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Vulvodynia: what it is, how it feels, and what you can do about it

Imagine a burning, stinging sensation at your vulva. Not occasionally, but again and again. During sex, while cycling, sometimes even when you are simply sitting. You have already been to your GP, perhaps even to a gynaecologist. But nobody finds anything. No infection, no inflammation, no explanation.

If this sounds familiar, you may have vulvodynia. A condition that affects an estimated 1 in 8 to 12 women, yet is still spoken about far too rarely. Not because it is uncommon, but because it is invisible. And because women's pain is still too often dismissed as something that is "all in the mind".

This article aims to change that. To explain what vulvodynia is, how it feels, what the possible causes are, and - most importantly - what you can do about it.

What is vulvodynia?

Vulvodynia literally means vulval pain. It is an umbrella term for chronic pain in the vulva that persists for more than three months, without a clear medical cause being found. No fungal infection, no STI, no skin condition. During examination, the doctor often sees little or nothing unusual, while the pain is very real.

The pain can manifest in different ways. Some women only feel it with touch or pressure - for example during sex or when inserting a tampon. Doctors call this provoked vulvodynia. Others experience pain throughout the day, even without any contact. This is called spontaneous or generalised vulvodynia.

Something important to understand: vulvodynia is not a psychological condition. The pain is not in your mind. It is a recognised medical condition that deserves to be taken seriously.

Does this sound familiar? Vulvodynia has no clear face. No visible wound, no rash, no infection. That makes it especially difficult to put into words, even to yourself. Women who have vulvodynia often describe their experiences in very similar ways. Perhaps you recognise one of these situations:

It burns during sex, even when I am aroused and genuinely want to be intimate.

I have already had three tests for a fungal infection, but nothing has ever been found.

Simply sitting on a hard chair is painful. Cycling is completely out of the question.

At the gynaecologist, everything looked normal. She did not know what to say.

I go along with it, but I grit my teeth. Afterwards I sometimes cry from the pain.

I do not dare tell anyone. It sounds so strange.

I thought I was just too tense. Or not relaxing properly. Or that it was something I was doing wrong.

If one or more of these sentences feels like your own thought: this article is for you.

Vulvodynia, vestibulodynia, vaginismus, and dyspareunia: what is the difference?

When you start searching for information about pain during sex, you quickly encounter a tangle of terms. Vulvodynia, vestibulodynia, vaginismus, dyspareunia... It can seem as though every doctor uses a different name. Let us bring some clarity.

Vulvodynia is the overarching term for chronic vulval pain without an identifiable cause. It can affect the entire vulva or only part of it.

Vestibulodynia is a specific form of vulvodynia in which the pain is concentrated around the vestibule: the entrance to the vagina, the area between the inner labia. This is the most common form. It was previously known as vulvar vestibulitis syndrome.

Vaginismus is something different. Here, the muscles around the vagina contract involuntarily in response to (or in anticipation of) penetration. This makes penetration difficult or impossible. Vaginismus is about muscles that go into spasm, not about hypersensitive skin or nerves.

Dyspareunia is simply the medical term for pain during sex. It is a symptom, not a diagnosis. Both vulvodynia and vaginismus can cause dyspareunia.

The complicating factor is that these conditions can occur together. Approximately 9 in 10 women with vulvodynia also develop vaginismus. Understandable, really: if touch causes pain, the body protects itself by tensing the muscles.

Name What is it? Where is the pain? Key characteristic
Vulvodynia Chronic pain in the vulva without an identifiable cause The entire vulva or part of it Pain lasting more than 3 months; nothing visible during examination
Vestibulodynia Specific form of vulvodynia; most common type The vestibule: the entrance to the vagina Pain triggered by touch or pressure, e.g. during sex or when inserting a tampon
Vaginismus Involuntary muscle spasm around the vagina The pelvic floor muscles Penetration is difficult or impossible; muscles contract as a protective response
Dyspareunia Pain during sex Variable; depending on the underlying cause A symptom, not a diagnosis; can be caused by all of the above

Symptoms of vulvodynia

Women with vulvodynia describe the pain in very different ways. Some speak of a burning sensation, as though acid has been applied to the skin.

