What’s your first reaction to this image? Laugh? Sigh and Roll your eyes at the tasteless joke? Did you think: “How can anyone REALLY have this?”
What if you were experiencing sexual arousal or multiple orgasms on a daily basis, for hours at a time, day or night, with no one medication or method to relieve symptoms on a consistent basis?
What if you had the guts to talk to your doctor about the embarrassing (or what may even feel like devastating) symptoms and find out that your doctor either never heard about PGAD, or worse was a medical professional that did not believe you?
This is the suffering that people with PGAD or PSAS, Persistent Genital Arousal Disorder or Persistent Sexual Arousal Syndrome, experience and continue to endure. Sadly, the condition has even led some patients end their own lives as recently as a few months ago in 2016.
What is PGAD?
Persistant Genital Arousal Disorder, a “monster sexual dysfunction”, as coined by Irwin Goldstein, MD (1) is a condition characterized by 6+ months symptoms of high levels of genital sexual arousal in the absence of desire (2). Genital arousal does not dissipate, with orgasm nor by medication alone.
PGAD sufferers describe their symptoms as intrusive, unwelcome, unpleasant and sometimes painful. Multiple, frequent disturbing orgasms (not pleasurable) occur spontaneously, at work, home, school and create tremendous embarrassment and anxiety, which eventually can lead to depression, frustration, and social withdrawal. It causes major stress for personal relationships. Seventy five percent (75%) of women with PGAD report moderate to high distress levels and report feelings of shame, isolation and suicidal thoughts (3).
PGAD: Subset of Chronic Pelvic/Abdominal Pain
PGAD has similar qualities, fluctuations, flares like and is starting to be viewed as a subset of chronic pelvic/abdominal pain.
Chronic pelvic/abdominal pain diagnosis is also made after 6 months of pain, burning, stabbing, cramping + other symptoms involving 1 or more “private “areas: bladder (urinary frequency and bladder pain) bowel, (IBS) reproductive organs (endometriosis, vulvodynia), groin, buttocks and pelvic floor muscle pain.
As chronic pain takes 6 months to develop, the tissues that were involved at the initial onset of insult or trauma may not be the main or only source currently producing chronic symptoms. Rather, a highly sensitive brain/nervous system that is persistently on High Alert, “Danger-Danger!” mode perpetuates the symptoms.
PGAD alone has not been researched extensively. We do not know the cause, the amount of women and men with symptoms, nor do we have effective, evidence based treatment – yet. With the push of some PGAD “warriors” and a relatively young organization, International Society of the Study of Women’s Sexual Health (ISSWSH), www.isswsh.org, research on PGAD is now being conducted. ISSWSH will have their annual conference in February 2017 where the PGAD Significant Interest Group will present state of the art research as well as testimonials from sufferers.
PAIN comes from the BRAIN
Chronic pain research has made amazing strides in the last 10 years due to the ability to incorporate MRI studies of the brain in all sorts of pain research. Our brain’s main job is to protect us. For example, we don’t keep our hand on the hot stove, or step down further onto the nail under our foot as the brain instantly weighs information coming from sensory nerves and makes a decision on how to react – i.e. PROTECT. Pain is the brain’s response to incoming nerve reports.
Research shows hundreds of areas in our brain “light up,” or simultaneously become active when experiencing pain, including areas in the brain that process Sensation, Movement, Emotions and Memory. This knowledge helps us understand how a certain movement, emotion or even noise & light can lead to a pain reaction, especially if the brain is persistently on the faulty “Danger-Danger!” mode.
“Neuroplascity” is the ability for the brain to make new neural connections throughout our whole lifetime, to adjust, to change.
How can we help our brain change from being on a highly sensitive “Danger Danger!” mode to a more functional mode?
PGAD TREATMENT Step 1: EDUCATE yourself about Pain & Know your Triggers
Once medical diseases have been ruled out, the first step of effective treatment of PGAD is to change the brain from high alert to a healthy functional mode, by educating yourself on the science of pain (stay with me!) and to write down all of your possible triggers for symptoms. Lorimer Moseley’s and David Butler’s Explain Pain (www.noigroup.com) and pain educational website www.retrainpain.org are great resources for pain/PGAD sufferers and their loved ones.
Write down all the actions (riding in a car, walking up stairs, showing affection to partner, etc.) and write down what fears/thoughts (not knowing the “cause” of pain, not being able to work, loss of partner, inability to care for children etc.) that stimulates PGAD symptoms (4).
