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Persistent genital arousal disorder (PGAD)


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8 hours ago, Hopefull said:

Hi Rbvdk,

Sorry to hear that you are still struggling with the PGAD symptoms.

I think that spasms are part of PGAD.

I used to get it a lot at the beginning and I used to get it also when I would cut down on Mitrazapine.

It went away for a while,  until the beginning of November,  when I switched to Rameron SolTab, which is exactly the same thing, made by the same company,  only generic.

I am still experiencing it,  and frequent urination. 

I think my brain is adjusting to the tiny amount of Mitrazapine and the spasms are part of the WDS.

I know it will settle down eventually. 

Please don't feel disheartened,  the PGAD symptoms will eventually go away. 

It takes a while.  Even when you become symptom free,  occasionally you might experience very mild, arousal feeling,  until it eventually goes away. It is part of the healing process. 

You will also experience flare ups along the way,  and you have to be careful with the suppliments.

I avoided fish oil, magnesium and wearing jeans,  tight clothes,  because it would flare it up.

I found that burning feeling really uncomfortable and painful.

Do a sit bath in a cool water with a little bit of salt, it can help to ease the discomfort. 

It will go away,  so don't feel disheartened. 

Avoid triggers, and symptom free days is a sign that you are healing. 

Flare ups are part of the healing process and gradually it will become less and less. Hang in there and you will see that I am right. 

 

Take care,

Hopefull. :)

 

 

 

 

 

Hey thanks for replying:) Sorry you're still experiencing it, it sounds like the spasms you're getting is maybe the last of your PGAD flare up, like it's so minor/faded out that there isn't even arousal anymore which sounds like a good sign. :) I haven't been taken any supplements for a while but I'm not sure if I should now. My PGAD is confusing and worrying because it started off very tiny in August with literally just small 2 second waves literally maybe 3 times at most in the month, although one time when I was anxious I felt it for about an hour. Then it calmed down completely until October where I had strong and long flare ups but I'd have huge gaps inbetween either hours or days. Now this month I was hit with the worst PGAD feelings I've felt so far and I'm feeling it almost 24/7 which I've never experienced before. I'm worried about why I'm getting worse like It feels more like a gradual progression rather than a flare up. :( Sorry about sounding negative, I'm feeling so confused and scared right now but your reply really helped. :) Do you know what triggers it? I know my anxiety triggers it big time but most of the time I'll just wake up with it and it'll flare for a few hours and then calm but spike up throughout the day for seemingly no reason - although evenings are usually much better except for lately where I can't seem to even get an hour of being truly symptom-free anymore. :(

phew sorry this is long and negative, I'm so grateful for your replies I've been feeling pretty scared and alone in this and honestly talking to someone who's been through it and recovered almost completely is what I really needed.

Take care !:)

16.4.14 - 25.4.15 Took Paxil (??mg) - cold turkey. Had random pgad symptoms around this time but not sure when exactly.

?.5.14: Started Citalopram (10mg) / 17.5.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey. 11.16 Very mild pgad, PN symptoms and other withdrawals started.

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey.

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) pgad hit.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0mg. pgad worsened almost instantly from first tapper, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until late 9.18 (4 months since 0mg) where it all got SO MUCH worse for 1.11 years (with windows and waves).

1.9.20: 99% healed ❤️

31.5.21: Smoked weed 5 out of 9 days. Pgad and other old withdrawals came back, plus developed akathesia & fibromyalgia.

7.22: Steadily recovering again ❤

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  • 2 weeks later...
  • Moderator Emeritus

Thought it would be a good idea to copy this post by cathyfrench here:

 

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

 

Please DO NOT TAG me - thank you

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions. 

  MISSION ACCOMPLISHED:    (6 year taper)      0mg Pristiq      on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

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On 12/18/2018 at 6:31 PM, Rbvdk said:

Hey thanks for replying:) Sorry you're still experiencing it, it sounds like the spasms you're getting is maybe the last of your PGAD flare up, like it's so minor/faded out that there isn't even arousal anymore which sounds like a good sign. :) I haven't been taken any supplements for a while but I'm not sure if I should now. My PGAD is confusing and worrying because it started off very tiny in August with literally just small 2 second waves literally maybe 3 times at most in the month, although one time when I was anxious I felt it for about an hour. Then it calmed down completely until October where I had strong and long flare ups but I'd have huge gaps inbetween either hours or days. Now this month I was hit with the worst PGAD feelings I've felt so far and I'm feeling it almost 24/7 which I've never experienced before. I'm worried about why I'm getting worse like It feels more like a gradual progression rather than a flare up. :( Sorry about sounding negative, I'm feeling so confused and scared right now but your reply really helped. :) Do you know what triggers it? I know my anxiety triggers it big time but most of the time I'll just wake up with it and it'll flare for a few hours and then calm but spike up throughout the day for seemingly no reason - although evenings are usually much better except for lately where I can't seem to even get an hour of being truly symptom-free anymore. :(

phew sorry this is long and negative, I'm so grateful for your replies I've been feeling pretty scared and alone in this and honestly talking to someone who's been through it and recovered almost completely is what I really needed.

