Vulvodynia (persistent pain of the vulva) 

  • Overview

Introduction 

Vagina health

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Vulvodynia is persistent, unexplained pain in the vulva, which is the skin surrounding the vagina. There is usually no obvious cause, but much can be done to help relieve the pain so that it no longer causes problems.

The pain of vulvodynia is often described as a burning, stinging or raw sensation. Some women describe the feeling of a needle being stuck in their genitals.

Vulvodynia can be:

  • unprovoked vulvodynia – pain that is in the background constantly or that comes on spontaneously, with no particular trigger
  • pressure-provoked vulvodynia (also known as vestibulodynia) – pain triggered when the vulva or vestibule (where the vulva meets the vagina) is lightly touched (for example, after inserting a tampon or during sex)

The pain can also be limited to the vulva or part of the vulva (localised). However, it may also be more widespread (generalised), spreading to the urinary tract, the bottom or the inside of the tops of the thighs.

It can be made worse by activities such as cycling or horse riding, which may put prolonged pressure on the vulva.

The following information and advice about vulvodynia covers:

  • who is affected
  • what you should do
  • the possible causes of vulvodynia
  • how vulvodynia is managed

Who is affected?

Vulvodynia affects women of all ages, from 20 to 60, but often starts in women younger than 25. It can be very distressing, significantly affecting quality of life.

Women with vulvodynia are usually otherwise healthy, with no history of sexually transmitted infections. However, some women with vulvodynia also have vaginismus, when the muscles around their vagina tighten involuntarily whenever penetration is attempted.

What you should do

If you have vulval pain as described above, see your GP or visit your local genitourinary medicine (GUM) clinic.

Your doctor may touch your vulva lightly with the tip of a cotton bud to see if this causes pain. A diagnosis of vulvodynia is made based on your symptoms.

Possible causes

The cause of vulvodynia is not understood. It's possible that it is caused by:

  • a nerve problem – irritation or damage of the nerves around the vulva, oversensitive nerve endings in the skin of the vulva, or (less likely) a trapped nerve in the spine
  • previous surgery to the vulva, especially if it resulted in scarring

Vulvodynia is not contagious and has nothing to do with personal hygiene or hygiene products.

Other conditions that may cause vulval pain

Your GP will want to rule out other conditions that can cause vulval pain, such as:

  • persistent vaginal thrush
  • sensitivity to something touching the vulva, such as soap, bubble bath or steroid and antifungal creams (known as irritant contact dermatitis)
  • a drop in the hormone oestrogen, causing dryness of the vulva, especially during the menopause
  • a recurrent herpes simplex infection
  • lichen sclerosus or lichen planus (skin conditions that may cause intense irritation and soreness of the vulva) 

In rare cases, Behcet's disease (a disease of the blood vessels that can cause genital ulcers) or Sjogren's syndrome (a disorder of the immune system that can cause vaginal dryness) may be a cause. However, these conditions have often been previously diagnosed.

Stress may also be a factor for some people. 

Managing vulvodynia

A combination of some of the following treatments can help relieve symptoms of vulvodynia and reduce its impact on your life. Discuss these options with your doctor.

Lifestyle tips

The following lifestyle tips may help to prevent symptoms of vulvodynia:

  • Wear 100% cotton underwear and loose-fitting skirts or trousers.
  • Avoid scented hygiene products such as feminine wipes, bubble bath and soap – an emollient is a good substitute for soap, but long-term use of aqueous cream should be avoided.
  • Use petroleum jelly before swimming to provide protection from chlorine.
  • Avoid cycling and any other activities that put prolonged pressure on the vulva.
  • If sexual intercourse is painful, try to find a position that is comfortable (many women find that being on top is the most comfortable position).
  • Try to reduce stress as high levels of stress can increase the pain of vulvodynia – read some relaxation tips to relieve stress.

Over-the-counter gels and lubricants

Some women with vulvodynia find that applying the anaesthetic gel lidocaine to their vulva 10 minutes before sex may make intercourse possible, although lidocaine can sometimes irritate the area. If you are using a condom, it is important to wipe the lidocaine off before sex, as it can affect how well condoms works.

A tube of 5% lidocaine ointment can be bought over the counter from a pharmacy.

Vaginal lubricants (also available over the counter) may soothe the area and help moisturise the vulva if it is dry.

