• Reference Number: HEY-725/2015
• Departments: Gynaecology
• Last Updated: 2 November 2015

Introduction

This leaflet has been produced to give you general information about your condition.  Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and your doctor, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.

What is vulval vestibuloynia?

Vulval Vestibulodynia is an excessive sensitivity of the nerve fibers and even, on occasions, overgrowth of the nerve fibres in the area is believed to be the cause of your symptoms. Vestibulitis was the former term for vestibulodynia. This term is out of date now. It is slightly misleading as it implies that the vestibule is inflamed – hence the term vestibulitis. It is not believed that an inflammatory process in the skin is reason for your symptoms.

The vestibule is where the vulva (area of skin on the outside) meets with the vagina (inside you). It is an extremely sensitive part of your body and contains the Bartholin’s glands (which lubricate your vagina), the urethra (where you pass urine) and a number of the small, minor vestibular glands which also produce vaginal discharge.

What are the symptoms?

The pain experienced by women with vestibulodynia is different for each person. The main problem for women with this diagnosis relates to hyper-sensitivity on light touch to the vestibule (vaginal entrance), such as during sexual intercourse and the insertion of tampons. The degree of pain is variable. Some women have pain but are able to tolerate penetrative sex. For others, any pressure to the vestibule (vaginal entrance) area causes symptoms of soreness and tenderness,including tight clothes and even light touch to the area. Itching is not usually a feature of the condition.

Although the pain on light touch is the main symptom, it is wrong to think that this is a skin condition. When sexual intercourse has been painful for some time, there are inevitable effects on your sexual relationship. Tension in the lower pelvic floor muscles during attempted sex can lead to increased pain.

If communication breaks down between a couple then this can lead to further disharmony. In some couples where the symptoms have been present for many months/years, vestibulodynia can alter sexual function and a referral to a psychosexual counsellor is necessary.

What is there to see on examination?

Vestibulodynia is a physical disease. Often on examination of the vestibule there is tenderness to light touch. There can be red areas at the site of tenderness, but frequently the findings are normal. Just because your doctor cannot see anything does not mean that there is nothing present.

What tests should be done?

Vestibulodynia should be diagnosed by a doctor who should rule out infections and vulval skin conditions, which may cause similar symptoms. Many doctors however, are unaware that the condition exists and often regard the condition as ‘thrush’. Your doctor should listen to your symptoms, examine the vulval area and refer you to a specialist necessary. This specialist would be a gynaecologist, dermatologist or a genito-urinary (GUM) physician.

If thrush is suspected by your doctor then it should be confirmed by performing a vaginal swab. Repeated vaginal anti-thrush treatments make the condition worse so insist on oral treatment instead, with Diflucan or Sporanox, for instance.

How is it treated?

As there is no obvious cause for the symptoms, it is difficult for many women (and some doctors) to understand the condition. There are many conditions that it is not! It is not infective, it is not related to cancer, it will not spread to other parts of your body and you will not pass it on to your partner.

The treatments available for this condition are very variable. Different doctors treat the condition in different ways but below are a selection of suggested treatments. Not all doctors will use these methods, but you can discuss the different options with him/her. Some treatments will help some women and not others. Treatments range from local anaesthetic cream/gels, vaginal dilators, pelvic floor muscle physiotherapy, psychosexual counselling and rarely surgery.

Be careful of non-prescribed creams on the vulva as some can cause vulval irritation. Remember the strict vulval hygiene measures that you should practice.

What causes it?

It is likely that a number of factors cause vestibulodynia but often no identifiable cause can be found.

Some women have a sudden onset of symptoms following a specific event and this is commonly recognised as a severe attack of thrush followed by anti-thrush treatment. Once the attack of thrush settles following treatment, soreness and burning may persist as vestibulodynia. Some women complain of vestibulodynia following childbirth, or the use of certain bubble-baths and soaps or with the use of antiseptic in the bath.

Where symptoms have gradually occurred over sometime, even years, then it¹s difficult to identify a cause. Some women with interstitial cystitis also suffer from the condition. The reasons why the two conditions are connected remain unknown.

How common is it?

Like any under recognised condition, it is difficult to know exactly how common it really is. Some work performed in America by a gynaecologist called Martha Goetsch suggested that the condition is present in up to 15% of women who attend outpatient departments with other condition.

In a recent survey of GPs in the north of England, chronic vulval pain and soreness was extremely common with nearly 50% of GPs seeing one woman a month and 13% of GPs seeing one patient a week. This number of women is likely to be even greater as many women who have vulval vestibulodynia will have been given an incorrect diagnosis (usually thrush) and therefore will be excluded from these figures.

All evidence points to vulval vestibulodynia (and vulval pain from other causes) being an extremely common, under-recognised problem.

Treatments available from your doctor?

Local Anaesthetic Gel

This is a water based gel which contains a weak amount of a local anaesthetic such as lidocaine. The anaesthetic can ‘numb’ the nerves in the skin temporarily and may be used safely on a regular basis. Many women have gained considerable benefit using the treatment, particularly with vestibulodynia when used half-an-hour prior to sexual intercourse. They find it helpful to rub the gel into the tender areas – this helps numb the skin and also can help overcome tension in the pelvic floor muscles. The gel can now be bought over the counter.

Please ensure that you use a test dose first on a small area of the vulva as around 10% of women can have a skin reaction to it. Partners may get a tingling or stinging sensation during intercourse.

Vaginal Dilators

These can be inserted to relax the muscles around the entrance to the vagina and to gently stretch the area. These can be helpful to overcome the tension in the pelvic floor muscles that can occur in vestibulodynia.

Nerve Fibre Blocking Tablets

These may be useful if the pain that you have is more constant in nature. This is used in low dosages to treat pain directly at the nerves endings in the skin.

Useful measures if you have vulval pain:

•  We recommend that you only clean the vulval area once a day; avoiding scrubbing with flannels and brushes.
•  We suggest that you use only plain water to wash with; you should always use an emollient cream (emollients are moisturising treatments applied directly to the skin to reduce water loss and this covers the area with a protective film) and moisturiser. Showers are preferable rather than a bath.
•  Avoid the use of soaps, bubble baths, deodorants and vaginal wipes from coming into contact with the vulval area as this may irritate the area.
•  If passing urine makes your symptoms worse, then wash the urine away from the vulval area using a jug of warm water whilst on the toilet and apply emollient cream (for example Drapoline or similar product) twice daily.
•  Avoid the use of none prescribed creams (for example over the counter thrush treatments).
•  Avoid using antiseptics in the bath.
•  Wear loose fitting cotton underwear.
•  Try washing undergarments with WATER only. Fabric conditioners and biological washing powders contain potential irritants to the skin.
•  Only use white or unbleached toilet tissue.
•  When washing your hair, avoid the shampoo from coming into contact with vulval area. You may want to try washing your hair in the sink.
•  Use a moisturiser for example E45 or Drapoline, the latter especially if you have urinary incontinence.
•  Organic cotton underwear and other natural healthcare products may help.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Gynaecology Department:
Gynaecology Outpatients – Women and Children’s Hospital (01482) 607829

Useful Contacts

Vulval Pain Society
VPS, PO Box 7804, Nottingham, NG3 5ZQ
Worldwide Lichen Sclerosus Support (formerly known as National Lichen Sclerosus Support Group)
Contact admin@lichensclerosus.org with queries or phone
Helpline 07765 947599. (Operate weekdays from 4pm to 6pm, subject to volunteer availability)
Information on gynaecology services
https://www.hey.nhs.uk/gynaecology
www.vulvalpainsociety.org
www.lichensclerosus.org

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.