Others feel stabbing sensations, or a raw pain that simply will not go away. Some describe it as a graze that refuses to heal, even though nothing is visible on the surface.

The most common symptoms are:

A burning or stinging sensation: at the vulva, sometimes also around the vaginal entrance

Pain with touch or pressure: during sex, when inserting a tampon, or when wiping after urinating

Pain without any touch: a persistent, nagging sensation that is present throughout the day

Pain during everyday activities such as cycling, sitting for extended periods, or wearing tight clothing

Raw or sore skin that looks normal but is extremely sensitive to the touch

Pain that varies by location: sometimes only at the vaginal entrance (vestibule), sometimes across the entire vulva

What makes this particularly challenging is that there is often very little to see on the surface. The skin may look completely normal, while a gentle touch with a cotton swab causes unbearable pain. That is precisely what makes vulvodynia so frustrating. You feel the pain, but no one else can see it.

Everyday activities can become a challenge. Wearing slim-fit jeans, cycling, sitting at a desk for hours on end: things that were once taken for granted. And that is before we even consider the impact on your intimate life and your relationship.

Possible causes of vulvodynia

This is where things become complex, because there is no single cause of vulvodynia. Researchers believe it involves an interplay of different factors that can vary from woman to woman.

The most common causes of vulvodynia are: hypersensitive nerve endings, central sensitisation (a nervous system in overdrive), hormonal fluctuations, chronic pelvic floor tension, and triggers from the past such as infections, childbirth, or stress. We explore each of these in detail below.

Hypersensitive nerves

In many women with vulvodynia, there are more nerve endings in the vulval tissue than is typical. These nerves have also become more sensitive and transmit pain signals in response to stimuli that would not normally cause pain. A light touch can feel like a burn. It is as though your body's alarm system has been set far too sensitively.

A nervous system in overdrive

This is perhaps the most significant discovery of recent years. A growing body of research points to something doctors call central sensitisation. In plain terms: your nervous system has become hypersensitive. It is, in a sense, permanently on high alert, interpreting ordinary signals as a threat.

Think of it like a smoke alarm that goes off from a single candle rather than an actual fire. Your brain and spinal cord have learned to interpret certain stimuli as painful, even when there is no tissue damage.

This explains why some women with vulvodynia are also more sensitive to pain in other parts of their body. And why the condition often co-occurs with other chronic pain conditions such as fibromyalgia, irritable bowel syndrome, or bladder pain syndrome. These are all conditions in which the nervous system has become dysregulated.

What further reinforces this mechanism is something referred to in the literature as the fear-avoidance cycle. If touch has caused pain in the past, your body learns that touch is dangerous. You begin to anticipate sex as something that will hurt, even when you genuinely want it. That expectation alone creates tension in your pelvis and nerves, which in turn makes the pain worse. A cycle that perpetuates itself.

This also explains why some women find that they start avoiding intimacy altogether, or why they participate but feel somehow disconnected from the experience. That is a completely understandable response to chronic pain.

Shame also plays a role. Many women wait years before seeking help, because they believe they are exaggerating, or because they are simply unaware that there is a name for what they are experiencing. Unfortunately, that delay works against them: the longer the nervous system remains in a state of alarm, the more it begins to treat that state as its new normal.

Body and mind are two sides of the same problem when it comes to vulvodynia. Treatment that addresses only one or the other is therefore rarely sufficient.

Hormonal factors

Hormonal fluctuations can play a role. Women are particularly vulnerable to vulvodynia around the menopause, when oestrogen levels decline. Other women develop it precisely when they start taking the contraceptive pill. Oestrogen influences the health of vulval tissue, and a deficiency can make the skin thinner and more sensitive.

