Tiny Pioneer

Tiny Tips for Dealing with a PGAD Flare

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**Post originally uploaded July 2016**

A flare up of persistent genital arousal disorder (PGAD) can be a frightening as well as deeply uncomfortable event.  If you have been dealing with the condition for a while, you have probably already developed your own strategies for easing it, though there may still be some ideas here to help you further.  If this is one of your first flare ups, you may well be experiencing real panic and despair, wondering however you can find relief.  Below is a list of things that I myself have found helpful during PGAD episodes.  Some of these may also assist with flare ups of interstitial cystitis (IC), which has a lot in common with PGAD. 

Please note that I am not a medical professional and if you try any of the things below, you do so at your own risk.  Please note also that the majority of these ideas do not address the underlying causes of PGAD, but are presented merely as symptomatic relief for when an attack strikes.  You can learn more about PGAD in my previous blog post, Introduction to Persistent Genital Arousal Disorder.  The contents of this blog post are the intellectual property of Tiny Pioneer and tinypioneer.co.uk and may not be copied or published elsewhere, except by the official ‘share’ buttons at the bottom of this page. 

Avoid sex and other forms of vaginal penetration. 

During a PGAD flare, you are going to need to avoid sex or any form of penetration for a considerable period of time.  There are anecdotes from a few sufferers who seem to find temporary relief from symptoms upon having sex, but as PGAD is characterised as persistent arousal and lack of relief upon orgasm, it is my experience and the experience of many other sufferers that sex will exacerbate symptoms.  Though the exact mechanism by which it arises is unknown, PGAD does seem to be some form of irritation within the vaginal/clitoral area and in my opinion this irritation cannot die down while the area in question continues to be stimulated and subjected to friction.  If the flare has been severe or prolonged, I would recommend continuing abstinence for a while even after symptoms have reduced.  Note that if you are of menstruating age, penetration includes the use of tampons and mooncups.  I recommend Natracare sanitary towels, which are not only more environmentally friendly than leading brands, but are also organic, non-scented and free from chlorine to avoid extra irritation to the area. 

Avoid orgasms at all as much as possible.

Clearly the nature of PGAD means this is not always going to be possible!  I should think the majority of people who end up reading this are here after Googling something like ‘why can’t I stop having orgasms?’ and having been there myself, I can absolutely empathise.  However, eventually the cycle in which you find yourself will naturally abate and when you get an opportunity to stop having orgasms, take it and extend it as much as you can.  It will NOT be possible to avoid them all, but as with the previous point, the longer you can go without orgasming, the more you will break the cycle of irritation.  In time you will learn to tell the difference between a genuine need to orgasm and a PGAD need to orgasm; as your symptoms improve, you will eventually be able to have sexual orgasms without aggravating the PGAD so much.  Until then, just try to avoid all orgasms as much as possible to allow your body the chance to heal.  If you do act, try to limit the number of orgasms and consider trying some of the other items on this list immediately afterwards to dampen down the sensations again.  I am now able to have sex again, but if I have it too often, or orgasm too many times per session, I feel sensitive for a couple of days afterwards and as if the PGAD may return.  Less can be more! 

Avoid sitting for long periods of time.

It took me a while to figure out during early flare ups when my PGAD was quite severe and confusing, but sitting down is a huge trigger for me.  Even though I am now vastly improved, to the extent that I can have sex again, sitting remains one of the things that most brings on my pain and risks setting the PGAD cycle off.  I can sit for longer than I could and on a wider variety of surfaces, but sitting on hard surfaces or at my computer starts to cause problems after as little as 20 minutes, which explains in part why these blog posts are rather irregular!  I’m best sat cross legged on a soft surface.  Interestingly, some people report that excessive standing worsens their PGAD, so you may want to look at your lifestyle and try mixing things up a bit if you spend all day doing an excessive amount of sitting or standing. 

Wear comfortable underwear and clothing.

I used to live in thongs, but they irritate my PGAD a lot even now, so these days I save them only for short term wear on good days.  When my PGAD first started, I spent my bad days in a long skirt and no underwear at all.  If your knickers or trousers are digging in to your vaginal area, they are likely irritating your PGAD, so you’ll need to put vanity to one side for a while and dress for comfort!