Take care !:)

Hi Rbvdk,

How are you?  Any better? 

I am still experiencing spasms,  but less frequently. 

You ask what triggers flare ups, for me it was supplements, even magnesium, anxiety, stress in general,  driving,  sitting,  walking, tight clothing,  scented bodywash.

You will heal but for some people it takes time.

 

DRUG HISTORY:

 

November 2013- Zoloft, ( Bad reaction).

January 2014 - March 2014 Seroquel.( Quit Cold Turkey).

January2014- Mirtazapine, I was taking 15mg at one stage, reduced to 7.5mg, Pgad reactions to Mirtazapine. Doctor kept increasing it to 37.5mg, until July 2014. No improvement, experiencing panic attacks, on 37.5 mg. I had enough by October 2014. Began tapering.

October 2014- Started tapering Mirtazapine from 37.5mg.

September 2015- Down to 4mg of Mirtazapine. Crashed.

September 16th- Up dosed to 5mg. Held this dose for almost 5 months. Stabilised.

February 2016- Began tapering again. From 5mg to 4.5mg of Mirtazapine. (Rocking the boat, again)! Lol. :(

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  • 5 weeks later...

Thank you both ❤️ Sorry for the late reply. I've been doing better since late December. I do a lot of things to try and keep the PGAD quiet/away and I had my first ovulation and period without any flare ups! My triggers are similar and I do my best to avoid them: stress, anxiety, sugar, car rides, sex (worst). But at a cost I'm house-bound. 

 

My doctor also said my problem was a hypersensitive nervous system. He believes me that it was caused by withdrawing and has been researching medication-induced PGAD. It totally makes sense to me because I have other problems that sound like a hypersensitive nervous system (I assume - I've never googled it so I'm not sure). Like tinitus, extreme emotions, hypersensitivy to certain foods (caffeine, sugar, onions), head zaps during periods and/or colds (still after 10 months since withdrawing!!), CONSTANT earworm, nightmares, problems regulating temperature, diarrraha, weird bladder and urethra sensations after peeing, possibly other things I've forgotten. I worry the most about the head zaps because it makes me feel like I'm still just at the beginning of the withdrawals, is that what it means or is it possible to have them 'till the end?

 

Hope this helps, and I hope you're both doing well. Thank you again. :) 

16.4.14 - 25.4.15 Took Paxil (??mg) - cold turkey. Had random pgad symptoms around this time but not sure when exactly.

?.5.14: Started Citalopram (10mg) / 17.5.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey. 11.16 Very mild pgad, PN symptoms and other withdrawals started.

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey.

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) pgad hit.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0mg. pgad worsened almost instantly from first tapper, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until late 9.18 (4 months since 0mg) where it all got SO MUCH worse for 1.11 years (with windows and waves).

1.9.20: 99% healed ❤️

31.5.21: Smoked weed 5 out of 9 days. Pgad and other old withdrawals came back, plus developed akathesia & fibromyalgia.

7.22: Steadily recovering again ❤

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  • 4 weeks later...
  • Administrator

Came across this paper today. Suggests PGAD might be caused by muscle tension, which is common in withdrawal, and a therapy to reduce the tension resolved PGAD. (In a pregant woman, however, hormonal changes and physiological changes might be involved.)

 

Link downloads pdf.

 

http://www.psas.nl/artikelen/2009PGADTali.pdf

 

https://tallirosenbaum.com/wp-content/uploads/2019/10/Physical-Therapy_Treatment_of_Persistent_Genital_Arousal_Disorder_During_Pregnancy.pdf

 

Physical Therapy Treatment of Persistent Genital Arousal

Disorder During Pregnancy: A Case Report

Talli Yehuda Rosenbaum, BS, PT

Inner Stability, Ltd-Urogynecological Physiotherapy, Bet Shemesh, Israel

DOI: 10.1111/j.1743-6109.2009.01654.x

 

ABSTRACT

Introduction. Persistent genital arousal disorder (PGAD) is described as the spontaneous, intrusive, and unwanted genital arousal in the absence of sexual interest and desire. Whether the etiology of this disorder is essentially central or peripheral is unclear; however, a presenting symptom may be persistent engorgement of genital erectile and vascular tissue.

