Miriam Provenzano

Psychotherapist & Life Coach For Women With Vulvodynia, Chronic Pain

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Vulvodynia Is Ruining My Life: What To Do About It

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If you are here, I assume you’re struggling with Vulvodynia, it is ruining your life and don’t know what else to do. You’ve probably had countless doctor’s appointments, seen a variety of specialists, maybe tried acupuncture, numbing cream, antidepressants, anticonvulsant drugs, physical therapy, psychological therapy, maybe energetic healing. You may start to feel helpless living in pain, and that is completely natural when we cannot find answers or relief, you feel that Vulvodynia is ruining your life, and all you can do is continuously look for answers online as you aren’t getting enough from the professionals you’ve seen so far.

I know the struggle very well. I spent countless hours reading online people’s experiences, researching what it is that happens in our bodies for this pain to happen, and tried every treatment I could come across. Not only did none of this help, but it also gave me crippling anxiety. I read about cases of women who had it for years, women that had to stop working because of it, and every bad story that just kept messing with my mental health more and more. As a start, I’d like to say to you: don’t continue looking for hope on forums. If you find good platforms, yes, that’s great! Unfortunately, I have to tell you what you will find is going to be very little hopeful, because it is biased. The bad will override the good.

Going back to tell your story, even if it’s a happy ending one, can be very vulnerable

When women heal, they want to leave this chapter of their lives in the past. They don’t go back online and tell their success story, at least not in most cases. So you will find much more negative information than positive. This will affect how you feel, it will cause more anxiety, it will make you obsess more over it and as a result, make the pain worse. Now you are reading this, so please make this your last stop. Yes, you can heal, yes many of us have. No, not all of us go back and tell our story, and I include myself in it for some time. And why? Well, the pain in itself is traumatic. The place it may stem from is traumatic (at least in my case it was very related to sexual abuse), but healing from vulvodynia in itself, is traumatic too. You encounter multiple specialists that don’t know what happens to you, they don’t even know the name of it. I kept going from one doctor to another, to all alternative therapists I could find, to psychotherapists, physical therapists… At some point, I was so tired of telling my story over and over to find no answers, that I felt I couldn’t do it anymore. Eventually, I started crying every time I went into a new specialist’s office. I couldn’t gather the strength to keep telling anyone about my pain just to be given a variety of useless “solutions”, if any at all. Finding hope in this was extremely difficult.

“Feeling this isolated in my pain without answers, broke me down even more”

It felt like there was a huge burden on me, not letting me breathe. I dreamt of the pain, no matter what I did during the day, I kept feeling the pain, I missed out on meeting with friends because of it… I stopped my whole life and it was me and the pain in a dark hole. It was horrible, lonely, painful, heartbreaking. Vulvodynia literally was literally ruining my life, and I was only in my early-mid 20s. So when I started to improve and when I eventually healed… I didn’t want to look back. I didn’t want to live over all of that. I didn’t want to hear the word Vulvodynia ever again. And this is the case for many, many women. When we heal, we are SO done with it, that we just want to forget about it. Not out of a place of selfishness, it is not that we don’t want to bring hope to others, it is just that we are exhausted mentally and physically from it.

I wanted to help others heal from Vulvodynia, but then…

It is “funny” because when I had my pain I was a psychology student, and I thought I would heal from it and then help others out of it. But there was an impasse of time, where I was almost fully healed, where I didn’t want to hear about vulvodynia anymore. It had been such a long journey, and I couldn’t see myself poking that wound anymore. I was still vulnerable, it had been a lot of work, I was sensitive, and still very wounded only from the healing journey alone. I thought vulvodynia was a chapter of my life I didn’t want to remember ever again. I wanted to leave those memories buried as far as possible from it. While through my own healing I knew I wanted to work with a mind-body approach in psychotherapy, I couldn’t bring myself to look at the V word anymore. But, once I was already more stable and I could look back, I could see all the pain and despair I felt, and I knew there were more women who needed answers.

