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PGAD success stories

Discussion in 'Success Stories Subforum' started by Scytaic, Oct 31, 2018.

  1. Scytaic

    Scytaic Peer Supporter

    Hi! There's not enough PGAD success stories on the internet so I thought I'd write about mine especially because they were TMS. :) It might be long but for someone who is struggling with TMS PGAD right now I'm sure it'll be interesting and useful to read. :)
    I think it's important to know I had many reasons to have actually had REAL PGAD but I still didn't have it in the end. In 2016 I withdrew from Citalopram/Celexa after 2 years. I practically cold-turkey'd it (30mg to 0 in a week). I suddenly had bad OCD and anxiety which caused my brain to constantly clench and unclench my butt (like butt crunches) I could help it at all, I didn't know why it was happening but I knew it was a mental problem rather than physical. It stopped when I was distracted or asleep. This went on for 2 weeks and it was agony until I finally tried some painkiller cream which took my mind off it and it finally stopped completely! This left me with a bulge in the perineum and a lot of pain there though. Eventually the bulge slowly went away and I was left with lose skin.

    Before the bulge went away though, I had watched a documentary about a woman who has over 100 orgasms a day. This stuck with me for some reason and for about 2-3 months I started fearing my own body just knowing this could happen to anyone. One day I was out grocery shopping when the bulge started throbbing, it was normal it happened a lot of times since and even though there were no sensations to it, my extremely anxious, antidepressant-free mind assumed straight away it was an orgasm. I felt instant panic and the sudden feeling of unwanted arousal. For the past few days afterwards I believed fully I had PGAD even though I didn't have any more symptoms. I decided to look it up and found the name and realised it was about having constant arousal. Literally maybe a day or so later I began feeling unwanted arousal again. I believed I got this because I injured my pelvic floor. Then I searched more and found pudendal neuralgia and very quickly I began to get these symptoms too (electric shock feelngs, burning, stinging, stabbing, pins and needles, cold flashes, there might have been more but I forgot). Also, something important to keep in mind which I'll talk about later, my mum kept asking me what I was feeling and I was way too embarresed to say arousal so I instead explained it as tingling/tickling.

    After about 2 weeks I finally went the doctors and he reassured me that there's no way I have pudendal neuralgia. I was so relieved and all my symptoms completely vanished!! It had been a few days and then one morning I woke up with an orgasm (this is actually a normal thing for me, some women will feel it in their dreams but I'm a light sleeper and wake up as it gets to the orgasm part). Despite having this randomly my whole life, I straight away assumed I actually do have PGAD. I googled again and saw it was linked to SSRI withdrawal!! Instantly I felt the unwanted arousal again. I was a mess and throughout the weeks I had to keep referring it to tingling/tickling to the point where without even realising (so I'm not sure how long it even took) instead of the actual feeling of arousal, it literally became the feeling of tickling/tingling. Instead of feeling it almost constantly, it would come in a few second spikes just throughout the day. So there was already a change just based on how I perceived/explained it without even realising.

    I went back the doctors a few times and sometimes the reassurance would work and it would go away but eventually nothing could reassure me. I used to go on a website for people who withdrew from antidepressants as well as read blogs and websites about PGAD and it was all saying the same thing: "don't trust the doctor, it's not all in your head, there's nothing that can be done, 99% of the time it's pernemant". I felt so much grief for my health. I went to college but skipped most days. But it wasn't until months later I would realise that when I did go, I wouldn't feel the tingling pretty much for the whole time while I was distracted. In fact even when I wasn't distracted it wouldn't come back until I remembred it again. I noticed this would happen with everything like going out etc. Even with things that should have triggered the PGAD to be worse like car rides and sitting. If I was distracted it would be gone. Same with if I was reassured. If I was anxious it would come back and stay back until I had the distraction and reassurance again. My mum suggested it was psychsomatic which I never heard of before. So I started to see if I could make these sensations happen in my foot. And it worked after a few days! And just like in my groin, it stuck... And I started freaking out again lol.

