Hi Jennifer – this is a great question as many of us who have had vaginismus before (like I have) experience roadblocks in the medical world on the way to a diagnosis and a treatment path.
My negative experience with the medical community began in college. I hadn’t had sex yet when I went off to school (assumed my past inability meant I just “wasn’t ready”) but I wanted to get on birth control pills so that I COULD have sex when I felt ready. When I first got on the pills I didn’t have to have a gynecological explanation because I was under 21 and a virgin, but once I turned 21 it was necessary for my school’s clinic to attempt a pap smear to keep getting the pills. It went VERY badly and I had the experience most women with vaginismus report when someone attempts to examine them – legs locked together, crawling up the table away from the nurse, utter panic and a desire to flee. My experience with the doctor was frustrating – I got told I needed to “just relax” and my experience during that pap smear wasn’t taken seriously. The doctor was somewhat sympathetic and gave me a prescription for birth control for another year even though she hadn’t been able to successfully conduct the exam, but she didn’t at all address why it was so hard for me to be touched. It was only after I got back to my dorm room that I started doing my own research on why I wasn’t able to get a pap smear and discovered the existence of vaginismus. It was a huge relief to realize that my pain had a name, but also extra disheartening to realize I’d been treated so callously by doctors who should have taken my feelings and symptoms seriously even if they didn’t know what they were (which is also disappointing in retrospect since a college health center sees so many young women pass through its doors).
From reading about vaginismus, I knew deep in my heart that it was what I had, but it wasn’t until 4 years later when I went to the Maze Clinic for an evaluation that I actual got a formal diagnosis of vaginismus. It amazes me that the touchpoints I’ve had with other parts of the medical system (including a gynecologist who performed a pap smear under anesthesia) never involved anyone who believed my symptoms could be anything other than “nerves” or who was familiar with vaginismus. My free 10-minute phone consult with the Maze Clinic at age 24 was the first experience that I ever had with the medical field where I felt understood and listened to in my pain. Even before I actually sought treatment, that phone call was the first step in my healing because I was believed and taken seriously.