A tense pelvic floor

The muscles of the pelvic floor can become chronically tense, often as a response to pain. "If it hurts, I tense up" is a natural physical reaction. But that tension then makes the pain worse, causing the muscles to tense up even further. A vicious cycle that is difficult to break.

Triggers from the past

Vulvodynia sometimes begins following a recurring fungal infection, surgery, childbirth, a period of significant stress, or sexual trauma. The body responds to the original trigger but continues to produce pain long after that trigger has disappeared. As though the body has memorised the pain and no longer knows how to stop it.

How is vulvodynia diagnosed?

Anyone who suspects they have vulvodynia often embarks on a long journey from one doctor to the next. Arriving at a diagnosis is not straightforward. There is no blood test, no scan, no clear-cut evidence. Doctors refer to it as a diagnosis of exclusion: the name is only applied once all other possible causes have been ruled out and the pain has persisted for more than three months.

The best-known examination is the cotton swab test (also called the Q-tip test). The doctor gently touches various small areas of the vulva with a soft cotton swab and asks you to rate the pain. In vulvodynia, this light contact often causes sharp, burning pain at specific points.

The doctor will also assess the tension in your pelvic floor muscles and ask about your medical history. When did the pain begin? Was there a trigger? Do you experience pain elsewhere in your body?

Sadly, it takes women an average of several years to receive the correct diagnosis. Not because vulvodynia is so difficult to recognise, but because many doctors have too little knowledge of the condition. If you suspect you have vulvodynia, ask for a referral to a specialist vulva clinic or a gynaecologist with expertise in this area. Across Europe, a number of hospitals have dedicated vulva clinics.

Treatment of vulvodynia

Regrettably, there is no miracle cure for vulvodynia. What does work is a multi-pronged approach. Most women benefit from a combination of treatments tailored to their specific situation. The good news: clinical guidelines recommend starting with gentle, non-invasive treatments. Not heavy medication or surgery as a first step, but therapies that work with your body.

Pelvic floor physiotherapy

A specialist pelvic floor physiotherapist can help you learn to relax the muscles of your pelvic floor. The emphasis is not on training or strengthening (that is often part of the problem), but on awareness and releasing tension. Through targeted exercises, breathing techniques, and sometimes biofeedback, you learn to recognise when you are holding tension - and how to let it go. Dilators can assist with this: devices that help you gradually become accustomed to the sensation of something inside your vagina, without the pressure of a sexual situation.

You can find a specialist pelvic floor physiotherapist near you through the register of your national physiotherapy association or by asking your GP for a referral.

Psychological support and cognitive behavioural therapy

Because pain and the mind are so closely connected, a psychologist or sex therapist can play an important role. Cognitive behavioural therapy (CBT) helps you to relate differently to pain, and to the thoughts and anxieties that accompany it. You learn to recognise patterns - such as "sex is going to hurt again" - and to break them.

Mindfulness and relaxation techniques have also been shown to be effective. Not because the pain is in your mind, but because techniques that calm the nervous system can reduce the experience of pain. Research shows that mindfulness-based therapy can be just as effective as traditional behavioural therapy in reducing pain.

This connects with what we know about central sensitisation: if your nervous system has become hypersensitive, it can help to soothe that system. Think of deep breathing exercises, relaxation-focused yoga, or other forms of stress reduction. The aim is not to think the pain away, but to create calm in a body that has been on high alert for far too long.

Medication

Some women are prescribed a low dose of amitriptyline. This is originally an antidepressant, but at low doses it acts on the nerves and can dampen pain signals. Please do not be alarmed by the name: it is not prescribed because your doctor thinks you are depressed, but because this medication influences how your nervous system processes pain.

Topical preparations can also provide relief - for example, numbing creams containing lidocaine, or oestrogen cream when hormonal factors are involved.

