PGAD - persistent genital arousal disorder

[DoubleEdgedSword]

[quote That's a nifty plan -- freezing condoms in toilet rolls. I never tried that but if I need one again I will remember it. What's your recipe for the slush? You may have already listed it way back in this thread somewhere but in case someone new is coming here it would be nice to know again.[/quote]

I found this one on a birthing website, so I guess moms who've undergone a difficult birth can identify with pain down there too..

Get a condom, put in about an inch of alcohol (rubbing or drinking), then fill the rest with water. Tie a knot in the condom, then slip it into another condom and tie the end of that one too. Place inside a toilet roll and freeze.

I'll add that I put toilet roll and all into a freezer bag too. The quart/litre size works perfectly. Don't want my toilet roll getting soggy or sticking to the freezer!

I did the same for a water bottle. Put about 1-1.5 inches of alcohol in the bottom, filled the rest with water, recapped it and froze it. It keeps the cold for quite awhile and stays nicely pliable.

I haven't yet experimented with different shaped bottles, but the one I'm using has a roughly square shape to the body. Since my pain cycle also involves the labia and vulva, I can put a corner of the bottle where needed and the adjoining walls help to soothe those areas.

Hope this will help anyone who suffers the intensity of these pain cycles.

[Anne smith]

P g a d
I am lucky enough ( at the moment) not to suffer from that particular symptom , but as I read with intereast advise offered by the other girls, lidocaine has been mentioned and it made me think of a wonderfull cream I have discovered for feminine itching in "the girlie bits" something I have suffered with threw the menopores , that and dryness! It's called vagisil and it has 2persent lidocaine in it as well as other things! It is the only thing that actually doesn't make things worse! It's a long shot but all helps when looking for answers
Anne

[loulou90]

Hi all,
Just new to this site and feel the need to share my experiences. I have had PGAD since I was four years old (though, I only put a name to the condition recently). It only became a terrible nuisance in my final years of high school when I decided to commit to my studies. With loads to read and write, in addition to much motivation and passion - one page of a book would take two hours because of this f****** arousal. My family and teachers would just say I am lazy and slow. If only they knew what was holding me back. Made it to Uni, but have just quit a semester before graduation because my grades just aren't good enough, purely because of the time wasted on trying to relieve myself. I understand that PGAD gets in the way of a lot of things for everyone who suffers from it - but is there anyone in particular who can identify with me - someone with so much desire to study and write - but can't reach their academic potential because PGAD won't leave them the hell alone!? Motivation and knowledge trapped in this head because of a physical constraint! Gah, I am probably sounding so selfish here.
I too, have been prescribed SSRIs on countless GP visits. I tried two gynaecologists as well who also though it was mental. I have browsed my University database for journal articles and scientific publications and all I can find is information about PGAD on pregnant woman. I really don't think this is psychological - at four years old I was hardly having sexual thoughts.
Sorry for the rant, but its one of the best places to do it.
I'm so sorry that everyone else here has to suffer from what I always thought was my own shameful little secret. Hope to hear of people's progress and happy to speak with anyone in the world, though Australia would be a bonus.
Cheers.

[Violet M]

Welcome Loulou. It's definitely not in your head and I understand how distracting it can be to try to study or do anything else for that matter. I'm sorry you've been dealing with this for so long without anyone to support you. Would it be possible for you to contact one of the docs or PT's listed on the website at pudendalhope.org? (see left hand menu). There are only a handful from Australia so it might require traveling.

Best,

Violet M

[helenlegs 11]

Hi Loulou,
Are you getting any help at all? Are you taking any medication for instance?
I remember Calluna saying that slow release tramadol helped her the most with this problem. I do take cymbalta an antidepressant (and normal tramadol), and do get some benefit from it although any PGADish symptoms I have are just vaginal tingling which I can deal with. I wonder if some cognitive behavioural or mindfulness training might help you especially while studying. I have found this helpful, as life has to go on doesn't it. Well done anyway, being committed to your studies with this disorder is very commendable. I hope you do well and I hope we can help now that you have found this forum.
Take care,
Helen

[DoubleEdgedSword]

Anne, I had also hear of using extra strength Vagisil for the discomfort down below, but when I asked my doctor about it he said that it could also cause other problems there and to avoid it if possible. Something to do with thinning and drying the tissues there, I believe. My slushy water bottles help a lot to relieve the pain cycles I'm experiencing with my PGAD.

