Vulvodynia;My Story.

May is Pelvic Pain Awareness month, and I thought now is as good a time as any to start.

Trying to tell someone my story with vulvodynia isn’t easy. It’s complicated and there are many ups and downs that can get confusing if I don’t start at the beginning. Before you know it I feel like I’m telling someone my life story. I bet you know that feeling too.

To make a long story short, I was diagnosed with vulvodynia and vestibulitis after suffering with it for 3 years. It began after the birth of my son in 2007, but when I look back there were signs even before I became a mom. The pain became so intense that it lasted all day regardless of what I was doing. I felt burning and irritation all the time, kinda like acid was poured on my skin. After getting diagnosed my treatments consisted of topical medications, trigger point injections, and physical therapy. I made some progress but eventually opted to have a vestibulectomy in 2016. Today I am pain free 95% of the time. I have an occasional flare up but it is nothing compared to before.

So that’s the short end of the story. I bet you can guess what I didn’t include in that description; the years of being misdiagnosed/ignored by doctors, the frustration, sadness, isolation, depression, hopelessness, despair, resentment, and marital distress. I carried these emotions with me for 10 years. Once I found the right help I worked with a wonderful doctor and a phenomenal physical therapist who educated me on what was happening. However, no one bridged the gap between my body and what I was feeling emotionally.

You gotta understand that this was almost 12 years ago. There wasn’t easy access to information like there is now. There weren’t support groups or blogs from pelvic floor physical therapists. All I wanted was someone to talk to. Someone who also experienced it and could understand my physical and emotional pain. I think that is what made me so passionate about yoga.

I had practiced on and off for several years, but at the height of my pain I gave up all other physical activity. I loved to run… but that was out of the question. So was walking and riding a bike. Yoga was something I could do and I felt better afterwards. Initially it was just a way to keep moving because my doctors told me that was important. Over time though it became much more.

I don’t know what I would’ve done without it. It was a place for me to go and feel whatever the hell I wanted without explanation. I didn’t have to worry about my husband, I didn’t have to try to be like other women. I could just be me. There were times I literally lay there crying. I talk about it here. It’s hard to explain, but the feelings just had to come out.

Eventually I grew fascinated with the human body. Mainly the way it’s designed to move and how it functions. Which lead me to learn about the nervous system and the way the brain perceives pain. Basically, I became a super nerd. I took workshops and read and listened to podcasts. All of it inspired me to take control of my body. Enough was enough. I knew that if I was going to make a change, I had to look my whole self.

It was hard at first. I don’t know about you but I was so focused on where it hurt. It was all I could think about. It blinded me from realizing that I had developed unhealthy imbalances in the rest of my body. My low back hurt all the time. I had pain in my hips, glutes, shoulder and neck. I was flexible but I no control over it. Little by little I learned that all these things were connected.

My first step was calming my system down. Let me tell you, that didn’t happen overnight. It doesn’t happen at the flip of a switch or a in a couple yoga classes. Changing your mindset takes consistent practice. I kept a journal and logged my pain; when it happened, what made it better or worse, and how I responded to it, how it affected my mood and thoughts. That really was the trick at first. Just noticing. Over time I learned techniques to tolerate those feelings.

I played detective… exploring which movements brought physical release in my pelvic floor. Once my system chilled out I started adding work to improve my stability and posture. I worked really, really hard at becoming a healthier person from the inside out. 

Unexpectedly, it became so much easier to communicate with my doctors. I could pinpoint where my pain was better than before. I got help from a sex therapist and could speak more honestly with my husband. I stopped feeling shame and like I didn’t compare to other women. I became proud of my body and what it endured. It was simply trying to survive.

I want you to know that my success came from a multitude of things. Treatments, medication, physical therapy, sex therapy, surgery, and of course, yoga. My practice was not a cure by any means, but it helped my body feel like home again. It helped me observe my pain without any of the emotions I mentioned before. It was the friend I always needed.

Phew, that was a lot. I feel like now that I’ve explained myself a bit we can move on to other things. I look forward to sharing more of how yoga helped me, and can help you. Most of all, I look forward to providing hope. There is so much that I wish someone would’ve told me when I was going through it.

Until then, keep showing yourself compassion even in your time of struggle. You are doing the best you can. Remember that you’re not alone and I’m here to advocate for you. Knowledge truly is power.

Thanks for reading,
Naz

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