It wasn’t easy to get into this work, and sometimes it still stirs things in me

I was still hesitant when I signed up to work with some of the specialists that contributed to my healing, and to this day, things still stir up inside of me when I speak about it. But I know that through this work, I can bring the solutions I wish I had more readily available. So I learned everything I could – and I am still in constant learning, training, and expanding my knowledge – to bring the answers it took me years to find. I love psychology and somatic work, however, it was not enough to address everything that is needed to heal from vulvodynia. There are bits of it that I really enjoy, other ones that are not so enjoyable. While the good overrides the downside, through my clients I remember all too well my own struggle… and it still feels tender. Even writing about it, still takes me back to days spent in bed and completely misunderstood, it is not pleasant, but I shared my story because I decided to take this as part of my purpose and apply it to my work. Otherwise, I probably wouldn’t go into this much detail, if any at all. But because I decided to continue with my mission on helping others and I made this part of my work, now I speak so much more about vulvas and Vulvodynia, but the truth is, that if I had been an accountant, or a baker, or something else that has nothing to do with health… I probably wouldn’t be speaking about Vulvodynia. Maybe AT ALL. Because it’s painful. Because we all wanna forget about it. Because it’s daunting. Because it took so many years of my youth and vitality away.

What you’ll find in forums, is much more pain than hope

So please hear me in this, don’t think everything you see online is an accurate depiction of the numbers of people who healed. It is just that most women, once they do, they never look back. They want to forget how traumatic this all has been and I cannot blame them for it. But I don’t want you to look at all the stories and think that this will be the rest of your life. It doesn’t have to be. With all the sorrow of my heart, that is someone’s situation, but we cannot tell ourselves we are doomed, or else our brain will pick up on it.

Our body is listening to our beliefs, allow it to believe it can heal

Our nervous system and body are always eavesdropping on our beliefs. If you believe you cannot heal you most likely won’t. If you believe your body can heal, it will. And yes, I know the amount of doubt you carry with you right now. I did too! I know the hesitation, the “ I have had this for too long, how will it go away”, or the “I haven’t found anything that truly helps yet”… but that is just a “yet”. I clang onto hope like grasping for straws. For as little as it could be, I kept it with me. I kept going and even though I tried to make peace with the situation, I didn’t resign myself to it. Making peace doesn’t mean giving up, it just means letting go of resistance. So the number one advice I would give to anyone going through pain right now is don’t compare your experience to others. As Sean Stephenson said: “Never believe a prediction that doesn’t empower you.”

Don’t obsess over the pain fluctuations

If you are going to take other people’s experiences as your prognostic, take one of those who have healed. Tell your mind, your body, and your spirit, that you are healing. That others have done it before you, and therefore you can too. Stop being hypervigilant about Vulvodynia. Some days will be better, some days will be worse. Even if you have a flare it doesn’t mean it’s gonna stay worse. It will come back to the “baseline” pain. And eventually, it will get better too. The more you obsess over the pain, the more you’re feeding it. While stopping to think about it is difficult, don’t do it more than you should. You don’t need countless hours in front of the computer reading about it.You don’t need to constantly gaze at your vulva unless it is to tell it how beautiful it is. You don’t need to worry you will do something “you shouldn’t” and make it worse. Do what’s on your hands to reduce the amount of attention you give it, so your mind has other things to entertain and gives you more of those, instead of the one (the V) that you’re focused on.

Long story short, in order to re-train yourself to not feel pain, minimize the actions that feed it. While it is difficult to stop thinking about it, you can choose to watch a comedy instead of reading people’s experiences for hours before bed. Increase the joy and decrease the amount of time you dedicate to your Vulvodynia. Your vulva will thank you 🙂

Does Vulvodynia Go Away Permanently Or Does It Come And Go?

