On Painful Sex: How a 10-Year Struggle Created a Vulvodynia Advocate

Alana is many things—a wife, a mom, a writer. She is also a woman who lived with vulvodynia, a condition that causes chronic vaginal pain that can create painful sex.

For years, Alana felt like something was inherently wrong with her, and that her only option was to grit her teeth and bear it—and just have sex anyway. She lived like this for almost a decade. Now living pain-free and helping raise awareness for other women living with the condition, she has a message: it’s not your fault, you have a right to have your concerns taken seriously, and your body is not betraying you—you just need to take back your body.

What was life like before your vulvodynia diagnosis?

Vulvodynia was an issue right from the very first time I had sex, but it took a long time before I even realized something was wrong. So often, girls are taught to expect sex to hurt at first, so I initially I just chalked it up to inexperience. I figured it’d get better in time.

I grew up in a family where anything to do with sex was considered shameful and wrong, so when the painful sex continued, I thought maybe I was just too tense. Maybe it was all in my head, or I just had to get over my nervousness, although it’s hard not to be nervous when you’re expecting it to hurt. But it also wasn’t just sex: gynecological exams were so painful and really upsetting, and I couldn’t use tampons comfortably. I never considered that the problem wasn’t me though—if everyone else was able to have sex without it hurting, then I assumed that naturally meant I was doing something wrong.

Sounds like this took an incredible emotional toll, as well as a physical one. Where did you find moments of hope and strength?

Being young and having nothing but painful, upsetting, sexual experiences made me feel like an outcast, and I kept it a secret as well, like I think most people do, which only made it worse. It also took a massive toll on my relationship. For years, my now-husband and I were only ever capable of having really upsetting, stressful attempts at having sex with each other, and eventually I just became basically completely uninterested in the idea of sex all together, which, to him, felt like a really stinging rejection, even though he understood that it wasn’t at all intentional. For a while, sex became such a sore spot that we just kind of gave up and stopped talking about it and closed off that part of our lives completely.

Despite that, the rest of our relationship was totally solid, and we really loved each other and wanted to build a life together, so even though vulvodynia was obviously a big issue, it wasn’t something we were going to break up over—it wasn’t like either of us could help what was happening. We actually got married during the period of time when we’d completely stopped trying to have sex, so going on our honeymoon felt bittersweet. We still maintained some semblance of hope that this wouldn’t always be a problem for us though, and we actually made a pact that first night that one day when we found a solution, we’d go on a “proper” honeymoon to celebrate—though, to be fair, we have young kids now, so that plan has kind of been put on hold.

What was it like to try and be an advocate for yourself in the face of so much disappointment and lack of treatment?

There are so many things that are frustrating about having vulvodynia, but I honestly feel like the process of trying to get help is by far the worst. I went to so many doctors—family doctors, gynecologists, sex therapists, neurologists, you name it—and my attempts were mostly useless. My family doctor at the time was a man probably in his 30s or early 40s, and when I told him about how much sex was hurting, he started mansplaining the female libido to me, and telling me how “complex” it was.

I had another doctor offer me a sedative that I could take before sex. My husband vetoed that idea immediately, although, to be honest, I probably would have tried it if he hadn’t, which, in retrospect makes me very sad. Every doctor I ever saw wanted to test me for yeast infections and UTIs and STDs and basically every other infection there is, and the results were always, always negative. But even once we knew what it was I was suffering from, there still wasn’t really much anyone could offer us. At one appointment, the gynecologist literally walked in the room, read my chart and said, “yeah, I’m not going to be able to help you.” I usually left these appointments in tears.

When did you finally get the right diagnosis, and how did that make you feel?

After years of this, I was referred to yet another gynecologist, and even though I was used to being thoroughly disappointed by doctors at that point, I briefly considered not even going. But I figured it was worth a shot. When I explained the situation to her, she said, “I see so many women like you,” and I remember thinking, “are you serious?!”

I had never heard of anyone who had the same issue as me, except for one women I’d met once who told me that she always found sex painful until she dumped her boyfriend and found someone new. That wasn’t helpful, given that I was already married. The doctor gave me a cream and we made a plan to take me off of hormonal contraceptives. I now realize, in retrospect, that birth control likely made the problem much, much worse for me, because it has always been a major libido-killer.

After this initial visit, she told me to come back in three months. Not long after that, the pain went away, and by the time my next appointment came around I was actually newly pregnant, which was something I once thought might not happen—years earlier, I’d had one doctor tell me not to worry, because they “could do great things with turkey basters.” I mean, honestly, do these doctors not think before they talk?

How did you practice self-love and self-care through the more difficult times?

Honestly, I really didn’t. Because I always felt like I was the problem, that my body was betraying me, I carried a lot of guilt and shame. In fact, I probably practiced the opposite of self-care: I had sex even when I didn’t want to and when I knew it would hurt, because I thought if I just pretended like I was fine, then I would at least not have to feel like I was letting my partner down. It also didn’t help that one doctor told me that “vaginas were ‘use-it-or-lose-it’ organs and if I stopped having sex completely, it was only going to get worse…this is bad advice.

There were also many nights I drank too much to self-medicate, which I regret. It was a really, really difficult time.

In the worst stage of my vulvodynia struggle, I started to wonder if maybe I was asexual without realizing it, which again, I think is reflective of the way women often internalize their sexual pain. It makes total sense to me now that of course I wouldn’t have felt interested in sex if it had become such an overwhelmingly upsetting, negative experience. But instead of feeling like that was a totally normal, valid thing to feel, I honestly wondered if the issue was something else entirely—that I’d somehow tricked myself into thinking I could feel sexually attracted to others when I really couldn’t. Looking back now, that just seems so ridiculous.

