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

Hope with Pelvic Pain: A Patient’s Story

The writer of this blog and patient and wishes to remain anonymous.

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I am a 65-year-old married professional male who resides in NYC. About a year ago, I woke up with pelvic pain and I assumed it was a urinary infection. Immediately I went to my urologist, who gave me a urine test which showed a slightly elevated white blood cell count and was given antibiotics for two weeks. Despite this treatment, the pain continued and I went for another test, which was negative.  I was told I had an inflamed prostate and to avoid spices and caffeine. This pain was so severe and constant that it affected all my daily life activities. Even painkillers, which I took for a short duration, could not relieve the pain.
Having performed my own internet research, for the better or worse, I came across several blogs on how pain sufferers had these similar symptoms that remained unresolved for years. The majority of these blogs focused on the perineal nerve, which I thought could be my issue. Therefore, I then went to a neurologist who claimed this was not the problem and then had other nerve blocks without any relief. Neither the urologist, neurologist, or general practitioners could offer any explanation.
Then, going back to the internet I found the keyword “pelvic pain”, which unlocked this pain mystery with services offered by only a handful of providers. The explanation was that rather than having headaches or backaches from stress, I was tightening my pelvic floor muscles thus creating pain.
After reviewing the few physical therapy sites I decided to try Beyond Basics for a discussion, evaluation, and treatment. I was able to schedule an appointment right away without needing a prescription from a physician. At my first session, I explained that I lacked the hope that this problem would ever be resolved, but that I would be committed to their program.
Now after almost two months of weekly sessions, my Physical Therapist has led me on a road to holistic recovery guided by exercises, massage, education, and emotional support.  I understand that the scale of pain relief will be a roller coaster, but now for the first time, I can relax when there are dips in pain.
I want to conclude my first blog by saying that my Beyond Basics PT has given me “hope” by defining the problem and offering a solution with life lessons on how to deal with this issue that is unknown to so many people.
It has been a few weeks in which I have no pain, feel fully recovered and I am back to appreciating life.

Anonymous

 

If you have questions about orthopedic, pelvic, or sports physical therapy, BBPT is offering free phone consults to those living in the greater NYC area for a limited amount of time!

Beyond Basics Physical Therapy

212-354-2622 (42nd Street Location)

212-267-0240 (William Street Location)

 

 

Pilates with Kierstin! Slingshot Lunges on the Reformer

Just in time for your New Year’s Resolutions, here’s another awesome exercise from Kierstin Elliot, Pilates Teacher at Beyond Basics Physical Therapy!

Goal: Strengthen the glutes and balance 

Exercise: Slingshot Lunges on the Reformer

Set Up: Standing on the floor with right foot near foot bar and left foot against the shoulder rest. Keep left knee straight and tilt upper body forward creating one long diagonal line from head to back toes. Use one blue spring as resistance. Belly button and chin are tucked in with neck lengthened and shoulders rounded back.

Execution: Inhale to send pelvis back into lunge bending the front knee 90 degrees while reaching arms forward and keeping the pelvis level and squared off to the front. Keep shoulders away from ears. Exhale to straighten the front knee, lower arms to sides, and return to your starting position.

Focus: Be sure to keep proper alignment throughout the spine. Lumbar spine should be elongated and supported throughout the entire exercise. Maintain core connection by dropping bottom ribs towards the top of your hips bones. Hips should also be level and squared off to the front- make sure there’s no pelvic rotation during lunges.

Importance: One of the best exercises for strengthening your glutes! This exercise also enhances your ability to stabilize the pelvis and lower back while connecting to the core for improved balance.

Modifications: Limit the range of motion in standard position, or drop back knee to the carriage. Dropping the back knee may draw more focus to the quad, making the exercise feel more like a stretch, however, the focus should still be held on standing glute. For an added challenge, grab a set of 3 pound free weights for your arms for added core control.