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Vulvodynia is an alarm from the body, a sign something needs to be addressed. Once the fire is extinguished, vulvodynia can go away for good. In the search of a cure for vulvodynia and going from specialist to specialist, we often hear that there is “no cure”: But let’s clarify that. When in Western Medicine we speak of a lack of cure, it means there isn’t a remedy that can be given to you to “fix” the problem. However, we just need to change the approach on how we understand health and the body, because vulvodynia is not an illness to be cured, vulvodynia is a symptom. For this reason, when the underlying causes are solved, vulvodynia can go away permanently. Vulvodynia simply means “vulvar pain”, however, in order to release the symptom, we need to address the underlying causes. While I cannot speak for your specific case or illnesses that may be causing it, there are generally some underlying factors that are at the root of that pain. For this reason, we don’t “cure” vulvodynia, what we do is bring the body back to health, so it can heal itself. So if we heal our body, the alarm doesn’t need to go off anymore, and vulvodynia can leave to never come back. Yes, it may be a more sensitive area for you, women with vulvodynia tend to have pretty sensitive skin in general, however, there is no need to have this pain once the body is in balance.

Vulvodynia can go away permanently

Our bodies are prepared for healing, they do that with acute wounds all the time. When it comes to chronic conditions, there are several aspects that need to be addressed, but under the right conditions, the body has the innate ability to heal. I am going to share with you some of the main systems to address in order to bring the body back to homeostasis (balance). This is what I did, and this is how I healed, by going deep into the root, my body could flourish.

 

Pain Is Created in the Brain

Pain is created in the brain, so the nervous system is a big piece of the equation to be able to heal. We need to create a parasympathetic state (rest, digest, and repair) to have an environment where healing can happen. As you see, this (apparently) has nothing to do with the vulva directly, and that’s why many treatments oriented to just treating the pelvic floor region, aren’t sufficient. However, if there is no organic disease that explains the pain, we need to look beyond. So even though the pain is felt “down there”, we first need to dig “up there” to fully address the pain.

On one hand, when there is dysregulation of the nervous system, it is difficult to regulate it “cognitively”, we need to address the body in order for the nervous system to calm down. We need to work with a somatic approach to release the emotions stored in the body and facilitate the improvement of the nervous system. On the other hand, it is also important to address the psychological underlying causes, as psychosocial challenges are a very significant finding among women with vulvodynia. While there are many cases of sexual trauma, or shame around sexuality, it won’t always necessarily be like that. Women tend to store a lot of their fear in their pelvic floor, so even if it is not related to sexuality, your emotions trapped in the body are dysregulating your nervous system. It is a little more complex than this, however, to not get into deep details on the neuroendocrinology of it, just know that it is very likely that work at an emotional level needs to be done. Many times, this includes addressing your surroundings, your beliefs, the interactions with the people around you, your ability to set boundaries, the relationships that serve you or that drain you in your life. After all, you cannot heal in the same environment that made you sick. Vulvodynia could come and go if you don’t make the necessary changes it is pointing you to do, that’s why I don’t “cure” the pain but approach the person as a whole: so you can fully heal, not only your body, but everything around you.

 

Proprioception: muscles, fascia, and brain

To contribute to this regulation of the body, it is very important to address proprioception, so basically how your body senses itself. While myofascial work also helps to improve biomechanics (we will see more on this later), it is important to know that the proprioceptive signals (that inform the brain about the body’s movement and position) travel through the same pathways as the nociceptive (pain) signals. When we increase proprioception, we override nociception, therefore we help tone down the pain signal.

While there are several ways to increase proprioception, I have found that myofascial release is a very useful one because it attunes us to our body, helps our nervous system rewire, and at the same time, it liberates tension from the body. Many things we do daily, increase tension patterns in the body: The way you sit, how much you sit, the way you move, how much you move, how you carry your body, your alignment… and all of this, which we do unknowingly, make a big difference in the amount of pressure that we hold into our bodies, into our pelvic area, and therefore, the pressure that will go onto our pelvic organs – which at the same time, create more pressure on the nerves. When we release some of the tension, our body can move more freely. They can work better and receive the nutrients that they need, which in result affects pain levels.