 

Aim. To describe a case of a distressed 27 year old pregnant woman with symptoms consistent with PGAD, and the intervention leading to the resolution of symptoms.

 

Methods. A patient with symptoms of PGAD was assessed. Information regarding this condition was offered. A manual therapy treatment was provided to decrease muscle hypertonus near the pudendal nerve, and a home intervention was suggested.

 

Results. Complete resolution of symptoms per patient’s report 1 week later.

 

Conclusion. Treatment with pelvic floor manual therapy directed at the pudendal nerve may provide safe and significant relief from PGAD symptoms in a pregnant woman patient.

 

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This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

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  • 2 months later...
On 2/27/2019 at 3:38 AM, Altostrata said:

Came across this paper today. Suggests PGAD might be caused by muscle tension, which is common in withdrawal, and a therapy to reduce the tension resolved PGAD. (In a pregant woman, however, hormonal changes and physiological changes might be involved.)

 

Link downloads pdf.

 

http://www.psas.nl/artikelen/2009PGADTali.pdf

 

Physical Therapy Treatment of Persistent Genital Arousal

Disorder During Pregnancy: A Case Report

Talli Yehuda Rosenbaum, BS, PT

Inner Stability, Ltd-Urogynecological Physiotherapy, Bet Shemesh, Israel

DOI: 10.1111/j.1743-6109.2009.01654.x

 

ABSTRACT

Introduction. Persistent genital arousal disorder (PGAD) is described as the spontaneous, intrusive, and unwanted

genital arousal in the absence of sexual interest and desire. Whether the etiology of this disorder is essentially central

or peripheral is unclear; however, a presenting symptom may be persistent engorgement of genital erectile and

vascular tissue.

 

Aim. To describe a case of a distressed 27 year old pregnant woman with symptoms consistent with PGAD, and the

intervention leading to the resolution of symptoms.

 

Methods. A patient with symptoms of PGAD was assessed. Information regarding this condition was offered. A

manual therapy treatment was provided to decrease muscle hypertonus near the pudendal nerve, and a home

intervention was suggested.

 

Results. Complete resolution of symptoms per patient’s report 1 week later.

 

Conclusion. Treatment with pelvic floor manual therapy directed at the pudendal nerve may provide safe and

significant relief from PGAD symptoms in a pregnant woman patient.

 

That's so interesting, to be honest I would be so relieved if it was just muscle tension (there's so many theories of how meds give you PGAD but they're all so scary and complicated). I've been doing so badly this month I can't even walk or think anymore without it flaring, it happened so suddenly and I'm always aware of mental and physical triggers but this was for no reason. It reminds me of the head zaps and how they are triggered just by thoughts or movement. Maybe it's subconscious/withdrawal stress tensing my muscles badly again? 

16.4.14 - 25.4.15 Took Paxil (??mg) - cold turkey. Had random pgad symptoms around this time but not sure when exactly.

?.5.14: Started Citalopram (10mg) / 17.5.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey. 11.16 Very mild pgad, PN symptoms and other withdrawals started.

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey.

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) pgad hit.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0mg. pgad worsened almost instantly from first tapper, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until late 9.18 (4 months since 0mg) where it all got SO MUCH worse for 1.11 years (with windows and waves).

1.9.20: 99% healed ❤️

31.5.21: Smoked weed 5 out of 9 days. Pgad and other old withdrawals came back, plus developed akathesia & fibromyalgia.

7.22: Steadily recovering again ❤

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  • 1 month later...

Hi, I hope I'm ok to post this here but after reading what Cathy said again (she also said this in a PGAD group I'm in on Facebook) she said PGAD might be an autonomic neuropathy. Apparently it's progressive but you can have moments of it being quiet or gone but in general it gets worse. I'm worrying a lot now, since mine was so mild at first and then got worse, was a bit quiet for a couple of months and then worsened even more. I hope this doesn't scare anyone else but I really want to know everyone's thoughts on this. Could this be the same for other withdrawals too?

16.4.14 - 25.4.15 Took Paxil (??mg) - cold turkey. Had random pgad symptoms around this time but not sure when exactly.

?.5.14: Started Citalopram (10mg) / 17.5.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey. 11.16 Very mild pgad, PN symptoms and other withdrawals started.

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey.

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) pgad hit.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0mg. pgad worsened almost instantly from first tapper, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until late 9.18 (4 months since 0mg) where it all got SO MUCH worse for 1.11 years (with windows and waves).

1.9.20: 99% healed ❤️

31.5.21: Smoked weed 5 out of 9 days. Pgad and other old withdrawals came back, plus developed akathesia & fibromyalgia.

7.22: Steadily recovering again ❤

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  • 2 weeks later...

