Endometriosis Was Just The Beginning

March 16 13 min read

Lara Parker has Vagina Problems, and she wants to tell you all about them. Nearly ten years ago, she discovered the word that would set her life on a strange and painful course: endometriosis. She’d soon learn that it was the predominant one of many gynecological and pelvic floor conditions ravaging her body, explaining the constant, agonizing pain in her abdomen and making penetrative sex physically impossible.


Lara’s suffering has been exacerbated to a great extent by the ignorance of the medical community, and the ableism and misogyny of the world around her. She became determined to break the silence surrounding all the pain that primarily affects women, and in October 2020 she did just that with the release of her first book: Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics. It’s an amazing read, and I had to know more about her. It was my pleasure to chat with Lara about pain, pleasure, weed, and saving yourself with sexy selfies.


If you’d like your own copy of Vagina Problems, Lara appreciates supporting local bookstores, either IRL or on bookshop.org, where a portion of all profits go to indie bookshops.


This interview has been edited and condensed for clarity. 


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How did you come to receive your diagnoses?


By the time I was formally diagnosed in 2012, I’d been having symptoms for about five years. Doctors had been useless at best when I went to them for help. But I knew it was more than just a 'difficult period' because I had pain even when I wasn’t menstruating, and there were gastrointestinal issues as well. I started doing my own research after I started experimenting with sex and discovering that I couldn’t because it was excruciatingly painful. I fell down a rabbit hole on Google that led me to the word “endometriosis,” which I had never heard before. 


When I started reading the symptoms, it all just clicked. I had every single one. I took that information to a gyno, who agreed it was a good hunch but said it could only be confirmed through surgery, which is still true today. It was presented as the only solution, and I was so hopeful, but it actually made the pain much worse, especially the pain related to pleasure and intimacy. My doctor was hugely in denial about all of this, insisting he’d “cured” me, so I ended up at the Mayo Clinic, where I was diagnosed with other conditions, like vulvodynia and vaginismus.



It’s very notable to me that you only gained access to treatment after essentially diagnosing yourself on Google, and that that was the least of your problems in navigating the medical establishment. In your book, you describe an endless torrent of gaslighting, slut-shaming, ableism, and misogyny. What are your biggest obstacles in dealing with doctors?


Doctors are simply not trained to handle complex, chronic conditions. They don’t know how to deal with an issue they can’t cure and tend to blame the patient instead. I want to see a reckoning with medical training in my lifetime because there’s a lot of work to do. It perpetuates virtually all forms of oppression. It doesn’t look at things holistically. And there’s just so much hubris involved. I’ve never once spoken to a doctor who was able to say, “I don’t know how to help you, but I will continue to use everything at my disposal to try.” Instead, I’m constantly met with, “I don’t know, it seems like you’re not following the right diet or you need to stretch more.” It always gets turned back around on me. 


Medical trauma and gaslighting are very, very, very real, and deeply damaging. And that’s the experience of a thin white woman! I can only imagine how much worse it gets for people without those privileges. To this day, I struggle to trust my own thoughts and emotions. I don’t think people realize the toll it takes on you to be repeatedly told what you’re experiencing isn’t real, that it’s in your head or somehow your fault. Meanwhile, all the stress that comes from this can contribute to our pain levels. It’s such a vicious cycle. 



Your book, Vagina Problems, is adapted from an essay you wrote for Buzzfeed that went viral seven years ago. It received a huge outpouring of support and “me too”s from all over the world. How did it feel to receive that kind of recognition after so many years of searching for one doctor to believe you? 


After the Mayo Clinic, I was left trying to figure out how to emotionally integrate the knowledge of my diagnoses. I started wondering if I was the only one going through this and joined a support group. I felt so alone at twenty-one thinking I might never have sex without pain, and being around people who could say “I’m going through this too” was so important. That’s when I knew I had no choice but to be brutally honest about this. I honestly get choked up thinking about all the amazing reactions I’ve gotten to my story because I know exactly how isolated they all felt before they found someone who understood. Talking about this wasn’t necessarily something I wanted to do until I realized how many others were suffering.



