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I Struggled With Painful Sex For Nearly A Decade — Until I Got This Diagnosis

Plus, the treatment that changed everything.

  • Posted on 11th Jun, 2022 10:35 AM
I Struggled With Painful Sex For Nearly A Decade — Until I Got This Diagnosis Image
While some health issues are visible to the outside world, many people face chronic conditions that don't have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen's series, we're giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

I’ve always thought of myself as a savvy healthcare consumer, someone who’s more than capable of finding the right doctor, separating fact from fiction online, and advocating for myself. Most of us do—right up until the day we get symptoms that don’t make sense. 

For me, that day arrived at age 24 when sex suddenly became painful. It happened about six months into my relationship with my then boyfriend who would eventually become my husband. One second, everything felt as good as ever—the next, something was very wrong. I felt a deep burning sensation that rippled throughout my body. It felt like the first time, but worse. Startled, I pulled away, and he reeled back in concern. 

As shocking as that moment was, I wasn’t overly worried. I figured I’d make an appointment with my gynecologist, get a prescription, and the pain would go away. I had no idea that this invisible yet highly painful health issue would send me on a journey that would last years and change not only my relationship with my own body, but also the course of my career.

Seeing one gynecologist after another with no answers.

I called my gynecologist and went in for an exam and some tests. They did a pap smear, poked around to see where the pain was, tested for a UTI, and a few other basics. When nothing came up positive, they thought it might be a skin condition like eczema. I went home with a couple of creams that had no effect at all. When I called to say the the pain continued—not just with sex, I couldn’t even insert a tampon—they referred me to another provider. 

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Over the next several months, I went to three or four different gynecologists with no relief. I thought they were the only option for issues related to pelvic and vaginal health.

One gynecologist, a self-proclaimed pain expert, suggested a biopsy during our first visit, which I’ve since learned is not always advised for individuals experiencing pain with sex, as an internal biopsy can fuel the pain-response cycle and make things worse. I did end up having a biopsy and the results were lost, which was infuriating to say the least.

When he recommended another biopsy, I looked to find yet another gynecologist. Several months and half a dozen doctors later, I received what one gynecologist described to me as a last-resort diagnosis of “vulvar vestibulitis” with no known cause. He also said there was no clear treatment, which I later learned is far from the truth. 

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A breakthrough recommendation from a friend

Fast-forward seven years later: I was talking to a friend of mine who told me she had recently been referred to pelvic floor physical therapy for postpartum issues, one of which was painful sex. The physical therapist she was seeing was a pelvic pain expert and knew exactly how to treat it. I had never heard of the “pelvic floor,” much less pelvic floor physical therapy.

I immediately scheduled an appointment. In our very first session, the PT listened to my story, asked questions about my symptoms, did a pelvic floor exam, and explained that I very likely had vaginismus. She also reassured me that painful sex was extremely common—impacting as many one in five women—and that pelvic floor physical therapy can be a very effective treatment. Just by getting that diagnosis, I felt like I had a new lease on life, or more specifically, my sex life.

Getting pelvic floor physical therapy for painful sex.

In my first few appointments, my PT and I worked together to better understand the different parts of my muscles within my pelvic floor and to zero-in on where the pain was coming from (for me it was more external than internal). She used a Q-tip and worked around clockwise to help me identify my pain sensation. She showed me an anatomical model of the pelvis and pelvic floor muscles and she explained exactly what was happening to me and where. 

It was wild to realize that I knew nothing about this critical part of my body. My PT informed me that the pelvic floor muscles are not only key to having pain-free sex, they help control bladder and bowel function, support breathing and circulation, form the base of your core, and literally hold up your pelvic organs.

I'm still working to peel back the layers and figure out how to better connect with myself.

