Demystifying Persistant Genital Arousal Disorder (PGAD)

PGAD photo

Fiona McMahon PT, DPT

Hello, everyone. Today I want to discuss a condition called Persistent Genital Arousal Disorder (PGAD). PGAD is an often sensationalized, painful, and disruptive condition that causes unwanted genital arousal, which doesn’t typically get better with orgasm and if it does, orgasm only brings relief for a short period of time. The key feature of this disorder is the genital arousal is unwanted and can cause deep psychological distress.

Typically when I write blogs, I will spend the lion’s share of my time sifting through scholarly articles, general health articles targeted at the general public, and maybe I will read one or two essays or editorials written by people with that particular condition. The process for writing this blog went a bit differently.

I was researching a condition that had only been first classified in 2001. There really was a small pool of articles from which to pull. I also had to sift through a lot of garbage. There were titles like “ Woman has 100 orgasms a day”, click bait, on click bait, on click bait. I thought of my patients and women and men, who are just starting their journey, not knowing where to start. Frankly, I was sad. I can’t think of a more eloquent way to say it: the web can be a real garbage pit sometimes. I can imagine how hopeless it might feel scouring the Internet for answers.

The good news is, I did not end my research sad. I ended up finding some great articles, but most importantly I listened to a fabulous Pelvic Messenger podcast with our very own Stephanie Stamas PT, DPT with guest Dr. Irwin Goldstein, MD, on PGAD. I ended my research feeling empowered, and it is my hope through this blog and additional resources I have provided, that you will too. If you have found your way here because you have or think you may have PGAD, please, do yourself a massive favor and give this podcast a listen. I will be breaking down so me of its points in this blog, but what the podcast does so well, is give hope.

Let’s go ahead and read on, and learn more about PGAD and how to manage it.

What Causes this Condition?

PGAD can affect people with both male and female anatomy. As Dr. Goldstein explains in the pelvic messenger podcast, It is more common in individuals with female anatomy, secondary to the fact the people with female anatomy have a shorter refractory period. The term refractory period refers to the interval of time that is required between an individual’s first orgasm and when they are able to become sexually aroused again. People with male anatomy tend to have longer refractory periods, allowing them some relief between bouts of arousal.

There are many factors that are thought to contribute to PGAD. It used to be considered more of a psychological disorder. Over the past 16 years, researchers have found that the development of PGAD can be influenced by stress, but there usually is some sort of anatomical or physiological factor contributing to the development of this condition.

The Role of the Brain

Like we discussed before, stress is a contributor and trigger to PGAD symptoms. Additionally, one of the criteria in diagnosing PGAD is that the genital arousal causes distress. Examining stress triggers and managing the stress of the disorder itself is paramount to effectively managing PGAD, especially if it is taking time to determine what physiological intervention will help treat the symptoms.

There also is some discussion that the sensations that trigger PGAD are processed differently in the brain. Disruptions in the vulvar, penile, or scrotal tissue, nerve compressions, pelvic congestion, etc may be processed in the “action” areas of the brain and may be interpreted as or cause arousal, when in fact, there is a physical condition irritating that delicate tissue that must be addressed.

Studies have also found a connection with PGAD suffers and individuals with restless leg syndrome. In a 2008 study PGAD and restless leg syndrome were found to be correlated. Restless leg syndrome bears some similarities to PGAD in that sufferers often feel they need to take action, like moving their legs, adjusting their position, and in individuals with PGAD, obtain orgasm for momentary relief. These findings amongst others support the theory that the brains of individuals with PGAD may interpret sensory signals differently that those without the condition.