Valium, 5HTP (and probably other things that act on serotonin directly or indirectly).

I found that Valium (more properly called diazepam) can help the PGAD for a few hours if it presents with uterine or vaginal tension, but then leaves it worse again afterwards.  My own PGAD is not always accompanied with tension, but when it is, the Valium seems to melt it away, which can bring short term relief.  However, for me, it leaves residual feelings of tissue irritation which actually then make the PGAD feel worse.  I notice that things containing 5HTP have a similar tissue-irritating effect – it’s difficult to describe, but they leave my vagina feeling a bit raw and that makes the PGAD feel worse and then everything gets harder to resist again.  As both Valium and 5HTP impact on serotonin, I’d be inclined to take particular note of any drugs or supplements you might be on that also do this and see how your own PGAD behaves in the hours and days that follow.  Many people have either started with PGAD or experienced remission from PGAD with the introduction or cessation of SSRI medications, so while the effects are not the same for everyone and while not everybody’s PGAD seems linked/solely linked to serotonin, monitor anything that might be relevant here and ask your healthcare professional to help you devise a plan based on your findings. 

Eliminate ascorbic acid from your supplement regime and look at your vitamin B6 habits.

Ascorbic acid, which is a commonly used form of vitamin C, can be very irritating to the bladder in cystitis sufferers and as there seems to be a significant overlap between IC and PGAD, I would absolutely recommend eliminating it immediately.  I discovered as long ago as my late teens that ascorbic acid made me feel ‘cystitisy’, but I had no idea until I developed PGAD that I was not alone in reacting to it this way!  Ascorbate forms of vitamin C are usually well tolerated even by IC sufferers, so if you do want to supplement with extra C, look out for forms such as magnesium ascorbate, potassium ascorbate and calcium ascorbate.  Desert Harvest’s Buffered Vitamin C offered here at Tiny Pioneer is in a calcium ascorbate form with added aloe vera. 

Vitamin B6 is another common bladder irritant and so also has the potential to exacerbate PGAD in my opinion.  This is controversial, as B6 assists with tissue repair, nerve communication, inflammation and serotonin manufacture, so there is a strong case for it being beneficial to PGAD sufferers and indeed I believe some people have found it helpful.  However, others have found it irritating and given its known effects on the bladder, I’d urge you to look at your regime to see whether you’re likely to be deficient or are taking a lot, and at least be mindful that it might be having an effect on your pelvic issues. 

It is worth mentioning that there are different forms of vitamin B6, the most commonly used of which is pyridoxine.  I was always okay with B6, but once I started with PGAD I could never decide if it exacerbated the feelings of tissue irritation or not, so I eventually erred on the side of caution and eliminated pyridoxine from my regime.  I do however continue to have a small amount of B6 in my multivitamin supplement in another form – the little used or known about pyridoxal 5’-phosphate (P5P).  I seem to be fine with this small amount of P5P, but I am unsure if the same would go for other PGAD and cystitis sufferers.  I’ve never wanted to risk trying larger doses.  If you need to take a B-complex and want to eliminate B6, Desert Harvest offers a wonderful version without it which is available in the Tiny Pioneer shop

Distract yourself.

One of the best ways that I’ve found to break the PGAD cycle is simply to do some sort of moving about activity that really takes your attention for a bit.  I don’t think at all that PGAD is all in the mind, but I think sensations in that area are awfully hard to ignore and the better you can distract yourself, the more respite you will get, however temporary.  A couple of weeks ago I started to feel really sore after sitting for too long to work.  I got up and in something of a bad mood started to clear an area in the room to use as a standing work station.  I realised when I’d finished that I hadn’t actually noticed the feelings while I’d been busy, which meant I had not acted on them, which meant things did not become more irritated.  Cooking and cleaning might not be much fun normally, but they are extremely useful ways to distract yourself because they are reasonably active and take a bit more brainpower than just walking or running!  Swimming is apparently very good for PGAD as well, but conversely chlorine is not very good for cystitis, IC, or general health so I’ve never used swimming as a coping mechanism during a flare as there are no freshwater swimming options local to me.    

