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, 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 of 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 some 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 after orgasm. 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 17 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 than 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, the 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 your 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

Tune in! Blog Talk Radio: Persistent Genital Arousal Disorder

Stephanie Stamas, DPTblog-talk

We have exciting news! Our very own physical therapist, Dr. Stephanie Stamas, will have the honor of interviewing Dr. Irwin Goldstein on the talk radio show, The Pelvic Messenger. Dr. Goldstein is an expert in sexual medicine and world-renown physician specializing in the treatment of sexual dysfunction and pain. He is currently the Medical Director of Sexual Medicine at Alvarado Hospital in San Diego, Director of San Diego Sexual Medicine, Editor-in-Chief for The Journal of Sexual Medicine and President of The Institute for Sexual Medicine.

Dr. Goldstein will be discussing the often-sensationalized topic of Persistent Genital Arousal Disorder, or PGAD. The International Society for the Study of Women’s Sexual Health (ISSWSH) defines PGAD as “a persistent or recurrent, unwanted or intrusive, bothersome or distressing, genital dysesthesia (abnormal sensation) unassociated with sexual interest.” This condition has gotten more and more media attention over the past decade as several magazines have covered individual’s personal struggles. The most unfortunate aspect of PGAD is people perceptions of the condition as possibly “desirable.” Magazine headlines reading “I Have Orgasms All Day Long” misconstrue the fact that it is a pain condition and that the orgasms are painful, not pleasurable, which can be devastating.

There are several theories behind why this condition occurs, ranging from excessive sensory information from irritated nerves, tight pelvic floor muscles that can cause changes in the local nerves and genital tissues and/or a decreased inhibition of the central sexual reflex in the brain. Often, PGAD is a subset of a larger group of disorders known as Chronic or Persistent Pelvic Pain.

With over 35 years of experience, it will be an honor to pick Dr. Goldstein’s brain on diagnosing PGAD and effective treatment techniques that he has used in this patient population. To learn more about PGAD, make sure to listen in on Sunday, February 5th at 3 PM EST at http://www.blogtalkradio.com/pelvicmessenger.

Dr. Robert Echenberg Discusses PGAD on The Pelvic Messenger!

Interested in learning more about PGAD (Persistent Genital Arousal Disorder)?

Although PGAD in women is uncommon, Dr. Robert Echenberg will discuss on The Pelvic Messenger (April 24th, 3pm PST, 6pm EST) why PGAD is a sub-set of a much larger and quite prevalent group of disorders that together are called “chronic pelvic pain” (CPP) or “Complex Abdominal Pelvic Pain Syndrome” (CAPPS).

Dr. Robert Echenberg is the founder of “The Institute For Women in Pain” in Bethlehem, PA, a non-surgical multi-disciplinary practice specializing in assessment, diagnosis and treatment of chronic pelvic pain (CPP).  Dr. Echenberg is the author of the book, “Women’s Health, Pelvic Pain and Sexual Wellness.” He is also a member of the Alliance for Pelvic Pain along with Amy.

 

In Memory of Gretchen Molannen

By Riva Preil

On December 1, 2012, Gretchen Molannen ended her life tragically after years of suffering from Persistent Genital Arousal Disorder (PGAD). PGAD is a disorder where the individual experiences prolonged and intense periods of genital arousal. The symptoms may be relieved temporarily by stimulating an orgasm, however the symptoms usually return within several hours. Certain situations may trigger the symptoms, including riding in a car or cell phone vibration. For many, the discomfort associated with increased arousal progresses to pain, and those who suffer from PGAD often refrain from intercourse due to pain and/or shame. In addition, this condition interferes with many activities of daily living, such as attending to work related tasks and interpersonal relationships.

Unfortunately, researchers have limited information regarding the cause and treatment for PGAD. To date, it seems that there is a connection between PGAD and sensory nerve dysfunction. PGAD is also associated with pudendal nerve entrapments; nerve blocks have been used to treat PGAD with limited success. In some cases, PGAD may be related to pelvic arterial-venous malformation, in which case surgical intervention is indicated to correct the underlying issue. Antidepressants, antiandrogenic medications, and anesthetic gels have been prescribed to help alleviate the discomfort. However, “one of the problems with PGAD is a lack of knowledge. Many doctors don’t know about it and it’s not even recognized by the medical community as an official condition. Therefore any procedures that may potentially reduce the problems are not covered by insurance because there’s no code for PGAD. What’s more, it’s unknown how many women have the condition since many choose not to talk about it out of embarrassment” (quoted from the Ryan Jaslow’s article in CBS News; see link above). Furthermore, people experiencing PGAD may very likely benefit from pelvic floor physical therapy.  PGAD can increase sensory and motor nerve sensitivity, and it can create pelvic floor muscle tightness. This tightness can pull on the genital region and increase the symptoms of arousal and pain. Furthermore, the tightness can restrict and irritate the nerves in the pelvic region which results in hypersensitivity to the surrounding organs and in the general region. Pelvic floor physical therapy can help treat the musculoskeletal and nerve restrictions associate with PGAD.

Gretchen was courageous by sharing her story with the world. May her tragic story raise public awareness regarding the debilitating nature of this terrible disease thus spurring further research into appropriate treatment methods.  May she rest in peace.