    Eventually it all started getting better on it's own (I think my extra anxiety from withdrawal was wearing off) but at the same time I started getting very sick. One day I woke up with a fever over 42c and a ton of pain in my head, butt and stomach (bad sickness) and had to be admitted to the hospital. I had inflammation in my blood and blood in my pee but they couldn't find what was wrong with me. I was convinced that whatever it was was the cause of my tingling and I told them all about it. They gave me X-Rays, a CT scan and I saw a few specialists. They couldn't find what caused my sickness. While I was there I was such a mess of anxiety and hopelessness as each test was negative and I was convinced I had Pudendal Neuralgia. The antibiotics made me feel much worse mentally as well as the fact I had no sleep in the 4 days I was there. When I had panic attacks my symptoms would get so bad to the point I almost orgasmed. One night I felt as if I was constantly orgasming very mildly when I walked to the bathroom and back. It was a horrible time. The last night I had an MRI, by then I was a lot better (sickness and fever wise) and had a ton of antibiotics so they felt it was ok to discharge me. Before I went, they said my MRI was clear and at the time I believed this would show Pudendal Neuralgia or PGAD from the withdrawals. So when it was clear I cried of relief. I believed it was all either psychsomatic or whatever was wrong with me (still don't know to this day but because of the blood in urine they put it down to a kidney infection).

    So as I was recovering I was expecting the tingling to recover too but it within a few days I became more anxious that it wasn't going away. This made it worse and eventually I was well again with the same tingling. I started taking my antidepressant again but I still had the tingling. Same pattern of going away when distracted but all the anxiety had made the sensations worse and more frequent. I was getting better with more reasurance and distraction though and eventually I got obsessed with the band Gorillaz. I drew the characters, listened to the music, thought about them all the time and soon there wasn't room for my obsession with PGAD! As the obsession faded and with a ton more reassurance, so did my symptoms. They rebounded a few times in stressful situations but at some point they went away and never came back. I had this in total for about 5-6 months.
    (All symptoms I can remember: arousal, tingling, tickling, heaviness, burning, stinging, sharpness, stabbing, pinching, scratching, dry cracked feeling, toothache hypersensitivy feeling, feeling of a dull achy lump next to my pubic bone, tingling and arousal in feet, rawness, general discomfort, constant overawareness, pins and needles, blood rushing, tightness, cold flashes)

    But now for my second success story because it didn't end there sadly lol.
    I think it was literally just 1 or 2 months later, I had this horrible feeling out of nowhere that felt like a mix of arousal and needing to pee (sadly, to this day I still think this could have been real PGAD from the ADs but that's not the point right now for this story). It lasted maybe 3 hours and I managed to get a nurse appontment that same day (a nurse can't help with PGAD but it's all there was and I panicked). She said I had a UTI and I was so relieved thinking this was the cause. Anyway, obviously I still obsessed about it constantly and I remembered thinking "this is what real PGAD feels like, this is how they explained it on those websites". By next month I felt it again only milder and it was constant rather than coming in long waves like it did that time. It was the same feeling and it was always just in the lower part of my pubic bone. Again, I couldn't describe it as arousal to the people around me so I said it was like a horrible itch because that's the closest it felt like. And yep without realising, that's exactly what I felt like, just a strong unitchable itch rather than the UTI/arousal feeling it started with. This one came and went and believing it was a UTI again, I took cranberry pills which prevented it when I felt I was going to get it again.

    I noticed again that when I'm reassured it would go away, no matter how bad it felt. Distraction helped but it was definitely much harder than last time. This was very strong and constant and if it wasn't for the belief it was a UTI I would have been a mess. This lasted for maybe a year but at the end of that year I was about 80-90% convinced it was psychsomatic. One day I was having it very badly again and I was crying on the toilet thinking "how could I believe this was psychsomatic? This feels so real!" My boyfriend walked in seeing I was upset (he knows about my symptoms and fears). And he proposed to me!! Haha, while I was crying on the toilet lol. It was the best proposal ever honestly, because the happiness and shock just killed my symptoms right there and then. I realised this an hour later and was like... ok it really was psychsomatic this whole time! And it hasn't been back since. :)

    I had about 2 or 3 mini episodes that lasted a few weeks of different versions of unwanted arousal (I now realise arousal doesn't just come in one sensation lol). They all felt different, came with different symptoms, triggers, became harder to distract from but they all went away either by reassurance or prolonged distraction. I hope my weird, awkward embarresing stories help anyone who is going through anything similar. PGAD is a nasty condition and I have so much sympathy for anyone who has it as well as anyone who has the anxiety/tms version. The anxiety alone is bad enough but the symptoms and hopelessness is unbearable. Remember, you are not alone in this! I have seen many many people since that have had or have TMS, anxiety, psychsomatic PGAD. Yes it's going to feel real because the sensations, blood flow, nerve hypersensitivity, muscle tension is all real. Your brain is sending the same signals as they are to someone with real PGAD, PN or IC. The only difference is the cause. If you're struggling right now, feel free to inbox me. It's worse when you feel alone. I'll be here to listen and do my best to reassure you and send some helpful links. Sorry this was so long by the way lol. :)
     