Describe each symptom related to the trigger and rate the intensity of symptom on scale of 0-10. This will give you and your medical team a baseline to measure and monitor progress. You have to be an active participant in your healing because each person’s cause of symptoms and how your brain reacts with pain/PGAD symptoms is unique.
PGAD TREATMENT Step 2: Find your T-E-A-M
Find your team of practitioners who understand PGAD and who will work with you. A Medical Doctor and a Pelvic Physical Therapist is a good start.
- MD/DO – for prescription medicine, trigger point injections, superficial nerve blocks, botox – treatments to give the faulty nerves/brain activity a break
- Pelvic Physical Therapist – who is up-to-date with the recent pain research information, provides manual treatment and offers paced, gradual movement/exercise therapies to pelvic floor, abdomen, pudendal nerve and viscera – see below for more details
- Psychotherapist – to address any possible childhood traumas/abuse issues that over 50% of PGAD sufferers experienced, as these experiences may be held (remembered) in their genital region (see EMH Physical Therapy’s blog on Somatic Experiencing (http://www.emhphysicaltherapy.com/what-is-somatic-experiencing-and-how-does-it-heal-traumachronic-pain/1450/). Therapy can help manage the depression and anxiety that accompanies PGAD.
- Acupuncturist - to help lower the “high alert” brain/nervous system, releasing the “fight or flight” pattern or stimulating the sluggish, depressed pattern
PGAD TREATMENT Step 3: Pelvic Physical Therapy
Physical therapy treatments are individualized as no patient is alike in their presentation – their symptoms of PGAD /pain may be similar, but the causes are different. Education about brain/nervous system and motivating patients to become active partners in their healing process has the best outcome.
There is no one “magic bullet,” no 1 medication or 1 technique for symptom relief. Receiving regular pelvic PT treatments plus doing a daily exercise/movement program (the brain loves movement!) is part of PGAD therapy. Treatments can include:
Manual Therapy – incorporating movement and awareness for both the external & internal muscles of the pelvis, abdominals, hips, fascia and skin; calming the “fight or flight” reaction allows for improved blood flow, oxygenation and balances the nervous system.
- strain / counterstain
- myofascial release
- connective tissue massage (aka skin rolling)
- trigger point release
- pudendal nerve glides
- visceral mobilization
Biofeedback – to promote awareness of pelvic floor muscle tension and teach coordination training.
Breath and Meditation - deep diaphragmatic breath expands the front, sides, back of the ribs & abdominal cavity, relaxes the pelvic floor muscles, massages the internal organs and improves oxygenation to tissues. A simple 5 minute meditation where one focuses on the sensation of slow inhalation and exhalation calms the brain.
Desensitization Techniques: Strategies to lower the high alert nervous system as used in treating Complex Regional Pain Syndrome, is applied to our PGAD patients with promising results.
Stretching and Stabilization Exercises to lengthen and strengthen, stimulate the core stabilizers, soften the pelvic floor. Cardiovascular exercises to improve general blood flow are performed daily at home. Exercises are paced and applied gradually as the patient reports responses in their symptoms.
Modalities such as TENS, Low Level Laser and use of dilators can also be used as part of our treatment.
PGAD, like chronic pelvic pain is complex and requires patience by both the patient and the practitioner. Results are best if patient and practitioner work consistently together and the patient performs daily home/self care exercises, paying attention to responses and slowly increasing the pace and challenge of the new movement. Neuroplasticity takes persistence and develops over time.
Further research in measuring the efficacy of all the treatment techniques mentioned above and the importance of a concurrent multi-specialty approach to PGAD still needs to be done. My team and I at EMH Physical Therapy will continue to help patients heal from PGAD.
1 Goldstein I. Persistent genital arousal disorder- update on the monster sexual dysfunction. J Sex Med 2013;10:2357-2358
2 Jackowich R, Pink L,Gordon A, Pukall C. Persistent Genital Arousal Disorder: A Review of Its Conceptualizations, Potential Origins, Impact and Treatment. Sex Med Rev 2016;1-14
3 Leiblum SR, Brown C, Wan J, et al. Persistent sexual arousal syndrome: a descriptive study. J Sex Med 2005; 2:331-337
4 Butler D,Moseley L, Explain Pain, Noigroup Publications Adelaide, Australia 2013