PGAD success stories?

[Rbvdk]

I'm not sure if this has been done yet but because PGAD is such a scary result of AD's I thought it would be really helpful to people who are fearing or developing it if anyone with a PGAD success story would reply here! 🙂

 

I have one of my own but I'm not sure if it counts because it turned out to be anxiety induced. When I tappered from 30mg to 0mg in just a week, I began to get a HUGE fear of PGAD (I didn't know it was a withdrawal effect of Ad's at the time). So much that i began to get extremely real feeling symptoms of it. The more I read, the more symptoms I got and sometimes I would get symptoms I hadn't read about until I got them which was even scarier. I had tons of scans and specilists and doctor visits until I finally (after about 7 months) convinced myself that I didn't actually have it - it was all psychosomatic. It took about 3 months of double checking/rebound worries etc but it finally went away completely!

 

When I upped my dose I then convinced myself that I had it again. This time was so much worse and I was convinced it was real this time, I had to stay in bed almost every day because of how bad it felt! I had it almost 24/7 and it went on for a year, then one day, I had it very badly as usual, but something snapped me out of it (my boyfriend proposed to me !) The symptoms just vanished instantly.. looking back that day, I managed to convince myself even more that these symptoms were psychosomatic too and they never came back since! This has happened to me 2 more times but they've gone away alot quicker now so I guess my anxiety was getting better! (Until now that I've finally reached 0 with withdrawing again lol..)

 

I hope that might help some people who also have psychostomatic/anxiety induced PGAD (or any condition really). Would love to hear everyone elses success stories whether it was real PGAD or anxiety induced! 🙂

[KayM]

Just wondering...what is PGAD?

[ChessieCat]

2 hours ago, KayM said:

what is PGAD

 

Persistent genital arousal disorder

[ShadowMan]

my symptoms of this that people name as "pgad" started weeks after discontinuing the drug, I didnt even knew abou it, so, wasnt psychosomatic. a year later I can tell that Im 98% free, sometimes I feel a little thing in the area but its rare and very mild 😃

[WiggleIt]

I suffered from horrific, painful PGAD that started several months after I was off meds.  I was shocked when it started up because I did not have it when all my other WD symptoms hit.  PGAD was a WD symptom that hit me way later.  It was definitely not psychosomatic.  

Now I'm four years off meds and honestly can't remember when my last PGAD episode was, which is a sign that it's been a really, REALLY long time since it's happened to me.

I'm not sure if this info helps or not, but I'm female. 

[Rbvdk]

On 6/11/2018 at 12:56 AM, ShadowMan said:

my symptoms of this that people name as "pgad" started weeks after discontinuing the drug, I didnt even knew abou it, so, wasnt psychosomatic. a year later I can tell that Im 98% free, sometimes I feel a little thing in the area but its rare and very mild 😃

 

3 hours ago, WiggleIt said:

I suffered from horrific, painful PGAD that started several months after I was off meds.  I was shocked when it started up because I did not have it when all my other WD symptoms hit.  PGAD was a WD symptom that hit me way later.  It was definitely not psychosomatic.  

Now I'm four years off meds and honestly can't remember when my last PGAD episode was, which is a sign that it's been a really, REALLY long time since it's happened to me.

I'm not sure if this info helps or not, but I'm female. 

Did you both have any strange symptoms before the PGAD started? I keep having a feeling of urine/fluid stuck in my urethra, just wondering if that's the beginning of it? So glad to hear you're both better, that's amazing!

[ShadowMan]

On 7/5/2018 at 9:06 AM, Rbvdk said:

 

Did you both have any strange symptoms before the PGAD started? I keep having a feeling of urine/fluid stuck in my urethra, just wondering if that's the beginning of it? So glad to hear you're both better, that's amazing!

Came out of nowhere, without any warning

[Rbvdk]

Just wanna bump this.

[ChessieCat]

cathyfrench posted this in her intro topic:

 

11 hours ago, cathyfrench said:

Hi India,

 

Thank you for your kind message. I agree with you that psychiatry can be extremelly dangerous and SSRIs are strong medications that shouldn't be given  so easily. Unfortunatly I noticed that most doctors i saw in my PGAD and tinnitus Journey don't know the side effects and the withdrawal side effects of benzos and antidepressants so instead of helping you withdrawing they give people more and more psychotropic drugs making them worse instead of being better because they mistake withdrawal symptoms for psychiatric symptoms.

