What is Persistent Genital Arousal Disorder (PGAD)?
Persistent Genital Arousal Disorder (PGAD) is a rare disorder that affects mostly women and interferes tremendously in social settings, work, relationships and overall happiness. This article will talk about what PGAD is, treatment options, resources, and similar disorders.
Persistent Genital Arousal Disorder: What Does It Mean?
PGAD is when a woman, and in some small cases, men, experiences arousal that is spontaneous without any precipitating cause. In other words, it is not linked to sexual arousal and does not go away after orgasm. It can last from several hours to several days at a time with little relief in between. Women with this disorder are not necessarily more sexually active as the arousal is not from being sexually aroused, but rather it is a physical symptom. In contrast, many women avoid sex due to the frustration of not getting relief from an orgasm. It should be noted that there are a handful of cases that have involved men.
Stats: How Many Suffer from this Disorder?
It is unknown how many women suffer from this disorder, but to date, there are few women who report it. There are thought to be more than 7,000 women who suffer from this disorder, often in silence. It is thought that more women suffer from this but avoid reporting it or seeking help due to lack of knowledge or feelings of embarrassment.
What Causes PGAD?
No one knows what causes PGAD, however, there have been cases where PGAD has resulted from the following:
- Tourettes Syndrome
- Tarlov Cysts
- Trauma to the central nervous system
In some women, PGAD is exacerbated by stress. Once the stress is decreased the intensity of PGAD may also decrease.
PGAD has also been linked to sudden withdrawal of SSRI’s or antidepressants. There have been a number of women who say they have developed PGAD after stopping these medications suddenly.
Signs and Symptoms of PGAD
Symptoms of PGAD are:
- Irritation, throbbing, pain or pressure in the genitals
- Vaginal contractions
- Blood flow that has increased to the vaginal walls
- A feeling of tingling in the clitoris
- uncontrolled orgasms (spontaneous)
What are the Common Behaviors/Characteristics?
Women that have PGAD typically will feel sensitivity in their nipples and genital area. They become aroused with or without sexual activity and will often say that they can be cooking, walking down the street, working, or other non-sexual activities when they feel aroused. This is in the absence of sexual thoughts. Most women find these feelings unwanted and intrusive in nature and causes a great deal of stress in their lives. PGAD has been linked to depression, isolation, and suicidal thoughts. There have been a few cases where women actually committed suicide after having this disorder for many years with no relief.
PGAD and Other Conditions
PGAD was once known as PSAS (Persistent Sexual Arousal Syndrome) but it was later changed to PGAD as the later suggested it resulted in or was an increase in sexual desire.
PGAD vs Nymphomania
Nymphomania is different than PGAD in that nymphomania is a woman who is hypersexual or a greater need for sexual satisfaction. With PGAD, women are not more sexual than women without it and often experience physical and psychological pain as a result, unlike being hypersexual.
PGAD vs Satyriasis
Satyriasis is the male version of Nymphomania which means a man that is hypersexual. This is different because someone with Satyriasis likes having sex a lot as opposed to PGAD where a person does not necessarily want sex a lot.
Priapism is related to PGAD in that it is a male genital arousal disorder. It is a consistent penile erection that may or may not be caused by sexual arousal and is not relieved by orgasm.
Example Case of PGAD
Mary is a 38-year-old woman who has had a relatively normal sex life until now, when she begins experiencing spontaneous arousal in her genitals. She notices that it is not relieved by sex, nor is it something that she likes. At times the pain from the constant arousal is so bad that urinating is a chore. She notices symptoms that include wetness, pressure, and feelings of being on the verge of an orgasm most of the time. For Mary, the symptoms are distracting and cause her a great deal of anxiety and stress when in the presence of others. She talks to her husband about it and they make an appointment with her gynecologist who, after giving her a full exam and find no abnormal findings, refers her to a specialist in the area that knows about this disorder. Mary is treated, however, her symptoms never completely go away. Instead, she learns to manage her symptoms through therapy and support from her family.