Loulou, I really feel for you because I've been suffering intensely for more than a year now with my PGAD. This is my third bout of it. I look at it as 'the itch that can't be scratched' because I get little relief from orgasm. When I first had it and didn't know what it was, it made sense to try to relieve it, and at first I could get maybe three or four hours where it wasn't driving me outta my tree! Eventually the time between needing to find relief has decreased down to about 10-15 minutes, but I've also found that trying to get relief only exacerbates it..

It seems so cruel to get so many orgasms a day that do 'absolutely nothing' for me, give no relief, and drive me to distraction.. It's been a learning curve for me, but the more relief you seek, the more it aggravates it. I've found that either directly putting pressure on it (without rubbing it) or using the frozen water bottles to calm it down help quite a bit.

As I've made progress along the way, it was a big accomplishment to go from one day, to three days, to a week without 'scratching the itch' so to speak.. Now that my body has decided to add pain cycles to the mix, I find that trying to get any relief during them is extremely uncomfortable. Sometimes the pain cycles last more than a week, sometimes they're in conjunction with my period and sometimes not, so it is possible not to get the relief for two weeks or so.

I feel so bad for you that PGAD has affected your grades so much that you've had to quit schooling over it. Hang in there, try the pressure and icing techniques, try not to seek relief as often, and hopefully yours will become more of a 'background' distraction as opposed to something that runs your life.. It's difficult to get control over it but I have faith you can learn to cope with it better as time goes on.

[Julia]

Thank you all for being so candid on this thread, you give me the courage to be honest about some of the troubling symptoms I have had.

I am wondering if numbness is associated with PGAD? Let me explain...most of the time I feel numb in my entire groin/vaginal area. Not a pleasant numbness. I describe it as though you were kicked in the crotch and it kind of hurts and is numb at the same time. I feel like my vagina died. I know this sounds funny, but I am literally crying as I write this because for the past 3 years I have either had this "dead" feeling, or a hypersensitive feeling like my labia is irritated. I described on another thread how I have never liked my clitoris being touched, it hurt or was too sensitive, and I am wondering if this is PN related too? I miss having normal sexual feelings. If something is arousing to me, it literally "hurts", so I avoid contact with my husband and this is so upsetting as we used to have a healthy sex life. Does anyone else have a pain like this? Of all the symptoms I have described to doctors and specialists, this is the hardest one for me to admit because it has truly been the most devestating and I just can't bear the thought of being told again what another doctor once told me "oh well, if you don't enjoy sex then there are still things you can do to please your husband" . I know, horrible. I used to enjoy sex, now I just have pain and weird feelings.

[DoubleEdgedSword]

Julia, I sometimes get a 'numbness' but I liken it to a 'desensitization' where orgasm is either impossible or takes a long time to happen. I still try to have a sex life with my hubby, but he knows I get pain cycles (where we don't bother with sex at all, because he doesn't want to hurt me, and I don't want to be touched), and also these desensitization cycles, where trying to achieve an orgasm is just an exercise in futility & frustration.

My pain cycles involve numerous unpleasant sensations, all happening at once. The clitoris is aroused, the labia have an itching or 'pins & needles' feeling, the urethra burns like lava, the vulva is sore (like that kick you mentioned) and inside feels like there's a ping pong ball in there.. Sometimes the pain cycles happen when my period happens too, so add the cramping associated with that, and it's like there's a rowdy block party happening & I'm not invited!

When I first started Lyrica, it helped quite a bit with the pain cycles, but I've had several of them in the last two months, so I know it's not helping much anymore.. I hope you can find something that works for your pain and one day resume your sex life, even if it's modified to avoid the occasional numb or painful period..

[DoubleEdgedSword]

Since I've been on Cymbalta, I've had only one orgasm.. It's helping a lot with the pain (I had only one day of pain so far), but apparently this is the trade-off so I'm not as depressed anymore. Ironically, I find that depressing!

So far it does nothing for my arousal, just my ability to experience the big O.. My doc said that's very typical of anti-depressants.

I've just changed my dosage to 60mg once per day, instead of 30mg twice per day..

On a more positive note, I finally got my date for the Pain Clinic.. It'll be October 1st.. I'm very happy to finally have a date to mark on the calendar. I've waited a long time for this..

[Violet M]

DES, I'm glad the medication is helping a bit. I always found that meds helped a bit but never took all of the symptoms away. Then you have to decide if the side effects are worth it but hopefully you won't have too many side effects.

Take care,

Violet