Today’s topic is an important one. Ok, true, I think all pelvic floor topics are important, but this one has a special place in my pelvic-floor-loving heart. The topic? Vulvodynia.
The outer part of female genitals is an area called the vulva. Just like anywhere in the body, the vulva can be an area of pain. Pain in and around the vulva can occur for many different reasons: infection, trauma, inflammation… However, sometimes, there is no specific known cause. As with many areas of women’s healthcare, we need more research. When the medical community can’t identify a specific cause for vulvar pain, and the pain lasts more than 3 months, we call the pain vulvodynia. Common concerns with vulvodynia include pain with sitting and wearing tight clothing and can make experiences like vaginal exams at the gynecologist or having sex unbearable.
Vulvodynia understandably has significant impacts on individuals’ quality of life. The pain can be severe and can impact both our identities and our closest relationships. To add insult to injury, not having clear answers for what is causing the pain and what the next steps should be can be extremely frustrating to put it mildly. What’s worse, many individuals feel as though they can’t discuss their experience with vulvodynia because the painful area in question is, well, the vulva. All of this can make vulvodynia a painful, isolating, and terrifying journey.
The good news? It doesn’t have to be this way. There are steps we can take and tools we can use to give individuals a clearer path forward in addressing vulvodynia with increased respect and autonomy along the way.
So let’s take a step back and give a quick overview of vulvodynia. First and foremost it is important to know that vulvodynia is not the same for everyone. The type of pain can vary from sharp to raw to a deep ache. Some will notice slight swelling in the tissue of the vulva while most will notice no visible changes at all. Some will have pain around the entire vulva (which we call generalized vulvodynia). Others will have pain only in a very specific area (which we call localized vulvodynia). Beyond making sure that there are no missed causes of the pain such as an infection, it is incredibly important to see a qualified provider so that the drivers of *your* vulvodynia can be identified. Factors such as hormones, allergies, nerve injuries or compression, and the pelvic floor muscles can all be important components of your own unique vulvodynia experience. Knowing which factors are contributing to your pain is critical for getting the entire system functioning properly again pain free.
It is also critical to address any mental health concerns often tied to vulvodynia. Those with depression, anxiety or PTSD have a 50% higher chance of having vulvodynia. This relationship goes both ways and does NOT suggest that vulvodynia is “all in your head”. Our bodies love us. They want to protect us. However, they often don’t know the best way of helping. Our bodies often try tightening the muscles and tissue in an area to see if this helps anything we’re struggling with (spoiler alert, it *shockingly* doesn’t help) and this can create very real pain and very real dysfunction. Additionally, it is no surprise that chronic pain can create it’s own mental health challenges. What often occurs is a not-so-fun feedback loop of guarding, pain, stress, guarding, pain, stress… With all of this in mind, working with a mental healthcare provider can be a critical step throughout your vulvodynia journey.
Another incredibly helpful step for most everyone with vulvodynia is seeing a Pelvic Floor Physical Therapist (PFPT). Even if the pelvic floor is not THE driver of your symptoms (and it often is!), the muscles and tissue around any area of pain tend to dysfunction and “lock-up” as the body tries to protect a painful area as we mentioned above. The vulva is no exception. This locking-up of the pelvic floor can exacerbate the pain and create a vicious cycle of pain and tightening. Working with a PFPT can be incredibly helpful in breaking this cycle and letting the tissues around your vulva breathe again and teaching the multiple systems of our body how to work as a team without overloading one area (namely the pelvic floor!).
Addressing vulvodynia is not a quick fix. It’s a journey. Having tools to address pelvic floor tightness and dysfunction at home can both speed up your journey to being pain-free and can be invaluable in maintaining the health of this system long term. Additionally, it can be easy to feel that you are losing autonomy and independence when you’ve been wrapped up as a patient in the medical world for a long time. By the time many individuals get a diagnosis of vulvodynia, they’ve been shuffled around the healthcare world for quite some time. Having very real strategies to help your own pelvic floor and work towards resolving vulvodynia yourself can feel like a breath of fresh air.
The most frequent tools we recommend are vaginal dilators and pelvic wands. They are designed to safely stretch the vulvar tissue and pelvic floor muscles to allow for proper function of the entire system. They can give space to any nerves that may be compressed and help the tissue get accustomed to safe and gentle touch without spasming and causing further pain. When combined with the Pelvic Floor PT and mental health steps we mentioned above, these tools are absolutely amazing resources.
If you have fears of starting use with dilators or pelvic wands, speak with your provider (if we’re being honest, the thought of using anything internally can often be understandably terrifying when you’ve been dealing with vulvodynia!). However there are safe and gradual steps you can take to ease into use and they can be surprisingly simple to use. Respect what you are feeling, tune into your body, and go slow. Use a support team consisting of your healthcare providers and your circle of loved ones. Lastly, remind yourself that: A) you are more than your vulva, and B) vulvodynia can be addressed. You’ve got this and we’re here for you.