Understanding and treating vulvodynia

Vulvodynia is a painful vulva condition characterised by pain around the vulva and vestibule, that may or may not also be felt inside the vagina. Vulvodynia is a chronic pain condition affecting the vulva that is not caused by infection or another disease.

Vulvodynia is pain affecting the vulva (your inner and outer labia and clitoris, possibly extending to the vaginal opening and inside the vagina).

Vulvodynia may include pain that isn’t necessarily always in the same place on the vulva, or the nature or triggers may change, that has existed for three months or more. It might happen all the time, or come and go, sometimes be triggered by certain types of pressure or activities.

Vulvodynia may be labelled provoked or unprovoked, meaning the pain only appears upon touch (provocation) or it just exists all the time, even without provocation.

The causes of vulvodynia may be hormonal (like being on the pill or missing an ovary), neurological (too many nerve endings, oversensitive nerves), or musculoskeletal (tight or dysfunctional pelvic floor).

Symptoms of vulvodynia

• Vagina, vulva or vestibule hurts when penetration is attempted, with the whole area being tender, but no pain to other areas around the vulva.
• Irritation, stinging, pain, and burning can last for days after sex, attempts at sex, or trying to put anything inside the vagina like a tampon.

Most common symptoms of vulvodynia

• Burning vulva is the most common symptom
• Stinging sensation
• Raw
• Aching vulva
• Soreness
• Throbbing
• Itching
• Vulva may look inflamed or swollen, but can appear completely normal

Why does vulvodynia occur?

Because no specific physical cause is often found, it is suspected that vulvodynia is the result of a nerve proliferation, irritation or damage, or an abnormal response in your vulvar tissue to an infection or injury.

This is sorely vague for those of you suffering vulvodynia or VVS, but so far there is not a lot known regarding the true cause. Some sources may be genetics that switch on inflammation pathways, a bad reaction to yeasts, muscle spasms, allergies or hypersensitivity, hormones, antibiotic use or previous trauma.

Vulvodynia can affect any woman from her teenage years (post-puberty) and it isn’t centred on any locale or ethnicity.

This unique type of vulvar pain can be brought on by sex, or it can just exist all the time without being provoked. Some women have always had it; for some it has come on later, or comes and goes.

The pain itself is called vulvodynia, which just means ‘vulva pain’, just like a ‘cough’ merely explains the symptom without offering any more information.

VVS can involve lots of tiny little sores in the vulval vestibule, and there are some suspect critters: subclinical HPV, chronic, recurrent candidiasis (yeast infections), or bacterial vaginosis, but nothing definitive that is a cause for everyone all the time.

Some muscular causes have also been identified, because the condition may be caused by over-tight perivaginal muscles which leads to tightening and pain.

Some specialists think vulvodynia may have a neurological cause, in particular what’s known as congenital or acquired neuroproliferative vulvodynia. Neuroproliferative vulvodynia means that the pain-related nerves in the vulvar area proliferate, either from birth or after an infection/allergy/event.

The impacts of vulvodynia

Vulvodynia and VVS are a cause of great distress for the women it affects: incurable, unidentifiable vulvo-vaginal pain resulting in a painful, sex and tampon-less existence. It is a recipe for depression, anxiety and heartache. Vulvodynia usually happens to women prior to menopause.

What does the testing for VVS consist of?

A diagnosis is made by doing a cotton swab test: circular pressure applied to the vulvar vestibule to see how painful it is. Tests will be done to exclude infection, and an examination will be done to assess the area.

Other names you might hear for vulvodynia or related conditions:

• Vulvar vestibulitis syndrome (VVS)
• Vestibulodynia
• Vulva vestibulitis
• Vulvodynia

How to treat vulvodynia

There is no cure for vulvodynia or VVS and this means you are going to have to try a lot of different treatments before you find what works for you. The mysterious nature of this condition is both a blessing and a curse: it means that anything could possibly work, and that it could disappear completely without a trace any time.

It may also mean you have a very long, hard road ahead of you in figuring it out, spending thousands upon thousands on treatments and specialists. Don’t be discouraged, but brace yourself!