Now that you’ve made it out onto the other side, what are the largest takeaways that you want to share with other women who are experiencing painful sex?

By far the most important thing I’ve learned, and what I wish I could scream from the rooftops, is that vulvodynia isn’t a personal failure, or something anyone deserves to feel bad about having. It definitely wasn’t my fault, and yet, I’d internalized it as though it was some kind of cosmic punishment, or something I guess I was supposed to overcome all on my own, through sheer force of self-will.

I often think that if I could go back now, as a 30-something woman who knows herself so much better than I did at 18 (or 22, or 25) that I’d have enough respect for myself to know that I didn’t have to let doctors make me feel awful, that I didn’t have to do anything that made me feel uncomfortable, and that I could just accept myself for who I was and how I felt at that moment instead. Why did I feel bad for something I had no control over whatsoever?

Do you feel there are larger implications here when it comes to women’s bodies and their sexuality?

Female sexual problems, and female pain in general, need to be discussed so much more than they are, because they’re still barely even on most people’s radars. I saw so many doctors who didn’t even know that vulvodynia was a thing! Since I’ve started opening up about my experience, I’ve learned that there are so many women struggling with the exactly same thing I’ve struggled with, yet it’s hardly ever talked about or acknowledged.

Even though I don’t physically suffer from vulvodynia anymore, I feel like the emotional effects will probably be with me and my husband forever. About a year ago, I started some new medication and sex actually started feeling a bit painful again. I’ve learned that medication can often negatively affect my sex drive. I knew what was going on, that it was almost certainly the medication, and I felt confident at that point knowing that it wasn’t anything I’d done wrong, and that I could probably just go to my doctor and switch to a new medication and everything would be fine.

But in that moment, none of that mattered. I felt panicked and I started to cry, and all I could think was, “this can’t be happening again.” I was so afraid of having painful sex reenter our lives as the problem it used to be, and my reaction felt like such a poignant reminder of how terrible it really is to live with.

What surprised me though was that it was also really, really hard for my husband. He felt anxious too, and he struggled so much with how I felt—trying to be supportive and reassuring, but also dreading the fact that vulvodynia could be part of our relationship again. It kind of made it clear that, even though we don’t deal with painful sex anymore, it’s not something we’ve forgotten about or really gotten over. Even if your relationship is able to withstand something like this, it takes a big toll, and you never really move past it.

How has your experience shaped who you are now as a wife and mom and a woman in the world?

One extremely important way it’s shaped me as a mom is that it really matters to me that I try to avoid raising my kids to feel ashamed of their bodies. Right now they’re still young, so that mostly just means that we use the proper names for genitalia, and when they ask questions, I try to be as honest as possible and treat it all like it’s no big deal (because it really isn’t). My hope is that if I can lay the foundation now, if there’s no shaming or laughter or treating them like they should be embarrassed for asking totally normal questions, then maybe as they get older, they will be able to avoid some of the internalized feelings that likely made my vulvodynia so much worse.

I once interviewed a sexual assault survivor and advocate for a story I was working on, and she said, “when kids are really little, we teach them all about their body parts, we’ll point to their nose and say ‘nose,’ but when we avoid teaching them about their private parts, they learn there must be something different about those parts and that they shouldn’t be talked about.” That idea really stuck with me—what messages are we sending them without even realizing it?

Do you think women have to push twice as hard to get the same level of care men do?

I’ve seen it through my own experience, and there’s actual data that shows that men have their pain taken more seriously than women, and that now seems so outrageous to me. Could you imagine if there was a not-uncommon medical condition that made sex painful for men? I don’t think it’s a stretch to assume it would be taken seriously as a real, valid medical problem, instead of being dismissed as some kind of personal failure. I’m also pretty sure a man would never be prescribed a sedative so he could still sleep with his sexually-deprived wife.

Now you’re an advocate, and women reach out to you to connect all the time. What’s that like?

A couple years back, I wrote an essay about my personal experience with vulvodynia, and honestly, I mostly just did it for myself, and just for my own catharsis—as a writer, I often find that writing about my experiences and then sharing them is a way of letting go of any shame I’ve been holding. I’m continually surprised that vulvodynia is by far the topic people contact me about the most. I didn’t expect for that to happen, but I think that it speaks to how isolating it can be to have a condition like this. It’s not something people often talk about, there’s no easy medical solution, but it’s a huge problem, so naturally I think people end up Googling for any answers they can find.

Since I’ve also shared that I no longer suffer from vulvodynia, I obviously get a lot of questions asking about what my medical treatment looked like specifically, and I’m happy to give out that information, even though I still don’t exactly know what it was that worked for me, why it hasn’t come back, or whether what worked for me will work for other people.

One thing the emails and messages have taught me is that we really need to be talking about this more, and that the more women can hear that it’s not their fault, and that they shouldn’t feel ashamed, the better. I try to share my own story as much as I can, as well as other suggestions that people have shared with me. I’ve never tried pelvic physiotherapy, for example, but I’ve had other vulvodynia sufferers say that it’s helped them, so I try to pass along that message as well whenever I can. My hope is that I can at least serve as a reminder that they don’t deserve to be experiencing the pain they’re feeling, and maybe also give them a bit of support and encouragement to keep searching for answers.

Featured image by Madeleine Sandrolini
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One Response to “On Painful Sex: How a 10-Year Struggle Created a Vulvodynia Advocate”

Tee

May 09, 2018 9:04 am

Thank you for this. Would love more insight on the Dr you saw??
Or where we can find a doctor that understands this more

Reply

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