Why the Location of My Chronic Pain Has Caused Me So Much Shame

There is a particular type of shame that comes from dealing with chronic pain that no one sees, no one can name and perhaps most importantly, no one feels comfortable talking about.

If my pain had been in my shoulder or my back, it would have diagnosed sooner. I would have been believed and I definitely would have treated with more respect. Instead, my excruciating pain is in a part of my body most people have never heard of. If they have, they definitely don’t want to talk about it. People are filled with concern until they realize my pain had something to with my “lady bits.” When I finally found a competent sexual medicine doctor, I learned that my constant and excruciating pain was all located in my vestibule. Wait… my what?

My multi-year journey with chronic pain, which I came to know was a condition called vestibulodynia, was in two square inches of skin and nerve endings located where the vulva meets the vagina. At no point in my 25 years of life had anyone ever mentioned the vestibule — not in health class or during a medical exam or even during sex. How is that possible? How can something no one seems to know about cause so much pain? By the time I learned of the area, even a gentle touch with a Q-tip caused me pain of 9/10.

In navigating the medical system and slowly letting those in my life know about my pain, I have found myself sitting in isolated shame. How can I explain a pain I have only just been given the tools to discuss? Do I have the energy to constantly teach anatomy to my community as I try to explain the deep emotional pain of this experience? For me, sexual pain has carried with it a loneliness and shame that goes beyond anything I have ever experienced. It has made me feel inadequate in a way that is deeply personal and shattered my overall sense of self. I have and continue to feel ashamed of my body which leaves me feeling as if it is broken.

As I have tried to share my experiences with my support system, the reactions have been mixed. Most of my experiences with friends have been overwhelmingly positive, filled with empathy and a disgust in the medical system. It has been a lot of education, but my community of friends hear that pain was excruciating and constant (particularly with sex) and immediately surround me in support. This has been true even when I have not been able or willing to talk about it due to the shame that surrounds this issue. They have been there to pull me out of the black hole of grief and frustration.

Most conversations with others have been negative. After three years of a loving relationship and allegedly mutual break up, I called my newly ex-partner for the validation that only someone who had intimately walked with you on your pain journey can give, only to be instantly invalidated. My shame ballooned. Or the conversation in which a loved one insinuated my vibrator was the cause of my pain. My shame grew again. With each conversations, it was confused and awkward with many conversations beginning with, “so, do you really feel ready to have this conversation?” Read: Do you actually care? Do you actually want to know because it is intimate and shameful and confusing.

So, how do you talk about a pain that is invisible, intimate and located in a part of your body no one even knows exists? To be quite honest, I am still trying to figure that out. I am working to let those who love me in on my journey by sharing some of the deep shame it has created. With that said, I have learned a few uncomfortable truths.

1. Living with chronic pelvic pain and talking about your experiences is a great way to filter people out of your life for better or worse. Many people will not want to talk about your experiences once they realize it is tied to your sexuality. That is OK, even if it temporarily increases your shame. Although it may increase your loneliness and isolation at times, there are people in your life who will stand by you.

2. Start with broad scopes and only share details with those who deserve to hear it. Not everyone is entitled to know the intimate details of your health. I think this is one of the hardest lessons I had to learn, especially when I was going to the doctor or physical therapy at least once a week. People will be curious and want to know what you are up to. It is entirely up to you what to share and with whom. After repeated gaslighting by doctors and loved ones, it is OK to protect yourself. If your experiences are anything like mine, you will lose people from your life in this process.

3. Even though it will feel like it most days, you are not alone. Many folks are experiencing invisible chronic pain in areas of their body no one wants to talk about. There are communities of support that will validate your experiences, recognize it is a medical condition and won’t ask you offensive questions.

Although there is a uniqueness to the shame of pelvic pain, it is a loneliness that is shared by others going through similar experiences. Those who stick by you in these hard times will strengthen you and serve as a reminder of all that is beautiful in this world.