So I think the vaginal issues I have may be pgad.  I'm beside myself today.  It's a never ending loop of misery.   This came about just two days ago.  After a bout of some kind of restless leg issue.  That got better but this appeared.  I am meditating, deep breathing, trying to distract but it's too much to deal with.   Last med reduction was 6/5 gabapentin .  I'm beside myself.  Can anyone else tell me if they do actually relieve themselves?  Maybe tmi to ask but I just felt like I had to.  Do you do so or fight it?  I find orgasm too stimulating on my nervous system, but I didnt know what else to do.  And I cant stop going to the bathroom.  This has to be the worst symptom yet.  If this is all while still even on meds I hate to see after im off all of them.  

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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On 7/13/2019 at 12:42 PM, BfromNJ said:

So I think the vaginal issues I have may be pgad.  I'm beside myself today.  It's a never ending loop of misery.   This came about just two days ago.  After a bout of some kind of restless leg issue.  That got better but this appeared.  I am meditating, deep breathing, trying to distract but it's too much to deal with.   Last med reduction was 6/5 gabapentin .  I'm beside myself.  Can anyone else tell me if they do actually relieve themselves?  Maybe tmi to ask but I just felt like I had to.  Do you do so or fight it?  I find orgasm too stimulating on my nervous system, but I didnt know what else to do.  And I cant stop going to the bathroom.  This has to be the worst symptom yet.  If this is all while still even on meds I hate to see after im off all of them.  

It will eventually calm down with time when you stop the pills. Same with the frequent urination symptoms as well. Both will calm down and go away eventually.

 

Relieving yourself only makes it worse. Try taking warm showers, go for a relaxing walk outside with nature. That stuff will help get your mind off of the pgad symptoms and give you a break from the torture.

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15 minutes ago, johnson said:

It will eventually calm down with time when you stop the pills. Same with the frequent urination symptoms as well. Both will calm down and go away eventually.

 

Relieving yourself only makes it worse. Try taking warm showers, go for a relaxing walk outside with nature. That stuff will help get your mind off of the pgad symptoms and give you a break from the torture.

Thank you for the reply.  So difficult these things that come with these meds.  And I'm on three so I have a long way to go.  Not even sure which one is causing it or if it's withdraw.  

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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can someone tell me what doctor I should start with to see?  my gyno?  A neurologist?  Just rule out anything physical.  

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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3 hours ago, johnson said:

It will eventually calm down with time when you stop the pills. Same with the frequent urination symptoms as well. Both will calm down and go away eventually.

 

Relieving yourself only makes it worse. Try taking warm showers, go for a relaxing walk outside with nature. That stuff will help get your mind off of the pgad symptoms and give you a break from the torture.

I see though that it is both caused by the meds themselves and withdraw.  I started to have restless type leg issues first, very bad, coincidentally after a bike ride (something I rarely do, it had been years previously) . the restless leg issue came on the same day.  that abated and the next day I came up with this horrible thing.  I cant help but wonder if that bike ride aggravated some nerve. 

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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6 hours ago, BfromNJ said:

I see though that it is both caused by the meds themselves and withdraw.  I started to have restless type leg issues first, very bad, coincidentally after a bike ride (something I rarely do, it had been years previously) . the restless leg issue came on the same day.  that abated and the next day I came up with this horrible thing.  I cant help but wonder if that bike ride aggravated some nerve. 

It's not caused by riding a bike. I remember the day before I got pgad I was running outside in the cold and then got pgad the next day. I actually thought that running out in the cold could have caused it. But that's nearly impossible. However when it happened my mind was all over the place and I had no idea what was going on with me. So I came up with all these crazy ideas as to what possibly could have caused it. If you feel that bike riding may aggravate it then maybe stop for a while. But it's definitely not the cause of it.

 

Just try and relax. The restless legs will eventually go away as well.

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18 hours ago, johnson said:

It's not caused by riding a bike. I remember the day before I got pgad I was running outside in the cold and then got pgad the next day. I actually thought that running out in the cold could have caused it. But that's nearly impossible. However when it happened my mind was all over the place and I had no idea what was going on with me. So I came up with all these crazy ideas as to what possibly could have caused it. If you feel that bike riding may aggravate it then maybe stop for a while. But it's definitely not the cause of it.

 

Just try and relax. The restless legs will eventually go away as well.

the restless leg did pass.  and was replaced with the awful misery.  :(  cant even wear pants.  I am going on a cruise sunday and all I can think of is how am I going to deal with this?

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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  • 1 year later...

I have this symptom, though no where near as intense aa the original poster. I am relieved to know that it will lessen. 

