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July 07, 2021 4 min read

My Painful Vulva: My Chronic Vulvar Pain Journey

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Guest blog by Divulge: The Vulva Blog

My vaginal pain began 3 years ago, with a throbbing and burning pain originally isolated to during and after intercourse. That pain quickly escalated to every-day soreness, itchiness, and shooting pains up my vaginal walls. It took a year and a half to get a proper diagnosis. A year and a half. I was misdiagnosed with a UTI, yeast infections twice, eczema, and ‘allergic reactions’.

Upon first glance, it seems as though my vaginal pain came out of nowhere. Everyone was dumbfounded. I went from being able to have sex frequently with no issues, to waking up in tears because I didn’t want to put on pants.

I felt so lost.

But looking back did it really start out of the blue? Or was I just not paying attention? Why did it take so long to get diagnosed? (Cue the vicious circle of self-blame)

My mother has always reminded me that when I was an infant, I was very sensitive to diapers - she had to be careful, as my vulva would get sore and develop a rash. Progressing into my early childhood, I used to throw temper tantrums if forced to wear pants that were tight or uncomfortable on my skin. In my teenage years I seriously injured both of my hamstring attachments during my dance training, and while I saw a Physical Therapist, I now know that a Pelvic Floor Therapist would have been a better fit. I also have a mild case of scoliosis, and hips that are not only incredibly tight, but the left is not aligned with the right. Moving into my early 20’s I had multiple UTI’s, which was probably a recurring issue. But I would catch them early, drink some cranberry juice, take vitamin D and not give it another thought. But upon further reflection I recall nights spent using a cold compress on my vulva because a horrible burning pain would develop ‘randomly’ in the evening.

Now all those occurrences in isolation may be considered ‘normal’ or if anything ‘common’, but when we look at them together it becomes clear that I’ve had a sensitive vulva my whole life. Combine that with high anxiety and stress levels and the pain I experience today was almost inevitable. However, during my search for a diagnosis, I had no idea where to go for the right information.

My vulva itself was this unknown entity to me.

Unfamiliarity. Pain. Discomfort.

That is all I knew.

Now let’s stop for a second. Because was my prolonged pain really a fault on my part? And my lack of knowledge? OR was my pain and confusion a by-product of the lack of education in women’s health? I’m starting to realize it’s the latter. I was misdiagnosed time and time again because no one knew what was wrong. I got the same result from my friends and family who were completely blank when it came to ideas. I fought hard for a solid year, researching all the endless possibilities. I had a gut feeling that it was not just my vulva. I followed that feeling right until I found Pelvic Floor Therapy. Our pelvic floors are often overlooked. When we think of our sexual health we think of the word ‘vagina’ and that’s it. But that is such a narrow scope, that ends up leaving out SO many important parts that all work together in our body. And yet, I feel as though I am just getting acquainted with my vulva and pelvic floor now…at 24 years of age, only because of the pain I have experienced.

I often dream of a world where sexual education is held to a higher standard. Not only for physicians but for everyone. I consider how my story might have been different if the people in my life also knew more about vulva’s and pelvic health. Because when you know nothing, and everyone around you knows nothing, it makes finding the right information all the more difficult.

So, I challenge you this. First, refer to your vulva as a vulva. Call it what it is. Second, learn more about your pelvic floor and all that is does for you! And third, grab a mirror, and take a look at your vulva. Get acquainted. Because by simply knowing ourselves better, we have the power to advocate for ourselves, and others.

*I am currently 3 years and 3 months into my pain journey. I see a pelvic floor therapist every 2 weeks where we work on relaxing my vaginal muscles. In addition to seeing my PFT, I see a general therapist every 8 weeks, modify my diet to eliminate vaginal irritants, and have made changes to my daily life to better support what my body is capable of. I still have to cope with flare ups frequently but am hopeful for the future. My diagnoses are vulvodynia and chronic pelvic pain.

Knowledge is power

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