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Tips & Tricks

The impact of PGAD on daily functioning is considerable. Difficulty concentrating, trouble sleeping, not being able to do things you used to do and more... You're constantly reminded that you have PGAD, in everything you do.

Especially women who are in the early stages of their suffering, can hardly believe that it is possible to cope with the disease. But you can! You never get used to it completely, but humans are more resilient and resourceful than you might think.

Below you will find a summary of what women with PGAD have discovered over the years, to make their lives a bit more comfortable. Benefit from the knowledge of these experts!!

What are the triggers and how to prevent or reduce them as much as possible? And... how do I get my life back on track? Read all about it on this page...



Do's & Don'ts

Stress - Annoyance - Anger:

Stress is a common factor in today's society and is difficult to avoid. The same goes for "irritation and anger". Anyone who is exposed to these factors will automatically and involuntarily tense their muscles. Also, and perhaps in particular, the pelvic floor muscles. A healthy person is hardly aware of this tightening of the muscles.

Because any additional pressure on the specific nerve(s) only leads to an increase in symptoms, it's rather obvious that tensing the pelvic floor muscles is fatal for women with PGAD!! It would be best of course to avoid any stress, annoyance/frustration or anger. But that's not always possible.

Under these circumstances you may try to become aware of the tensed muscles and try to relax your whole body. But that's easier said than done. A medicine which has helped many women is Oxazepam (Google it for the name in your country). This medicine not only relaxes your muscles, it also makes you feel more relaxed. Some women take Oxazepam only when their symptoms are very intense. Other women take a low dose daily. Ask your doctor for advice.
Sitting:

Almost all women with PGAD experience increased symptoms while sitting, due to the pressure in the genital area.

Placing a so-called 'donut pillow' on your chair can help. The hole in the pillow as shown in the picture on the left, is actually too small.

The wider the center hole is, the better! As long as you don't fall through it and prevents your genitals from making contact with the seat.

Depending on the thickness of the pillow and your body weight, you may need multiple pillows. Another option is a pool ring (approx. 75% filled with air), in combination with the pillow. If you use multiple pillows or whatnot, you will have to be creative in keeping it all together. Sew/tape/tie them together until you are comfortable sitting. It's important that it is stable, otherwise your symptoms may increase by trying to keep your body in balance. Unnecessary muscle tension must be avoided!
Biking:

Most women with PGAD find biking torture. A pointy seat between your legs is not exactly fun. Add to that: the rotating motion of your legs, keeping in balance, bumpy paths, traffic and.... all the ingredients to trigger a major increase in symptoms are there.

An excellent alternative is a moped or scooter, but they are not exactly cheap. Another alternative is an oval-shaped seat. The pressure will be distributed over a larger surface area, and will reduce the pressure on your private parts ..
Body postures and activities:

By becoming aware of what body positions and activities lead to increased symptoms, you can teach yourself to avoid them as much as possible.

Monitoring yourself is not the first thing you may think of in the beginning. Maybe you just can't or even don't want to think about that. You didn't ask for this stupid condition and monitoring yourself can be very confronting.

Don't force yourself. Take your time and when you are ready, try to figure out which body positions and which activities cause an increase in symptoms. Once you work this out, it'll become your second nature to avoid these triggers.
Don't try to carry this burden alone:

Trouble shared is trouble halved. This ancient cliché definitely goes for such a bizarre and misunderstood condition like PGAD/ReGS.

Don't get stuck in your own, often irrational, thoughts and fears. Talk about it with your fellow sufferers. They understand when no one else does. You can find recognition and support especially from those who exactly know what you (both physically and emotionally) are going through.

Knowing that you're not the only one with these bizarre symptoms! Realizing that other women have learned to live with condition. Knowing that; will only make you stronger.

It's also nice to hear it 'from the horse's mouth, from first-hand experience. About what helps and what doesn't. About which doctors or therapists are understanding and which ones you can better avoid. About other fellow sufferers around the world, news in the media, etc.
Being active and not passively waiting for somebody to come along telling you what to do or what can help you get rid of your symptoms, helps! Working together, searching for solutions ourselves, gives us the feeling to be contributing to that solution.