On many different psychotropic cocktails for over 30 years, but most recently:

600mg Gabapentin, 300mg Lamictal, 30mg lexapro, and 7.5mg Mirtazapine. I weaned off of each seperately, the total time it took me to wean off of all of them was around four months, and waited between 1-2 weeks in between each taper.  I am currently not taking any psychotropic meds. I take synthroid for stabilizing my thyroid function. I also forgot to mention that I had four rounds of TMS, which was wonderfully effective for around 4 months each time, but then stopped helping. It is also exorbitant, and I still have a few thousand dollars worth of medical debt. 

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  • 5 months later...

Hi all, I just thought I'd make a topic where, hopefully, all of us with the same symptoms can come together in one place and give our experience and anything that may or may not have helped during this difficult time.

 

I have struggled to find similar stories elsewhere on the Internet bar a few rare instances here and there. Until I found this site.

 

My symptoms personally are that I have a constant urge to urinate, even after going. The feeling never really let's up although in the evenings it tends to calm down slightly most of the time. 

 

This all started when I was on 20mg of Citalopram and I have currently been off them for 3 months and still have the same symptoms.

 

In the beginning I had burning after urinating, not during. It was when I'd put the little soldier back in my boxers that I would experience this. I can hold the pee fine. Some days my bladder fills up rather quickly and others it's just the constant urge.

 

I also had the exact same experience when I was on 20mg of Citalopram in 2015. It took about 8 months to go but it did go. I have never experienced this problem any other time in my life.

 

So anyone else with similar/same symptoms or experiences feel free to pitch in down below so we can beat this thing together.

 

Also I'd like to hear a few success stories to give us the motivation we need to carry on through this, as it is horrendous. I have felt suicidal a fair few times with this.

 

Thanks for reading, sorry for the long post!

 

Here's to healing ❤

Citalopram 10mg 2014 - 2015

Citalopram 20mg 2015

Cold turkey 2015

Citalopram 20mg January 2020

Cold turkey January 2021 

 

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I went through various periods of the feeling of constantly needing to urinate.  I am not 100% sure what may have caused it but have my theories.

At my very worst point of withdrawal symptoms my stomach was causing me issues that I had never experienced before.  I never got a diagnosis from a doctor regarding my stomach issues despite visiting several times.  As usual they do not understand withdrawal and attributed it to IBS.  My own theory was my serotonin was out of balance from experiencing terrible withdrawal and since there is a lot of serotonin activity in your stomach it caused a lot of my stomach distress, including IBS which I had not had previously.  It seemed like I was not able to get the nutrients out of food as efficiently as before.  I would notice that if I ate fattier foods I had more energy, but if I ate vegetables I felt tired and lethargic.  Now that I feel my gut is operating more normally I feel the opposite - fatty foods slow me down and I feel grate eating a healthy diet of vegetables.

 

Sorry to get off subject, just a small backstory in how much I truly believe these meds can change our normal body rhythms.  During this time I would experience bouts of having to urinate frequently.  Sometimes if I drank something the water would seemingly just flow right through me.  Other times it just felt like I needed to go, but didn't have to.  Even to the point where my head would feel annoyed and cloudy.

At one point for my IBS issues I did get an ultrasound.  It came up showing nothing, but the technician did tell me that your stomach or intestines can get irritated and start to press on the bladder or nearby areas causing that annoying sensation.  He let me know that eating or drinking certain foods can cause it: onions, peppers, spicy foods, coffee, and carbonated drinks were big culprits.  I cut out as much as I could of those foods and noticed a pretty good reduction in symptoms.  I would have flare-ups from time to time, but it got a lot better.

 

Now that my withdrawal systems have improved from that time period I do not notice the urge to urinate unless I venture into some food groups that may irritate my stomach.  I have relaxed and allowed myself to eat onions and carbonated water from time to time.  Sometimes I don't have any symptoms, other times very mild symptoms show.  I did read that if you eat triggering foods cooking them can take out the parts that irritate your stomach, so I have made an effort when I do eat onions or peppers to try and cook them rather than eat them raw.

 

The other thing I would say is that when in withdrawal it seems like any symptom can be possible, sometimes because it created a new and temporary sensitivity or for no identifiable reason at all.  My mindset was if it concerned me I did some basic health checks to make sure I was okay, but tried not to go down the rabbit hole and track down every symptom as they seemingly came and went as they pleased during withdrawal with no rhyme or reason.

 

 

40 yo Male. Started Paxil about 15 years ago. 10 mg (pill weight .125 - .129 g). 5 yrs wanted less side effects, doctor took me off Paxil over couple week period and put me on Wellbutrin. Not good. Went back on Paxil. Relieved my symptoms, but didn't work as well and more side effects. Severe reaction between Paxil and Zomig Summer of 2012. Head was affected during warmer days (cloudiness, confusion, pressure). Began 10% withdrawal 10/24/12.