 

Biomechanics: How we use our body

In general, we tend to have poor posture and movement, we don’t tend to walk or sit in the optimal positions, nor do we move as much as we would need, but that’s not all. While our mostly sedentary lifestyle or being on our feet for hours affects our bodies, this is also tied to what I was mentioning before with the emotions. When there’s fear, and most chronic pain sufferers feel a level of unsafety, whether they are aware of it or not, that tends to go into the pelvis, so even if we address the posture and relief tension, but don’t address those underlying feelings, the tension patterns will come up over and over.

Now, while a lot of tension patterns can be due to habit or due to psychological causes — like hunching forward as a way to “protect” ourselves, or having shallow breath which affects our sympathetic nervous system + we don’t move our breathing diaphragm which impacts our pelvic diaphragm + as a result our lymphatic system gets overburdened, this is not to say we cannot learn to adopt better postures. The better we work our body, the more we can transform the inputs being sent to the brain. For example, when we start breathing properly and expanding our ribcage, we enter a more parasympathetic state, which decreases our anxiety. And of course, at the same time, the safer we feel, the more likely it is we will carry ourselves in a more confident way. All of this, in turn, will change how much pressure is being put into our pelvic organs.

 

Lymphatic system: missing link to addressing inflammation

While the way we carry our bodies affects our pain levels, this is not the only piece we need to take into account for our body’s healing. Many times, inflammation in the body can be caused due to an overburden of toxins. Why does this happen? Well, while we are getting toxins and waste from the environment, from the foods we eat, from our own cellular waste… one of the main issues is that the system that takes care of draining all of this, doesn’t necessarily work optimally for many of us. Let me introduce you to the lymphatic system. The lymphatic system is the sewage system of the body and removes bacteria, viruses, fungi, parasites and toxins. It is a part of the immune system as it sucks in pathogens and fights them with natural killer cells. We have lymph nodes all over our bodies except for our nails and hair. Our lymphatic system doesn’t have its own pumping/filtering system, so it heavily relies on moving the body naturally in order to rejuvenate and revitalize our whole being. This is why movement and breathwork are very important tools to incorporate into your daily self-care practices, and why breathing optimally is necessary. Our diaphragm pumps the cisterna chilly which is the major lymph node in the body, crucial for a healthy lymphatic system. Some of you may have never heard of this system, so I will do a quick breakdown on what is made up of:

 

Lymphatic vessels, which carry lymph (fluid) and white cells.

Lymph nodes are concentrations of nodes in the body that fight pathogens (bacteria/viruses.)

Lymphocytes are the cells of the lymphatic system that fight the pathogens.

Spleen produces lymphocytes and filters blood.

Thymus is where the maturation of T cells occurs.

Bone marrow is where the maturation of B cells takes place.

Tonsils, adenoids, appendix, and Peyer’s patches (intestines)

How is the modern world affecting our Lymphatic system negatively? First of all lets remember the lymphatic system is the sewerage system of the body; what our body produces to carry out the waste. However, unlike the vascular system, which pumps the blood to the heart, the lymphatic system does not have its own pump, so therefore we need to take control and do it ourselves.

The main things that affect our lymphatic system are not breathing deeply into our diaphragm, so what we need to explore is learning diaphragmatic breathing and making sure we are practicing this daily; so it can become an unconscious habit and new way of life. We can do this by putting our hands on our ribs so we can physically feel our ribcage expanding by our breath. Humans are usually operating from a shallow breath, so it is so important that we consciously check in with bodies and ourselves. This gives us time to pause, allowing us to be in the present moment by breathing deeply and re-center our being. Diaphragmatic breathing can be an incredibly grounding, peaceful experience and is a vital part of healing.

We spend a lot of time sitting and living inactive lifestyles so movement is very important. Looking back into our past evolution of being human we were designed to walk and survive; this was our purpose and lymphatic problems did not exist. However, because we are not moving a lot due to our jobs and lifestyle our lymphatic circulation doesn’t flow effortlessly which is an issue.

Toxins and chemicals are a lot more common today due to the pollution in our environment, due to synthetic substances. Which can overburden the lymphatic system, especially the liver.

