Persistent Genital Arousal Disorder is defined as the spontaneous, intrusive, and unwanted genital arousal (tingling, throbbing, pulsating) in the absence of sexual interest and desire. Usually any awareness of subjective sexual arousal is typically but invariably unpleasant. The arousal is unrelieved by one or more orgasms and the feeling of arousal persists for hours or days. (1) It is relatively uncommon, but I do worry there are women who don’t seek help and who suffer in silence with this condition and are much too embarrassed to speak of their misery. So the prevalence may be higher than we think.

Tragically, it is associated with death by suicide because of the anguish these women go through. It is a persistent pain disorder and unfortunately, if health professionals are not informed about it’s existence, women can be subjected to inappropriate comments and their discomfort dismissed, due to the lack of awareness of not only the condition itself, but that it is definitely able to be treated with good success.

I recently had a patient present with this condition, but fortunately because she recognised that something was seriously wrong, and because we can research very thoroughly on the internet ourselves these days, she found her symptoms on the net, saw that it was a persistent pain disorder and decided to be brave and seek treatment early. Her intervention was very early in the process unlike most women who go from pillar to post trying to get help after waiting perhaps for months and sometimes years to raise it with their doctor.

This patient is very articulate and has introduced PGAD beautifully in the beginning of her blog. Her story follows:

I have read many sad stories of women who have suffered in silence with the distressing condition known as PGAD which is typified by unrelenting, unwanted and intrusive arousal in the absence of fantasy or desire. What is worse, is that any attempt to relieve the arousal via masturbation is transient and the symptoms return almost immediately and usually more intense than before.

It’s a vicious cycle.

These women are not only at the mercy of their dysfunctional nervous systems but they battle shame, isolation and crippling social anxiety. Many health professionals are guilty of dismissing the symptoms, making off-handed comments or telling the patients that its all in their head. This only makes things worse for sufferers especially when you consider the immense courage it must take to even tell a doctor about it. For some women, the torment has become so bad that they have even taken their own lives.

I believe there are multiple causes for PGAD. There seems to always be an element of long term stress involved and also psychological or physical
trauma. Perhaps certain medications are to blame. In other cases, the compression or stimulation of nerves that innovate the pelvic area and
lower back send mixed messages to the genital organs.

When I first noticed my own symptoms, I was puzzled because I had always had low libido and I was post-menopausal at the time. I did not
understand the sudden intense and unprovoked arousal. Very quickly the sensations intensified to the point of constant discomfort and distress. Nothing seemed to help stop the aching tightness, urinary urgency and throbbing waves of persistent arousal with no release.

I could not concentrate or sleep or function properly. It was so distracting and upsetting that I avoided social interactions as I thought I must look like a cat on a hot tin roof. My anxiety would go through the roof and I despaired that life as I knew it was over. I decided to try and find an explanation on the internet and to my relief discovered the condition had a name – Persistent Genital Arousal Disorder or PGAD. I hoped that there may also be some kind of treatment to free me from this nightmare.

As I read articles from other sufferers, I began to wonder if my onset was due to compression of my tail bone from months of bed rest following several surgeries. I noticed my symptoms became much worse during my rehabilitation at the gym and in particular, those exercises that worked on the deep abdominals or inner thighs would send my pelvic floor muscles into spasm and lead to distressing persistent arousal. I also identified some other triggers such as prolonged sitting, cycling, driving, caffeine, alcohol and ongoing stressful situations. I needed to also avoid conflict if at all possible.

One of the sites I read was a blog on Persistent Pelvic Pain and as this seemed to be the link that my research kept referring to, I decided to come to see Sue who has a special interest in pelvic floor dysfunction and pelvic pain. She described to me the “Perfect Storm” of physical, emotional and psychological stressors that had combined to cause a breakdown in my body’s nervous balance. She taught me a lot of pain education – how to control my bladder, how to ‘sit like a man’ to help relax the muscles of the pelvic floor, inner thighs and abdominal muscles and most importantly how to breathe and do regualr body scanning to assist with relaxing key muscles. Moreover, the stretches and gentle pelvic exercises she showed me, which free up the nerves as they pass through the lower spine and pelvis, really made a difference. I have since noticed a marked improvement in my PGAD symptoms as well as improved bladder control and bowel function.

