Overview: What is vulvodynia?
Vulvodynia is a condition that makes many women suffer tremendously. In the vulva area, which includes the mons veneris, labia and clitoris, they experience itching, burning, stinging and pain. Some describe their sensations as if they were being mauled with electric shocks, needles or a knife. Often no gynecological or dermatological causes for the complaints can be found.
Vulvodynia – different forms
Experts classify vulvodynia based on several features:
- In many women, the entire vulva is not affected, but only certain areas (localized vulvodynia). Especially often, the unpleasant symptoms appear at the vaginal entrance with the labia minora and labia majora (vestibule). Vestibulodynia is the technical term for it. But the region of the clitoris can also hurt (clitorodynia). However, some women experience the unpleasant symptoms in the entire vulva area (generalized vulvodynia).
- Vulvodynia can occur spontaneously without any trigger. In addition, touch, pressure or friction can cause the discomfort. Such mechanical irritations occur, for example, during sexual intercourse, cycling or tight-fitting clothing. Provoked vulvodynia is what doctors call it. In some women, spontaneous and provoked vulvodynia are also at work together.
- In addition, doctors distinguish between primary vulvodynia, which occurs without a recognizable trigger, and secondary vulvodynia, in which another disease is the reason for the symptoms. This can occur after genital infections, bladder infections or skin diseases.
The causes of vulvodynia are still largely unclear, but. Possible triggers are bacteria, viruses, skin diseases, nervous disorders, emotional but also unknown factors. The treatment therefore usually involves doctors from several disciplines, such as specialists in gynecology, dermatology, neurology, physiotherapy and psychotherapy. There are several ways of treatment, which can be combined with each other. Examples include medications, physical therapy, relaxation techniques, and sports and exercise.
Vulvodynia – frequency and age
The incidence of vulvodynia is difficult to quantify. U.S. surveys found that about five to ten percent of women deal with the uncomfortable intimate symptoms at some point in their lives. Thus, vulvodynia is not uncommon, although it is still largely unknown to some women and professionals.
Vulvodynia mostly affects women of childbearing age. Sometimes the symptoms show up later in life after menopause. However, the disease can already start in childhood or adolescence. In young years, provoked vulvodynia occurs more often, such as during the first sex or insertion of a tampon.
Vulvodynia: causes and risk factors
The exact causes of vulvodynia are still largely unknown. However, a combination of physical, psychological, emotional, social and genetic factors is thought to set the disease in motion.
Researchers discuss the following factors:
- Nerve damage, such as to the pudendal nerve – it supplies certain areas of the intimate region
- increased number of nerve fibers in the affected area – this increases the sensitivity to pain
- Release of increased amounts of inflammatory messengers, sometimes without the pathogen still being present in the body
- unusual reaction of the body to infection or tissue injury: For example, from a fall on the coccyx, pelvic or pelvic floor surgery, repeated bladder infections, or vaginal births with an episiotomy or stretching of the nerves
- Genetic predisposition: Certain gene variants can maintain inflammatory processes via the increased release of inflammatory messenger substances (for example cytokines). However, there is as yet insufficient scientific evidence that vulvodynia is congenital or inherited.
- Hypersensitivity to one’s own vaginal flora: Frequent vaginal inflammations caused by the yeast Candida albicans – this is considered an important trigger of vestibulodynia.
- weakened or cramped pelvic floor muscles
- psychosocial or emotional stress: conflicts in the family or partnership, mental stress in everyday life and at work, psychological trauma, experiences of loss, offenses, eating disorders – either at the moment or long ago in childhood
- Experts also discuss links to other diseases associated with an overactive, misdirected immune system. These include allergies, atopic diseases (for example neurodermatitis), histamine intolerance or autoimmune diseases. However, the correlations have not yet been sufficiently proven scientifically.
Symptoms: vulvodynia is usually painful
The symptoms of vulvodynia vary from woman to woman and also vary in severity. The discomfort can occur spontaneously without any trigger, but also due to pressure, friction or touch. This mechanical irritation takes place, for example, through sex, cycling, prolonged sitting, and wearing panty liners, tampons, and tight clothing.
- Burning sensation that may extend to the clitoris and anus
- Pricking – like with fine needles or a knife
- Pain – it can start spontaneously or with touch and penetration
- Feeling of dryness or soreness
- Pain during sexual intercourse when the partner penetrates the vagina – usually in the area of the vaginal entrance. Sometimes penetration is not possible at all because of the pain. The pain can last for hours or even days.
- Some women cannot sit down or walk without pain – symptoms improve only when lying down.
- Irritated, reddish-purple discolored and swollen mucous membranes in the intimate area
- Sometimes very fine cracks (fissures) form in the mucosa – often at the posterior vaginal entrance after sex
- Burning sensation during and after urination – it may last for several minutes
- Urination problems: frequent urination, delayed or weak urine stream, immediate urine leakage, incomplete and difficult bladder emptying. These problems are related to increased tension in the pelvic floor muscles.
