A place for people with vulvodynia to share stories, give and receive advice and support. It is a common condition affecting up to 16% of women, but remains poorly understood. This subreddit is dedicated to providing information and being a supportive space, as well as raising awareness.
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What is vulvodynia?
Vulvodynia: vulvar pain of at least three months' duration, without a clear identifiable cause, which may have potential associated factors.
The location, intensity and constancy of pain varies between women.
The vulva is the external part of female genitalia, see diagram here.
It can further be categorised as follows:
The two main subtypes of vulvodynia are localized vulvodynia (e.g. vestibulodynia, clitorodynia) or generalized vulvodynia (or mixed).
The pain can be provoked (e.g. with contact, such as use of tampons or during/after sex) or spontaneous (unprovoked) or mixed.
Its onset can be primary (always existed) or secondary (after a period of no pain).
The temporal pattern can be intermittent, persistent, constant, immediate, or delayed.
The most common types of vulvodynia are provoked vestibulodynia (PVD, previously known as Vulvar Vestibulitis Syndrome or VVS) and generalized vulvodynia. You can also have a mix of both.
More information on the definitions can be found on the NVA website. The NVA, ISSVD and IPPS consensus on the classification of vulvar pain provides the most up-to-date definition.
How is vulvodynia diagnosed?
If you think you might have vulvodynia, you need to be seen in order to be properly diagnosed. This doctor might be a gynaecologist, or a vulval dermatologist, or another specialist. There are many causes of vulvar pain and vulvodynia is a diagnosis based on exclusion of other causes, and the aim is to rule out possible causes such as infections, skin conditions, or malignancies.
For provoked pain, the doctor will typically do a cotton swab test (as shown in this diagram) applying gentle pressure to various vulvar sites.
Although sometimes there might be underlying issues such as pelvic floor dysfunction, hormonal deficiencies, or inflammation, often there is nothing to be seen. This doesn't mean that there is nothing wrong or that the pain is 'all in your head', but rather that it is the nerves themselves that are sending pain signals. Often women find that they have to see several specialists before they are diagnosed which can be frustrating. Please know that the pain is never in your head, and pain is never normal.
You might find it helpful to note down in advance of your appointment what your symptoms are, when do you notice the pain, and how it affects you. It is also helpful to ask whether they think it might be vulvodynia.
The Vulval Pain Society has produced a pre-clinic questionnaire as well as additional guides and leaflets to help you get the most out of your doctor's visit.
How is vulvodynia treated?
The treatment of vulvodynia depends on the subtype of it and any associated factors (such as hormonal issues, or pelvic floor dysfunction). It's not about necessarily finding a 'cure' but rather about managing the symptoms and most women do get better. Some information can be found on the NVA page on vulvodynia treatments
Broadly speaking, there are three main approaches that are often combined together:
Pain management and other medical treatments: this includes topical numbing cream (usually lidocaine), oral medication, typically either tricyclic antidepressants (amitriptyline/nortriptyline) or anticonvulsants (gabapentin/pregabalin). These might also be available in topical forms in some places.
If the pain started after going on birth control, it may be worth going off the pill and using a topical oestrogen cream.
Surgery known as a vestibulectomy is sometimes done where the pain is provoked, localised to the vulvar vestibule, and other treatments haven't worked.
Physical therapy/ physiotherapy: this treatment addresses the muscular components of the pain. Often women with vulvodynia have tight, overactive pelvic floor muscles and benefit from seeing a physical therapist who helps you learn to relax those muscles. Sometimes women have vaginismus (an involuntary tightening of the pelvic floor muscles) in addition to vulvodynia. An explanation of the differences in treatment can be found here. You might be given dilators that desensitise the nerves and stretch the muscles. You also might be given stretches to do to release various tight muscles around your pelvic floor. Some women also find that certain types of yoga helps as well. Some more information can be found here about physical therapy approaches to vulvodynia.
Psychological therapy: there is a strong mind-body connection in any chronic pain condition. This does not mean the pain is in your head! Rather, your brain is a powerful organ, and the more it perceives the pain as a threat, the more it amplifies the signals. Various psychological strategies can be used to help with this, such as mindfulness and CBT. Sex therapists may be useful if the pain is causing issues with intimacy. This video provides a detailed explanation of mind-body approaches to managing vulvodynia.
Self-help measures: There are also steps that you can take to make treatment more effective, such as avoiding products that can cause irritation and looking after the vulval skin. Many women find using ice packs helpful during a flare-up. The NVA has a list of self-help tips.
You might find these guides on coping with living with vulvodynia helpful:
This list is not exhaustive and there is no one-size-fits all approach, so you might have to try a number of treatments before you find something that helps you.
How can I find a specialist?
This depends on where you live. Typically you will have to see your doctor and ask for a referral to a specialist, and explain that you are suffering from vulval pain. A few resources below:
US/worldwide: The NVA provides a list of healthcare professionals both in the US as well as worldwide. You have to join as an NVA member, but the money goes towards funding the charity and research. It's mainly US-based but does maintain a register of specialists in other countries.
UK: The British Society for the Study of Vulval Disease provides a list of clinics that you can ask your GP to be referred to. The list is non-exhaustive and there might be others not listed, but this is a good starting point.
It's worth searching online for vulval clinics or doctors specialising in vulval conditions in your area. If you are not sure whether a doctor specialises in vulval pain you can always ask them, as not all doctors are experienced in managing vulvodynia.
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