Vulval Pain Society
The Vulval Pain Society (VPS) is a confidential service for women who suffer from vulval pain due to vestibulodynia (formerly known as vulval vestibulitis) and vulvodynia. The Society was set up in 1996 by a doctor and a nursing sister. The VPS is not externally funded or attached to any health service organisation.
The aims of the charity as set out in the governing document are:
- To promote and protect the physical and mental health of sufferers of vulval pain through the provision of support, education and practical advice
- To advance the education of the general public in all areas relating to vulval pain
The Vulval Pain Society is run by volunteers and relies purely on charitable donations. We are very grateful for any monetary donations which help us to continue providing help and information for sufferers of vulval pain.
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In 1987 an American gynaecologist called Edward Friedrich described a group of women who experienced severe pain and discomfort in the vestibule area of the vagina. The vestibule is where the vulva (area of the skin on the outside) meets with the vagina. It is an extremely sensitive part of your body and contains the Bartholin’s gland (which produces vaginal lubrication), the urethra (where you pass urine) and a number of the small minor vestibule glands which also produce vaginal discharge.
What are the symptoms?
The pain experienced by women with vestibulodynia is very individual. The main problem for women with this diagnosis relates to hypersensitivity on light touch to the vestibule, such as during intercourse and on 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 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.
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 This term is out of date now.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 to blame for symptoms. An excessive sensitivity of the nerve fibres and even, on occasions, overgrowth of the nerve fibres in the area is believed to be responsible for symptoms.
Although the pain on light touch is the main symptom it is wrong to think that this is a skin condition. When sex has been painful for some time there are inevitable effects on your sex life. Tension in the lower pelvic floor muscles during attempted sex can lead to increased pain and subsequent avoidance of sex. 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 or years, provoked vulvodynia can alter sexual function and a referral to a psychosexual counsellor is necessary. For further information contact the VPS.
You will need to be open-minded with regard to treatments. When planning your treatments it is best to focus on five different areas:
- Using medical treatments the best you can, e.g. drugs such as nortriptyline and gabapentin, andanaesthetic gels.
- Physical therapy, e.g. pelvic floor muscle training, biofeedback and desensitisation.
- Sexual therapy, including psychosexual therapy, e.g. overcoming vaginismus (vaginal muscle tightening during penetration).
- Stress management and psychological therapies.
- Holistic treatments, e.g. acupuncture, exercise and diet.
Some of these areas may be better developed than others and as so many vulval symptoms can be self-managed it is up to you to design yourself a package of treatment! See Getting help from health professionals.
Please also remember that nothing on this site is meant to qualify as a medical diagnosis. You should consult your doctor or other medical practitioner for a diagnosis and further information. We do not encourage you to self-diagnose your symptoms and would encourage you to work with your doctor (GP or specialist) to find the best treatment for you. Before you take advice from the VPS it is best that your condition is diagnosed by a doctor familiar with vulval pain.
Contact Vulval Pain Society
If you wish to contact the VPS with queries regarding our services, a vulval condition or treatments, you can do so via email or post. We do not currently offer telephone support, but details are given below of another vulval pain organisation who may be able to do this with prior arrangement.
Via email
You can email the VPS at info@vulvalpainsociety.org with enquiries about administration, but please note we do not have staff available by email to give you one-to-one support. Your message will be forwarded to the VPS Management Committee, although replies cannot be guaranteed and it is best to write to the PO Box address given below.
By post
If you would prefer to contact the VPS by letter, please write to the PO Box number given below. Please do bear in mind that replies are offered on a voluntary basis and may take up to six weeks.
VPS
PO Box 7804
Nottingham
NG3 5ZQ
By telephone
The VPS does not currently offer telephone support.
However, the Vulval Health Awareness Campaign (VHAC) have a facility whereby you can arrange a Skype call with them by filling in a form on their website. This facility is currently run on a voluntary basis by Fabia Brackenbury, the founder of VHAC and the Association for Lichen Sclerosus and Vulval Health. Fabia is an honorary member of the British Society for the Study of Vulval Disease and has been working in vulval health support for 10 years. She is a patient who suffers from lichen sclerosus and has first hand experience of coming to terms with living with a vulval condition. VHAC offers a valuable ‘first point of contact’ for every woman with any vulval condition including lichen sclerosus, vulval pain, vulval cancer, VIN, Paget’s disease and other less well-known conditions.
The VPS cannot guarantee the quality of the service given and takes no responsibility for any situation arising from contact.
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