Medication, Pearls, Back Problems, and Cysts

Now that we have talked about a potential explanation for persistent genital arousal as it relates to the brain, let’s talk about some of the physiologic contributors. The first factor found to be correlated with PGAD has to do with what we put in our mouths. There had been some evidence to support that increased soy intake may affect the development of PGAD. Also certain medications and withdrawal from them may also contribute to PGAD. Trazadone has been found to contribute to priapism (persistent and painful erection of the penis) in individuals with male anatomy and may also contribute to PGAD in individuals with female anatomy. There also has been a correlation with sudden withdrawal from selective serotonin reuptake inhibitors, (SSRI’s), a form of antidepressant, and the development of PGAD. We always have to remember the old adage that is familiar to anyone who has been taught to consume scientific literature that, “Correlation does not equal causation”. It’s really important to remember that phrase with PGAD, because there are many correctable physiological conditions that also contribute to PGAD.

Keratin pearls, sounds lovely, right? Not so much, and these bad boys are a big factor in the development of PGAD and other pelvic pain syndromes. Keratin pearls develop when the normal products of the vulvar tissue collect and harden under the clitoral hood. As you can imagine, having a keratin pearl is super irritating to this extremely sensitive tissue, not unlike having a piece of sand caught in your eye. This constant stimulation can certainly contribute to PGAD symptoms. Keratin pearls can be removed by an experienced doctor and bring relief for PGAD.

In pelvic floor physical therapy land we think a lot about the pudendal nerve. The pudendal nerve transmits sensory information from our genitals to our brain and gives our pelvic floor muscles instruction from the brain. The pudendal nerve comes off the sacral nerve roots, S2, S3, and S4, (remember this for later). This nerve can become compressed from tight muscles and fascia and can cause PGAD symptoms.

Physical therapists and other clinicians also think about the various “dynias”. Dynia is the Greek word for pain. In relation to PGAD we often think of clitorodynia, vulvodyina, and vestibulodynia referring to pain in the clitoris, vulva, and vestibule respectively. These “dynias” can be caused by irritated nerves, hormonal conditions and overactive pelvic floor muscles and should be addressed in order to help treat PGAD. Additionally, other pelvic syndromes like pelvic congestion can contribute to PGAD.

Do you remember the nerve roots for the pudendal nerve? It’s okay if you don’t. They are the sacral nerve roots S2, S3, S4. Your sacrum is part of your spine and problems in your back like a slipped disc, irritable facet joint, stenosis can all be culprits in irritating these very important nerve roots.

There are these things called Tarlov’s Cysts which recently have been found to be huge in the development of PGAD. Tarlov’s cysts are little sacs filled with cerebrospinal fluid and they can irritate those important nerve roots, S2, S3, and S4. In 2012, it was found that the rate of Tarlov’s cysts is exceptionally high in individuals with PGAD. Management of these cysts can help with this disorder.

Treatment Options and Finding the Correct Practitioner to Connect you to Those Options

So there is a lot of stuff to sort through when trying to figure out where your PGAD is coming from. It requires a skilled clinician to separate the signal from the noise. At Beyond Basics Physical Therapy, we are especially poised to help you get started on the correct treatment path.

Unlike many other clinicians, we are comfortable assessing things like the mobility of the clitoral hood, mobility of the structures surrounding the pudendal nerve and other pelvic nerves, as well as being able to treat issues involving the back and tailbone. We also have strong and robust connections to physicians who are pioneers in the treatment of PGAD and can help facilitate access to complementary medical treatment.

The most important part of treating PGAD is finding the cause, or the driver. Once the driver or drivers are found, you can begin the process of treating them and reducing PGAD symptoms. Dynias, clitoral adhesions, pelvic floor congestion, back issues and irritation to a pelvic nerve can be treated by physical therapy or a combination of physical therapy and medical intervention. Tarlov’s cysts may require surgery to correct. Additionally medication to reduce the symptoms, mental health therapy and relaxation techniques can be helpful.

PGAD used to be such a mystery and in some respects, it still is; however we are in a very exciting time, where knowledge about PGAD is growing as well as our ability to diagnose and treat this disorder. The internet is a very scary place to research PGAD and it can be hard to find almost anything hopeful or positive, but there is hope. Give the Pelvic Messenger Podcast a listen and make an appointment to see us here at BBPT today.

