If I’m honest, I first heard of this diagnosis in early 2013. If I’m not honest, I’ll say that I’ve known about this for years and years, daaaahling (hair flip).
When I talk about PGAD to professionals, providers, my friends, they always open their eyes wide and giggle. They are thinking that persistent genital arousal sounds awesome. They joke that they want persistent genital arousal. But then I get into the details and the impacts it has on your family life, your social life and your capacity to wear pants and then they don’t want this “disorder” any more.
So, it’s 2013 and I’m fascinated by the description I’m hearing. It reminds me of the story of a woman who was constantly having orgasms. She made it into the “weird news” sections of magazines and radio shows. She had a real health issue, but her story was turned into a spectacle. She would have orgasms brushing her teeth – or that’s the story they told.
But she probably never orgasmed.
PGAD has a super hazy definition. It’s comprised of different symptoms:
- Unsolicited arousal in the genitals or maybe just one part, like the clitoris
- A mix of pleasure and pain with the arousal, mostly pain though
- It would seem as though having an orgasm would make this annoyance go away, but it probably just intensifies the discomfort
- There may or may not be a bladder or bowel component to it
Can I break this down now?
Unsolicited arousal in the genitals or maybe just one part, like the clitoris. If you’re home alone and feeling some random, short-term unsolicited arousal, you might think “Alright, let’s do this!”, but no. That’s not how this works. This is a constant feeling of genital arousal. That means your genitals feel aroused when you are talking to your parents on the phone. Your genitals feel aroused when you are in traffic. Your genitals feel aroused when you are holding your child. Your genitals feel aroused when you are at a funeral. No one wants this. It fucks with your head. It makes you anxious. It makes you wonder what kind of human you are. It’s really out of your control. It’s unsolicited. So this cycle of worry and fear and insecurity evolves into a bigger state of panic for your nervous system…which only feed the PGAD. It’s like a monster that eats its own shit. What it does to your nervous system as a result of its presence is precisely what feeds it and makes it stronger. So how do you break out of this?
You break out by getting good help. Not just “help”. But good help from providers that understand PGAD. When you understand the different causes of PGAD, then you can get the right help. Like anything else, several different factors can cause this. I will go into the causes in the next post.
A mix of pleasure and pain with the arousal, mostly pain though. Pleasure spiked with pain. Or, pleasure stabbed with a thousand knives and music is not my aeroplane because I cannot sit long enough to withstand an aeroplane ride and I don’t live in the UK so if I could tolerate a long trip I’d say I’m going on an “airplane”. For some people, it starts with a mild feeling of pleasure, then it morphs into pleasure and pain, then it turns into just pain. It evolves. Persistent Genital Arousal Disorder is kind of a misnomer in a way. It should just be called Persistent Genital Pain Disorder, but PGPD doesn’t roll off the tongue. The pain can amplify with pressure on the genitals, but, it also might feel better with the right kind of pressure on the right part of the genitals. Does that make sense? So, wearing pants can hurt or sitting can hurt, but putting mindful, direct pressure on a very specific location of the genitals might actually feel relieving.
It would seem as though having an orgasm would make this annoyance go away, but it probably just intensifies the discomfort. It makes sense. If you feel slightly aroused, or like you have “blue balls”, then masturbating or having sex to orgasm would probably make your arousal sensation go away. But, with PGAD, because your pelvic floor muscles may be chronically tight, so after an orgasm – which is a bunch of pelvic floor muscle spasms – the genital discomfort probably gets worse. So that lady in the “weird news” brushing her teeth, she probably just had pain and arousal, but knew at that point not to try to orgasm. She wasn’t going around orgasming one hundred times a day. She was going around in a constant state of pain, embarrassment, confusion and despair. There was no pleasure.
There may or may not be a bladder or bowel component to it. Based on the cause of each individual’s PGAD, a full or empty bladder or bowel can change the pain. Some people feel better when the bowels are full. Some people feel better when the bladder is empty. I think this is mechanical. It has to do with pressure on a nerve or stretch of a muscle. If a tight muscle is a problem, then stretching it via full bowels might create some relief. If a nerve is a problem, then placing pressure on that nerve might increase discomfort. Of course I’m simplifying this, but it doesn’t make any of what I’m saying less true. And this right here, this idea of pressure or stretch – all of this mechanical talk (as if we are cars) – is why I believe everyone can get rid of their pelvic pain. You don’t have to agree with me. The person next to you doesn’t have to agree with me. Your doctor and your physical therapist don’t have to agree with me. But, I agree with me. The body is not magic. Your pain is not magic. There is a cause and there is an effect. We must find the cause to fix the effect. Period.
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