Unhealthy diet (processed foods) creates more stress and toxins in our body. Organic foods would be ideal as they contain fewer toxins and grown in a better natural environment; (soil and air quality.) However, it is not always affordable, and even if some foods claim to be organic, we often don’t know if that’s true — and pollution is still affecting the air quality even if farmers do everything in their hands to avoid toxins in our food.

Digestive imbalances affect the lymphatic system as they work closely together, basically hand in hand if one isn’t working properly then the other system will be affected.

Stress creates stagnation in our bodies at a physical, emotional, and energetic level. This can affect pain.

Dehydration people may not be drinking as much water as they need. This helps flush our the “bad stuff” out of the body, but not only it’s about the quantity but about the quality too. A lot of the water we drink is not ideal and can create “further damage”. This is not to freak you out, but do be mindful of the water you consume. If you have access to Kangen water that’s ideal, however if that’s not possible, use filtered water and just add a few drops of fulvic acid to it to structure it.

“Cells are as healthy as the environment they live in.”

The lymph is responsible and determines this. The healthy cell will not let toxins trespass. The good nutrients stays and the toxins are rejected. Whereas with unhealthy cells, the toxins stay stuck unable to be released, therefore the healthy nutrients cannot be received.

The lymphatic system needs two things, Oxygen and Nutrients. Once the toxicity has been built up in our bodies we need to drain it before we can add the nutrients back in, otherwise it won’t make any difference. So, what causes disease? Two main things, Toxicity and Deficiency. If there is a toxic build up, we are clear that this is not good for our bodies, moreover, the inflammation compresses the nerve causing pain. But if our bodies cannot access oxygen and nutrients, that causes illness too. So when there is constriction, the tissue is not receiving everything it needs in order to be healthy, that’s why in many women with vulvodynia, we find thinning of the vulvar tissue. In order for this tissue to repair, there needs to be irrigation, and for this, first we need to release the built up toxic load.

 

The Lymphatic System and Digestive System go hand in hand

It is very important to keep these 2 things in mind because sometimes we may be taking great (and pricy!) supplements, but it feels like it’s not making a difference. Your body may not be able to use it because there’s a build up of waste that is not enabling the nutrients to be absorbed. The Lymphatic System and the Digestive system are very tightly linked, so if there is a lymphatic system problem, there is a digestive system problem, and viceversa. Therefore, we need to get rid of the “bad” stuff before we can put the good stuff in.

You can imagine a dirty aquarium, where fishes are becoming ill. It doesn’t matter if you give the fish all the “organic food fish” in the market (I am not even sure if there’s organic food for fishes, but you get my point!), the fish will still be ill because of all the dirt. Therefore we need to clean the aquarium, and when we feed the fish, it will thrive. For this reason, we say that “drainage precedes supply”.

Now, how do we know if we have a lymphatic system problem? It is actually quite common to have a backed up lymphatic system as chemicals, toxins surround us and there is pollution in our everyday lives, but I’ll share some of the most common symptoms.

  • Morning stiffness
  • Bloating or swelling (face, belly, extremities)
  • Painful or tender lymph nodes which appear swollen
  • Chronic pain (vulvodynia swelling lymph nodes in the groin area.)
  • Lack of energy/chronic fatigue
  • Skin issues
  • Poor sleep
  • Inability to lose weight
  • Delayed onset allergies
  • Easy bruising
  • Red/grey eyes
  • Low mineral absorption
  • Digestive problems
  • Bad breath even when you brush your teeth
  • Sore breasts and swelling during the menstrual cycle ( psst massaging the breasts to keep everything flowing would be beneficial)
  • Common colds
  • Ear and respiratory infections
  • Sinusitis
  • Generalized joint pain/ chronically swollen joints
  • Toxic conditions associated with the bowel
  • Unresolved trauma which is slow to heal
  • Tissue which is tender to the touch
  • Tonsillitis
  • Nerve pain
  • Brain fog/headaches

The lymphatic system is not only a “physical” issue though,  it accumulates physical and chemical toxins, yes, but it’s also a dump spot for emotional toxins. The cisterna chyli is the biggest lymph node of the body, located a couple of inches below the sternum and a major emotional spot of the body. A lot of emotions get stored there such as anger, rage and grief. Once we start working on this area, a lot of things may come up and old emotions can resurface; depending on how attuned you are to your body. This can be confronting if we have spent a lot of time dissociating from our emotions and bodies.

