Imagine constantly feeling as if your body is on the brink of orgasm, despite an absence of any sexual desire. This is the struggle faced by those who have PGAD: a debilitating and distressing disorder that predominantly affects women. Read on for an overview of what you need to know about PGAD, from its symptoms and causes to treatment options, tips for coping and advice about how to get help.
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Persistent Genital Arousal Disorder: What Does It Mean?
In PGAD, a person’s genitals become physically aroused despite not wanting to have sex. For many, it feels like their brains and bodies have become disconnected from one another; and often, a flare-up feels intrusive, uncomfortable and embarrassing. In other words, this condition interferes with a person’s ability to live a normal life.
The emotional distress that PGAD causes can be so severe that one may develop symptoms of anxiety, depression, and suicidality. Despite this, many people can and do find effective ways to cope; often this is simply a matter of empowering yourself to reach out for support.
Stats: How Many Suffer from this Disorder?
The statistics show that just under 1% of the population has PGAD. However, it’s likely that the true number is higher than this, given the stigma surrounding the illness which makes women with PGAD less likely to come forward.
Signs and Symptoms of PGAD
- Unwanted physiological feelings of arousal in the genitals that are not linked to sexual desire.
- Symptoms may happen spontaneously, or they may be triggered by manual stimulation of a sexual or non-sexual nature.
- Masturbating provides a sense of temporary relief at best. Usually, symptoms do not disappear completely on their own.
- Symptoms are experienced as intrusive and result in feelings of emotional distress.
What are the Common Behaviors/Characteristics?
A PGAD flare-up makes you feel as if you’re physically aroused, even without the presence of any sexual thoughts or desires. Often, this includes contractions, itching, tingling, tightness, pulsing and pain in the genital areas, as well as vaginal lubrication.
This can make you feel as if you’re constantly about to climax; and some women have orgasms automatically, without any stimulation. However, these feelings are unwanted, intrusive and completely separated from any sexual desire, which means that this whole experience is distressing, distracting and humiliating rather than pleasurable.
How long does an episode last? For some, the symptoms last for minutes or hours, while for others it can last for days or even weeks at a time. Often, after an episode, the symptoms may let up slightly, but they don’t resolve completely on their own.
This disorder can really interfere with your emotional wellbeing and your ability to live a normal life. For example, many women feel shameful, distracted, embarrassed and disconnected from themselves. It’s not surprising, then, that PGAD is linked to psychological conditions such as anxiety, insomnia, and depression. Many people with PGAD are reluctant to speak about their symptoms to friends, family, or health care providers, making it harder for them to get the support that they need.
Example Case of PGAD
Sarah was 29 years old when her doctor referred her to see a psychologist. A year earlier, Sarah started experiencing tingling, pulsing and painful tightness in her genital area; along with occasional orgasms that happened spontaneously. Usually, the symptoms came out of the blue, but sometimes they were triggered when she rode her bicycle to work or after having sex with her partner.
During a flare-up, Sarah felt as if her body was in a constant state of pre-orgasm. This was incredibly uncomfortable: it stopped her from sleeping properly and from being able to focus and function at work. The symptoms would last for days at a time and she was confused and worried as to why her body was responding this way, even though she was not thinking about sex at the time.
The whole experience was incredibly frustrating for Sarah. The only thing which seemed to give her a sense of temporary relief was masturbation – and she would spend up to an hour each day doing this in the hopes of getting some relief. Nonetheless, the feeling of tension in her genitals usually came back within a few minutes of masturbating, leaving her feeling exasperated and hopeless.
Soon, she stopped having sex with her partner because this seemed to make her flare-ups worse. She was too ashamed to disclose to her partner what was going on; and their relationship started to suffer as he felt that she was no longer interested in him. Eventually, when Sarah started experiencing suicidal thoughts, she worked up the courage to consult with her general practitioner. Her doctor was very supportive and together they agreed that Sarah would benefit from speaking to a psychological therapist who could support her in coping with PGAD.
What Causes PGAD?
The short answer is that we don’t yet know exactly what causes PGAD. Despite this, several possible causes have been identified. For example, PGAD may be caused by neurological factors, because the symptoms sometimes present themselves after a head injury or brain lesion. Pundendal neuralgia is another possible cause: the Pundendal nerve sends to the brain from the genital areas and it may become damaged during surgery, childbirth or following an injury.
In some people, PGAD appears to be caused by the presence of Tarlov cysts, which are fluid-filled sacs found on the sacral nerve root. This nerve is responsible for sending information to the bladder, colon and genital areas; and one study found that 66% of women with PGAD presented with Tarlov cysts.
Finally, stress can cause a flare up of symptoms in some women, which has led researchers to think that the disorder may have a psychological cause. Some women have also reported that their symptoms began after they stopped or started SSRIs – a form of antidepressant medication.
PGAD and Other Conditions
PGAD was previously known as Persistent Sexual Arousal Disorder (PSAD). However, the name was changed because it’s not entirely accurate: people with this condition don’t actually experience sexual arousal during a flare-up. This means that it needs to be differentiated from other sexual disorders, such as Hypersexuality.