 

Istill have PGAD and tinnitus unfortunatly. it has been 20 months now that I coldturkeyed Xanax and was put on the antideprrssant SSRI Sertraline.  When I was on sertraline and 6 months after stopping it, I used to have an hyperactive bladder and a urologit told me that he has many patients with an hyperactive bladder that are on antidepressants. Thanks to pelvic physiotherapy, I don't have an overactive and painfull bladder anymore (alongside with a non acidic diet and I take aloe vera)but I still have PGAD.  My PGAD is really mild now and it is really not as bad as before (the first months after stopping sertraline were hell). I am at the end of my Xanax tapper (I was put back on Xanax after my sertraline,risperidone and Anafranil short experience) and I think Xanax was making my PGAD worse,now that I neraly stopped it,my PAGD flare are not as strong as before.  I am the patient of a very good pudnedal nerve specialist who has several patients with PGAD (but I am her first with a PGAD caused by an antidepressant). She gave me tens (ankle and auricular tens), physiotherapy. I go to acupuncturer and I did some auriculotherapy. For my specialist my PGAD is caused by an sympathetic nervous system to active (basically the autonomous nervous system is ill) and a parasympathic nervous system that is too quiet. I have belly breathing exercices and tens to try to stimulate the vagus nerve and in return it stimulates the parasympathetic nervous system and quiets down the parasympathetic nervous system. It helps. I also got ganglion impar nerve block to quiet down the genital nerves in nerve and it also helped. I also use ice to quiet down the flare and the overactive sympathetic nerve.

 

I read Mad in America and I found their articles really good.  The website Riysk has also run a series of articles on PGAD and there are some petitions organised at the moment to have sexual dysfunction and PGAD written as a side effects from SSRIs and SNRIS on these medication's safety notice in the US and in Europe. One petition was sent to the FDA and another one to the European Medication Agency. https://rxisk.org/wp-content/uploads/2018/06/JRS745-1.pdf.

 

Good articles onPGAD

https://rxisk.org/pgad-clitoridectomy-or-ect/

 

I hope yo will get better.

 

Take care

 

Cathy

 

[Rbvdk]

My sister who had pgad, slow/weak urine flow, restless leg syndrome And akathesia has now healed. she was on citalopram for 2 years, withdrew in 10s each month (she was on 40mg) and a year later from 0 she's better. 🙂

[DinaDina]

Just want to read new success stories. Anybody?

[weemie]

7 months into healing from an adverse reaction and I'm getting pgad symptoms as well as muscle twitching in the legs. SCARY BUT IM GONNA GET THROUGH ! will update when im feeling better.

[peaceandlove]

On 7/19/2022 at 6:43 AM, weemie said:

7 months into healing from an adverse reaction and I'm getting pgad symptoms as well as muscle twitching in the legs. SCARY BUT IM GONNA GET THROUGH ! will update when im feeling better.

can you describe how pgad feels? I have a weird burning sensation/pressure down there & pelvic pain. Urge to urinate frequently 

[weemie]

@peaceandlove sounds like maybe you've got some pelvic floor/pudendal nerve issues going on. mine started out as stabbing, prodding pain in my clitoris which turned into weird nerve sensations that radiate from my genitals down into the arch of my left foot. the pain is gone, but I'm left with a constant "itch" in my legs and genitals. I have no refractory period now and lots of twitching and fluttering down there. fasciculations everywhere below the belt. arousal feels like the urge to pee now. the urge is there most of the time plus I can never fully empty my bladder. 

 

have you seen a pelvic floor therapist?

[peaceandlove]

On 9/6/2022 at 6:42 PM, weemie said:

@peaceandlove sounds like maybe you've got some pelvic floor/pudendal nerve issues going on. mine started out as stabbing, prodding pain in my clitoris which turned into weird nerve sensations that radiate from my genitals down into the arch of my left foot. the pain is gone, but I'm left with a constant "itch" in my legs and genitals. I have no refractory period now and lots of twitching and fluttering down there. fasciculations everywhere below the belt. arousal feels like the urge to pee now. the urge is there most of the time plus I can never fully empty my bladder. 

 

have you seen a pelvic floor therapist?

hey @weemiesorry just seeing this. But no I haven’t been to a pelvic floor therapist. Have you?

[GGGG]

On 7/5/2018 at 2:00 AM, WiggleIt said:

I suffered from horrific, painful PGAD that started several months after I was off meds.  I was shocked when it started up because I did not have it when all my other WD symptoms hit.  PGAD was a WD symptom that hit me way later.  It was definitely not psychosomatic.  

Now I'm four years off meds and honestly can't remember when my last PGAD episode was, which is a sign that it's been a really, REALLY long time since it's happened to me.

I'm not sure if this info helps or not, but I'm female. 

Did you cold turkey?

[CookiePretzel]

I had PGAD for a solid month and a half. It was crazy. First experienced it at around 6 months off. Like being on the cusp of a clitoral orgasm constantly. I went away very slowly; the intensity dulled over a couple weeks. Now I seem to get it briefly when my period ends and estrogen levels are rising. FWIW, 37 female fast taper off Prozac. 

[Adeeva78]

On 6/9/2023 at 6:40 PM, CookiePretzel said:

I had PGAD for a solid month and a half. It was crazy. First experienced it at around 6 months off. Like being on the cusp of a clitoral orgasm constantly. I went away very slowly; the intensity dulled over a couple weeks. Now I seem to get it briefly when my period ends and estrogen levels are rising. FWIW, 37 female fast taper off Prozac. 

I stopped Prozac cold turkey in March and my symptoms started beginning of April and I have still have them although they have somewhat lessened. Mine feels like a burning down there.

[DeeVe]

@weemie Hi Weemie, I just recently stopped Sertraline and now have Pgad. I’m so scared. I was just wondering how your symptoms are right now… hope to hear!