 

The Emotional Patterns and Wounds

The umbilicus is not only a portal to access our gut-associated-lymphoid-tissue, but it is also strongly linked to worthiness, as it is how we got our needs met whilst in the womb. But life happens and sometimes our needs are not met which can create a lack of safety, trauma in the body and a dysregulated nervous system. We may deal with this through coping mechanisms such as self-denial (not being aware of your own needs), deviance (wanting to feed your needs in any way, such as over-eating) and self-reliance (not asking for help to not be let down).

This difficulty to recognize our own needs, or the inability to meet them, can lead to people-pleasing tendencies, which often plays against us. These wounds throw the system off, directly affecting our neuroendocrine system. Often, illnesses that occur in the body without a clear external agent, are correlated to a lack of balance in the body. Our neuroendocrine system is overworked, and mechanisms that are very helpful for our survival and in case of acute illness, they start to play against us overtime. For this reason, when we suffer from vulvodynia we don’t want to only focus on the pelvic floor, but we aim to bring homeostasis into our systems so our whole body can improve. And, as a result, the pain can go away.

Everything Works Together, Mind & Body are One

As we see, nothing in the body is truly isolated. All systems work together and that’s why for a long-term, sustainable healing, we need to approach the body as a whole ecosystem. No system in the body works alone, gets injured alone, or heals alone, and this is why we can fall short when we focus only on the symptom (vulvar pain) and tackle only this area. Our bodies know how to heal when they have the right conditions. Of course, we don’t live in an ideal world, and sometimes we need to work with what we have, but ideally, we can provide the best situation possible for your mind and body to enter the repair mode. I help women heal from this by approaching psychology, nervous system, sexuality, biomechanics, inflammation, and endocrinology (balancing hormones).

Don’t Go After the Pain, Tackle the Root

In short, does vulvodynia go away? Yes, if we address the root cause, improving the whole body health, instead of going after the pain. When pain starts, it means other systems aren’t working properly either, whether we can see it or not. Once the pain starts, it just means that the body has been in survival mode for so long, that it can no longer repair itself, and therefore, it “sacrifices” some of the lesser needed systems, in order to continue protecting the most important ones (such as the heart, the brain, the lungs..). While vulvodynia can be primed by sexual trauma, it is not always the case. However, whether there is that component or not, in all cases we want to restore the safety in your nervous system so your body can continue to repair itself, and we can nurture it in ways that will boost your health and your own inner healing.

What can you do from here?

I hope this helps you gain more clarity on what happens in the body and why it is important to have a multifocal approach to heal from vulvodynia. If it is something that is in alignment for you and that you find interesting, you can book a discovery call with me. Whatever your next steps are, I am wishing you lots of love and healing.

Kindly, Miriam

You Aren’t Alone: Celebrities With Vulvodynia Suffer Too

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When we think of celebrities we don’t think of celebrities with Vulvodynia. We think of glamour, luxury, and fame, but celebrities are human beings too. They can fall sick, experience chronic pain, and have terminal illnesses. Sadly, sometimes the only time we hear a public figure had a severe illness, is when they pass away like it was the case of celebrity Chadwick Boseman who battled cancer in silence for four years. While there are many reasons why they may choose not to share it publicly, it is important to know that we are not alone in any battle, whether we know it or not. While it is to be respected that they want to have their privacy, I think that when they have the occasion to speak on what they are going through, it really helps normalize health and mental health challenges.

I am sure that more than one well-known celebrity suffers from Vulvodynia, though I have only found one in my research, however, we are still on the way to not only normalizing speaking about pain, but especially in an area that can be so difficult to discuss publicly.