Self-care

Small adjustments can make a real difference. Wear cotton, non-restrictive underwear. Avoid soap, fragrance, and panty liners in the vulval area. Cleanse only with lukewarm water. Use a good, pH-neutral lubricant during sex. Avoid sitting for too long at a stretch. Take breaks if you cycle frequently.

Surgery

In some cases, when other treatments have not helped and the pain is very localised (specifically with vestibulodynia), a vestibulectomy may be considered. This involves removing a thin layer of painful tissue around the vaginal entrance. This is explicitly a last resort. The procedure is rarely performed and is not suitable for everyone.

Treatment takes time and patience - often many months. But the good news is that most women with vulvodynia are able to reduce their symptoms significantly, or even overcome them entirely.

Treatment What does it involve? When?
Pelvic floor physiotherapy Learning to relax the pelvic floor muscles through exercises, breathing techniques, and biofeedback. Dilators may also be used. First step
Psychological support

CBT, mindfulness, sex therapy		 Breaking the pain-fear cycle. Helps calm the nervous system and weaken the association between intimacy and pain. First step
Medication

Amitriptyline, lidocaine, oestrogen cream		 Dampening pain signals via the nervous system, or providing localised relief through creams and ointments. On indication
Self-care

Adjustments to daily life		 Cotton underwear, pH-neutral lubricant, avoiding soap and fragrance, taking breaks when cycling or sitting for long periods. On indication
Surgery (vestibulectomy)

For vestibulodynia only		 Removal of a thin layer of painful tissue around the vaginal entrance. Rarely performed and not suitable for everyone. Last resort

Sex and intimacy with vulvodynia

Let us be honest: vulvodynia can turn your intimate life upside down. When penetration is painful - or even the thought of it creates tension - sex is no longer a relaxing experience. Perhaps you have started avoiding all forms of physical contact, for fear that things will inevitably head in that direction. That is understandable. But it does not have to stay that way.

The first step that many practitioners recommend is a temporary pause on penetration. That may sound counterintuitive, but the aim is to break the negative association between sex and pain. Your body has learned that touch means danger. That association needs to weaken before you can begin to rebuild.

This does not mean that intimacy stops. Quite the opposite. It means removing the pressure of penetration for a while, so that you can rediscover what does feel pleasurable.

Rediscovering what feels good

Explore other forms of intimacy together with your partner. Caressing, massage, oral sex, sharing a fantasy, holding each other in the shower: there are so many ways to be intimate without penetration. Some couples discover new forms of closeness during this period that they would never have explored otherwise.

Something else that can help is shifting the focus from "sex as a goal" to "pleasure as a goal". Let go of what sex is supposed to look like. What matters is that it feels good for both of you.

Building up gradually

When penetration becomes a possibility again, do so at your own pace. Dilators can help you gradually become accustomed to the sensation of something inside your vagina, in a safe setting free from expectations. You set the pace. You decide when to stop.

A good lubricant is essential. Choose a pH-neutral lubricant without fragrance or other additives that may cause irritation. And take your time. Truly take your time. Arousal is not only pleasant - it is also functional: an aroused body prepares itself for touch.

Talking with your partner

Vulvodynia affects not only you, but your relationship too. Partners can feel helpless, or frightened of causing you pain. Sometimes distance grows from uncertainty alone.

Talk about it. Share what you are feeling, what you need, what you are afraid of. And ask how your partner is coping too. Consider speaking together with a sex therapist. A sex therapist can help you find your way back to closeness, in a way that feels safe for both of you.

You can find a certified sex therapist near you through the register of your national sexology association, or by asking your GP for a referral.

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Finally: you are not alone in this

If this article has resonated with you, I want you to know this: you are not imagining it. You are not being oversensitive. And you do not have to carry this alone.

Vulvodynia is a real, recognised condition. The fact that the pain is not visible does not make it any less real. The fact that the cause is not always clear does not mean nothing can be done.