And last but not least: Consolation, understanding, support from peers often works so much better than whatever other (psycho)therapy!

Join one of the support groups  today!

Friends and familie

Is there someone who you really trust and who is a good listener? Talk about your condition!

Other help

If you lack dear friends and family you can share with, and feel the need to talk with someone else, other than just with peers, consider getting a really good therapist or counselor...

Acceptance:

One day it gets through to you. You can't deny it anymore; you have PGAD/ReGS. Then the difficult process of acceptance begins. Insecurity about where it's all heading to and how it will affect your life. Unfortunately life is unpredictable and things happen to people. ReGS happened to you, so you'll have to make the most of it. This may sound simple but you don't have much choice. Realizing that is the first step towards acceptance.


How do you get there:

  1. One step at a time

    • Give yourself time to get used to what your body does to you. Rome wasn't built in a day! What you don't yet understand will take time to learn. Take the time you need.

    • Cry, swear, grieve and process... Give yourself space to feel your emotions!

    • Do not force yourself to get grip on your situation. You will automatically get grip when the time is right. See your condition as a sort of staircase. You have to climb each step in order to reach the top. Don't skip any steps, The risk of falling is too high. It will only slow down the process and make it longer in the end.

  2. Acceptance is not the same as passively waiting

    • The word 'passive' says it already: passive waiting makes you immobile. You give your own power away. And to whom are you giving your power? To your surroundings, your doctor, your boss, your colleagues, or whoever... If you do nothing, chances are that nothing happens. Risking in getting mired in loneliness and self-pity, and escaping reality. When you realize that, you can draw strength, even if it's just a little bit, by taking control yourself....

    • When you're ready, look into everything that can help you get your life back on track. Even if the 'track' is different than you had planned for yourself before.
Tight clothes and other discomforts:

  • Avoid wearing tight Jeans/pants!!

  • String underwear are cute but forget about them!

  • Inserting and removing tampons increases symptoms

  • Wiping your bottom on the toilet (unavoidable) increases symptoms

  • After urinating, try to pat dry without using any pressure
  • Brain:

    It's as though your mind is playing tricks on you. Between your legs you feel the same as before you had the condition. The difference is that before, you used to enjoy it A LOT. Now it seems like your brain has disconnected itself from your genitals and both parts are living separate lives. You don't want this, you never asked for this, you don't even think about sex, and are absolutely NOT sexualy aroused! But your genitals keep sending other signals. That feeling of almost-orgasm, it somehow must be related to horniness! But why isn't that so? You are practically going crazy from that intrusive and unrelenting feeling and don't understand it one bit!

    Actually, your brain does plays tricks on you. Big ones! Your brain bases itself on the wiring that it created before you got ReGS. That's called your frame of reference. The nerves that get stimulated by sexual arousal are the same ones that are now driving you insane and makes you want to jump through the roof. The cause of this stimulation isn't horniness, but faulty nerves. Your brain can't tell the difference (YET)! The nerves that continuously are being stimulated, and are associated with female orgasm, are sending wrong messages to your brain. Your brain interprets these messages the same way as it did before, telling you you're about to orgasm.

    However, you can teach your brain to interpret the signals in a different way and so create a new frame of reference. Yes, it's possible! REALLY!! But that's not easy and doesn't happen overnight. It takes time, persistence and a lot of willpower. You can train your brain to no longer associate these feelings with lust, but with discomfort. You can teach your brain to ignore these feelings and to stop letting them dominate your life. Once your brain understands that, living with the condition becomes much easier.
    Hot water bottle:

    A hot water bottle, gently placed on the genitals, sometimes helps
    Ice Pack:

    An Ice Pack helps some women. A word of warning: some women experience increased symptoms instead!
    Swimming - hot tubs:

    Swimming or a relaxing hot tub helps almost all women.
    Distraction:

    Seeking distraction is probably the most tried-and-true method. Not to simply be distracted for the sake of distraction, but to do something you're really interested in or something you can lose yourself in. In one of the other items you read about your brain. Here's why distraction works so well:

    First a weird example:
    Imagine, you get your fingers caught in a door. You hear a cracking sound and two of your fingers are broken. The pain is killing you! At that moment you won't feel your PGAD/ReGS any more. The pain in your fingers is dominant over the symptoms between your legs.