 

We Need To Normalize Talking About Vulvodynia

I think we are headed in the right direction in normalizing speaking about it though, as some public figures are using their voice to bring awareness to some health conditions. Lady Gaga has brought a lot of visibility to chronic pain through sharing her own struggle with fibromyalgia, while other actors have spoken on it, she is shedding much more light on it than anyone did before by showing the ups and downs of her fight. We have also heard about Selena Gomez’s battle with lupus, including needing a kidney transplant. When they speak about conditions that aren’t that well-known or that have a lot of stigma around it, they are helping other sufferers be more understood. Of course, sometimes using their platform is not always possible, when you struggle with your health, you need to tend to yourself first, but I for one appreciate when in better times, they open up about it and pave the way for others to talk about it.

While Vulvodynia has an extra stigma to it due to the body part affected, the actress Zosia Mamet spoke about her experience with Pelvic Floor Pain Dysfunction and visits to a variety of doctors in her monologue in 2017. She describes the level of discouragement she experienced trying to find answers for her vulvar pain, how she was led to believe it was all in her head, and explains some treatments that were offered to her that seem more of a medieval torture than a cure for such a sensitive area. Her description of the difficulties women encounter to be taken seriously and to find a diagnosis is painfully accurate for something that is meant to be funny (as it’s stand-up comedy), but a great way to start a conversation on this and educate people on what the average woman with pelvic pain goes through.

On the other hand, Vulvodynia was presented as a “depressed vagina” in Sex and The City, when Charlotte reports her symptoms to a gynecologist, but the reality on how they presented it couldn’t be further from the truth, which brings the wrong type of attention to this painful condition. The idea that a course of anti-depressants can cure this and that it is not a debilitating condition seems truly invalidating to the number of Vulvodynia sufferers who had to change their whole lifestyle due to the excruciating pain.

While they say that no attention is bad since at least the name “Vulvodynia” is being put out there, I find it would be useful to portray it how it actually is, so when we speak about it, we don’t get told we are exaggerating. You have probably had your very own first-hand experience being told that it can’t be that bad and that you just need to relax, it is very hard for people who do not suffer from it, to relate to this – or any – pain. This puts us in situations that are even more traumatizing (in case that living in chronic pain and the psycho-emotional causes that play a role in it weren’t enough!).

Now, we know that most likely, not even people in our circle are likely to go and read about this condition, but when people in the public eye speak about it, they are being educated through that. Yes, a lot of the people in our lives may learn more about a certain condition through a celebrity speaking about their own struggle, than by just seeing you suffering with it. People with influence can move masses and know how to speak to convey their message, whereas we are just left in pain and only trying to come up with more and more metaphors to share with those around us for them to empathize with what we’re feeling (so many of us had to come up with things like: feeling someone poured acid on the vulva, having an open wound, having a candent metal rod poking that area… to try for others to understand what it feels like). Unfortunately, many times they still won’t understand no matter how well we try to explain.

 

My Personal Story Of Trauma And Public Humiliation

Something that happened to me in university was that during a class we had a debate. While I enjoyed classes, participating, and debating, in this particular case we had a very limited amount of time to expose our arguments, which made me quite stressed out. That stress caused a bad flare. On top of that, I had my period. There was no way for me to sit straight due to pain, and I was tilting my body towards the side, in a very odd-looking hunch. I was feeling self-conscious and I didn’t want anyone – my classmates or the professor – to take that body position as a signal of lack of interest. For that reason, when it was my turn to intervene, I apologized for holding a weird body posture and briefly mentioned my “ovaries” were really hurting (thank God I didn’t say “vulva”! You’ll see later why). I thought that would be enough for them to understand the situation and I carried on with my argument for the debate.

