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PGAD success stories

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

  1. Scytaic

    Scytaic New Member

    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
    Snowman likes this.
  2. Andy B

    Andy B 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
    Scytaic likes this.
  3. Scytaic

    Scytaic New Member

    Thank you so much! :)
  4. Scytaic

    Scytaic New Member

    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!
    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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