Sit in a bath of cool water and Hypericum perforatom oil.

Too hot and it might well worsen things.  Too cold and it will make things ache down there (think of how your fingers ache when your hands get really cold in the snow!) which is also not what you want.  I’ve found the ideal PGAD-relieving temperature to be cold enough to make getting in unpleasant and produce goose bumps, but not so cold that you would get achy fingers if you soaked your hands in the water.  Things may be different for you, but that’s what works for me.  To make the bath extra soothing, I add some Hypericum perforatum infused oil (NOT essential oil).  It does make the tub very slippery and rather difficult to clean, but Hypericum is anti-inflammatory to mucous membranes and very soothing to nerve pain so it works wonders at averting or calming a PGAD flare.  If I’ve spent a lot of time sitting down and feel like things are getting niggly, ten minutes in a cool Hypericum bath really help to take away the intrusive or sensitive feelings.  There’s no need to be exact about how much oil goes in – I fill one of those plastic archive boxes, put a good glug of oil in and use that instead of filling a whole bathtub.  You want to be able to feel the oil, i.e. the water should feel slippery, but there’s no need to put loads in.  I get in, sit with my legs apart for a bit swishing things around, and then when I get out I make sure to dry myself gently so as not to aggravate things again.  It’s also fine to just put the neat oil on your finger (I’ll say it again – infused, NOT essential) and apply it directly to the inside and outside of the vagina and onto the clitoris.  It will not sting at all and for me it is soothing almost immediately. 

Do not use bubble bath or soap.

No bubbles, no soap – nothing fun in your bath.  Wash with intimate wash if you can – some people can’t even tolerate that.  I really would not advise douching.  The vagina self-cleanses and actually flushing it out on a daily basis with soap type things is not, in my opinion, ever a good thing to do. 

Make lavender water ice cubes or Hypericum perforatum juice ice cubes.

Lavender water is an actual thing you can buy – you don’t just add essential oil to water.  The same goes for Hypericum perforatum juice.  You can then just pour them into a normal ice cube tray and when they’re frozen, hold them against the sore or aroused bits.  I would strongly advice that you don’t just push one into your vagina and let go the first time you do this – it will be colder than you think, possibly sharper than you think, and the waiting time while it melts will seem very long!  Hypericum is soothing to nerve pain and lavender is soothing and healing to most things, so these are two great herbs to apply to the area. 

Use Desert Harvest Aloe Vera Gele or Desert Harvest Aloe Glide.

These can be used both on the outside and inside of the vagina – I use both and they really were great in the worst days of my PGAD.  The Glide is slippery and more of a traditional lubricant, but is great for sex (when you are able to have it again) and for lubricating your applicators for any internal gels or medications you may need to apply.  It also provides relief from dryness and irritation.  The Gele feels even more soothing, but is less slippery and a bit thicker, so it stays put much better if you want to use it in the daytime when you’re on the move, for example, but is slightly less effective as a lubricant.  Both can be refrigerated if you want them to be extra cool and both have soothing and healing properties.  They’re very natural, so unlike lots of lubricants there is not much in them that could irritate an already sensitive area.  Desert Harvest products are all designed with interstitial cystitis sufferers in mind and this makes them great for PGAD as well. 

Use Desert Harvest Releveum.

This is a combination of aloe vera and lidocaine, the same pain reliving agent found in the numbing cream people use before blood tests.  It is quite runny, but can be applied on both the outside and inside of the vagina, as well as to the anus and the general skin.  I keep this for use on nights when the PGAD is stopping me from getting to sleep and I fear I may give in the to the faux need to orgasm.  I put an applicator full into my vagina and within about twenty minutes everything is nicely numb and I can get to sleep.  For the first few minutes it can be a touch ‘zingy’ but it doesn’t hurt me and its effects last for a good couple of hours.  I don’t use this often, as the next day I can feel a bit sensitive sometimes and I instinctively feel that putting lidocaine up there multiple times a day might not do the long term healing process very much good, but it’s a great way to ignore the need to orgasm when things are getting bad and is another valuable tool in breaking the PGAD cycle. 

Try a TENS machine.