    Last edited: Oct 31, 2018
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  2. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Scytaic,
    Your story shows the perseverance needed as you get caught in TMS thinking/symptoms and then release again and again. This takes strength, courage, and insight!!! I am happy for you. Your experience is a lesson to others here.
    Andy B
     
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  3. Scytaic

    Scytaic Peer Supporter

    Thank you so much! :)
     
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  4. Scytaic

    Scytaic Peer Supporter

    My friend wanted me to share her PGAD success story here as she doesn't have an account. :)

    "hey all!! i'm gonna share my success story with psychosomatic symptoms. i wanna keep this short and simple. i also wanna apologize for any mistakes ahead of time... oops. my symptoms started september this year, a few days after a pretty stressful/traumatic event. i have a history of dealing with anxiety, ocd spikes, and well... honestly? i'm a hypochondriac. big time. when i was outside walking around, i had what i now know is a panic attack. i've never experienced one like this before and i just kept walking when i should've sat down and calmed myself down. eventually i ended up getting this hot rush through my body, and i freaked out not knowing what was going on. it bothered me so much that when i went home, i googled my symptoms. doctor google gave me the diagnosis... pudendal neuralgia. and just like that, my whole world went spiraling. i felt all the symptoms and suddenly everything made sense, i had pudendal neuralgia. no way did i have just a plain old panic attack! not possible. i somehow developed one of the most rarest disorders known to man (i hope you guys can pick up on my sarcasm, lol.) those weeks were hell. i had no one to turn to, no idea where to go, my symptoms were unbearable and i didn't go outside. i refused, thinking my condition would worsen. i kept googling, hoping for some light, but i couldn't find anything except doom and gloom ahead. eventually, like my past obsessions and previous fears, i stopped googling and distracted myself. i noticed something, my symptoms were at ease. weird, right? back to google. of course i got bad news again, but then i met cat who told me about her experience. i had never heard of psychosomatic symptoms and i couldn't believe any of it. eventually after more research, i thought to myself, "hey... maybe she's right about this." i went to work and decided to ignore these doubts and fears. i didn't google anymore. i refused. i distracted myself and meditated and eventually my symptoms slowly disappeared. one day right before bed it hit me, my symptoms were gone completely. i finally accepted it was psychosomatic! i didn't have pudendal neuralgia, it was all in my head. say it with me-- all. in. my. head. you're probably thinking, "ok... aaand?" well, that's it really. i accepted that this was all a fear deep down and i beat it. i stopped giving it attention. i let it wilt away in the back of my head. and you should too. psychosomatic symptoms are scary and it feels all so real because, well, it is. you're making it real. it's just your fear growing. kinda like when someone is afraid of spiders and they start thinking there's one actually around them. it's just in the head! for those of you struggling right now and reading this-- you got this. you're ok. it's gonna be ok. it'll pass"

    She experienced a few relapses but has been symptom-free for maybe like a month now! Her main symptoms were strong unwanted arousal to the point she feared she needed to "release it" and I think she also got some burning, numbness, crawling and tingling. It's crazy how strong TMS can be!
    Also..
    Please if anyone else has any pgad success stories I would really love to hear about them as I'm going through another scare and have a Facebook group with a few people who are also scared of PGAD, IC, PN. So if I can share it with them it might help them a lot too! :)
     
