Editorial Point: This post is both an extraordinary account of PGAD (Persistent Genital Arousal Disorder) but also an extraordinary account of what many people have to put up with from psychiatry. For some of the history of PGAD see our Citizen’s Petition to FDA. See also the video clip on PGAD.
At the beginning of 2017, I started a kafkaian journey that gave me a mental health record and two incurable conditions, Persistent Genital Arousal Disorder and tinnitus.
Until December 2016, I was a happy middle-aged woman. I had my son late in life at 40 years old. Healthwise, I suffered ulcerative colitis in my mid-thirties but was in remission.
Psychologically, I always considered myself a strong woman. My sister died from suicide 19 years previously. She had been diagnosed schizophrenic and overdosed. I didn’t know that this tragedy would come back to haunt me.
One day, while cleaning our house my husband and I stupidly mixed 2 products that contained acid The Emergencies and the National Poison Information Center were called and we were told that we had inhaled chlorine and to leave our house for a few days and aerate it. The day after we went to our GP with our eyes, skin and throat burning and swelling. He examined us and told us no damage to the lungs had been done.
However, I got worse. One night I felt the air sacks of my lungs contracting and burning. I woke with a shortness of breath as if the air couldn’t enter my lungs, I went to my GP who prescribed me one xanax 0.25 mg to take at night. I was surprised, I knew xanax was a tranquilizer and I didn’t feel anxious but xanax worked, my muscles relaxed and the air could now enter my lungs.
then I started getting laryngospasms. I was choking. I went to hospital where all the necessary tests were done and the diagnosis was reassuring so I decided to stop xanax after a month of use but as soon as I stopped taking the pill, my shortness of breath came back.
Getting worried I went to my GP to ask him if he could help me stop Xanax. Could it be that xanax made my symptoms worse or could it be hiding my symptoms? I didn’t get an answer. I got a referral to the psychiatric emergency department. The psychiatrist told me I was having a paradoxical reaction to xanax and put me on a long acting benzodiazepine one pill at night and I got worse. Now my chest and my body were burning and I started having violent crying spells and nightmares.
I consulted a private psychiatrist hoping he could help me stop Lysanxia but he diagnosed me with Post Traumatic Stress Disorder. For him my domestic accident had woken up the trauma of my sister’s death. He made me cold turkey lysanxia and put me on bromazepam 6 mg. At this stage, my breathing wasn’t improving and I had very bad stomach pain so I was put back on xanax.
In 4 months, I had cold turkeyed 4 benzodiazepines but my breathlessness was still the same. I went to my generalist for help. He told me I was delusional, mentioned my sister’s mental illness and told me I was a danger to my son because I was stressing my family with my chlorine story. He threatened to commit me to a psychiatric hospital and to call the social services. Terrified, my family convinced me to book myself to a psychiatric clinic in the countryside.
The psychiatrist there told me my xanax pill was a placebo and I needed to go on antipsychotic. When I refused because I didn’t feel anxious or delusional they sent me against my wish to the regional psychiatric hospital and on Easter Monday 2017, I was officially diagnosed with PTSD. I was made to cold turkey my xanax 0.25 pill and was put on Sertraline 50 mg and zopiclone at night. At this stage I just wanted to get out from this psychiatric hell so I stopped complaining about my breathing difficulties, agreed with everything the nurses and doctors were saying and swallowed my Sertraline 50 mg pills.
The first day after cold-turkeying xanax, my breathing improved but the second day I felt ill, the third night after taking Sertraline I felt as if all my muscles in my body were contracting and I also got a very sharp pain in my lower back, my skin became dry, the third night I felt my private parts becoming very dry and painful and my stools were white and bloody, I was very agitated and depressed but I was told it was only anxiety caused by my accident. They increased my dose of Sertraline to 75 mg which made me totally numb, I succeeded to convince the nurses to bring it back to 50 mg. I was allowed to get out of this prison after 2 weeks.
I had only been on sertraline 50 mg for 2 weeks when I started having tremors, agitation and flu like symptoms and for the first time in my life, deep depression.
I went to see a new GP who said my blood pressure was very low and told me to drop my 50 mg dose to 25 mg because I was having an adverse reaction to Sertraline and to start tapering it, one day on it, one day off. I brought down my dose to 25 mg and for a week I felt better, my breathing really got better and the symptoms I had the week before stopped.
Then a week later (my fourth week on Sertraline), while I was still on 25 mg, all hell broke loose, every day a new symptom was appearing to be replaced in quick succession by another one. It started with burning skin, sensitivity to light, smelling bad smells, hyperacusis, restlessness, high-pitched tinnitus.
