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

rainbow flag

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

The Day in the Life….of a Working Mom Who Loves What She Does and Would do Anything for her Family

By, Amy Stein, DPT (Founder and owner of Beyond Basics Physical Therapy; President of the International Pelvic Pain Society; Author of award-winning book: Heal Pelvic 

Amy was presenting on the benefits of physical therapy in individuals with Multiple Sclerosis(MS) . In addition to our educational outreach, we are collecting money for NYC’s TISCH ‘s MS research arm through the New York City Marathon. Please Click here to donate.  

amy2016I had an amazing, and thank goodness a positive spin during and after my talk at the TISCH Multiple Sclerosis Patient Summit on Sunday. Thank you to Dr. Sadiq, Dr. Kanter, Dr. Williams and Pamela Levin for the invitation to share my expertise. I was so honored and felt blessed to be asked to speak at this conference. There were 1,200 people registered…..no pressure! And when I walked in prior to my talk, I saw the below photos on three HUGE screens! Again, no pressure. I practiced my breathing and my confidence building. Jessica Babich, DPT met me there to set up our table. She was a huge help, considering they wanted me to mic up right away.

I had practiced the material quite a bit so felt confident that it would go well…..and it did! I ran through everything in the 20 minutes I had and then had tons of questions after, of which I could only answer 4 in the time allotted.

A couple questions:

1. Does pelvic PT still work/can it be beneficial while a person is getting botox into the bladder?

Most definitely if the pelvic floor muscles are involved.

2. Does bladder frequency change when you have MS?

It shouldn’t change too much. If it does, as  pelvic physical therapists, we teach you strategies to manage this.

3. How often should you go to the bathroom at night if you have MS?

I am not sure there are any studies on this, but I would say no more than 2 times. We give our patients strategies to help with nighttime frequency as well.

After the Q and A, I felt like I was on cloud nine, because I gave a lot of great info in a short period of time….I sat down, and picked up my phone to take photos and noticed 2 missed calls and multiple texts from my sitter and a friend (my husband was away on a motorcycle trip). I thought….uh oh, because it had only been 30 minutes. Sure enough, the call that all mothers expect at some point, but hope it never happens….My son, Zachary had fallen off the jungle gym and it looked like he needed stitches. Thank goodness for babysitters and good friends! I explained the situation to a few colleagues from TISCH and praised Jessica at her awesomeness for taking charge, and I left immediately. My boy was a champ, and didn’t cry, even when he got the 8 stitches in his head….as I almost passed out!

In the end, amazing meeting and opportunity, and a strong and brave boy. What could a working mom ask for! I count my blessings every day!

J babs and Amy Stein
Jessica Babich and Amy Stein
Screens
These are the big screens I was talking about!
Zacary and Zoe
My Kids, Zachary and

PH101: Ladies Only Session

By: Fiona McMahon, DPT
Hey Ladies!!! In our next installment of our Pelvic Health 101 course, we are hosting a women’s only session to allow for a safe and non-threatening place to discuss many issues that can affect the health of your pelvic floor. This class one of Stephanie Stamas’s (the founder of PH101’s ) favorites and is definitely not to be missed. Join us at 7pm on October 25, 2017  Please register at pelvichealth101.eventbrite.com.

Location

110 East 42nd Street, Suite 1504

New York, NY

10017

Pelvic Health 101 Fall 2017

PH101: Pain and Sexuality: is it all in my head?

 

By Fiona McMahon, DPT

Sex should feel good… really, really good. But when it doesn’t, you may start to wonder, what’s wrong with me? Am I broken? Am I a prude? Am I frigid? Painful sex isn’t something we talk about. No one would look at you twice if you walked into work complaining of pain in your elbow, but if you walk into work complaining about pain in you vagina or penis, you may end up having a meeting with HR.

On October 18th, 2017 we at Beyond Basics are breaking down those taboos and having an educational seminar, followed by an optional question and answer session at the end. We will discuss the many causes of sexual pain and how physical therapy can help.  The event will be hosted by one of our therapists, Stephanie Stamas, DPT, ATC. Stephanie will give a detailed seminar about pelvic health and take time to clear up some common misconceptions many people have concerning their bodies and sexual function.

Please join us at our office at:

110 East 42nd Street, Suite 1504

New York, NY 10017
Register at: pelvichealth101.eventbrite.com

Here is our line up of this and future classes

Pelvic Health 101 Fall 2017

PH101: Does my Diet Really Matter?

Fiona McMahon, DPT

Gluten free, soy free, low FODMAP. It’s amazing how many diets there are out there that really can  provide people with symptom relief. If you are suffering with chronic pain you may be confused on where to start, or what is right for you. You also may have tried out a bunch of different ways of eating, not seen results and have gotten really frustrated. If this is the case for you, I highly encourage you to come to our next pelvic health seminar on October 4,  at 7pm, “Does my diet really matter”.

jessica-drummond-headshot-197x300This seminar will be hosted by a special guest speaker, nutritionist Jessica Drummond, MPT,CCN,CHC. Jessica Drummond is a former pelvic floor physical therapist who now specializes in nutrition for those suffering with pelvic floor dysfunction. This seminar has been a huge hit and is a great starting point for those considering adding nutrition as part of their healing journey.

Register at pelvichealth-101.eventbrite.com  today.

 

 

Location

110 East 42nd Street, Suite 1504

New York, NY

10017

Pelvic Health 101 Fall 2017

PH 101 Something’s Wrong with my What?

 

You’ve waited and waited, now finally Pelvic Health 101 is BACK!

On September 20th, 2017 at 7pm we will be kicking off our fall semester of pelvic health education classes. We have a lot planned this year, so get pumped. In our first class we will be introducing you to the pelvic floor muscles, where they are, what they do, and how they relate to the health as well as the function of your bowel, bladder, and sexual muscles and organs. We will also be covering how things such as alignment, posture, muscle tone, and nerves can affect your symptoms. This course is a great starting point to help you understand your pelvic floor and pelvic floor symptoms.

Please join us at our office at:

110 East 42nd Street, Suite 1504

New York, NY 10017
Register at: pelvichealth101.eventbrite.com

Here is our line up of this and future classes:

Pelvic Health 101 Fall 2017