What is Vulvodynia – When Sex Hurts
The Mayo Clinic defines Vulvodynia (vul-voe-DIN-e-uh) as “chronic pain or discomfort around the opening of your vagina (vulva) for which there’s no identifiable cause and which lasts at least three months.” (1) However, what this doesn’t tell you is how it impacts the lives of persons with vulvodynia and what living with this sort of intimate pain means for individuals.
Symptoms are vague and the Mayo Clinic notes that they can come and go and be fairly unpredictable. Symptoms of Vulvodynia include burning, soreness, stinging, rawness, painful intercourse, throbbing, and itching. However, each individual is different and these symptoms may present and impact your life differently than someone else with vulvodynia.
Read Bailey’s Story Below:
Here’s Bailey’s story, When Sex Hurts:
It wasn’t just sex. It was even more than that. I couldn’t wear jeans because the seams and tight fit in the crotch would cause pain in the vulva. Any sort of touch to the vulva would cause pain.
There are many different reasons why sex can hurt for a woman. For me, the condition was known as vulvodynia. Vulvodynia is vulvar discomfort for at least 3 months without any identifiable reason for that pain. It typically manifests as provoked or unprovoked. (2)
Understanding Vulva Pain
It’s an unexplainable pain without much more than your personal experience. When I finally got into visiting a gynecologist, they confirmed the condition using something called a q-tip test. Basically, the practitioner uses a q-tip to touch around the exterior of the vaginal opening and if you experience pain with touch, then you’ve got a problem.
Pain is a very vague term. We all have an understanding of what pain means and it comes to vulvodynia pain the pain can manifest in different ways. The pain I feel in my bunions versus the pain I felt in my vulva feel different, equally miserable and uncomfortable, but a different type of pain.
For me, vulvodynia pain with sex, or tampon use, felt like a burning, stinging, sensation of pain. If you’ve had a baby, and that ring of fire moment happens as you push your child but like half that. When I wore jeans, it was a numbness and general uncomfortableness. Even though my jeans were the right size, it felt like I squeezed myself into a pair 3 times too small.
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Getting Diagnosed With Vulvodynia
I didn’t know I had this condition until I became sexually active. That said, for the years prior tampons were the bane of my existence, and I already identified that regular disposable pads really irritated me. In college, I switched to cloth pads and organic cotton fancy disposables to reduce the irritation during my cycle. However, when I did become sexually active it hurt.
The first time is always supposed to hurt, right? That’s what they say. However, when the second, third, and fourth time continued to hurt; then we knew something wasn’t right.
I booked an appointment with the campus nurse for a pap test figuring pain meant I had a sexual disease or some sort of cancer. This was not the case, and we did a series of tests while I cried in pain during my pap test. She was the sweetest during the exam, and I am so glad I visited her instead of the experiences I had after that with different professionals.
Some time passes, and I get in with a family doctor office. Once again my annual pap comes up, and I opt to visit the female nurse practitioner. Explaining my concerns, she does more tests and sets me up to visit the gynecologist. For many, this might seem like an easy referral; however, in Canada, that means years of waiting.
Seriously. It’s at least a year wait list for a referral to a gynecologist. I waited a year. No phone call. My office follows up. Eventually, I get my call and get a visit with the gynecologist (and a student gynecologist because when the opportunity to share my vagina with a student doctor comes up, you bet I’m down for that). We do the q-tip test and he recommends I get referred down to the Vancouver Multidisciplinary Vulvodynia Program. Vancouver is the nearest major medical center, 9 hours away from me.
My gynecologist closes his office and moves in the months following. My referral to the program never gets sent. I return back to my doctor’s office and tell the nurse about the program. She fills out the referral and refers me to another gynecologist. This is January/February of 2012.
My Time with the Multidisciplinary Vulvodynia Program in Vancouver
I was expected to be in Vancouver every two weeks for appointments at the clinic for about 3 months. However, because I had to travel, they were able to condense many of my appointments to make it easier. I went down a total of 6 times. I either flew or took the Health Bus. I stayed with my parents and they helped me commute into my appointments.