    Of course I'm not suggesting now that you smash your fingers in a door!!!!

    Distraction basically works the same as the painful example with your fingers Your brain let you experience what is most dominant at that moment. Doing something nice or something that demands all of your attention can through their dominance make your symptoms recede.

    Maybe you have wondered why sick people complain less on vacation or while watching an exciting movie. Maybe you've even criticized them for it. Like: "Well, at home they can't do anything but on vacation apparently they're fine!" Now that you know how it works, perhaps you'll be slower to judge. Distraction is a powerful way to not allow your symptoms to control your life. It requires practice, but it works! Try it, you'll see!!!
      
    Sex life:

    Well.... that's an bit complicated. On the one hand, you'd give anything to get rid of that horrible feeling. On the other hand, you couldn't care less about sex. Especially in the in the early stages of PGAD, you don't know what to do. Lots of sex with your partner or masturbation leaves you with mixed feelings. Feelings of disgust, shame and guilt. You have no control over the absurd demands of your lower half. You have no idea how to deal with it...
    Guilt and shame

    You did not ask for this condition. So don't be ashamed! You're not a nymphomaniac, you're not oversexed, and you don't have an obsessive-compulsive disorder. You have a physical condition which you can't change...

    Do not feel guilty if your symptoms almost drive you crazy and you need to release. The feeling can be so intense that release seems to be the only way out. Don't blame yourself. After all, you don't blame people who suffer from eczema for scratching...
    In the item about the brain we already mentioned your sexual frame of reference. It takes quite a while before you can differentiate between true sexual feelings and the intrusive symptoms of PGAD/ReGS. Over time, you will notice that your symptoms increase, after you try to get a release from ReGS/PGAD.

    It's not so strange that your symptoms after a ReGS-orgasm gets worse. The faulty nerve responsible for your symptoms was already tremendously overworked, leading to the symptoms. By stimulatiion (sex) it gets even more signals. In fact you (unintentionally) stimulate a nerve that already is tormented and should be left alone. And the consequence is that you end up with more symptoms than you had before the orgasm. That's why it's so important to learn to differentiate between libido-feelings and ReGS-feelings. As said before, that takes time to learn. To speed up that process, it would be wise to monitor yourself..
    Monitor yourself and pay attention to:

    • Do you have sexual thoughts and is it easy to reach orgasm? Then your libido most likely is talking.

    • Are you not thinking about sex and are you entirety focused on an orgasm just in order to get rid of that itchy feeling between your legs? Then it's PGAD/ReGS talking. It's difficult to achieve orgasm, if at all, despite the sensation of constantly feeling on the 'edge'. You tend to keep going and going and going... till orgasm finally comes. It almost drives you to despair.
    Learning to notice the difference between the two, also helps you to keep your symptoms a little under control. To not let them get even worse. The faulty nerve isn't too bothered when you have sex because you really want to, but it suffers A LOT when you have sex to get rid of your symptoms. A patient suffering from eczema learns over time that scratching makes the symptoms worse, and can even lead to pain. It's the same with PGAD! Recovery may take days. Days in which your symptoms will continue rising through the roof and you feel the urge to seek release again. A vicious circle, very difficult to escape from.....

    Maybe not so nice for your partner but the following is in both your interests:

    Don't have sex if you don't feel aroused. Women are inclined to go along if their partner wants to have sex, even if she isn't interested. But if you are not aroused, and therefore are not wet and swollen, then it's not smart to have sex. It will work counterproductive! You will get more and more reluctant towards sex and nobody will benifit from that! Not you, nor your partner. So, only have sex when you're really interested. Better to have less sex... than no sex at all! Your partner probably agrees with that.

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