Table of Contents
This post is a part of the “Vulvodynia Causes 101” series:
- Part 1 (this article) – 4 Reasons Why You Might Never Find Your Vulvodynia Cause
- Part 2 – 6 Major Vulvodynia Causes You Need to Know
- Part 3, 4, & 5 – Upcoming
Vulvodynia is complicated.
Vulvodynia is chronic pain in the vulva (the external part of your genitalia) that doesn’t have any known causes or visible abnormalities.
Vulvodynia simply means “painful vulva” (“-dynia” means pain).
A diagnosis of vulvodynia is a diagnosis of exclusion. All this means is that if doctors can’t find anything wrong with you — but you still complain of pain — they’ll put you into this “magical box” called vulvodynia. So in this sense, it’s an empty diagnosis. It doesn’t really say anything in terms of what’s causing your pain. It’s like being diagnosed with a headache after you complain about having pain in your head.
That said, the fact that your vulva appears normal doesn’t mean that there’s no cause for your discomfort. It just hasn’t been identified by the doctors yet.
There are several issues regarding the possible causes of vulvodynia that you might stumble upon as you navigate your vulvodynia journey.
#1 Confusing Terminology
(Causes vs. potential factors and vulvar pain vs. vulvodynia)
If you’ve ever searched for vulvodynia triggers, you’ve probably ended up frustrated: vague info, scattered answers, and especially confusing terminology, etc.
Let me dig into the latter a bit more — to clear things up for the rest of this article.
If you get diagnosed with “regular” vulvar pain this means your case is simple, and your doctor knows the trigger behind your pain. In this case, this known and defined trigger is called A CAUSE. It can be anything from an infection to a trapped nerve.
If you get diagnosed with vulvodynia, by definition your doctor should have checked and ruled out all causes related to vulvar pain. In this case, your doctor doesn’t know the trigger behind your pain. But logically, the medical community acknowledges that there has to be a reason, and they call this unknown and undefined trigger A POTENTIAL FACTOR.
In the end, what really matters is that you find out what’s wrong and get it resolved. That’s why for the rest of this article (but also the entire website), I won’t make the distinction between POTENTIAL FACTORS vs CAUSES and will just call them all POSSIBLE CAUSES instead. I’ll use regular vulvar pain when talking about vulvar pain with known, defined causes, and vulvodynia when talking about chronic vulvar pain with unknown, undefined causes.
#2 The Nature of Causes
Each vulvodynia case is different and unique. The only thing that they all share in common is the fact that the pain happens in the vulva.
Vulvodynia is multifactorial, which means that there might be more than one possible cause of your pain. A possible cause can be direct and straightforward, like a trapped nerve. It can also be indirect and layered, where solving one problem reveals another lurking below, like when curing a recurrent yeast infection can reveal a pelvic muscle issue.
Vulvodynia is also multidimensional, which means it can affect different aspects of your life like emotional, physical, mental, etc. This also means that a possible cause of your vulvodynia can stem from one or more of these areas. Not only that, these causes are interrelated and fluid, so you may have a physical cause that can then transform into an emotional one, etc.
With this condition, any number and combination of causes is possible.
#3 A Problematic Diagnosis
Your journey to a diagnosis isn’t easy. You might come across tens of doctors, spend a boatload of money, and still wind up with nothing. You might be told that you’re making everything up (“It’s all in your head!”), that you should drink wine to loosen up, and that you should stop exaggerating.
And on top of all this, your life after a vulvodynia diagnosis can stay pretty much the same or even get worse (in terms of helping you clarify the cause of your pain).
Let me explain why:
#3.1 A vulvodynia diagnosis doesn’t come with a cause of pain (nor solution)
A vulvodynia diagnosis is useless when it comes to defining the possible cause of your pain.
I call it an act of acknowledgment. Without a name for your condition, most people misjudge you for being crazy. With the name, however, you’re at least treated like a normal human being.
#3.2 A vulvodynia diagnosis can kill hope when researching
A vulvodynia diagnosis means there’s no identified cause for your pain and medicine is useless. So instead of bringing you clarity and hope that a solution might be around the corner as you do your research, it can do quite the opposite — breaking you down and leaving you feeling doomed.
#3.3 A vulvodynia diagnosis reduces possible causes considered
Many vulvodynia warriors get prematurely diagnosed with vulvodynia. This happens because of doctors’ lack of knowledge, mistakes (they’re human after all), arrogance (they need to have the last word) and apathy (they want to get rid of complicated cases). When this happens, all the possible causes of regular vulvar pain and the solutions linked to them are automatically discarded. So unless your doctor really checked everything, there might be lots of possible causes you’re missing out on.
This might hurt your own future search by narrowing your results. For example, if you search for vulvodynia causes, you won’t come across possible causes that are only related to regular vulvar pain.
This might also influence your future doctors. They might assume that your diagnosis means that you’ve been checked for everything even if this isn’t the case at all.
#4 Issues With Resources
There are also major issues with the resources that you’ll be able to find on possible causes:
- Low Quality – resources are often not detailed enough, not practical, and most are copycats of each other
- Scattered – there are random articles all over the place and you won’t find any major resources
- Little – compared to other conditions, you really won’t find much online
- Non-accessible – you may find hard-to-understand research papers with medical jargon (that are targeted to other researchers) and many are behind paywalls
In creating this series, I’ve taken into account all of the problems I outlined above. In doing so, I’ve included not only possible vulvodynia causes but also possible vulvar pain causes as this topic is still largely unexplored territory, with lots of errors and mix-ups.
Starting in part 2, you’ll find a general overview of the possible causes of vulvodynia. It’s not an exhaustive one but for sure way more in depth than anything else you’ll find out there.
Some information will be familiar while others will be brand new to you. I’ve included everything I’ve seen, heard and gathered over the 16 years that I suffered from vulvodynia and the 4 years since I’ve healed. During this time, I was repeatedly forced to use my research and analytical skills to connect the dots as my doctors were clueless. I know that a lot of my fellow vulvodynia warriors are doing the same — because the possible causes have simply not been well defined yet.
Some Last Words
A vulvodynia diagnosis is not your destination, it’s the beginning of your new (and sometimes complicated) journey. Every vulvodynia has a cause. Your vulvodynia has a cause. You just need to find it.
What has your experience been like in finding the causes of your vulvodynia? Have you come across other issues during your research?
Please bear in mind, that this article should not be used as a substitute for the knowledge and expertise of a doctor or other licensed healthcare professionals.
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