In Chapter three of your book, the reader has a front-row seat to a violent endometriosis attack, one that left me squirming in my seat. What inspired you to be so candid about that? 


That’s basically the reaction I was going for. I think the endometriosis community needs people to really understand the depth of the suffering that we are living with. The disease is so much more than just a “painful period.” I also wanted to push back on the pressure to perform positivity that I think a lot of chronically ill people feel, which is so damaging. 


I didn’t realize how damaging until I started doing intensive psychotherapy and working through how I feel about my illnesses, and how others made me feel like I should just be thankful it made me stronger or something. No, this absolutely sucks. I shouldn’t have to live like this. I don’t want the world to continue to ignore this. I know most of my readers aren’t doctors and can’t enact change in that way, but statistically speaking, almost everyone knows someone who’s dealing with this, and hopefully, they can come away with more empathy and compassion for us, and advocate for a world that’s easier on us.



Since the pandemic began, I’ve heard from a lot of disabled people for whom the instant accessibility has been bittersweet. Zoom allows for their inclusion in meetings and events they may have otherwise missed, but it’s only being utilized because it benefits abled people. What was your initial reaction? 


My initial reaction was relief, above all else, because of all the ways my life has become easier since I’ve been able to work remotely full-time, and surely it’s not just me. But that relief was closely followed by a lot of anger. I know so many people who have experienced exclusion from important things due to illness. A friend of mine in law school was denied accommodations for classes because they didn’t believe her endometriosis was worth increasing accessibility for. Now, we have Zoom everything at the drop of a hat. The anger is followed by fear because is everyone just going to forget we exist again once the pandemic recedes?



What do you hope stays the same once it’s safe to work in person again?


There absolutely needs to continue to be a Zoom option for meetings, and it shouldn’t need to be by request, it should be standard. Beyond that, disabled people need to have a seat at the table where decisions are made. There are disabled workers in every place of employment on Earth, so why is no one asking us what would make our lives easier? Why are we not listened to when we speak up anyway? It feels like something I’ll need to be doing myself as my company returns to the office. 


It’s never been clearer to me that working on-site 40 hours a week is just not physically possible for me right now. Not every single week. I need to know that that won’t be an issue, and I don’t want to be made to feel like an inconvenience now that I know it can be done. If all these big companies just go back to the office thinking work-from-home is over now, honestly fuck them. That is so ableist and disappointing. We’ll probably see a lot of that, unfortunately. But it’s no longer acceptable, it never was, and there needs to be accountability.



For so many people, financial pain can be comparable to physical pain. You make several mentions of medical expenses in the thousands of dollars despite having decent health care through your parents and then your job, a very American aspect to your condition. What’s the most eye-popping bill you’ve ever received? 


It was probably my most recent surgery, in January 2020. For a long time, I couldn’t even get that surgery because it cost fifteen thousand dollars out of pocket, with no insurance reimbursement. There’s no choice but to pay upfront. To be entirely honest, I could only afford it because my grandfather passed away a year earlier and left me some money. It’s such a privilege that that was even possible, but how sad is that? This is the kind of cost barrier that’s involved here. Not every surgery is that expensive, but that’s not unheard of either. 


I think it’s so important to share the financial aspects of this disease because the cost barrier to getting care leads to so much more suffering. You can’t even get a diagnosis of endometriosis without a costly surgery, and diagnosis is necessary to gain access to any sort of treatment. It’s impossible to talk about this disease without talking about cost. I’ve seen way higher bills than mine from people in the community. It’s nuts, but it’s normal here. 



You describe cannabis as being the only effective painkiller you’ve used. Can you tell me about the journey to that discovery?

 

I grew up in a really small town where cannabis is highly stigmatized, but eventually, I started dating someone who smoked a lot of it. One day I was on the couch, dying in pain, and he offered me a hit of his bowl. I was just like, “Okay fine, whatever.” I was 22 or 23 and I’d never smoked weed before, but I figured I had nothing to lose.

The relief I felt was instantaneous. My body was so relaxed, I felt like a brand new person. I had no idea it would be like that. 