PGAD vs Nymphomania
Nymphomania (now called Hypersexuality) is diagnosed when a woman experiences extreme and uncontrollable sexual urges. Although people with PGAD are sometimes confused with nymphomaniacs, the two disorders are different: in PGAD there is an absence of sexual desire, whereas with nymphomania the opposite is true.
PGAD vs Satyriasis
Satyriasis is the male’s version of nymphomania: it describes men with an unusual and extreme desire for sex. While PGAD is occasionally diagnosed in men who experience unrelenting erections, these are not accompanied by sexual cravings.
Researchers have recently discovered a close link between PGAD and Restless Legs Syndrome (RLS) – a neurological condition in which you feel a sense of agitation and discomfort in your legs. Many people with PGAD also have RLS, as well as an overactive bladder. When all three of these difficulties are present at the same time, you may be given a diagnosis of Restless Genital Syndrome (ReGS), because it is believed that all three may be caused by a similar underlying neurological problem.
How to Deal/Coping With PGAD
The first step in coping with this condition is finding some support: you don’t need to carry this burden on your own! This might be a matter of consulting with a psychologist, finding a support group or even speaking to a doctor or other health professional that you feel comfortable opening up to. Together, you will be able to explore ways of minimizing the discomfort and distress that you experience as a result of PGAD.
Look out for These Complications/Risk Factors
PGAD can seriously interfere with your wellbeing and quality of life, potentially putting you at risk of suicidal behavior. If you find yourself considering suicide, it’s important that you reach out for support as soon as possible. Contact your nearest emergency room or health professional. Alternatively, call 911 or search online for your closest suicide prevention organization.
Although there is no official cure for this disorder, there are several treatment options that can help you to cope with and calm your symptoms. These range from medication or pelvic floor physical therapy to seeing a therapist or even having surgery (when Tarlov cysts are suspected as the cause). Read on to learn more.
Possible Medications for PGAD
Medications that have been successfully used to treat PGAD range from antidepressants and pain-killers to nerve-pain medication and even Botox. Speak to your doctor about options that could work for you.
Home Remedies to help PGAD
For some people, applying ice or a prescribed anesthetic gel provides a sense of relief. For others, swimming in a pool, taking a bath or applying a hot-water bottle can help. Additionally, if your job involves sitting for extended periods, you may want to invest in a donut cushion as this will help reduce pressure on your genitals.
Distraction is also a simple and effective way of taking your mind off the experience when it happens. Listen to your favorite music, take a walk in the park or meet a friend for coffee: these are all simple distraction techniques that can work wonders in alleviating your discomfort.
Living with PGAD
An important part of living with this condition involves learning to identify and avoid what triggers your symptoms. For example, many people say that horse riding, cycling, wearing tight clothing or traveling on the bus can set-off or worsen their symptoms.
Stress also tends to make PGAD symptoms worse, and living successfully with this condition means finding effective ways to manage your emotions. This might involve seeing a licensed psychologist for support. Therapy techniques such as cognitive behavioral therapy and mindfulness interventions are likely to help you manage your physical symptoms; as well as reducing feelings of shame, guilt or anxiety.
Insurance Coverage for PGAD
PGAD has not yet been recognized as an official disorder, likely because not enough research has been done on it yet. For this reason, some health insurance companies will not cover it. However, if your insurance incorporates a mental health plan, a medical professional may be able to motivate for you to receive coverage, especially if you have secondary symptoms of depression, anxiety or emotional distress. Speak to your insurance company to find out what coverage options might be available.
How to Find a Therapist
If you feel comfortable speaking with your general practitioner, they may be able to offer you a referral to a recommended mental health professional. Alternatively, an online search will likely yield information about practitioners in your area; or else your health insurance company might have some suggestions. Finally, you could also visit the PGAD Support website, which provides a document (under files and resources) listing healthcare providers that have experience with PGAD.
What Should I be Looking for in an LMHP?
- Find someone that you’re comfortable talking to! Often, you will be able to get a sense in your initial meeting as to whether you feel comfortable in the presence of this person. It’s not always easy to open up about PGAD, so try to connect with someone nonjudgmental, sensitive and empathic.
- Find someone with the right experience. PGAD is a specific problem that not all health practitioners have necessarily encountered. Ideally, you would want to consult with a therapist who has experience treating PGAD or related conditions.
- General practitioners and other medical professionals usually have a sense of who’s out there and who comes recommended. So, asking for a referral or recommendation can be helpful. Alternatively, connect with other PGAD sufferers to see if they have any suggestions.
Questions to Ask a Potential Therapist
- Have you worked with PGAD or similar conditions?
- What forms of therapy do you practice?
- What form of therapy would you recommend for treating PGAD?
- In what ways could treatment help me?
- What time slots do you have open and how often would we meet?
- What are your rates?
- Would my treatment be covered by my health insurance, partially or entirely?
PGAD Resources and Support Helpline
- Online resources for supporting people with PGAD: http://www.psas-support.com/main/
- Facebook support group: https://www.facebook.com/groups/176572735863982/ (the group is private, so you may need to answer some questions in order to be approved)
- National Suicide Prevention Lifeline: 1-800-273-8255
- National Institute of Mental Health: https://www.nimh.nih.gov/index.shtml