Perhaps you have already been on a long journey. From one doctor to the next, from one disappointment to another. Perhaps there have been moments when you thought: maybe it really is just me? That is understandable. But no - it is not you.

Seek out a doctor who listens. Surround yourself with people who support you. And know that you are far from alone: countless women are going through the same thing. Some speak about it; most do not. But they are out there.

Vulvodynia is treatable. The path can be long and difficult. But relief is possible. And you deserve a life without pain.

Further reading

Would you like to know more about related topics? These articles may help:

Veelgestelde vragen

Is vulvodynie te genezen?

Vulvodynie is bij de meeste vrouwen goed te behandelen, en veel vrouwen raken hun klachten volledig kwijt. Wel vraagt het tijd, geduld en vaak een combinatie van behandelingen. Afwachten zonder behandeling is zelden de beste strategie. Hoe eerder u start met de juiste hulp, hoe beter de vooruitzichten.

Welke arts moet ik bezoeken bij vermoeden van vulvodynie?

Begin bij uw huisarts en vraag om een doorverwijzing naar een gynaecoloog met ervaring in vulvaklachten, of naar een vulvapoli.

Is vulvodynie psychisch?

Nee, vulvodynie is een lichamelijke aandoening waarbij de zenuwen in het vulvagebied overgevoelig zijn geworden. Het zit niet tussen de oren. Wel kunnen stress en spanning de klachten verergeren, en daarom kan psychologische begeleiding onderdeel zijn van de behandeling. Dat betekent niet dat de pijn ingebeeld is, maar dat lichaam en geest nu eenmaal met elkaar verbonden zijn.

Hoe ziet vulvodynie eruit?

Dat is nu juist het frustrerende: vaak is er niets te zien. De vulva kan er volkomen normaal uitzien, terwijl de pijn heel reëel is. Soms is er lichte roodheid bij de vagina-ingang, maar bij de meeste vrouwen zijn er geen zichtbare afwijkingen. De diagnose wordt dan ook niet gesteld op basis van hoe het eruitziet, maar op basis van uw klachten en de wattenstokjestest.

Wat is het verschil tussen vulvodynie en vestibulodynie?

Vestibulodynie is een specifieke vorm van vulvodynie waarbij de pijn zich concentreert rond het vestibulum, de ingang van de vagina. Bij vulvodynie kan de pijn het hele vulvagebied treffen. Vestibulodynie is de meest voorkomende vorm en wordt vaak uitgelokt door aanraking of druk, bijvoorbeeld bij het vrijen.

Kan vulvodynie ontstaan door de overgang?

Ja, hormonale veranderingen rond de overgang kunnen vulvodynie uitlokken of verergeren. Door een daling van oestrogeen wordt het vulvaweefsel dunner, droger en gevoeliger. Dit wordt soms verward met gewone vaginale droogheid, maar bij vulvodynie is er sprake van chronische pijn die niet verdwijnt met alleen een glijmiddel. Een arts kan beoordelen of hormoontherapie zinvol is.

Hoe lang duurt de behandeling van vulvodynie?

Dat verschilt per persoon en hangt af van de ernst van de klachten en welke behandelingen worden ingezet. Sommige vrouwen merken binnen enkele maanden verbetering, bij anderen duurt het een jaar of langer. Het is belangrijk om realistisch te zijn: vulvodynie vraagt geduld. Maar met de juiste aanpak maken de meeste vrouwen significante vooruitgang.

Kan ik nog een normaal seksleven hebben met vulvodynie?

Ja, veel vrouwen met vulvodynie hebben uiteindelijk weer een bevredigend seksleven. Het vraagt wel aanpassingen: andere vormen van intimiteit verkennen, werken met een bekkenfysiotherapeut, en vooral veel geduld en open communicatie met uw partner. Penetratie hoeft niet het einddoel te zijn. Een seksleven zonder pijn en mét plezier is voor de meeste vrouwen haalbaar.

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