Let's face it: gyno exams aren't fun for anyone. Unless you happen to really love your doctor or have a thing for medical exams, you're most likely not bursting with joy when it's time for a gyno appointment. But for people with vaginismus — a condition that causes the pelvic floor muscles to involuntarily contract, making vaginal penetration painful or impossible — the struggle is way worse. As someone who has vaginismus, a condition that usually prevents me from being penetrated by anything from speculums and tampons to dildos and dicks, going to the gynecologist is a stressful and, at times, traumatic ordeal.

Every OB/GYN I've ever seen in my short life has known nothing about my condition, and therefore has given me some pretty terrible advice about it, like "You just need to relax," "Just have a glass of wine," and even "Well, you just might not be ready or in love enough with your partner." At the time, I took their answers seriously, even though they ran the gamut from inaccurate to obviously irresponsible — and they had an extremely negative impact on my life.

I began relying on alcohol in order to engage in intimacy, even though being inebriated never actually made penetration easier; it just made me less capable of making informed decisions. I attempted to shove phallic objects into my vagina while intoxicated, hurting myself in the process. For two years, I absolutely couldn't have sex unless I was drunk (partly to relax and partly to numb the shame I had about my body). I had sex sober for the first time with my current partner over a year ago, who at that point met me with the most understanding of anyone I had talked to about my condition.

The idea of "not being ready" was frustrating to me as well. Though I wasn't having vaginal sex, I was sexually active, and always have been so enthusiastic about sex. And implying that my partner, who I loved dearly, just may not be the one for me made for some seriously messed up mind games regarding my relationship.

Unfortunately, I'm not the only one with vaginismus who's gone through this. Advice about not being ready, or not being relaxed enough, turned up repeatedly in Mic's piece about being shamed for vaginismus last year. And among my own friends and fellow vaginismus-sufferers (we collect in a Facebook group I created called Vaginismus Unicorns), experiences that might be someone else's nightmare are their reality.

Vaginismus is a relatively uncommon condition, so many gynos aren't entirely aware of its existence...Because of that, much of the advice they give about the condition perpetuates destructive heteronormative ideas of what sex should be.

High school student Rebecca* has had the condition for years, and went to multiple gynecologists about her issues with penetration regarding tampons and sex. Unfortunately, her initial visits were riddled with extremely bad advice. "The first two [gynecologists] didn't even mention vaginismus, but they told me that I just needed to relax to use tampons," she told Bustle in a Facebook message. "When I went to one again because I was having sex issues, she didn't give me any advice but simply told me 'a lot of women have pain with sex.'"

Obviously, this completely insufficient response felt super disheartening for Rebecca. "It was upsetting that she knew that there are all these women having painful sex, was in the position to help them, and wasn't doing anything about it," she said. It wasn't until she started seeing a vulvovaginal specialist that she got proper help, and began pelvic floor physical therapy to help treat her vaginismus properly and compassionately.

Unfortunately, vaginismus is a relatively uncommon condition, so many gynos aren't entirely aware of its existence, let alone knowledgable about treatments that would be effective. Because of that, much of the advice they give about the condition perpetuates destructive heteronormative ideas of what sex should be (i.e. not always pleasurable for both partners). This, combined with this preconception that people who can't have vaginal sex are just uptight, leads to more strife than healing for those with the condition.

So I spoke with someone who knew a lot about vaginismus: Dr. Lauren Streicher, MD, Associate Clinical Professor of Obstetrics and Gynecology at Northwestern University, and author of Sex Rx: Hormones, Health and Your Best Sex Ever. Chatting with her on the phone about vaginismus gave me hope for myself and others that this condition is not quite as complicated as we think.

"Vaginismus is treatable," she told Bustle. "The challenge, of course, is for women who have vaginismus to get into the right hands. Because I'm a sex expert and treat vaginismus on a regular basis, it's not unusual for someone to come to me and I'm literally their 10th doctor. They're just at their wits end, and are so relieved to finally have someone who says this is what you have, why you have it and this is how we’re gonna treat it. Not every doctor knows how to treat it."

Getting into the right hands isn't only crucial for your health and sanity — it's also important because the condition requires a multi-faceted and individualistic approach to treatment. "Vaginismus is really a defense mechanism, it's the vaginal muscles clamping down to prevent pain," Dr. Streicher noted. "So the first thing that someone has to do is determine why is that happening, and that's a whole long discussion of all of the things that might cause initial pain, whether its endometriosis, vaginal dryness from a medication, or maybe it's a bad experience like a sexual trauma. Once you're in the right hands, you can pursue a combination of therapies which may include working with a pelvis floor physical therapist and dilator therapy."

