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Invisible pain made visible

By Summa Published: March 14, 2017

ValerieIt’s been 14 years since I became aware of my pelvic pain. Most of my life I’ve dealt with the anxiety and depression that many also experience with type of pain. I could write an entire book on my experience, so trying to condense it to a readable blog post is a challenge.

I became aware of the pain during my first OBGYN appointment where I was getting birth control pills for my heavy, painful periods. Around that time, I began having sex and found it incredibly painful. My body began to associate sex with pain. This made my anxiety worse which made my pelvic muscles tighten.

I suffered with the pain for several years undiagnosed. My friends didn’t get it; I wasn’t going to talk to my parents about it. I went to several different OBGYN, but they all told me it was all in my head (since they saw nothing with their eyes that was wrong), which was extremely stressful. One even said, “You must have been sexually abused” and told me to go see a psychiatrist/psychologist. I can’t even describe the shock of that statement and how alone I felt, and I was still in a great deal of pain.

Being told that the pain you’re feeling is all in your head is very common with this condition and slows down proper diagnosis.

I began to go a therapist as was recommended, which was good to start dealing with my anxiety and depression. I had no memories of being sexually abused and trying to figure out what may have happened was horribly depressing in itself. I was single for a couple of years at the time and felt like no one would ever love me because I couldn’t have sex.

At this time, I was out of college working full time and the pain was gradually getting worse. I only wore skirts because pants hurt and even sitting hurt. Having an “invisible pain,” a pain people around you can’t see, makes it hard to convince others that you are in pain. I’m very good at masking my pain with a cheery happy face in public, even on bad days. I remember clocking out at work and going to my car to sit on an ice pack and sobbing from the pain, and then pulling it together to go back into work.

I had been single for quite a while but started dating again in 2007 (to my now husband who already knew about my pain).

Finally, in 2008 I found a doctor who used the Q-tip test. He touched skin in the opening of the vagina with a Q-tip and I jumped off the table. He diagnosed me with vulvodynia and recommended I have a vestibulectomy. For this surgery they removed the skin of the vestibule (entrance to the vagina). The nerves there were sending excessive pain signals to my brain. I had to pay for this surgery out of pocket since the insurance claimed it was “experimental.”

This is when I finally told my parents what was going on. Sadly, talking about certain body parts with your parents/family/friends isn’t something taught in our society and I believe we need to talk about it more! So many people suffer in silence or don’t even know their body could be feeling so much better. This is why I share my story. It shouldn’t be scary to speak to people about your breasts, vulva, vagina, clitoris, penis, testicles and so on. They are body parts that we need to understand and we can’t do that all on our own.

For several years I felt better, but not all better. Since I had had the vulvodynia for so long, I now had severe pelvic muscle tightness that would come and go in different ways. My husband and I moved to Ohio during all of this and that’s when I found help for my pelvic pain at Summa Health.

Click here to read the rest of Valerie’s story.

Valerie A. Heck Esmont
Summa Health Patient/Guest Blogger

 

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