Appointments consisted of group therapy, physiotherapy, and visits with a specialist. This program emphasizes the power of mindfulness with pain reduction and the use of physiotherapy to strengthen (and more often the practice of relaxing) the functioning of the pelvic floor using biofeedback and dilators.
I know that Lori Boretto the lead on this program does amazing work; however, I didn’t find the program was particularly helpful for me. I understood the association with pain and mindfulness, but I wasn’t in the right space of maturity to really grapple and embrace the conversation.
I did find pelvic floor physiotherapy helpful and continued to return to Vancouver for specialized visits because the options for that level of training and support was not available in Prince George at the time.
The following February, I finally got in with a second gynecologist (after my faxed referral was lost). This gynecologist was an arrogant piece of work. I remember leaving the office crying as she insisted it was entirely in my head and that she was not able to help me. She referred me to a psychiatrist. A four-hour psychiatrist appointment later, and I never want to experience that again.
I knew the pain was not in my head.
I decided to visit a Naturopath. Finally, someone listened to my entire life story. After a few months of measuring my basal body temperature, she suggested I might have a thyroid issue and suggested a desiccated thyroid supplement. My family doctor disagrees because my TSH has remained normal for years. For the course of a year, we played around with my thyroid dosage and a few other supplements before we stabilized my temperature, moods, and had me feeling better.
But the pain with sex still persisted, and while it wasn’t miserable, it wasn’t great.
I also found a really great therapist who did EMDR therapy. She was very helpful in working through many of the issues around anxiety and depression that I have struggled with since I was a little girl.
I decided to try acupuncture. My mom had recently tried it and decided it was the thing I should try too. I found myself an amazing acupuncturist and while she didn’t know of my condition, she was wise in her skill. She warned me that it took about 3 months for your body to turn a new leaf.
I was willing to try anything. I wanted a baby and tensions in my marriage because of the lack of sex were high. It’s probably TMI, but it took nearly 2 years to consummate our marriage. The pain from sex seriously made sexual activity a mind game for me. It still is today, but it’s getting better.
I visited her regularly for multiple months until I got pregnant. Then I continued to visit her to help with the misery of pregnancy and induce pregnancy.
If you made it this far then you know this was a very long journey.
This is normal for women suffering from pelvic pain. It is often 7-10 years for women to receive a diagnosis and then try to figure out a treatment plan.
While all the pieces helped me get to the point of having sex and it is less painful, it wasn’t until the birth of my first child that a new leaf really turned. A vaginal birth of a child can really impact the human body, and after that experience, I never experienced the pain from before.
For some women, the birth of a child can be the reason pain begins, and for others like me, it can be the reason pain ends. I was active in a few online forums about vulvodynia and this was a conversation many suggested. Because of this, I was adamant that I try for a vaginal birth and be fully supported in that journey. I let my midwife know, and sought out an experienced doula. Together they were an amazing support system in helping me overcome many of my anxieties around the birthing process considering the history of pain.
I still have lingering anxieties from years of pain. I still haven’t tried to use a tampon. But, things are better than they’ve ever been.
If you have unexplained sexual pain, seek out a care provider who will listen to you and see everything about you, not just the pain. If it’s hard to find that person, seek out others who might listen.
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What can you do if you suspect you have vulvodynia?
Like all conditions, if you can’t find solace in your practitioner including OB, midwife, gynecologist and/or therapist…seek out new advice. One thing I have learned from my own experience and from listening to others is that being a physician is just like any other job. There are great doctors, okay doctors, bad doctors and why do you have a license doctors. Practitioners are not Gods, they do not know all and sometimes they are just plain assholes. No disrespect to actual assholes.
Believe in yourself and reach out to others for support. Persist. You are important. Your needs are importand and never let anyone convince you that they’re not. You can always come to The Green Vagina chat, a judgment-free zone. Visit the National Vulvodynia Association Here.
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