Vulvodynia: My 3-Year Journey to Diagnosis and Relief from Chronic Genital Pain

The mistreatment of my sexual dysfunction and eventual road to recovery.

Sometimes sex is uncomfortable. Sometimes it’s funny or awkward or messy. Sometimes it hurts. 

For an act that is supposed to be pleasurable and satisfying, sex can be awfully tricky. In fact, over 40% of American women and 31% of American men have experienced sexual dysfunction or a disruption in the sexual response cycle that renders sex unsatisfactory in some way. 

Despite the widespread prevalence of sexual dysfunction across the population, diagnosis and treatment are still shrouded in mystery. Many doctors are under-trained and uncomfortable asking patients for a detailed sexual history, which often leads to sexual dysfunction remaining undiagnosed. 

Even when a diagnosis is reached, treatment options for sexual dysfunctions remain extremely limited and difficult to access. The social stigma that lingers around sex makes it difficult to discuss, research, and understand, and sexual dysfunctions continue to go undertreated as a result. 

My experience with sexual dysfunction

I experienced the difficulty of having a long-term sexual dysfunction first hand.

I had always found it difficult and uncomfortable to be penetrated by anything, including tampons, and I experienced near-constant pain during sex. 

Perhaps because discomfort and sex were always married in my mind, I didn’t think of my pain as an acute problem until years after I first became sexually active. When I finally built up the courage to ask my gynecologist about the pain, she advised that I use more lubrication and engage in more foreplay. 

That didn’t feel right to me, but I was too unsure about what the problem could be to push back. I trusted that if something might be wrong with my body, she would be the one to walk me through all the possibilities. 

Her solution was not, as it turned out, a solution. In the following year, I discussed my persistent pain again with her and with a nurse practitioner (NP). More lube, more foreplay, they suggested. I knew this wasn’t the right advice, but I wasn’t in the practice of telling healthcare professionals that they were mistaken. 

I tried to believe the gynecologist and NP, because they had given no indication that there could be something understandably and significantly wrong and I didn’t want to be a difficult patient. 

This made me feel like the pain was something I had made up in my head, like an imaginary friend that I refused to let go of. I used more lubrication and engaged in more foreplay and then had painful intercourse, believing in every instance that maybe this time will be different. And when it invariably wasn’t, maybe next time will be different. 

The painful road to relief

After three years of pain-tinged intercourse, I finally found a nurse practitioner who believed me and helped me find a name for my very-much-not-imaginary discomfort.

As it turned out, it was just as difficult to find a proper diagnosis as it had been to find someone who validated my pain. It took several referrals and many more discussions of my sexual history to finally be able to land on one word: vulvodynia. 

Unfortunately, this word means everything and nothing. Vulvodynia refers to chronic genital pain of any cause. 

Unsure of the direct cause of my pain, the nurse practitioner prescribed regular visits to a psychotherapist and a pelvic floor physical therapist to help me learn how to manage my discomfort and the psychological causes and effects of it. 

I contacted the pelvic floor physical therapist’s office that the nurse practitioner had suggested, and was told there was a five-month wait and that a referral was necessary. I was lucky enough to have health insurance that would have covered the cost of the visit, but I put it off and put it off. 

I was busy with school work and my job, and the idea of having a stranger putting fingers inside of my vagina, an experience that I associated with emotional and physical discomfort, was intensely scary to me. 

Facing fear and finding hope

My fear at the prospect of being penetrated by a stranger was intensified by the negative experiences I now associated with healthcare and my sexual wellness. 

Even though I was assured by the NP that the physical therapists were caring and understanding, the level of care that I had received at the hands of others to fix my pain had been lacking for so many years that I was reticent to enter a new, unknown space with unfamiliar people. 

I never ended up going to the physical therapist’s office. 

I was, however, lucky enough to have access to a psychotherapist who has also experienced chronic genital pain. She helped me come to terms with my pain and with the emotional stress it had created in my life. 

Being validated and feeling heard has helped me develop a growing patience with my body. Although far from fully rehabilitated, I have finally begun to feel in control of the situation. 

The process that I underwent to find my diagnosis and begin to heal was emotionally strenuous, time-consuming, and would have been insurmountably expensive without health insurance. This is due, in large part, to the feeling of taboo that surrounds discussions of sex and sexual dysfunctions.

 The awkward silence that hovers around sexual dysfunction led me to feel alone in my pain for years. However, I have come to realize that sharing my story is a productive place to start. 

Opening up about my dysfunction helped me find a community of women who shared similar experiences, women I can turn to for emotional support and advice. Discussing sexual dysfunction is scary, but it has also led me to find support, love, and companionship. 

Sharing may not fix the healthcare industry or erase the taboo around sex, but it does build community and shatters any feelings of alienation.

Image source: Park Street