I was 24 as I sat in the cold ObGyn office. I couldn’t have known at that moment that it was just the first of many doctor’s appointments I would have in the following years, trying and failing to find out what was wrong with me.
A year previously, I had gotten an IUD. I was tired of the side effects of the pill, and I wanted birth control I didn’t have to worry about every day. I was actually very lucky, as I read many horror stories later from women who experienced excruciating pain when theirs was inserted. But besides some minor cramping, I didn’t have any issues.
Nine months later, the trouble started. I was on a trip with my boyfriend and noticed that sex was sort of painful. I suspected I might have a yeast infection, so when we got back home, I bought a round of Vagisil and waited for the itching and pain to subside.
By December, when I was at the ObGyn to get my IUD removed, the pain and itching had only gotten worse. I’d taken oral antifungals, tried multiple rounds of Vagisil, and nothing. Since nothing had been wrong with me before the IUD, I figured the symptoms had to be related. The doctor, a different woman than the one who had inserted my IUD, rolled her eyes at me when I told her I suspected the IUD was causing my symptoms. “They don’t do that,” she said. But then, she also couldn’t offer any other suggestions as to what was wrong with me.
I went home hoping my issues would soon be over. I was very wrong.
Two Years of Pain and No Answers
My symptoms kept getting worse. I basically felt like I had a yeast infection all the time, and sex was so painful I tried to avoid it altogether. It literally felt like I was being stabbed when my boyfriend would try to penetrate me.
Three months later, I went back to the doctor (a different one again – it’s impossible to get an appointment with the same person twice in LA when you have Kaiser). I explained to him that I had itching, strange discharge, and it was so painful to have sex that I hadn’t done it in over a month. He was sympathetic but had no explanation for my symptoms, saying he could test me for yeast (again). A few days later, they called back with the results: no yeast infection.
Over the next two years, I probably went to at least 10 different doctors. I would describe my symptoms and explain how painful sex was. At that point, I was lucky if my boyfriend and I had managed to have sex once in three or four months. Our relationship was on the rocks, as whatever was wrong with me was taking a toll. I was frustrated that I couldn’t figure out what was wrong, guilty about having to always turn him down for sex, ashamed of myself for not working right. I resented that he could have sex normally while I suffered through stabbing pain if we even tried to do penetration.
I resented that he could have sex normally while I suffered through stabbing pain.
It had also thrown me deep into a depression, feeling that I was a bad girlfriend and wondering if I’d ever be able to have sex normally again. I wanted to marry this man, but I was watching our once loving relationship slip away as the stress and uncertainty ate away at the intimacy we once had. It’s impossible to describe the deep sensation of being betrayed by your own body and not understand why. I’m feeling the same way again now, years later, as I struggle with infertility. It deeply undermines your sense of self and leaves you feeling helpless.
No matter how I explained these symptoms to the doctors, no one had any answers. I got responses from curious to outright dismissive, but they all had one thing in common. Since they didn’t have a clue what was wrong with me, it was obviously in my head. There were no follow-ups, no further explorations of what might be the matter. They all did the same test over and over again, no matter what I insisted I wanted looked at. And since it was impossible to get an appointment with the same person twice, I felt like I kept having the same conversation over and over again, like deja vu. And nothing was bringing me closer to figuring out what was wrong.
Solving the Mystery (Sort of)
I lived my life on Google. I searched out possible diseases that could cause itching, swelling, and painful sex. Most were STDs, which I knew I didn’t have. I tried every stupid homeopathic trick in the book. I drank apple cider vinegar, hoping it would “rebalance my pH.” Spoiler alert, it didn’t. I read article after article, often crying at the end of Google sessions, feeling more confused than ever. After all, I wasn’t a doctor. Why was diagnosing what was wrong left up to me?
It was something like the tenth doctor I saw who finally gave me an explanation. I’d lost count at that point. Of course, she delivered the news in such a rude and dismissive tone that it took me a few minutes after she left the exam room for what she’d said to sink in. She’d rolled her eyes when I described my symptoms, explaining how it basically felt like a yeast infection but no one could find any evidence of it. After the exam, the doctor was blunt. “You probably have vaginismus. It’s an involuntary contracting of the vaginal muscles. You need to go see a physical therapist.” Of course, she delivered this news in a tone that suggested that I had just wasted the last 10 minutes of her time and that I should have already known what was wrong with me. So, thanks, I guess?
Of course, as soon as I got home, I hit Google. I read about other women’s stories about treating vaginismus. Unfortunately, it wasn’t something that you could just take a pill and cure. It was a form of pelvic floor dysfunction and could require months, if not years, of physical therapy to heal. Picture that you’ve got a knot in your muscle, and now it’s tight and painful to use. That’s basically vaginismus.
Vaginismus is a form of pelvic floor dysfunction that requires physical therapy to heal.
I learned that it could affect up to 17% of women during their lifetime. How on earth had I never heard of it? Why, after two years of telling doctors I was in too much pain to have sex, had not one of them mentioned what is apparently an overwhelmingly common condition?
