Vaginismus & Vulvodynia: how to cope, and how they relate to endometriosis and PCOS

For those of us with vaginas, there are many reasons why sex, penetration, or just simple touch could be painful. Sometimes the culprit is a lack of lubrication or an infection or inflammation of the genitalia. People with endometriosis may experience painful symptoms due to the build-up of endo scar tissue. But for those who live with vaginismus or vulvodynia, pain is not only persistent but often unexplained. Vaginismus is an automatic bodily reaction to fear of penetration, both sexual or otherwise, wherein the vagina tightens up when penetration is attempted.Vulvodynia refers to vulval pain. It is persistent, unexplained pain in the vulva, or the genital area and skin around the vagina. The two conditions are sometimes present together. Endometriosis or polycystic ovarian syndrome (PCOS) can worsen these painful symptoms, or even be the cause behind them. Vaginismus or vulvodynia, either on their own or in tandem with endo or PCOS, attribute to dyspareunia, or persistent, painful sex. These conditions can cause great emotional harm as well as physical, affecting sex drive, relationships, and mood. Luckily, there is a wide array of treatments available for both conditions, but a lack of education on these issues leads to many people suffering in silence.

Vaginismus symptoms

It is unclear how common vaginismus is. This may be because people are embarrassed to talk to a doctor about their sex lives or because the condition itself is hard to diagnose. In many cases, vaginismus is associated with sexual trauma, which makes it even more difficult to talk about. Common signs of vaginismus include pain and difficulty while inserting a tampon, during vaginal penetration during sex, and a burning or stinging pain during sex. If you’re experiencing any of these symptoms, you should book an appointment with your GP or gynaecologist. You can request a female doctor if desired. At the appointment, your doctor will ask some questions regarding the pain and your symptoms. They might take a quick look at your vagina to rule out any possible infections that may be causing you pain, but it is unlikely that they’ll conduct an internal examination. If they suspect you could have vaginismus, you will probably be referred to a specialist, such as a sex therapist. If not, you can ask to be referred.

Causes & treatment options

Treatment for vaginismus usually includes a combination of physical and psychological care. A specialist or sex therapist will want to help you get to the root of the condition through counselling. This will typically involve talking through your relationship to your body, sexuality, and the act of sex in general. Sometimes a clear cause can be identified, be it a traumatic sexual experience, fear of disease or pregnancy, changes due to menopause, or even early childhood messaging that sex is wrong or dirty. In a response to fear or lack of control around penetration, your body perpetuates an automatic muscle-tightening response as a defence mechanism. This makes psychosexual therapy key to reprogramming your body’s response to penetration. Other mental exercises include mindfulness to help relax the vaginal muscles during moments of anticipation of penetration of any kind. Sensate focus, a branch of sex therapy, involves gentle touching to discover your own sensual mind space free of fear. There is also a field of vaginismus treatment known as pelvic floor exercise, which involves physically training your body to gain control of its vaginal muscles. It involves squeezing and releasing your pelvic muscles, and while often recommended for incontinence and pelvic organ prolapse, it is also helpful in treating vaginismus.

Vulvodynia: symptoms & causes

Some studies have found that as many as 16% of women suffer from vulvodynia at some point in their lives. While the condition usually does not go away on its own, a lot can be done to treat it. The main symptoms are burning, stinging, throbbing or soreness of the vulva. The pain could be triggered by touch, sex or inserting a tampon, but it can also be a constant “background” pain. In some cases, the pain worsens when sitting down. It might be limited to the vulva, but it can also spread to other areas such as the anus. If you’re experiencing any of these symptoms and find that they are impacting your life, it’s time to make an appointment. As with vaginismus, your doctor will go over your medical history and should conduct tests to rule out other causes such as bacterial infections, fungal infections, or skin diseases. Vulvodynia often does not have an identifiable cause. It is speculated that it might be caused by a problem with the nerves supplying the vulva, which can be due to surgery, childbirth, trapped nerves, or a history of severe thrush. Nerves control sensation in the vulva. Other potential causes include genetic abnormalities, weakness or spasm in pelvic floor muscles, or an abnormal response in the vulval cells to infection or trauma.