Withdrawel helped many symptoms, but also added side effects: nausea, dizziness, tiredness. Hyper-anxiety started January 2014.

Went through a 2 year period of de-realization (2016-2018).  Rarely any windows.  
Current dose: 0.00 as of 4/10/21.  Made a lot of progress in my withdrawal symptoms the last 2 years of my taper.  I think doing a liquid taper helped stabilize things on the lower doses.  A lot of my symptoms have reduced significantly.  Hoping for even more improvement now that I am off.
My thread: http://survivingantidepressants.org/index.php?/topic/8909-rusty1-paxil-withdrawal-help-and-advice-welcome/#entry150222

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@Rusty1 thanks for your reply.

That is very interesting about the certain foods, I've not had much stomach trouble but the first time I was on a SSRI I did do. 

 

I have noticed certain things do aggravate it like fizzy drinks or coffee etc, so I'm strictly staying to water for now and the odd juice here and there. 

 

I Will keep your advice in mind as anything that helps this symptom is a plus at this point. It's so aggravating. 

 

Thank you again

Citalopram 10mg 2014 - 2015

Citalopram 20mg 2015

Cold turkey 2015

Citalopram 20mg January 2020

Cold turkey January 2021 

 

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Hot chocolate if it contains caffeine is also a big no no! 

Citalopram 10mg 2014 - 2015

Citalopram 20mg 2015

Cold turkey 2015

Citalopram 20mg January 2020

Cold turkey January 2021 

 

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Hi! I'm glad that you made a topic here. I really hope that we will be able to win together.

 

Do you have PGAD too? What symptoms do you have? I mean PGAD.

25 November 2020 - 22 December 2020 - Zoloft (3 weeks - 12.5 mg, 1 week - 25 mg); 1 January 2021 - Zoloft (12.5 mg)

18-24 December 2020 - Teraligen 2.5 mg-3.75 mg (Russian antipsychotic)

18-28 December 2020 - Eglonil 100 mg (Sulpiride)

 

Supplements: magnesium

 

Symptoms since stopping Zoloft: overactive/painful bladder, pelvic pressure, PGAD, severe anxiety

 

 

 

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@DinaDina

I'm not sure if I have PGAD but from what I have read, the constant urge to urinate is common with the posts I've read regarding PGAD. 

 

That is my most aggravating symptom as of yet. I do have pain sometimes but had some health checks to rule things out, just in case. As usual the doctors don't want to blame it on the drugs they prescribed. But this has happened to me twice now and both times I was taking the same SSRI! So that is no coincidence, it IS the meds causing it. It seems time is the best healer for us.

Citalopram 10mg 2014 - 2015

Citalopram 20mg 2015

Cold turkey 2015

Citalopram 20mg January 2020

Cold turkey January 2021 

 

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PGAD is a constant arousal. PGAD can be with bladder issue or without them but only bladder issues are not PGAD. As for me PGAD is much worse than bladder issues. But of course bladder issues are awful too.

25 November 2020 - 22 December 2020 - Zoloft (3 weeks - 12.5 mg, 1 week - 25 mg); 1 January 2021 - Zoloft (12.5 mg)

18-24 December 2020 - Teraligen 2.5 mg-3.75 mg (Russian antipsychotic)

18-28 December 2020 - Eglonil 100 mg (Sulpiride)

 

Supplements: magnesium

 

Symptoms since stopping Zoloft: overactive/painful bladder, pelvic pressure, PGAD, severe anxiety

 

 

 

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@DinaDina 

I could definitely say that it does feel like an arousal at times yes. Like a pressure around the bladder which gives me the constant urge to urinate. I've seen a few people mention this as a symptom of their PGAD but I do think these issues have a lot in common with each other and could be the same thing, it's just some people feel different sensations than others.

Citalopram 10mg 2014 - 2015

Citalopram 20mg 2015

Cold turkey 2015

Citalopram 20mg January 2020

Cold turkey January 2021 

 

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  • 1 month later...

Little update for anyone seeing this post.

 

I have had a good past few weeks, very mild feelings and sometimes none at all...Up until this past Monday.

 

The only thing different for me that I can put down as a trigger is sex. That is what seems to set it off and flare it up for a few days.

 

Other than that, I have been trying a low carb diet which generally makes me feel better in myself.

 

Feel like im going round in circles with this thing.

 

I think I see the end of the tunnel and then I go right back to square one. 

 

 

Citalopram 10mg 2014 - 2015

Citalopram 20mg 2015

Cold turkey 2015

Citalopram 20mg January 2020

Cold turkey January 2021 

 

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  • 2 weeks later...