Charitable Giving Options to Support Research and Treatment

Like many pelvic pain conditions, PGAD is under researched. Research is an essential weapon to help us fight PGAD and improve individual’s lives. Please consider donating to the following organizations to fund the development of diagnosis and treatment protocols for PGAD and other pelvic conditions. Also, consider having your company or a friend’s company match you donation.

Donate to support pelvic pain research here:

International Pelvic Pain Society : IPPS https://wjweis.association-service.org/securesite/ipps/donations.aspx

International Society for the Study of Women’s Sexual Health ISSWSH; http://www.isswsh.org/about/endowment-fund

Sources

Aswath M. Pandit L, Kashyap K. et al. Persistent Genital Arousal Disorder. Indian J Pyschol Med. 2016; 38(4)

Jewell T, Legg T. What is persistent genital arousal disorder (PGAD?). Healthline. 2017 [Accessed: November 13, 2017]

Komisaruk B, Lee H. Prevalence of Sacral Spinal (Tarlov) Cysts in Persistent Genital Arousal Disorder. J Sex Med. 2012 Aug;9(8):2047-56.

Stamas, Stephanie. “ Dr. Irwin Goldstein: Treating Persistent Genital Arousal Disorder (PGAD).” Audio Blog Post. Pelvic Messenger Podcast. Blog Talk Radio. March 2017

Waldinger M, Schweitzer D. Persistent Genital Arousal Disorder in 18 Dutch Women: Part II- A Syndrome Clustered with Restless Legs and Overactive Bladder. J Sex Med. 2008

The Special Care Needs of the LGBTQ+ Community

Amy Stein PT, DPT and Fiona McMahon PT, DPT

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Who are LGBTQ+ individuals?

At Beyond Basics Physical Therapy, we have been meeting and studying with experts about the LGBTQ + community. LGBTQ+ refers to individuals who do not identify as heterosexual or do not identify as cis- gendered (although these two categories are not mutually exclusive). Cis-gender means you identify with the genital anatomy you were born with. People who belong to the LGBTQ+ community can be cis-gendered (meaning they identify with the genital anatomy that they were born with) and be gay/lesbian/ bisexual/ questioning etc.  They can be trans-gender and heterosexual or some combination thereof. Basically LGBTQ+ is a term that includes people who are not both cis-gender and heterosexual. LGBTQ+ is an acronym for lesbian, gay, bisexual, transgender, queer/questioning, and other individuals.  

Never Assume. Listen, Ask.

We were excited to understand and learn more about how we can help, specifically with patients experiencing pain or weakness in the pelvic floor. We met with an LGBTQ + advocate and he recommended the following when it comes to treating patients both within and outside the LGBTQ+ community.  First rule of thumb:  with all patients, don’t assume and be open to any questions or discussion. Ask if your patient would like you to stay away from certain terms regarding their anatomy, as well as their preferred gender pronoun. Use language that they want us to use.

 As with all patients, we need to use a biopsychosocial approach. With any patient, Richard Green at Bellevue hospital says that we always want to know exactly what is going on with our patient. We must subjectively understand why they are visiting us.  Has there been trauma, surgery, complications, or anything that has worsened their symptoms? What hormones and medications are they on? Don’t single anyone out. These questions are important for every patient.  

We want to get the medical and surgical history during or prior to the visit. There is no standard one surgical procedure or hormonal protocol in Trans care. Hormones, either testosterone, estrogen, Lupron, puberty blocking, GNRH can be used in many patients, but are also used specifically to aid in transition in Transgender patients. Many hormones have consequences or side effects and our patients need be educated on the various options.  There is research on hormones and bodily changes, however there is no good research on how the hormones affect the pelvic region. Anti-estrogen hormones may result in vaginal drying and atrophy, more tissue tearing, and pain with penetration.  Endometriosis can be worsened with testosterone hormones.  Hormones can be administered via injection, pellets, patches, creams, gels, and pill form.  It’s important to realize side effects and risks of hormones for each patient. Dosage depends on body type, weight, previous surgeries, etc.  Hormone therapy can be given by a primary care provider or endocrinologist; however, many are not familiar with a specific protocol but at the same time each person may have different goals.  Progression of hormones can be monitored for each patient and according to patients wants and needs.  