After that experience, I started experimenting more. I learned quickly which strains were most effective for me and began to use cannabis regularly, at first like once a week, and now multiple times a day. I always had a lot of guilt about needing something for relief, as if I didn’t deserve it. Understanding cannabis as medicine has made a huge difference with that. It’s important to me that people understand that I’d have so much more pain without this plant. It has really changed my life, and everyone deserves the chance to see if it might do the same for them. 



Do you have any favorite strains? 


Oh, that’s a good question! If I’m having really bad pain and I want to completely dissociate and be on the couch stoned out of my mind, I’m reaching for Face Off OG. My go-to for stimulating appetite is Banana OG. It has a great fruity flavor and leaves me ravenous, which is astounding to me because I just never have an appetite due to constant nausea. The fact that I can take a couple of hits and then want to eat a burrito is just wild! I also really love Papaya, which I discovered after visiting Denver. It’s really great for pain and mood, and appetite as well. That’s my top three, for sure.



The treatments that seem to offer you the most pain relief, particularly cannabis, but also things like massage therapy and acupuncture, are considered “alternative” by the medical establishment. What do you make of that? 


It makes perfect sense when you consider that many physicians don’t take your symptoms seriously unless you accept some sort of pharmaceutical treatment. At this point, I try to avoid Western medicine, or if I have to use it, I do so in combination with more holistic therapies. I love all the bodywork so much, like the treatments you mentioned. What makes the biggest difference for me is that these “alternative” practitioners were, for a very long time, the only ones who believed I was in pain, believed I deserved relief, and who were committed to helping me achieve it. That alone reduced my pain, which showed me how important it is to have a treatment team that genuinely cared. 



It took a long time for you to learn you could still have access to pleasure, largely because the media’s “sex sells” attitude keeps a very two-dimensional depiction of sex at the forefront of our cultural imagination. How has your illness helped you expand your understanding of sex beyond vaginal penetration? 


I mean, the fact that I went into getting these diagnoses ten years ago, thinking the only way to have sex was for someone to stick their dick in me is just so sad. The world did me such a disservice. And that’s also just totally ableist, right? So many people can’t have sex in this “traditional” way. Eventually, I just had this big epiphany, that sex can actually be whatever I’d like it to be. It can be whatever gives me pleasure and whatever makes me feel intimate with my partners. It really changed my life. 


I’ve learned so much from talking to others as well. I remember one of my friends, a straight woman, telling me she’d never come from penetration alone. I was so taken aback because I’d never had pain-free sex, and now I was learning that some people weren’t even getting pleasure from it and yet still treating it like it was the greatest thing. I really wish I had known before my twenties that if you have a vagina, penetration alone is usually insufficient for orgasm. That’s something everyone needs to know.



Your sexy selfies are world-class! How did you come to embrace this mode of sexual expression? How did the boudoir photoshoot come to be? 


Thank you so much! You know, I was unable to see myself as desirable in any way as a straight woman for a really long time. It felt like my inability to have penetrative sex just eliminated the possibility. When I would try to explore my sensual side anyway, I would almost feel like a fraud, which makes me so sad in retrospect. Any time a man would compliment me, or I’d be wanting to reciprocate sexual interest, it felt like I was lying to everyone. Like oh, I’m posting a sexy picture but I can’t have sex, I’m such a fraud. 


I had to convince myself that I deserved pleasure, that I deserved self-expression. It was incredibly healing to get into sexting and masturbating and taking all these pictures of myself. One day I was buying some nice lingerie and I felt so powerful, just for being able to express myself in that way. I ended up doing the boudoir shoot because I was seeking a sense of empowerment in my body, and I suddenly wanted people to look at me and be like damn, she’s hot. I was more willing to see myself as loving, as desirable, and worth looking at, everything I’d avoided for all of those years.







Aria Vega
« Aria is a poet, essayist, and advice columnist (ASK ARIA @ Lustery POV) based in Atlanta, Georgia. Her work explores sexuality, relationships, and somatic experiences. When she's not daydreaming about living underwater, she's probably talking to her houseplants or meditating under the moon. " » All posts →