@Healthanxiety101I have been avoiding sex (and masturbating) since March. I'm sure that it gets my PGAD really worse but I didn't notice that it affected urination. 

25 November 2020 - 22 December 2020 - Zoloft (3 weeks - 12.5 mg, 1 week - 25 mg); 1 January 2021 - Zoloft (12.5 mg)

18-24 December 2020 - Teraligen 2.5 mg-3.75 mg (Russian antipsychotic)

18-28 December 2020 - Eglonil 100 mg (Sulpiride)

 

Supplements: magnesium

 

Symptoms since stopping Zoloft: overactive/painful bladder, pelvic pressure, PGAD, severe anxiety

 

 

 

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  • 1 month later...

Not too many of us here on this thread, but if someone does happen to read this that found their pgad was from something other than withdraw and just coincidentally it happened to come about during withdraw Id like to hear about it.  Im talking about maybe from a pinched nerve, pelvic floor disfunction, etc.  I had a fall in February and I hit my tailbone, so I am wondering if it could have come from that.  I was just at the orthopedic doctor this morning for hip pain and probably should have mentioned it to her but I did not think of it.  Darn.  Maybe she could have send me for a sacral mri to rule things out.  Has anyone had any tests done? 

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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hello. I am once again dealing with this terrible issue.  :(  Of course the meds point to the reason behind this, but I am also trying to rule out anything else, such as a pinched nerve, cysts, etc etc.  But I am unsure which doctor to turn to.  I am seeing my gyno on 9/1, saw a neurologist but i only touched on it because at the time it was not as distressing and I thought it was gone so we only discussed another issue i have going on.  So I am trying to get back into the neurologist and I have an appointment with an ortho (because I had a bad fall on my tailbone some months back.  

 

Can anyone tell me if there is another kind of specialist i can see about nerves, etc in the pelvic area?  Or do i start with my gyno and see if she can do a pelvic mri and refer me out to another specialist?

 9/2018- lexapro low dose few days.11/3/2018- zoloft 2 days

11/7/18  - 11/15/18 - Prozac 9 days, from 10 mg for week, to 20

11/16  inpatient put on Lexapro for a few days, Cymbalta, 2 days

11/24-12/8 - gabapentin 100 mg 3xs per day - a very fast taper

1/7 - tbuspar for  three days- blurry vision, jerky eye

1/17/19 - 2/15/19- mirtazapine 15 mg - started taper on 1/30 

2/20/19 gabapentin 600 mg. .  12/20-  taper finished

2/20/19 - seroquel 25 mg current - taken  10 pm

2/20/19- luvox (generic) 25 mg.  4/6/19  to 18.75 mg .held  . Started taper again  1/7/21- 15 mg, 2/7/21- 12.5 mg, 3/7/21 -10 mg, 4/1/21- 9 mg, 5/1/21- 8.1 mg, 5/27/21- updose to 10 mg,  6/21-  in patient updose to 50 mg,  6/25/21- reduce to 10 mg (current) .  9/5- split dose 5mg am/5 mg pm.  9/20- 4 mg am/5 mg pm . 

9/1/21-  took one dose of vistril 50 mg.   

9/1/21-accidental double dose of seroquel- 50 mg 

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  • 3 months later...
On 7/16/2017 at 7:07 AM, Hopefull said:

 The one thing that I found helpful was accupuncture.  It received the symptoms a bit

@Hopefull hi, hopefully, I am currently seeing an acupuncturists. What did you tell them so they knew where to work? Did they already have information on pgad?

Current: Bupropion 450mg, Neurontin 800mg, Klonopin 0.5mg

History:

July 2020: started Cogentin 1mg, Lamictal 50mg, Zoloft 150mg, Zyprexa 5mg (+5mg as needed), Klonopin 0.5mg

November 2020: stopped all meds cold-turkey

February 2021: started Latuda 60mg, Lithium 300mg, Melatonin 5mg, Protonix 40mg, Topamax 25mg

2 weeks later: stopped Topamax, increased Lithium 900mg, started Klonopin 1mg, Lexapro 20mg, Neurontin 400mg

April 2021: started Bupropion 150mg, Revia ?mg

May 2021: stopped ReviaProtonixLexaproincreased Neurontin 800mg, started Celexa 10mg

August 2021: decreased Celexa 5mg (stopped Celexa 2 weeks later), increased Bupropion 300mg

September 2021: increased Latuda 80mg

October 2021: decreased Lithium 600mg for 4 daysLithium 300mg for 4 daysstopped LithiumLatuda

     increased Bupropion 450mg, started Remeron 15mg, decreased Remeron 7.5mg, stopped Remeron

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@BfromNJ

Hope you are doing better by the time you get this message.

