The last few months I pretty much fell off the face of the blog-o-sphere. It wasn’t something I meant to do; I love this blog as much as I love trying and reviewing new toys and chatting with all you lovely sex-positive people.
So wtf happened right?
Well, I’ll let my very uncooperative vulva answer that one.
In the last couple years I started started having discomfort from things that I’d always done; using soap to wash my vulva was suddenly a no-go, using baby wipes as a post-sex cleanup was no longer an option, and I suddenly had allergies to both latex condoms and the lube I’ve used for years.
Fun fact: Having an allergic reaction on your vulva is exactly as much fun as it sounds.
Shortly after starting Hedonish, the discomfort I felt kicked into overdrive and soon graduated into pain. Everything became uncomfortable—sitting a certain way or crossing my legs, the feeling of my underwear touching my vulva, and for the love of all things holy, the seam on my jeans became my arch nemesis (if it were not for yoga pants, it’s likely I would have been cited for public indecency for refusing to wear pants entirely.)
Testing toys and having sex stopped seeming like a fun option after a while, because everything I did basically made the pain worse.
You may recall Fred, my trusty auto-immune disease, and the havoc “he” enjoys creating (as with most chronic illnesses, they rarely travel alone and bring along plenty of other illnesses or conditions). My vulva is the latest casualty. After multiple doctors visits, and 8 months of trying to get answers I was diagnosed with both Vulvodynia and Lichen Simplex.
So why am I giving you the latest scoop on my vulva’s well-being?
Well, if you’ve read any of my reviews, you’re already well acquainted with her, and were clearly interested in an update.
More importantly though is that there’s very little awareness of just how prevalent these problems are. I was shocked to learn research shows that vulvodynia approximately affects 8% of women, and some studies suggest the numbers may even be higher. It’s even potentially more common in those who experience allergic reactions, and for those who have other certain conditions like Interstitial Cystitis (sigh…both of which I have).
As common as it is, it still took three different doctors and waiting months for appointments to get any answers at all, and by comparison to other people’s experiences that was pretty fast. Of the people who pursued medical care for their vulva pain, one study showed only 1.4% of the 101 patients received a diagnosis, while another study showed more than 50% of the patients surveyed received no diagnosis. What’s even worse is that there are too many people are suffering quietly with these conditions—this study shows 30-48% [of people surveyed] who had symptoms never even sought treatment.
What is Vulvodynia?**
The International Society for the Study of Women’s Sexual Health defines vulvodynia as “vulvar pain of at least 3 months duration, without clear identifiable cause, which may have potential associated factors.” Added to the definition in 2015, the last bit about “associated factors” reflects an understanding that there are many possible causes for vulvodynia (for my fellow science nerds, that list can be viewed here on page 2).
Until the definition was revised in 2015 there were two specific subtypes of vulvodynia; generalized and localized. Most individuals with localized vulvodynia had vestibulodynia, which the Vulval Pain Society defines as “severe pain and discomfort in the vestibule area of the vagina,” (the vestibule is where the vulva meets with the vagina). Individuals with vestibulodynia often experience pain during intercourse, inserting a tampon, etc.
The updated 2015 definition is less one-size-fits-all, and the subtypes, now called descriptors, have been expanded upon to include specifics of where, how often, what brings on the pain, etc.
What does vulvodynia feel like? It seems to vary for each person, but it’s often described as a burning, stinging, irritation, or rawness, which varies from mild to severe. Personally I’ve experienced the whole gambit of sensations depending on the day, and my symptoms tend to be more painful on days where Fred is making me feel sick.
Lastly, it’s worth noting that as unfortunate as it is to have vulvodynia, nothing you did caused it. It’s not an STD, and it can’t be passed along to other people.
…Are there other causes of vulva pain?
You betcha! There’s plenty of causes, and if you check out my nifty “Classification of Persistent Vulvar Pain and Vulvodynia” chart I picked up from the Journal of Lower Genital Tract Disease (what a terrible name for a journal, right?) you’ll see the general categories listed at the top. If you’re really lucky, like me, you might even get to have vulvodynia AND a specific vulvar pain disorder.
While I honestly don’t know enough about all the different causes of vulvar pain to tell you about them, the specific condition I have is Lichen Simplex. There are three types of lichen (lichen simplex, lichen sclerosus, and lichen planus) but it’s basically inflammatory condition of the skin and mucous membranes. The only thing you really need to know about lichen is that while it’s treatable (although it doesn’t always go into remission), it’s important to have it treated to avoid potentially serious long-term side effects.
Statistically there’s a lot of you vulva-owners out there who’ve been where I’ve been, and there’s inevitably going to be lots more. I can tell you that having any kind of vulva pain truly sucks— there’s really no good way to spin it to make it sound like a good thing—but if you advocate for yourself and find the right doctor, things can get better.
I can appreciate all the uber-positive and inspirational things most bloggers with chronic illnesses say, but it’s not really my style. Yet I think it’s important (with anything in life IMO) when things are bad to find a way to feel hopeful that things will get better.
For those suffering with vulva pain, I can’t tell you that it will definitely get better or go away, but I do know there are a lot of potential treatments out there. It’s crucial that you be your own advocate and stand up for yourself and what you deserve, and to find someone who will give you the help you need. Most importantly, never allow embarrassment about something you have no control over stop you from seeking out medical treatment.
**Although I researched thoroughly and linked to reputable sources, I am not a doctor, nor do I have any medical training.