Before reading this post, please note that sexual arousal refers to a physical state, whereas sexual desire refers to a mental state. For example, if you want to have an orgasm, but have had a big argument with your partner, you may be experiencing arousal without desire. If you want to make love to your partner, but your body will not respond, you are experiencing desire without arousal. 

Persistent genital arousal disorder (PGAD) is a condition where a person experiences prolonged and intrusive sexual arousal without accompanying sexual desire. In its simplest terms, you really, really feel like you need to orgasm, to the point where it becomes an unbearable sensation, but you have not been thinking sexual thoughts or partaking in sexual acts that have caused you to become actually turned on. Worse still, if you actually do orgasm, the feeling often does not abate. Therefore, while sex normally (hopefully!) consists of a building of desire, culminating in release and relief upon one or more orgasms, PGAD tends to be characterised by an intense, sometimes painful need to climax, after which the need to orgasm remains and may even worsen as a result of the increased blood flow to the genitals. Sufferers can become stuck in a vicious cycle where the need to orgasm grows until it can be resisted no longer, and then continues to grow with each orgasm. Some people have over 100 orgasms a day, which far from being pleasurable is actually distressing, exhausting and painful.

PGAD can affect both men and women, though the majority of sufferers are female. Within women, it may affect the clitoris, vagina and labia, as well as presenting as uterine heaviness or contractions. In men, scrotal pain may be present. Aside from arousal, feelings may include genital fullness, feelings of congestion around the genitals and pelvis, tingling and throbbing, and in some cases the genitals may be visibly engorged. Some sufferers are able to reach orgasm easily, while others remain on the brink of orgasm for hours or days, but are unable to actually climax. PGAD can also be called persistent sexual arousal syndrome (PSAS), or restless genital syndrome (ReGS). Whatever its name, PGAD is NOT a mental condition and it is NOT a kind of nymphomania or perversion. Although many sufferers feel ashamed to have the disorder – and indeed many have even been ridiculed or treated badly by the medical professionals they have approached for help – PGAD is nothing to be ashamed of.

Not a lot is yet known about PGAD and the internet makes for a depressing read on the subject. For a start, there is no particular known cause and no particular known cure; stories abound of women who have been plagued by the condition for years at a time and often remission has been spontaneous and unexplained. I will talk in more detail about my own experiences with PGAD in future blog posts, but when it first properly flared, I was extremely distressed. What had started as an unusually ‘horny’ week quickly became uncomfortable and intrusive; when finally I realised I could not stop having orgasms, I was absolutely panic stricken. It took some creative Googling, but I eventually discovered the existence of PGAD and the more I read about it, the more frightened I became. It seemed to me as if sufferers were condemned to be stuck with it for years, with those who did experience remissions unable to pinpoint them to any particular factor. Attributable cures seemed few and far between and there were reports of women killing themselves, unable to live with the condition any longer.

All this was extremely upsetting to read, but after the initial shock and panic had subsided, I became fascinated by the condition and the prevalence of its overlap with other conditions like interstitial cystitis, irritable bowel syndrome and anxiety. While some people undeniably get PGAD as a result of physical injury or pudendal nerve entrapment, I am convinced that for the majority it is just another manifestation of existing bladder, bowel and endocrine problems. I have read quite a lot about PGAD over the last two years and Tiny Pioneer was set up in no small part to provide comfort and practical support for those who find themselves affected by it. Though the site is in its infancy and ostensibly as yet only supplies products to help interstitial cystitis sufferers, I am hopeful that some of these may also be beneficial to those with PGAD. In time, I hope to extend the product range to provide other niche items that may help sufferers of PGAD and its interlinked problems. More importantly, as my own knowledge around the subject increases, I want to share more of my own experiences and my wider findings on the subject, in order to provide comfort, hope and relief to those living with PGAD.

I am not yet fully free from PGAD, but I am far better than I thought possible that first night I discovered it on Google. If you have found yourself reading this during a flare up, please take heart. It is absolutely possible to find improvements and it is absolutely possible to do so even if medical professionals will not help you. Now that I have introduced PGAD in general terms, some of my next blogs will include tips for dealing with flare ups, many of which also apply to interstitial cystitis sufferers. Though you may be in an unpleasant place right now, there is definitely hope!

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