I don’t really rate this for the arousal per se, but if the PGAD is accompanied by uterine tension or back tension, it can be a helpful way to ease things in that regard.  To an extent a TENS machine can also provide some distraction from the arousal. 

Move around and shake your booty! 

I do find that keeping moving is very helpful and although this is not something I do nearly enough at home, I am often very much better on days when I’ve done lots of walking and moving about.  At home, I try not to sit for very long periods of time without getting up to have a bit of a jump around and a wiggle about.  I try to move in ways that really loosen up my pelvis – for example making hula hooping motions and ‘shaking my booty’.  I avoid doing things like sit ups that cause the lower abdomen and pelvic areas to tighten and if I were able to ride a bike without falling off, I’d probably avoid that too. 

Stretch.

Like moving around, stretching in ways that open up the pelvis and vaginal areas can be helpful.  For a while I did specific stretches as taught to me by a yoga teacher and an osteopath, but to be honest I find my own improvised stretches just as effective – I just do what feels right to me, with the aim of relieving tension and opening out my vagina.  Things like standing in ballet second and doing deep plies, or sitting with the soles of my feet together and pressing my knees to the floor can be quite good, but I just make it up as I go along really.   

Lie like a baby and elevate the pelvis.

We can learn a lot from babies and toddlers when it comes to posture as they naturally do everything perfectly, having not yet learned the wrong ways to move.  I find lying on my back with my legs in the air like a giant baby to be an excellent way to take the focus of my pelvis and get the blood moving away from my vagina.  Because I know sitting is a trigger for me, I tend to sit in very crooked positions to avoid any flares, but this creates a lot of tension in my back and neck.  Lying like a baby is also great for this.  (I have tried the doughnut cushions and open back cushions, but they don’t help me.)

I think that Alexander Technique could be very helpful in improving any structural factors of PGAD – sadly there are no teachers close to me and it is very expensive, but I have learned bits and pieces from books and videos.  If you suspect that there are structural triggers behind your own PGAD, lying like a baby or lying in Alexander Technique’s active rest position can be excellent ways to divert an attack if you catch it in time.  Sometimes in the days when my PGAD was much worse, I would also find some relief in sleeping with pillows wedged under me to elevate my pelvic area.    

Take D-Mannose.

It won’t help with the PGAD, but if you’re going to be orgasming 40+ times a day like I did on my worst days, you really don’t want a UTI on top of that.  Taking D-Mannose regularly helps build a resistance to ordinary cystitis and it gave me terrific peace of mind during my PGAD days as I felt less vulnerable. 

Use herbal remedies.

I didn’t find conventional painkillers at all useful in dampening the sensations of PGAD (or cystitis when I’ve had that), but I did find relief in using herbal tinctures.  These were not tinctures that are freely available to buy, but my mother is a medical herbalist and after some trial and error, we found a combination that really helped to take away the pain/arousal and another single tincture that helped with uterine tension.  If you decide to consult with a herbalist, look for someone who is a member of the NIMH or the CPP if you’re in the United Kingdom to be certain that they are properly trained.  I am happy to pass on details of the herbs used to other medical herbalists, but as they are contraindicated with certain conditions and must be used with care, I will not publish the details here. 

Try to maintain a positive attitude – there is hope.  While PGAD is a horrible thing and can be extremely frightening when it first strikes, much of the panic dissipates when you become familiar with its natural cycles and learn your own triggers.  Hopefully some of the tips here will help you to find some relief from its symptoms and perhaps guide you towards discovering some of your own triggers so that you can experience remission more quickly and easily than I did.  My longer term healing strategies are a work in progress and a post for a future day, but you have every reason to feel positive.  Two years ago, I felt hopeless – it seemed as if most people did not get better and as if those who did managed to do so only after long, expensive journeys.  Furthermore, with cures ranging from SSRIs to nerve blocks, counselling to amitriptyline, yoga to smoking cessation drugs, actually understanding what causes PGAD and how it can be cured for the majority of people seemed difficult.  However, with very little medical support and limited money, I have experienced improvements so great that I am now rarely bothered by PGAD at all.  For me, full recovery will occur when I can sit down for as long as I like, but I am SO much better and so much happier than I ever thought possible.  There is definitely, absolutely hope!  You can get better! 

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