Speak to your pharmacist about these treatments.

Prescription medication

The tricyclic antidepressants amitriptyline and nortriptyline have been found to relieve the pain of vulvodynia for some women. However, drowsiness, weight gain and dry mouth are possible side effects.

Your doctor will probably recommend that you start on a low dose of amitriptyline or nortriptyline, and gradually increase the dose until your pain subsides. This may take several weeks, and you may need to take the medication for three to six months.

The anti-epilepsy medicines gabapentin and pregabalin can also help control pain. Make sure you talk to your doctor about the side effects, and how you should take the medication.

Physiotherapy

Your GP may refer you to a physiotherapist if you also have vaginismus.

The physiotherapist may teach you some pelvic floor exercises (such as squeezing and releasing your pelvic floor muscles) to help relax the muscles around your vagina.

Another technique to relax the muscles in the vagina involves using a set of vaginal trainers. These are four smooth, penis-shaped cones of gradually increasing size and length, which can be used in the privacy of your own home.

The smallest one is inserted first, using a lubricant if needed. Once you feel comfortable inserting the smallest one, you can move on to the second size, and so on. It is important to go at your own pace, and it does not matter how long it takes, whether it is days or months.

When you can tolerate the larger cones without feeling anxious or any pain, you and your partner may want to try having sexual intercourse.

Read more about physiotherapy and the treatment of vaginismus.

Talking therapy

Cognitive behavioural therapy (CBT) is a type of therapy that aims to help you manage your problems by changing how you think and act. It can often help women cope with the impact that vulvodynia has on their life.

CBT focuses on the problems and difficulties you have now, and looks for practical ways you can improve your state of mind on a daily basis.

Talk to your GP about whether CBT may benefit you, and whether you can be referred to a therapist for this.

More information

Further advice and support can be found by visiting the following websites:

Page last reviewed: 03/07/2014

Next review due: 03/07/2016

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Comments

The 9 comments posted are personal views. Any information they give has not been checked and may not be accurate.

jadebowden said on 11 March 2014

Hi my name is jade, ive suffered with Vulvodynia since i was 12 and now im almost 19. as you can guess this pretty much rewined my teenage years as i wouldnt go swimming, horse riding, would be in too much pain to go out and even a bus journey i horrificly painful. after 4 years of constant antibiotics as my doctors thought i had thrush or internal cystitus, i changed docotrs hoping for someone better. ive had persistant trips to the gyne an urrologist, still n awnsers untill i self diagnosed myself with this, i told my doctors and he still refuses to beleive its this, but, everything on this page is what ive got. i will be reporting my doctors for not helping and i will be going to a gyne in london hoping for some awnsers and much needed treatment. im happy im not alone and the only one with this problem, i wish everyone the best of luck with finding treatments and when i return from london, any iormation WILL be posted on here for everyone too see, including the doctors i seen. goodluck xxxx

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Suzi0906 said on 24 February 2014

Hi everyone. My names Suzi and I have experienced pain in my vulva from the age of 15... I'm turning 30 this year!! So for half of my life I have been ruled by this horrible, incurable unexplainable pain. It has ruined my sex life, made wearing the clothes I want to wear unmanageable and even showering and bathing unbearable. If you're reading this I'm guessing you're experiencing similar symptoms? 've been from clinic to clinic, seen numerous different GPs, been to a specialist dermatologist in London's St Thomas' hospital, a specialist vulva clinic in Watford, had test, biopsies, been on all sorts of medications, lotions, potions, you name it. It made me depressed, it made me feel ugly and the worst part was keeping it a secret. I mean it's not exactly the kind of thing you want to share with your friends is it? So the only person I told was my mum, and three years into my marriage I finally told my husband. They are the only two people who know... As well as all of the countless specialists I've seen!
I was diagnosed 6 times with vulvodynia and I wouldn't accept it. How can you have so much pain and not have any form of treatment for it? I read book, websites, discussion boards and even contemplated seeing a councillor as I was never getting any direct answers, other than 'that's what it's called and we don't know why people get it and there's no cure' and kept being prescribed amitriptyline... Which I took at first but it never worked. I use non bio detergent and softer, wash my hair over the sink so the chemicals don't run on my body and I use aqueous cream to wash my bits as anything else irritated it more. I often bathed in bicarbonate soda to ease the pain but I longed for a bubble bath without spending the night screaming afterwards!
So I continued to return to my doctor and was put on a form of medication called Gabapentin 300mg

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JenniferC03 said on 31 January 2014

Charlotte, please please please provide the name of the surgeon - desperately trying to find someone. Suffered for 8 long years! Need someone to actually understand rather than just fobbing me off! Anyone else with any more info about who can help (in the UK) please let me know! I will keep checking back on this page, happy to give my email to anyone that can help me further. Happy to travel across the Country if needs be!