- Accompanying symptoms can be: Difficulty falling asleep or sleeping through the night, frequent brooding, nightmares, anxiety disorders, panic attacks, depressive moods, depression, burnout.
Not every woman with vulvodynia necessarily experiences all symptoms. Also, the discomfort is not always the same, but changes throughout the day. They often intensify in the afternoon to evening. At night and in the morning, on the other hand, they are felt less intensely. The menstrual cycle can also influence the expression of symptoms. They often increase just before or after menstruation. Cold, humidity, physical activity and stress can also increase pain.
Women with vulvodynia have often suffered for a long time – with countless visits to various doctors and treatments that did nothing. Simply because the diagnosis was not correct. The clinical picture of vulvodynia is not yet well known to some women, but also to professionals. The diagnosis of vulvodynia begins with a discussion of your medical history, the anamnesis. We are interested in the following questions, among others:
- What exactly are your symptoms?
- When did they first appear?
- How often do you have these complaints and how intense are they? e.g. on a scale of 0-10, where 0 means no pain and 10 means maximum pain
- Where exactly would you locate the symptoms?
- Are there situations in which the symptoms improve or intensify?
- How would you describe your sex life and partnership?
- Do you have any known diseases?
- Are there underlying diseases in your family?
- Have you recently or in the past had an injury or surgery?
- Do you suffer strongly from psychological or emotional stress – now or in the past?
- Do you take medication regularly? If yes: Which ones and since when? (for example, psychotropic drugs)
- Have you already undergone treatment (for example, psychotherapy) for your complaints?
Your answers already provide initial clues for the diagnosis of vulvodynia. This is followed by a physical (gynecological) examination. We carefully look at the external and internal genital organs and palpate them with a cotton swab (Q-tip test). This allows us to better define which areas are sensitive to pain, itching or burning. In this way, we can reveal provoked vestibulodynia, for example, because the tissue is sensitive to touch and pressure. Sometimes vulvodynia causes the vulva tissue to be red and inflamed. We can also detect infections and skin diseases.
Sometimes a swab and microbiological analysis are helpful, for example when infections with fungi or other pathogens are suspected. A tissue sample (biopsy) can also provide further information. We then examine the cells under the microscope. Indications of vulvodynia are provided, for example, by mast cells, which are involved in the defense against pathogens and allergies. However, it is not uncommon to find no change and pain is not easily detected under the microscope.
In addition, it is important to rule out other diseases as the cause of the complaints. An example is pudendal neuralgia in unilateral vulvodynia. By this we mean a chronic pain syndrome affecting the supply area of the pudendal nerve. There is one pudendal nerve on the right and one on the left, which supplies, for example, the pelvic floor muscles and the skin of the buttocks, genitals and perineum. We also need to rule out allergies, skin diseases or autoimmune diseases.
We diagnose vulvodynia when.
- the pain in the vulva area has persisted for at least three months,
- painful, burning or suddenly shooting sensations of the vulva occur in varying intensity and
- there is no visible damage or alteration of the external genitalia.
Vulvodynia: prevention, early detection, prognosis
The causes of vulvodynia are still largely unknown. Therefore, there are no measures to prevent the disease. There is also no specific medical screening. Therefore, the general advice is: always go to the doctor if you have persistent discomfort in the intimate area.
If you suspect vulvodynia, find a doctor who has experience with the condition. Help in the search is offered by the Swiss organization vulvodynie.ch. This may save you from the often frustrating “doctor hopping”.
Course and prognosis in vulvodynia
The course and prognosis of vulvodynia cannot be generally predicted. They vary from woman to woman. However, there are many treatment options available today that can improve the symptoms. Often it is an interaction of several therapies which lead to improvement or cure of vulvodynia. This often makes normal everyday life and work possible again. Quality of life and enjoyment of life also often return with the right treatments.
Vulvodynia: treatment with multiple strategies
The treatment of vulvodynia is based on several pillars. In addition, there are some tips for affected women that they can use to improve vulvodynia themselves.Professionals treat the symptoms using various strategies that they usually use in combination to increase effectiveness, such as medication, pelvic floor muscle training and psychotherapy. “Multimodal therapy” is the technical term for this. However, which treatments are considered varies from individual to individual. There is no “one” therapy or combination that helps all women equally. It depends on the symptoms, but also the suspected causes of vulvodynia. You may need to try several treatments and see which ones work best for you. And you need to have a little patience – the treatments don’t always have the desired effect right away. Newer treatment options for vulvodynia include the use of a laser device. These treatments can also be offered at the USZ. Since laser therapies for this indication are not yet covered by health insurance, a cost approval must be obtained in advance if required.
Treatment usually involves physicians from several specialties, such as gynecology, urogynecology, dermatology, neurology, reproductive endocrinology, pain medicine, sex therapy, physical therapy, psychology, or psychiatry.