A gynecologist would be a good place to start. A pelvic physical therapist may help with symptoms and give insight

 

wigglelt had this to say about pelvic pts:

The exercises you find online will not be helpful bc they mostly focus on contraction.  If you go into a pelvic PT office, a GOOD pelvic PT will have you lay on a table and they will insert their finger and gently massage the muscles to relax them (again, they are NOT sexually touching you.  It's internal, but they are not touching in a way to make you orgasm), which in turn theoretically relaxes the nerve signals down there, too.

 

I know my pelvic PTs work with people with PGAD, but I don't know if medicinally induced PGAD would respond any differently.

 

I seriously doubt there are any effective pelvic PT exercises for PGAD described online.  Most pelvic PT stuff that you find online focuses on Kegels, but the whole field of pelvic PT is A LOT more complex and you have to go get evaluated in person. 

Current: Bupropion 450mg, Neurontin 800mg, Klonopin 0.5mg

History:

July 2020: started Cogentin 1mg, Lamictal 50mg, Zoloft 150mg, Zyprexa 5mg (+5mg as needed), Klonopin 0.5mg

November 2020: stopped all meds cold-turkey

February 2021: started Latuda 60mg, Lithium 300mg, Melatonin 5mg, Protonix 40mg, Topamax 25mg

2 weeks later: stopped Topamax, increased Lithium 900mg, started Klonopin 1mg, Lexapro 20mg, Neurontin 400mg

April 2021: started Bupropion 150mg, Revia ?mg

May 2021: stopped ReviaProtonixLexaproincreased Neurontin 800mg, started Celexa 10mg

August 2021: decreased Celexa 5mg (stopped Celexa 2 weeks later), increased Bupropion 300mg

September 2021: increased Latuda 80mg

October 2021: decreased Lithium 600mg for 4 daysLithium 300mg for 4 daysstopped LithiumLatuda

     increased Bupropion 450mg, started Remeron 15mg, decreased Remeron 7.5mg, stopped Remeron

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  • 5 months later...

Hi, 

I just wondered if anyone has experienced reduced or muted orgasms with their PGAD? 
 

I am not sure if i suffer PSSD as well (would that not just be tragic)
 

When i have a flair (which sadly is more often now), i struggle to orgasm. Its generally less sensitive down there. 

Its so annoying because i do get that orgasm feeling down there, and a heavy pressure pressure in my lady parts, but i really struggle to orgasm, and when i do, the orgasm is really muted and almost pleasureless. I Feel like the heaviness feeling in my lady parts sort of is in the way of my orgasm if that makes sense? The pressure/orgasm wont build because of this «plug» thats in the way. It literally feels like something is in there annoying, and the pressure also caused the aroused feeling. It is just so strange. 
 

Anyone know what could cause this?

 

As well as a constant, uncomfortable aroused feeling, i also have burning pain, tingling and needle like pain

June-July -21 Zyprexa 2.5-7.5 mg 

July -21 Mianserin 20 mg four days

July-Aug -21 Valium 30 mg a day, tapred, return of symptoms 

Aug-Oct -21 Oxazepam Tapred from 10 mg x 3 to zero

Dec-Jan -21/22 On and off mirtazapine 15 mg. Kindling reaction?

March 8.-19. - Zopiclone 7.5 mg to combat insomnia 

March 20 - 5 mg valium because of akathisia and panic 

April 3. - 5 mg x 2

 

 
 

 

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  • 4 months later...
On 5/4/2022 at 1:56 AM, Sofa said:

Hi, 

I just wondered if anyone has experienced reduced or muted orgasms with their PGAD? 
 

I am not sure if i suffer PSSD as well (would that not just be tragic)
 

When i have a flair (which sadly is more often now), i struggle to orgasm. Its generally less sensitive down there. 

Its so annoying because i do get that orgasm feeling down there, and a heavy pressure pressure in my lady parts, but i really struggle to orgasm, and when i do, the orgasm is really muted and almost pleasureless. I Feel like the heaviness feeling in my lady parts sort of is in the way of my orgasm if that makes sense? The pressure/orgasm wont build because of this «plug» thats in the way. It literally feels like something is in there annoying, and the pressure also caused the aroused feeling. It is just so strange. 
 

Anyone know what could cause this?

 

As well as a constant, uncomfortable aroused feeling, i also have burning pain, tingling and needle like pain


hey, has this issue gotten any better ? I have the same symptoms. & like a constant urge to urinate.. it’s very annoying 

April 2022- Only 1 celxa pill 10mg

had an adverse reaction & never took anymore again 

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