Perhaps it was because I had secondary vaginismus, meaning that I was able to have sex previously, and the vaginismus began after successful sexual activity. Other women have primary vaginismus, meaning they find out the first time that they have sex that their vagina simply won’t allow their partner inside.
Vaginismus is also complicated because its causes range from sexual abuse, injury (often from giving birth), infections, and even psychological damage. For example, in my research, I found several heartbreaking stories of Christian women who were so consumed by purity culture that they found their fear of sex and intimacy physically manifesting in a vagina so tight they couldn’t have sex.
Thankfully, this wasn’t the case for me. I’d been having sex before this happened to me, and I knew something was very wrong. Some women require both psychological and physical therapy to recover from the trauma of vaginismus, especially if their condition is caused by internalized sexual shame. Other women require therapy because the trauma of feeling like you’re being stabbed when you have sex can become a feedback loop that makes it nearly impossible to relax and enjoy what is supposed to be the most pleasurable thing in life.
Healing Myself Was a Long Journey
So, I made the appointment with the pelvic floor therapist. I even paid $130 (a big expense when I was living on very limited means in a big city) on a set of silicone dilators. Don’t worry, I’ll explain what those are in a moment.
I won’t go into horrid detail about these appointments, but they were some of the most awkward moments of my life. I would lay on a cold doctor's table for an hour while the physical therapist massaged and stretched my pelvic floor muscles. And yes, in case you couldn’t surmise, this meant having her hand inside me for an hour for our weekly appointments. Just try making small talk with someone while they do that. It was almost as excruciating as the vaginismus pain.
Then, after my appointments, I would have homework. The dilators are basically silicone cones that go from thin (about ½” diameter) to quite large (about 1 ½” diameter.) My homework was to use the largest dilator I could without causing too much pain and insert it inside myself while concentrating on taking deep breaths and relaxing my muscles. Think the opposite of doing Kegels. Obviously, I’d try to do that before my boyfriend got home because it was a pretty awkward and intimate moment I would rather not share.
I would lay on the table while the physical therapist massaged and stretched my pelvic floor muscles.
Oh, and another fun symptom of my mystery illness? I basically became allergic to all lubes. Just add burning skin to the burning muscle pain sensation. So for these dilator sessions, I had to buy a $24 bottle of alkaline lubricant, originally meant to help your chances of getting pregnant.
I went to the physical therapist for six months. There was some improvement, and my boyfriend and I were able to have sex somewhat more frequently. But I still often had pain during sex, and it didn’t feel anywhere near as good as it did before this all started.
Then, the physical therapist announced that she was moving to a different location, and there wasn’t anyone else nearby that my insurance would cover. She recommended that I continue using my dilator set until I was able to afford to see someone privately.
I Didn’t Expect What Would Finally Work
Alongside the vaginismus, another sexual worry had haunted me during my relationship. I hadn’t ever had an orgasm with my boyfriend. I’d had some with my first boyfriend, but not my second or current one. When we first started dating, I thought not being able to orgasm was the most devastating sexual issue I’d have to overcome. But, as it turned out, it was just one thing on a list of devastations.
So along with the guilt and shame of not being able to have sex was the existential concern that I just didn’t function right sexually, and that’s why I couldn’t have an orgasm. (Don’t worry, I’ll be breaking down this other journey in another article.) Long story short, I took a class from a sex therapist on how to orgasm. And it worked.
I was so excited to show my boyfriend what I’d learned. He was a quick learner and also very excited to be able to make me feel better in bed. But what we didn’t expect was the added bonus. After I’d orgasmed from foreplay, my vaginismus tightness was virtually non-existent. For the first time in over two years, we had amazing sex with absolutely no pain. I wanted to cry I was so happy. I finally felt like I was getting back some control over my body.
After I’d orgasmed from foreplay, my vaginismus tightness was virtually non-existent.
Now, three years later, we’re happily married and having amazing sex. But what I learned from this experience wasn’t just how to have great sex. It was that doctors are not always right. In fact, they’re often completely wrong. And they’re quick to dismiss your symptoms if they can’t come up with an explanation. They’d rather tell you that it’s all in your head than admit there’s something they don’t understand.
On my part, I never did figure out what was causing the vaginismus and infection. I now suspect that a severe mold allergy from the old building I was living in may have been the culprit, but we’ll never know for sure. In the end, we moved and got on with our lives. I’m now going through a similar journey as I struggle with infertility, but this time I’m better armed. I didn’t let my doctors gaslight me about my symptoms or tell me there was nothing wrong (there was). I searched out alternative medicine, seeing a naturopath and an acupuncturist. I don’t know what the future holds, but I’m glad I learned young that I needed to take responsibility for my own health journey. I couldn’t wait around for doctors to “fix me.”
Doctors, especially those caring for women, are far too quick to gaslight and silence their patient when she says something is amiss. I know so many women who had serious health problems for years before getting diagnosed because their doctors were convinced it was all in their heads. Did you know, for example, it takes the average woman 10 years to get diagnosed with endometriosis? If I can achieve anything by sharing my story, I hope that other young women will not waste years of their life waiting for doctors to give them answers. You have to demand them.
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