deserve that, but I want him to know what he did to me and what his negligence took away from me. I have so much anger for the doctors, specifically my first and second surgeons, who mistreated me. I am angry at [them] and I will throw my anger at [them]; I don’t think there’s anything wrong with that. Otherwise, I’m just keeping it inside and it’s eating me alive. I would also like my college professor who told me I can’t write and I don’t have a future in writing [to read the book].

When people ask me for advice about endometriosis, I always tell them to bring someone to their appointments. It would be incredible if someone brought your book with them, especially if they don’t have a friend or a relative to accompany them. Bringing Vagina Problems would be like having another person in the room.

I would love that. That would be beautiful.

This interview has been edited and condensed for clarity and length.

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by Caroline Reilly
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Caroline Reilly is a student at Boston College Law School and a reproductive justice advocate. She has also written for Bust and Frontline (PBS). You can follower her on Twitter @ms_creilly, where she tweets about abortion rights, social justice, and being a feminist killjoy.