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  5. Sadgirl12

    Sadgirl12 Newcomer

    Hi, I just wanted to share my story. So around 2016, my ex partner and I were having sex and I’ve never came from sex before. I remember I had to concentrate extremely hard that night and I ended up coming during sex after he was rubbing my clit extremely hard but after coming I felt like the arousal problem never left my body and I was freaking out. I’m not sure if it was nerve damage or my mind concentrating so hard that it caused this but After that night I started getting extreme tingly, pin and needles in my clit and extreme arousalness that never went away and I was in a very dark place. It made me feel so sick and google wasn’t helping. I went to seek help from specalist etc and no one knew what was going on. I tried explaining to them it was PGAD but they weren’t quite sure what it was. They perscribed me with numbing cream but none of that seemed to work. What I found to be a temporary relief was putting ice on it to numb it or getting someone to massage you. When I feel anxious I feel like it flares up. Anyways, after 3 month later, the symptoms subsided, I think because I started a new job, I didn’t really have time to google or think about it but I was still scared to have sex or even cum again. After a year I decided to give it a go, I remember afterwards I would feel like death. I couldn’t sleep cause a rush/wave will go up and down my body and head. I felt like death after sex every time and needed at least a couple of days to recover - sad I know. After a couple of months later I started getting use to it. I remember after sex I could finally sleep okay and that’s when I knew my body was used to it again. I didn’t feel like death after sex and I felt pretty normal. The PGAD feeling was probably only 5% and I was feeling myself again. I hardly felt it and I hardly felt aroused anymore - however it was always there, just very very subtle that I couldn’t really feel it anymore. I mean I went travelling, lived a normal life for two years and it was great. I never touched google again and I never really thought about it. Fast forward, 2 years later. I woke up one night to go to the bathroom, and went back to lay down, I felt a rush go up my body and my arousal problem became more prominent. I felt like an anxiety/panic attack coming and my clit was pulsing so hard. It became super aroused again and weirdly it’s just on one side of my vagina. It’s been 3 weeks since that and I’ve been feeling mentally ill and sick. I keep getting rushes and waves of anxiety going up and down my body and extreme sweatiness whilst being aroused. The rushes feel weird cause it’s a mixture between aroused and anxiety so that makes me feel crazy. I can’t sleep properly cause of it and my heart keeps pulpilating. My hands and feet are always extremely sweaty but these rushes last around 10 seconds and I pretty much have to control it aka think about something else for it to go away. I swear it’s a mind over matter kinda thing. If I think about it, it will get worst. The moment i start reading about it on google, my heart will start pulsing and the down there feeling starts to go crazy. If I’m at my bf and I’m just enjoying his company it’s not as bad. Note, last year I had an UTI infection which developed into an overactive bladder. I went to specialist and they said I had a very tight pelvic floor. I don’t know if all this is linked up since I read pelvic floor muscles excercise can relief the feeling. Anyways, currently suffering still. Hopefully symptoms will go away, will keep you updated ! Have faith you all! Things will get better hopefully
     
    Last edited: May 21, 2019
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  6. Scytaic

    Scytaic Peer Supporter

    Thanks for sharing your story, it's interesting how it went away when you were absorbed in your new job, it's like you were giving your body/brain permission to move on and have a new purpose in a way, maybe? Me and my sister both ended up getting the withdrawal PGAD (she didn't even know about it, and we withdrew at the same time in February last year) it's very very different to TMS PGAD in my opinion and experience. However because everyone is so different and their causes are different it's still so hard to know what's TMS and what's physical when I read other people's experiences and obviously I'm no expert or professional at all lol. To me though, it sounds like the tight pelvic floor is causing it (that's easily fixed with physio by the way!) but you should consider finding out why it's tight, usually it's because you hold stress there, just like a lot of people do in their backs. If you don't treat the cause (the stress or hidden trauma) it can keep coming back, if you're not sure what's causing it maybe you should think about how it all started, having sex - especially for the first time can be a huge thing to someone emotionally, mentally and physically, it could have reminded your subconscious and body of an old trauma or maybe the tight pelvic floor felt too weak to handle it? (Again I'm only guessing, I really don't know anything lol). I hope that helps though, with symptoms like PGAD it's always good to treat any possible cause asap, it really can make you suffer hugely but you might be able to fix it with physio and TMS therapy, there is always hope! :) Take care!
     
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  7. Sadgirl12

    Sadgirl12 Newcomer

    Hi just an update! I still have the symptoms of PGAD 24/7 but it’s subsides A LOT and now I’m just happily living my life not thinking about it too much. :)
     
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  8. Thank you everyone for sharing. It has been 24/7 for 3 months now - some days better and some days worse. I've been listen to Nicole Sachs and reading and rereading Dr. Sarno books for over 3 weeks now and doing journaling and meditation. There isn't a change in symptopms at all yet, but I do feel better otherwise and hopeful (or trying to be hopeful) that it will get better.
     
  9. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi tryingtogetbetter,

    Welcome to the Forum! It seems you're working hard and doing some great things for yourself. I wish you patience, strength and please continue to post.

    We have the free Structured Education Program at the Wiki which has helpe many people. You can make entries on the Forum, or otherwise respond and ask questions.

    This is good. You're already doing what Dr. Sarno said 90% of people won't do, which is think psychologically about physical symptoms.

    Andy
     

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