And find the best specialists straight away, to save time and money (even though they are more expensive). Find support groups online, do your homework, and do everything you can to help yourself, such as eating well, sleeping well, and taking care of your feelings. It matters.

Steps to take if you have vulvar or vestibular pain

1. Completely avoid irritants, and go hypoallergenic

Wash underwear with mild, hypoallergenic laundry detergent, and wash the vulva (in between the inner and outer lips only) with just warm water. Don’t douche or use any creams, gels or anything else on the vulva or vagina, and keep the area clean.

Make sure toilet paper is irritant free – this includes any prints. Buy high quality toilet paper that clearly states it is hypoallergenic, or use a bidet (you can buy portable bidets – you do not need a real one).

This is a set of tactics for removing any possible causes and treating the area the best you can, so as to ensure those elements are not contributing to the problem. Some women will find that in fact their soap or laundry detergent was causing the problem. But, if not…

2. Sexual hygiene and practices matter

Although any sex may be impossible for you, check your practices. This means no spermicides, coloured, flavoured or food-based lubricants or sex toys. Go latex-free with condoms (including sex toys).

If your pain started after becoming sexually active with ejaculate fluid inside your vagina, you may have a semen allergy. Wash your vulva after sex and it might pay to avoid getting ejaculate fluid in your vagina for a few months to see if it makes a difference.

3. Check your tampons and pads

Go hypoallergenic, and really do your research, since you may still react to something in the cotton or rayon blend. You could also try a menstrual cup or washable, fabric pads.

4. Urine may exacerbate pain

If peeing hurts, pour a cup of warm water over your vulva and urine stream as you go – it dilutes the urine. Gently pat dry or use a hair dryer on the cool or warm setting to dry your vulva.

5. Avoid activities and clothing you know make it worse

This may limit your sexscapades and sports, or particular types of clothes (usually tight ones).

Treatment Options

Medicines

There are some very helpful short-acting medicines that can numb the pain locally (local anaesthetic), treat any underlying infections, and dampen the nervous system like antidepressants, anticonvulsants, nerve blockers and interferon.

Surgery – the vestibulectomy

Your doctor may recommend surgery to remove parts of your vaginal tissue. This is usually only recommended in VVS, and is a last resort, as any vaginal surgery can result in nerve damage that actually lasts a lifetime – there are no guarantees. However, it has its place and can work extremely well for women who have neuroproliferative varities of vulvodynia, since it removes the extra-enervated tissue and replaces it with less-enervated tissue.

Hot or cold packs

These hot or cold packs can be used to alter blood flow and any pain or swelling – choose the pack that provides the most relief. You’ll know.

Physical therapy

You will likely be referred to a pelvic physiotherapist to check that the pain is not being caused by overly tight pelvic floor muscles. You can also see an osteopath for this type of assessment and treatment.

Alternative practitioners

Acupuncture, reflexology, osteopathy, EFT/NLP, naturopaths and herbal medicine (especially Traditional Chinese Medicine (TCM)) can look at the problem from a different angle, and without knowing the exact cause, try a combination of treatments that may hit the nail on the head.

Alternative practitioners approach health from a lot of perspectives that your doctor would not, but you must visit a qualified, experienced practitioner. Call or email ahead to see if they think they will be able to help with your specific problem, and if they can’t, can they recommend someone who can.

Try everything

Any and all of these things are worth trying, as there is a reason this is happening to you, and it is going to be up to you and your plethora of therapists to find it.

It sucks, so talk about it

Counselling and support groups are going to help, so find one in your area or online, and go. Talk about what’s happening to you, and vent. Vulvodynia and VVS are excruciating life-interrupters, and can really put a damper on everything you do, including your relationships, sports, and even just your ability to care for yourself.

Keep track

There is a reason, so find it, and eliminate it. Keep a very detailed journal of what you try, what makes you feel better, and what you didn’t like. Your journey might be long, and it helps to keep a clear, accurate record of what you’ve tried and what you haven’t.

Keep records from every practitioner you visit, with their notes, so you can take the notes to other practitioners so everyone knows what the other is doing.

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