She also taught me to pay attention to my breath. I realized that I had a tendency to hold my breath and clench my pelvic floor muscles in anticipation of painful penetration, which made the pain exponentially worse. I had to learn to breathe deeply and use my breath to help relax those muscles. After years of holding tension in my pelvic floor, learning to breathe correctly was not easy but provided a deep release—like I finally realized I was clenching my jaw or holding my shoulders for nearly a decade (which I also do). 

In addition to breathing exercises, my care plan included vaginal dilators, which come in different sizes and are used to simulate penetration. By being very gentle with yourself, using a dilator helps you reprogram your mind and body to stop associating vaginal penetration with pain. We often think about pain as something you feel in response to an injury, but you can also have anticipatory pain—pain that serves to warn you of a possible threat (regardless of whether that threat is real). In my case, this was happening right before penetration.

Within just a few sessions, I felt like the majority of my pain was gone. We continued working together over the course of three months, and since then, I don't think I've experienced pain beyond a slight discomfort more than a handful of times. 

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Making pelvic health care available to everyone who needs it.

Experiencing pelvic floor PT had such a profound impact on my life. Why had I never heard about this care before? When I tried to find an answer to that question, I discovered that while 40 million women every year suffer from pelvic floor issues, there are only a few thousand pelvic floor PTs available to treat them. And most don’t take insurance. Like so many other issues that only impact women, this was an area of healthcare that got little support or recognition—and that fueled my passion for it even more.

I reconnected with my friend who first told me about pelvic floor PT and we both agreed that we had to make this incredible care accessible to all individuals with vaginal anatomy, across the U.S. Together, we co-founded Origin, a company that specializes in PT for issues related to sexual health, pregnancy, postpartum, and menopause. So that includes things like pain with sex, incontinence, pelvic organ prolapse, and recovery after a gender affirming vaginoplasty. 

We’re not only focused on spreading the word to individuals, we’re working to educate other health care providers so they can refer their patients to pelvic floor PT. Many primary care doctors and even gynecologists and obstetricians are still unaware that physical therapy can help with these issues and eliminate the need for unnecessary surgeries. But once they learn about pelvic floor PT, they quickly become advocates. 

What to do next if you have pain with sex.

If you're having painful sex, or pelvic pain that's chronic in any way, I recommend asking your primarily care provider for a referral to pelvic floor PT sooner rather than later. If you are not comfortable or don’t connect with the first PT you see, I encourage you to try someone else.

At Origin, the majority of patients being treated for painful sex have experienced some kind of trauma involving their pelvic floor (as a reminder “trauma” isn’t limited to things like sexual assault and can also involve medical exams, sports injuries, or other health conditions), so finding a PT who you feel safe with is critical. 

And because there are so many mental and emotional aspects to sex, working simultaneously with a mental health provider is something I also wholeheartedly recommend.

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More tips for dealing with painful sex:

  • Get personalized care: Everyone is different. The “right” care for you depends on what feels safe and comfortable for you. Personalized treatment is just so critical, which is why it’s central to what we’re doing at Origin.
  • Seek out supportive relationships: Sometimes partners don't know how to help and support you, which can create tension. Be very direct about what you need. If you’re not able to communicate openly with them or they’re not willing to support you, think really hard about whether this relationship supports you.
  • Talk about it: There are so many people experiencing this issue, but we end up feeling alone because we’re not talking about it. Sharing your story with trusted friends and talking about the treatment that works for you will assure others that pain with sex doesn’t have to be forever.

The takeaway.

This experience had an impact on me in ways I’m still processing now, but I also learned so much about myself and my body through the process. There's a lot of research now that shows that people who are more in tune with their bodies make better decisions—and I'm still working to peel back the layers and figure out how to better connect with myself.

Nowadays, there are so many companies doing great work in this space, and even just more conversations about pelvic pain and pelvic floor dysfunction. I am hopeful that these types of conversations can open up the dialogue and continue to make an impactful change.

Interview by mindbodygreen's Health & Fitness Director, Kristine Thomason, ghost-written by mindbodygreen's Associate Health & Food Editor Merrell Readman.

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