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Tala1301 said on 30 January 2014

Hi Charlotte,
Please could you kindly provide the name of the consultant.

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Charlotte2014 said on 25 January 2014

I was suffering with Vulvodynia for 3 years before my cure was found. I was referred to all sorts of specialists for all sorts of different things only to find out it wasn't the right thing they were trying to treat. I was then referred to a doctor at Whythenshawe Hospital. He explained what vulvodynia actually is and arranged an appointment for me to come and see him again and have steroid injected into the area where the vulvodynia was. I was sceptical as to wether this would work but a week after the 1st injection I was completely pain free. I had the injections done every 3 months but have just been told to leave it 6 months between injections. In the 3 years since starting that 1st injection I haven't had any pain atall! I am so glad I was referred to the doctor as he has been my life saver by curing my Vulvodynia. He has told me that he doesn't think my Vulvodynia is ever going to come back either which is such a relief. He has people travelling from all over the country even from Ireland so if you are desperate for this treatment done I would definitely recommend that you ask to be referred to him. I hope this helps some of you because I wish so badly that someone would have referred me to him so much sooner.

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Snods said on 11 December 2013

I am approaching my 70th birthday and was diagnosed with this 18 months ago. All treatments suggested have failed and the symptoms just get worse and worse. I am at my wits end - sitting is a nightmare and it takes a long time to go off to sleep at night and as soon as I become conscious the whole thing just starts up again. I am usually awake at 6am with no hope of going off to sleep again. If I didn't keep myself busy I know I would be severely depressed. The only relief from the symptoms is when I am standing and walking about. The latest suggestion by my gynaecologist is a botox injection but I am loathe to be a guinea pig and possibly suffer even more discomfort. The last drug suggested was Pregabalin but no luck with that either. Help!

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bookish said on 31 July 2013

I am 19 and have suffered with this for over a year. I have seen several GPs and a gynaecologist, but nothing that has been suggested or prescribed to me so far has helped to improve my condition. Many of the treatments on this page have not been mentioned to me by anyone.

happyxxx, I was very interested in your comment, and it is really good to hear of someone who has overcome this. I would love to be able to talk to you to find out a bit more about the treatments you have used, for example the kind of acupuncture that you have received. It is such a shame that this website doesn't facilitate private messaging!

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bookish said on 31 July 2013

I am 19 and have suffered with this for over a year. I have seen several GPs and a gynaecologist but have seen no improvement in my condition, and it's becoming quite a struggle to cope with. I have not been told about or offered most of the suggested treatments on this page.

happyxxx I was really interested to read your comment and it's encouraging to hear of someone who has been able to overcome this. I would love to hear more about the treatments you've used, for example the kind of acupuncture you've received.

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happyxxx said on 06 April 2013

I was diagnosed with this distressing condition last year. fortunately my GP had heard of vulvodynia and I was given treatment soon after the symptoms first appeared. I was prescribed a tricyclic antidepressant, increasing the dose by 10 mg every 10 days. I was also given an oestrogen cream to apply internally. It took a while for my GP to sort out the painkillers that suited me best. I also had acupuncture and physio from a women's health physio, which I funded myself. Both of these complimentary treatments were extremely effective in relieving the pain. The tricyclics didn't kick in for roughly 3 months - they do take a while to work for some people. I could not have intercourse, but was given vaginal dilators, which I think helped to relax my pelvic muscles.

A year on, and I am virtually pain-free. I am able to have pain-free sex and although I get the occasional flare-up, it is manageable with the help of acupuncture and painkillers. the flare-ups are also getting rarer. I can now live a full and happy life.

For any other women out there who have been diagnosed with this awful condition and feel hopeless, I would say don't be embarrassed to see your GP asap. Do not put up with this pain on your own. It DOES get better with time, but you must be patient.

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