Treatments

There are small steps you can take every day to relieve symptoms, at least mildly. These include wearing cotton underwear and loose, comfortable clothing, avoiding scented hygiene products, and applying petroleum jelly before swimming to reduce pain triggered by chlorine.

Many topical treatments for vulvodynia are available over the counter, although it is always a good idea to consult a doctor or specialist first. Anaesthetic gels, creams or ointments can be applied before sex to make it more comfortable. They can also be re-applied throughout the day if the pain is constant. As far as painkillers go, ibuprofen and paracetamol may not cut it. Your doctor may recommend you try an antidepressant that can be used to treat chronic pain, or anti-epilepsy medication that is also used to treat nerve pain. If you experience pain in a specific part of the vulva, injections of local anaesthetics or steroids are another option.

As with vaginismus, pelvic floor exercises are also recommended for vulvodynia. You might want to make an appointment with a physiotherapist, who can create a treatment regimen for you in order to relax the muscles around your vagina. Another technique to relax these muscles is to use vaginal trainers, or dilators. These are smooth cones gradually increasing in size and length that can be inserted in the privacy of your own home with the help of lubricant. The goal is to reduce vulval and vaginal hypersensitivity to touch, and retrain tissue around the vagina. Some physios also recommend transcutaneous electrical nerve stimulation(TENS), which is a small device that treats pain through a mild electrical current. TENS is used for a variety of chronic pain, including pelvic pain caused by endometriosis.

For both vaginismus and vulvodynia, talk therapy or cognitive behavioural therapy (CBT) can help if the psychological load becomes too heavy to carry. Vaginal and vulval pain can come with a barrage of emotional trouble: relationship problems, fear of intimacy, lack of self-confidence, and depression. Psychosexual therapy and couple’s therapy can help get to the root of these issues, while individual therapy is often best when done in tandem with other treatments specific to the condition. Access to proper psychological care can be hard to come by, especially if you’re looking for specialists. As always, you can book a consultation with one of our therapists who specialise in pain and sexual health.

The crossover with endo and PCOS

Neither vaginismus or vulvodynia tend to appear out of thin air: often there are psychological and physical causes lurking underneath. This suggests comorbidity, or the presence of two or more medical conditions in a patient. Both endometriosis and PCOS have a history of comorbidity with vaginismus and vulvodynia. According to the Endometriosis Foundation of America, 66% of people with endo will fear sex to some extent. It is not endo itself that causes sexual pain and dysfunction, but the pain and inflammation from the lesions. This pain can cause severe anxiety at the very notion of sex, which is often how vaginismus starts.

For many people with endo, painful sex, anxiety and vaginismus form a vicious cycle. Both endo and PCOS can also take a huge toll on confidence, affecting sexual desire. Severe pain is not conducive to high libido; likewise, for many people with PCOS, symptoms such as hirsutism (increased hair growth), acne and weight gain can hinder self-confidence. There’s also the issue of medication, such as hormonal birth control, which can have a negative effect on libido.

These factors can all contribute to vaginismus or vulvodynia. If you have endo or PCOS, recognising their link to these conditions that affect your sex life, relationships, and self-esteem is an important step in recovery. Both vaginismus and vulvodynia can be treated, either completely eradicating symptoms or reducing them to a significant degree. Dealing with any of these conditions can feel debilitating and frustrating. Luckily you are not alone, and there are communities where you seek support and advice. On our Sora app, you can chat to specialists as well as a large community of people who are also experiencing what you’re going through.

References:

1. https://www.nhs.uk/conditions/vaginismus/
2. https://www.nhs.uk/conditions/vulvodynia/
3. Painful sex what it means and how to help - Syrona Health
4. https://thefemedic.com/sexual-health/sex-therapy-vaginismus/
5. https://health.cornell.edu/sites/health/files/pdf-library/sensate-focus.pdf
6. https://www.nhs.uk/womens-health/what-are-pelvic-floor-exercises/
7. https://www.nva.org/media-center/)
8. https://www.nva.org/media-center/)
9. https://www.ouh.nhs.uk/patient-guide/leaflets/files/30804Pexercises.pdf
10. https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/
11. https://syronahealth.com/support/
12. https://www.britannica.com/science/comorbidity
13. https://www.endofound.org/carli-blau-phd-candidate-endometriosis-and-sexual-functioning