How to Deal/Coping With PGAD
Due to the lack of knowledge in the community about this disorder, many women feel alone and suffer in silence. It is helpful for women to enlist the help of family and friends as well as educate themselves and family members on the disorder in order to have support. Seeking counseling has also proven to be helpful for some women. Exploring and ruling out other medical issues is important to ensure there are no medical problems that have caused this disorder.
Look out for These Complications/Risk Factors
It’s important to seek medical treatment to rule out any other medical conditions. Therapy will be helpful to learn how to manage the symptoms and therefore should be sought to prevent depression and anxiety. This is not a disorder that should be dealt with alone as it can cause increased frustration and depression.
It should also be noted that when seeking medical treatment, to make sure you find a doctor that has some familiarity with this disorder or can refer to someone who does. Due to the lack of knowledge about this disorder, many times doctors who are not familiar with this disorder don’t see PGAD as a real disorder and may not treat it correctly.
Cognitive Behavior Therapy (CBT) can be helpful for women to explore triggers and also learn coping skills to assist with living with this disorder. Often times learning how to decrease stress can prove to be helpful. In some cases, ECT (electroconvulsive therapy) has been used but usually only in severe cases. When it has been determined that the woman has Tarlov Cysts, sometimes surgery has been used to remove the cysts which in turn will relieve the symptoms of PGAD. Some women have found relief using ice on the affected area or numbing agents, however, it should be noted that both of these should be used at the discretion of a medical doctor.
Possible Medications for PGAD
Anti-seizure medications, as well as antidepressants, have proven to be effective in treating the symptoms of PGAD. If all medical conditions have been ruled out, it is thought that PGAD may be brought on by psychological stress. Antidepressants can relieve depression and help to alleviate some symptoms.
Home Remedies to help PGAD
Reducing stress has been known to be of some help and using an ice pack on the affected area might be helpful but you should seek medical attention first to rule out other medical conditions. Some patients have found some relief using an analgesic on the affected area to help numb the sensations.
Living with PGAD
Living with PGAD can be very stressful and can sometimes bring shame or embarrassment to the person affected when they do not know where to turn. Finding support from those who are close to you and also seeking medical treatment is helpful and may relieve some stress. Support groups are also a good way to talk with others who are going through the same thing. Often times you can find online support groups as well.
Insurance Coverage for PGAD
Most insurances will cover this disorder, as the first thing is usually to rule out any medical conditions related to it. Therapy and medication treatment are the most common forms of treatment and are also covered by most insurances. Be sure to talk to your doctor about treatment options and what is covered.
How to Find a Therapist
You can locate a Licensed Therapist by searching online at www.psychologytoday.com or www.goodtherapy.org. Both of these sites will allow you to search for a therapist by location, specialty, and insurance. Most therapists list themselves and/or their practices on this site. Your medical doctor may also be able to refer you to a therapist that they work with.
What Should I be Looking for in an LMHP?
When searching for a Licensed Mental Health Professional, a person should search for someone who specializes in sexual disorders and/or Cognitive Behavior Therapy. The LMHP should be licensed and have some experience dealing with PGAD as well as be knowledgeable about treatment options.
Questions to Ask a Potential Therapist
Questions to ask a potential therapist when seeking treatment for PGAD are:
- Are you knowledgeable about PGAD?
- Have you ever treated anyone with PGAD, and if so, how many people?
- What are your treatment approaches for someone with PGAD?
- Do you accept my insurance?
Finding a therapist that you are comfortable talking to is key to helping to cope with this disorder. A therapist should be willing to listen to you and involve you in the treatment process as much as possible.
PGAD Resources and Support Helpline
For resources and support for PGAD, please visit their website at www.pgad-support.com. To reach someone at this organization, it is recommended that you contact them by email at [email protected]. Information and support can also be found by contacting the Genetic and Rare Diseases Information Center at 888-205-2311. They can assist in finding support, resources and information on PGAD.
The lack of research, as well as the lack of knowledge surrounding PGAD, has made it difficult for some women to talk to others. It is important that the person who is affected reaches out to a physician that has some familiarity with this disorder. Women are cautioned to not give up on treatment options for this disorder as there are a variety of things that have helped different people. Educating family and friends and even people in the medical field can prove to be effective in spreading the word about this disorder to hopefully one day bring more research and treatment.