I didn’t think too much about it after the class, and I went on with my day, only to find out that in our next class I would be pretty much publicly stoned. The professor brought up the subject that I said the word “ovaries” in public and how that wasn’t professional (oh the irony that now I openly speak about vulvas and vaginas as part of my profession :D), and she was presenting that to my classmates expecting their nods of agreement. All of them except for one girl went on to agree and discuss how horrible it is for me to say that. They kept talking about me as if I wasn’t there, and I felt extremely humiliated. I started to cry and I tried to explain my pelvic floor problem (wishing for this terminology not to offend them), and even though I did the best I could to explain the level of pain I was feeling during the debate, and at that moment in the class, not a single person cared about it. They only cared about what they thought to be “proper” words to say, and “improper” words. As if “ovaries” was a curse word and not a part of the female anatomy. Maybe I could have worded it better, but to me saying “period” or something like that, felt “worse” than saying a body part. I didn’t want to paint an image of something bloody for them. Maybe I could’ve skipped altogether saying anything, but I do not think explaining our pain is a bad thing at all. However, for them it was.

 

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Then, feeling attacked and crying in the class, I went to the bathroom to continue sobbing and holding myself, filled with hatred for people who instead of meeting me with care and empathy (and let’s remember they were in college for psychology just like me, you’d think empathy is a thing among them), just looked down on me. When I needed people the most, it’s when they turned their backs against me. I felt lonely, isolated, misunderstood, and in a lot of pain. Only one classmate dared to defend me saying she didn’t find it improper. And in the corridor, walking back from the bathroom, I found another girl who cared about what was going on when she saw me unwell. She listened and understood, and it was the only bit of hope I had at that moment. But the numbers were against me, the majority didn’t care AT ALL about how I was feeling, they were just getting off humiliating me, and sadly the professor had a major role in it. Yes, a psychologist preferred what she considered to be politically correct rather than understanding where I was coming from and helping me feel cared for in the middle of my despair.

I failed tremendously to convey to these people, and to others in my life, how horrible and despairing living with Vulvodynia – or any chronic illness – is. How do I wish that in that time, I could’ve played for them Zosia Mamet’s monologue so maybe they would’ve listened and understood it better coming from someone public. It’s like when a celebrity goes through it, it is more real than when it’s someone they know is going through it. They will many more times pity someone famous than offer to help someone they know going through the same thing.

 

My Solution To Changing The Way We Talk About Vulvodynia

Now, I am sure that this is not the case for everyone, and that there will be sufferers with a supportive family, friends, and close circles who care to listen to them and do their best to understand. That’s great and extremely helpful in the healing journey, however, it is not the norm. I had a few people close to me do their best to understand me, but not the majority. Most of us get tired of even speaking about it, even when we are unable to walk or do many other things because the pain is too strong. We give up because we know people won’t get it. They won’t care, it will be lost time and energy. So many times I’ve been mocked for my clothing choices and other things by my own family, not realizing I wasn’t able to wear any sort of pants or panties because the pain was excruciating. So I just sat with the hope that one day they would understand. I would never wish ill onto anyone, but sometimes I did wish that the people around me could experience my pain even if it was just for a few days. Just for them to understand what I was going through day in and day out.

Now I don’t need to have that fight with them anymore, I don’t need to wear skirts all year round, I don’t need to cry going to stores because there’s nothing that I can wear that will be warm enough, but I still see daily women who are misunderstood in their pain and it breaks my heart because I know so well the feeling of being isolated from others when nobody in your circle truly knows what it feels like.

For this reason, I speak about vulvas, vaginas, pain, and Vulvodynia as much as I like. Now that I have the strength, I will advocate for those who are going through it for them to be heard. But I cannot do it alone, and for this reason, I hope that soon more and more people – especially those with bigger platforms – will bring visibility to it. So every person living with this debilitating condition can be understood and taken seriously.

“Now that I have the strength, I will advocate for those who are going through it for them to be heard.”

You’re not alone in this fight, there are many women experiencing what you’re going through, and we hear you, understand you, and care for you.

I know how it feels and that’s why I decided to specialize in this, so I could bring the solutions that we aren’t often offered. There is hope, and if you’d like to know more about it, I would love for us to connect in a call.

Much love,
Miriam 🧡