A Lifesaver in Disguise

In case you haven’t heard, May is Pelvic Pain Awareness Month. I like to think of every month as pelvic pain awareness month, but I appreciate the efforts being made to this isolating condition. Before I procede I want to clarify that pelvic pain also affects men. I never want to minimize their pain, however, since I have a vagina I can’t help but come from a women’s perspective.

I have recently connected with countless women via my social media accounts. Many are in other countries and have limited access to help compared to the states. And that’s saying something! A common complaint I hear is that no one truly knows what’s wrong with them. I understand that, as I was once in that situation too. The most frequently asked question I get is how did I find the right help?

Let’s assume most doctors mean well (although there are a few a-holes out there). They want to help you, but they truly don’t know how. In the U.S. gynecologists have very limited education on female sexual health. They are trained to look at your vagina, cervix and uterus. Female sexual dysfunction and pain are not taught in medical schools and it’s not taught in residency programs. Rather frustrating considering that there are more cases of vulvodynia than breast cancer.

female sexual dysfunction and pain are not taught in medical schools, and it’s not taught in residency programs.

If you’re like me, I always thought my vagina was on the outside. Turns out the vagina refers to the inner female genitalia. The vulva (opening) and the vestibule (think of it like a tunnel that leads one to the other) come before the vagina. This is typically where pain occurs, not the actual vagina. When you go to your doctor for your annual of postpartum checkup, they are completely bypassing these areas. Not because they don’t care, they just haven’t been trained.

…they are completely bypassing the areas that cause pain.

Rather than admit their lack of training, they typically conclude nothing is wrong because they can’t “see” any issues. This is a big part of the problem. I suffered with pelvic floor dysfunction for three years before getting diagnosed. That’s a walk in the park compared to stories I’ve been told. I know one women who suffered for 20 years… 20 years!!! We’re often made to feel like it’s in our heads when in actuality it’s there lack of knowledge. I’m not trying to place blame because after all, we don’t know what we don’t know. I just wish they would own up to it rather than make false claims.

So, let’s return to the very important topic of finding help. How did I do it? I’d love to say it was easy. That it was just a matter of calling my insurance and finding local providers. It was anything but easy. I went down a rabbit hole on the internet. I’d scour blogs and random articles trying to piece together the puzzle that was my most intimate part. As you can imagine, Google can sometimes backfire. At one point I was so desperate for information I believed I was allergic to my husband’s seamen.

I had been tight lipped about my pain but I eventually shared it with my mom. She insisted that it wasn’t ‘normal’ like the doctors wanted me to believe. God love her, next thing I know she sends me a link to a book she found online titled When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain.

How she discovered it I don’t know. I thought I had looked everywhere. I read a sample of it on Amazon and I was floored. It was like the author was speaking directly to me. I quickly realized that I wasn’t crazy, this wasn’t normal, and there was something I could do about it.

I’m not exaggerating when I say it saved my life. Prior to finding it I had resigned to being in pain all of the time. You could say I gave up. I was hopeless and had dissociated from my body. If I hadn’t read this book I don’t know where I would be today. It put a name to my pain and lead me to the National Vulvodynia Association (nva.org), and from there I found my doctor.

Andrew Goldstein, MD (co-author) is basically the who’s who in regards to female sexual dysfunction. He is considered a pioneer in the field and has treated countless women experiencing pelvic pain. What I appreciate most about this book is the explanation of the female body (as I mentioned, I was confused about where my vagina was) and possible contributions to the pain. There’s a laundry list of underlying conditions such as (but not limited to); birth control, menopause, chemo treatments, physical or emotional trauma, endometriosis, pudendal neuralgia, and pelvic floor dysfunction. Understanding the root cause is crucial to finding the right treatment. The book even offers suggestions on how to approach your doctor and explain what you are feeling and where.

I also really valued the book’s acknowledgement of the emotional damage vulvodynia can cause. It effects your confidence, quality of life, and relationships. There is a entire section devoted to coping and communicating with your partner, and obstacles you may face even after the pain is gone.

I really can’t stress how valuable this book is. Every time I’m asked how I found help, this is where I start. I recommend it to every women I speak with. At the very least, it puts you in the driver seat by helping you identify your pain. Not everyone has the luxury of finding a specialist or one that their insurance covers. You might be faced with sticking to your current OB/GYN. In that case, I encourage you to bring this book to your appointment. Use the images to reference where you feel pain. Turn to the pages that outline what’s happening. If your doctor still denies it, then you’ve got your answer. Find another one! Don’t ever believe they know your body better than you do simply because of their title. You are your best advocate. Knowledge is power my friends!

2 thoughts on “A Lifesaver in Disguise

    1. You’re welcome. I am happy to hear this post was useful to you. I hope the book provides you the same hope it did for me. Wishing you continued healing.

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