I understand that vigilance is the best defence against this terrible affliction. When I feel the symptoms starting, I know I have to immediately breathe and use distraction techniques and stretches to prevent a full blown flare. I surround myself with pictures of places or people who make me happy. I watch favourite tv shows or listen to music. Sometimes even a walk outside or a swim can break the cycle for me.

I am not sure if I will ever be entirely free from this exhausting condition, but I have learned to manage the symptoms and take back my life. My hope is that more research, treatments and understanding will help others to reclaim their sanity and reduce the impact of PGAD on their lives.

Enormous thanks to my patient for her story. It is one of the more difficult conditions to discuss with any health professional and I so appreciate her effort to write this blog for me, as it will help other women perhaps recognise their symptoms from the blog and seek help from a pelvic health physio. Imagine if a woman is having these symptoms and has no idea what is happening to her and reads this – they may be in a state of shock, like my patient was, that there was even such a thing as PGAD – but imagine her relief that treatment can work.

And the treatment is not complicated or difficult for the patient to undertake.

Breathing exercises – it sounds so nebulous and wishy-washy but there is good science behind doing belly breathing – after all it is a window into the drug cupboard in the body (2) (and the autonomic NS – namely the parasympathetic NS which releases dopamine, oxytocin and serotonin to down regulate the effect of sympathetic NS release of cortisol and adrenaline). (3)

Google a breathing gif to help train you to practise the breathing.

The stretches that my patient mentioned are designed to help relax and stretch the overly-switched on muscles, to help the nerves with their movement in the pelvis to ‘glide and slide’, to improve blood flow in the muscles and to provide movement and lubrication to the area. Here are just a couple but there are many more. To help this pain education ‘stick’ with the patients it helps to use metaphors such as the nerves are ‘gliding and sliding’ or ‘flossing and glossing’ – this is of course from the Explain Pain Masters– David Butler and Lorimer Moseley. (2)

Taken from Pelvic Floor Essentials 2018 Sue Croft (4)

The reason she had such a good improvement was her own detective work which meant she sought early intervention and was very receptive to the pain education. When this patient told me her story and we teased out the stressors that were happening for her at this time – together with the increased intensity of abdominal work at the gym and the prolonged somewhat awkward sitting – this was a classic perfect storm of factors colliding to trigger off her PGAD. The best part about her blog is the fact that she has recognised that she has to be mindful and respond when her body sends clues that her nervous system is upregulating again and intervene with her raft of proven strategies. She talks about vigilence – being mindful and responsive to the cues and clues that are there, but we don’t want hypervigilance as this tends to encourage fear-provoking behaviours that escalate the pain. For those wondering about her comment ‘to sit like a man’ here is a link to the blog to explain what that entails.

Sam Heughan plays Jamie Fraser in Outlander (SBS)

My final piece of advice is to please be brave and get help from a pelvic health physio if you are suffering with this difficult condition – don’t be embarrassed and definitely don’t suffer in silence. There are literally thousands of pelvic health physios world-wide!

#worldcontinenceawarenessweek #persistentpain #don’tsufferinsilence

(1) Lewis R et al (2010) Definitions/Epidemiology/Risk Factors for Sexual Dysfunction Journal of Sexual Medicine 7:1598–16071778 1598.

(2) Moseley L and Butler D (2017) Explain Pain Supercharged 

(3) Ma, X., Yue, Z. Qet al (2017). The Effect of Diaphragmatic Breathing on Attention, Negative Affect and Stress in Healthy Adults. Frontiers in psychology, 8, 874. doi:10.3389/fpsyg.2017.00874

(4) Croft S (2018) Pelvic Floor Essentials