The quickest pulse.

Feminist, queer rights activist, left-wing, intersex and trans rights.

Vulvodynia: how the NHS and medical associations worldwide are failing women*

Vulvodynia. What is it? Ask your GP and they will stare back at you clueless, or perhaps pull up Wikipedia to search for it. Little is known about the condition and yet as many as 40% of women* are known to suffer with it at some point in their lifetime.

What is it?

Vulvodynia is an umbrella term for all seemingly unexplained pains in the vagina. Within this category fall clitodynia (pain localised to the clitoris) and vestibulodynia (provoked pain localised to the vestibule of the vaginal canals). It is characterised by a burning pain or a feeling of rawness. This can occur unprovoked and unexplained, or only during sexual activity or contact. For some women this pain can become so bad that even simple things such as sitting down leave them in extreme agony.

Upon inspection, the vagina appears as normal and often there is nothing to be found. This is because the pain is caused by the nerves within the skin of the vagina, which are not visible. For this reason, many women are turned away by their GPs or sent to psycosexual counselling and are told that the pain is “in their mind.” This can lead to depression, frustration and even the breakdown of their relationship.

How is it treated?

Here’s the biggest problem… nobody really knows! The most effective treatment found to date is the prescription of tricylic antidepressants and medication used normally to treat epilepsy. This is because both of these medications alter the way that the brain perceives pain. But these treatments have low success rates and most patients relapse over the course of their lives.

Why is vulvodynia a major problem?

It’s a vicious circle. Many GPs have never heard of the condition and so they can not accurately diagnose their patients. This leads to the belief that few women are suffering from the disease and so no funding is being put into research for solutions to the condition.

Many sufferers are passed from consultant to consultant, prescribed medication for yeast infections, or left to suffer alone, being told that the pain that they are feeling does not exist.

What organisations are backing research for vulvodynia research?

The Vulval Pain Society is by far the most helpful charity trying to help sufferers. But other than that, little are interested. The condition doesn’t even have a page on the NHS website.

Asides from that, the National Vulvodynia Association is an organisation trying to help sufferers - if they pay a $45 membership fee. Without this fee, sufferers are denied information about their condition. This is persecuting the poor and needy.

What can I do?

If you are a UK resident you can complain to the Health Service Ombudsman.

If you are a sufferer, you can take part in research studies to help to find new cures. Link here.

I will be contacting my local MP and anyone that will listen to me to try to educate GPs about the condition of vulvodynia and to get a page up on the NHS website about the condition. Please check back to my blog. I will be posting updates and letting you know if there is anything you can do to assist me.

What do I do if I think I am suffering from the condition?

Read up about the condition on the internet. If you are suffering from an unexplained burning pain and have no infection, chances are it’s vulvodynia. Educate yourself on the condition first and then go to your local GP and demand to be sent to a gynecology expert.

* Cisgender women or people with vaginal canals who identify otherwise

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