Then when I thought it couldn’t get worse, a weird arousal feeling in my private parts when I was sitting, constant vaginal lubrication, throbbing, pressure on the clitoris, a feeling that there was urine trapped in my urethra and genital congestion. I also started experiencing spontaneous orgasms in my car. I was totally panicked. I didn’t dare to sit near my son and my loved ones. What did this medication do to me, did it turn me into a pervert?
A few days later I started to have a hyperactive bladder – I had to go to the bathroom every 10 minutes. And I had a very dull pain in my lower abdomen. It really looked like a bacterial cystitis. My GP treated me with antibiotics for cystitis. When the doctor found out my urine was clear but that I had a lot of leukocytes in my bladder, she told me it could be interstitial cystitis and referred me to a urologist.
In the meantime, I went to my gynecologist who checked my hormones and told me my genital arousal could be caused by the antidepressant and to stop it. I had started to see a new psychiatrist who sent me to a different psychiatric clinic this time for an atypical PTSD. When I mentioned the genital arousal, he asked me if the sensation was permanent and hearing my affirmative answer, he told me he had a tranquilizer for me that will stop the sensation and that I was going to be switched to another antidepressant.
I was put on the antipsychotic risperdone at low dose (1mg) and made to stop Sertraline one day on it one day off for a week and one day on it 2 days off the second week. The risperdone stopped the bladder’s hyperactivity and the arousal but I became totally zombified. I begged the doctors to stop it and they reluctantly agreed and put me on anafranil 10 mg and back on xanax 0.25 mg 3 times a day. The anafranil stopped the hyperactive bladder and seemed to quiet down the arousal but it made my tinnitus worse and gave me very bad orthostatic drop.
Before going to this psychiatric clinic, I had been sent by my pneumologist to get a lung scan and he realised I had a pulmonary nodule. My gastroentorologist had also the results of my gastrointestinal endoscopy and I had a gastritis. They couldn’t tell me if these inflammations had caused my breathing difficulties but it was very strange and I remember the general doctor from this institution telling me “When you are looking for something, of course you find it” Even with my gastritis and lung nodule, I was still mentally ill.
I don’t know if the psychiatrists who were treating my so-called PTSD knew about PGAD. My impression was that I was treated for a reactive psychosis. I remembered hypochondria being mentioned. One psychiatrist mentioned that I had a reactive psychosis caused by the PTSD and that PTSD and symptoms of psychosis often occur together. One mentioned that my traumatic life events and a genetic predisposition could have explained this “decompensation”. The psychiatrist who was looking after me didn’t reply to my questions but he didn’t put me back on SSRIs or SNRIs where before I mentioned PGAD, he wanted to put me on a new antidepressant called Trintellix. I will never know if he thought that I had a psychotic break caused by the accident or if he thought that the SSRi had triggered a psychotic break. However, he used Risperidone and Anafranil and these medications have been used in the past for treating PGAD when the disorder wasn’t well known and might have been perceived as a mental disorder.
One day when I was still stuck in this clinic, I took my smartphone and I googled my symptoms and a result appeared, something called PGAD. My symptoms matched the ones described on the articles about this disorder. Some people were describing the same experiences as mine on antidepressant withdrawal forums and Sertraline and other SSRIS were mentioned. One girl was my mirror image. She got PGAD after being only on zoloft for a few days. For days, I read their stories clinging to my phone as if it was my raft in this sea of madness and any articles I could find.
An article in French from Le Monde one of the most serious French newspapers called “When a medication aroused you permanently” was particularly interesting. It was more about antiepileptics triggering PGAD but antidepressants were mentioned.
An article from the French Urology Association (www.urofrance.org) caught my eye and there it was, the monster that was stealing my life, PGAD, persistent genital arousal disorder. I was relieved, I wasn’t a freak or a monster or a pervert, these awful feelings had a name and urologists knew it. It was official, it had been published in an official paper and by a urology professor.
I printed the 2 articles and gave one to the chief nurse and one to the psychiatrist. The chief nurse was horrified. It was clear she had never heard of the disorder, the psychiatrist agreed that I might have PGAD but the researches mentioned on the article concluded that it could have psychiatric causes. I was back to square one. PGAD could be psychiatric even if the article mentioned that the disorder could appear after starting and stopping an SSRI. The nurse and the doctor continued to try to make me take a tricyclic and an antipsychotic. I had PTSD and I had to be treated for it. Full stop.