Knowing that there is hope for recovery is encouraging, but getting there can still be traumatic. Perhaps the worst part of the situation for vaginismus sufferers is the seemingly blurred terms of consent between many patients and their gynecologists. When I was 19, only a few months after I had been sexually assaulted by a controlling and manipulative man in my life, my gyno further traumatized me. Despite pleading with her not to conduct a vaginal exam on me — based on the fact that I can't even get my own finger in there — she forced her way in anyway. I was in excruciating pain throughout the exam, and asked my doctor to remove the tools and stop. She ignored me, telling me to breathe, as my thighs shook and I screamed from the pain of her penetrating me. I felt horrified and ashamed afterwards, and have only been to one other gyno since then out of fear that I would be revictimized.

Rebecca also experienced being coerced by gynecologists and being hurt on the exam table during procedures that she couldn't physically handle. Previously, she had seen a doctor about her difficulty with using tampons, but couldn't manage any kind of exam as her legs snapped shut out of fear of the potential of pain. However, she had a worse experience with the second gynecologist she saw for sexual complaints. "I was under the impression that we'd just talk, but she made me do an 'exam,'" she said, "which consisted of her sticking her finger in my vagina while I screamed. I felt violated and angry, and I couldn't walk afterwards because I was in so much pain. That experience was SUPER traumatic and I can't even go into the building where that appointment took place without having a panic attack."

Bustle writer and fellow vaginismus-sufferer Nicole Lane had similarly painful experiences at the gynecologist. A doctor told her that she had lesions in her cervix, and that having them cauterized would help cure her vaginal tightness; after the cauterization, he left her alone on the exam table to deal with her dizzying side effects. "When I visited the same doctor a year later, he requested that I be cauterized again," she said over a Facebook message. "I begged him not to since my last experience was so bad and I asked him if there were any alternatives, but he performed the procedure anyway. Now that I don't see this doctor anymore, I typically cry and reiterate to my new doctors how important it is that this procedure never be done on me again. I felt pretty betrayed by someone who I thought I could trust. I felt that my body was insignificant."

I mentioned some of these horrific stories to Dr. Streicher, who was disheartened but not all that surprised. "Because I treat patients with vaginismus on a regular basis, my approach is completely different," she said. "I say to the patient 'I'm gonna talk to you about what I'm gonna do, and I'm gonna explain it every step of the way, and at any point if you want me to stop, you just say stop — you're in charge.'"

She also understands the need for an individualistic approach on a case by case basis, and doesn't require a pap smear or exam unless the patient has an abnormality or history of precancerous cells. "With some people, I don't do an exam at all," she said. "Someone comes in and they tell me they have vaginismus, and their first encounter may simply be a long discussion, and returning for an exam when they're ready. And that exam may just be an external exam or a one finger exam or whatever. Sometimes I give people vaginal valium to help relax the muscles. I also find it helps to give someone a mirror, because if they see what's going on, they feel like they have a little more control."

Dr. Streicher hopes to see vaginismus become more widely understood by gynecologists. But in the meantime, if they don't understand the condition too well, she implores them to ask for help. "When I see patients who have sexual health issues and I'm their fifth gyno," she said, "you just wanna say to these other gynos, 'It's OK to say I'm not an expert in this and I'm gonna send you to someone who is an expert in this.' And I think some people are afraid to do that."

Lane has advice for gynecologists who question their vaginismus-having patients, too. "Listen to us and really take in what we are saying," she said in a Facebook message. "I know my body. I know my pain. I know what is and what has been happening to me. It's very disheartening to have a professional find my sexual livelihood frivolous."

Rebecca hopes to see sensitivity and consent prioritized by more gynecologists. "If they need to perform an exam, they should make an effort to be extra gentle and ask for consent before doing anything. My current gyno uses a child sized speculum, which I super appreciate."

But most importantly, educate yourself about your condition and be empowered in the fact that you have a choice. "Patients with vaginismus have to validate that this is an actual condition," Dr. Streicher told Bustle, "and need to understand what may have caused it and more than anything, appreciate the fact that its a treatable condition. And if someone knows that going into this whole process, they will have a better ability to find the right doctor and to know if they're with the wrong doctor."

So trust your body, stick to your guns, and talk to others with similar experiences. Because chances are, you're not alone.

*Last name withheld

Images: Andrew Zaeh/Bustle, Pexels