For those who opt for surgical transition, it can result in pelvic pain and or weakness as organs are moved and or removed. Like we mentioned before, there is no one surgical protocol and it will vary from surgeon to surgeon, from changes in hormones from the removal of certain organs.  Knowing what tissues have been removed or moved and or where scar tissue could have been formed, is important to addressing a patient’s complaints. Also, it’s important to ask if the patient was having these symptoms or pain prior to any of the surgeries or hormonal medications. Surgical transition can take a long time with various surgeries and various symptoms that arise throughout. Some issues that  can occur are fistulas or fissures and when dealing with nerve implants there could be nerve damage and restrictions.

 

How is care for the LGBTQ+ community funded and regulated?

Medical coverage for the LGBTQ + community is non-regulated and different in each state. The Affordable Care Act, (ACA) covers some therapies and surgeries. You can try to appeal with each insurance which have their own policies on gender affirming care.

How can physical therapy help?

At Beyond Basics Physical Therapy, we specialize in abdomino-pelvic disorders, including pain, weakness, bladder, bowel and sexual dysfunction.  We also specialize in orthopedics and functional manual therapy.  We treat the LGBTQ+ community and we welcome any questions at desk@beyondbasicspt.com or call 212-354-2622. We are happy to help and look forward to hearing from you!
Resources: Center of excellence for transgender health.

WPATH center for care Endocrine Society

  • speaks on hormone therapy (however some information may be out of date).

 Adolescent Health Center

World AIDS Day

earth-earth-at-night-night-lights-41949

Today, December 1st 2017, is World AIDS Day. World Aids Day has been held on the first of every December since 1988. World AIDS Day works to spread awareness of the disease and to remind the general public that AIDS and HIV still must be taken seriously and that there is still a lot of work to do in order to prevent the transmission of new cases, as well as to better care for those who are infected with the disease.

What is AIDS/HIV?

AIDS (acquired immunodeficiency syndrome), is caused by a virus called human immunodeficiency virus (HIV). HIV can be treated in order to prevent AIDS, however there is currently no cure for HIV.

HIV causes AIDS by attacking the immune cells of a person’s body, which can leave a person vulnerable to infections that otherwise would not have made them sick. These infections are referred to as opportunistic infections, an opportunistic infection is a signal that someone’s HIV may have progressed into AIDS.

As said earlier, HIV doesn’t always have to progress to AIDS. Antiretroviral therapy (ART)  can work to help keep the immune system healthy, as well as lower the risk of transmitting the virus to others. People on ART have dramatically improved lifespans. It is imperative to get on ART as soon as possible to lessen the effects the HIV virus has on your immune system.

HIV Testing

1 in 7 people infected with HIV do not know they have the virus. Testing is necessary to start treatment and reduce harm done to your immune system as well as risk of transmission to others.

According to AIDS.gov, you should be tested if:

  • You have had sex with someone who is HIV positive, or someone whose status you were unsure of since your last test
  • Had tuberculosis or hepatitis
  • Used shared needles
  • Been diagnosed with another type of sexually transmitted disease

HIV/ AIDS and Physical Therapy

Physical Therapists do not treat AIDS or HIV, rather, they treat the symptoms of AIDS/HIV and HIV/AIDS treatment to allow patients to live as fully and independently as possible. Both the disease itself and the treatment for it have effects like increasing fatigue, decreasing strength and endurance, and increased pain. Physical therapy can help by tailoring programs to help with pain, ability to perform everyday tasks, improve heart health, balance, endurance, strength and flexibility.

You can mark today by doing a number of things:

Wear a red ribbon to spread awareness

Donate to groups that work to help people living with AIDS and help to prevent its transmission:

United Nations (UN AIDS)

https://donations.unaids.org/

UNICEF

https://www.unicefusa.org/donate/support-unicefs-hivaids-programs

Sources:

AIDS.gov

Resources:

HIV/Screening:

National HIV Testing database: https://gettested.cdc.gov/