I had lost 10 kilos since January, my PGAD was raging even though I had stopped Sertraline and my tinnitus was spiking. I could barely stand on my legs and didn’t know to whom to turn anymore. Then at last I saw a urologist he confirmed to me that PGAD existed but he didn’t know how to cure it. At last a doctor believed me. This doctor hasn’t let me down and with his team they have been my biggest support since this nightmare started, organising all the necessary MRIs, blood tests, cystoscopies and urodynamic testings etc that you need to get when you have PGAD to rule out other pathologies. My gynecologist told me I had a neuropathy similar to Restless Legs Syndrome and she suggested we tried Hormonal Replacement Therapy but she couldn’t guarantee that I will get better. I decided to wait and see, hopping that my PGAD and tinnitus will quiet down but they haven’t.
When I got out of the clinic, I found the PGAD Facebook Support group through Jeannie Allen one of the first woman in the world who had the courage to come public and speak about PGAD. This group of amazing women have been my online friends who have guided me and supported me in my difficult journey.
I also found help on the Pudendal Hope forum and I was surprised to read that a lot of men and women have PGAD as a symptom of Pudendal Neuralgia and I realised that no doctors in my town had ever told me that PGAD could be a symptom of Pudendal neuralgia even though some of the best Pudendal Nerve Specialists in the World work in a big town near where I live.
I travelled see a famous sexologist, whose name was given to me by Facebook PGAD friends. Even if most of them are North Americans they seem to know all the doctors who could helped me in my country while my own doctors never directed me towards one of these specialists. The sexologist confirmed to me that PGAD existed and that he had some patients who got PGAD when coming off an SSRI.
The Pudendal nerve specialists didn’t look at me as if I was a crazy hypochondriacal woman when I described my symptom. They gave me CT-guided nerve blocks in the sacrospinous ligament. These blocks are used to diagnose pudendal neuralgia, mine were inconclusive because I didn’t get instant relief from my PGAD. For them PGAD is linked to my autonomic nervous system being disturbed but they don’t comment on my claim that my PGAD was caused by Sertraline.
I still have PGAD and tinnitus, my journey for answers and for a cure continues. There is not a day where I fail to think about my terrible 2017 journey when I encountered Sertraline. There isn’t a day when I don’t suffer from this embarrassing condition and from constant tinnitus. I still don’t understand what happened. From the beginning, I went to doctors asking them to help me stop xanax then to help me stop Sertraline and because I went to them to ask for help, now I am suffering all days and nights from two cruel conditions. Without all the support I have met online, I don’t think I would have been able to fight as much as I did to give a name to this horrible disorder.
Very sorry to hear what happened to you. Once again psychiatry has wrecked another life. On and on it goes. It may be that the xanax caused your breathing difficulties. When I was on Lorazepam I began to have choking sensations and couldn’t breathe. I ended up on an inhaler and pseudoephedrine and my right lung collapsed twice as well as getting constant chest infections. Of course none of this was picked up on and it only stopped when I switched to diazepam to taper. I also had a constant flu like illness, tingling, shaking and broke out in acne type spots in my mid thirties.
The symptoms you describe appear to be benzo withdrawal exacerbated by the sertraline.
Eleven years later I still have raginf tinnitus, partial deafness, low blood pressure, blackouts, burning, tingling, numbness and a raft of other symptoms.
I utterly despise psychiatry it is a disgrace, a pox on mankind. I really feel the time has passed where we should take the fight direct to them with direct action because it’s obvious that trying to engage is not having results.
Psychiatry isn’t itself bad. It’s the Dr that makes it breaks it. Unfortunately there are more drug pushers then health concious drs who are in it to improve patient care! It’s sickening. Meds save lives if the drs are using them intelligently. Never be a guinea pig for a Dr.
Thank you for your testimolial, you are really a strong and courageous woman, I am sorry for your grave misfortune and I hope for a solution for all of us. I would like that the awareness about the horrible damages that psychotropic drugs CAN cause, to be banged on the face of every psychiatrist on Earth. How much unconsciousness, but also how much ruthless silence by the medical side.
I feel very bad for the woman in this story.
If PGAD is anywhere near as bad as PSSD, which I can imagine it is, I feel very sorry for her indeed.
In November of this year it will be 11 years I will have suffered PSSD.
That will be 4,015 days or 132 months I will have been deprived of any sexual desires, or sensation in my genitals. Also my orgasms are almost completely pleasureless and my emotions are numb.
All because of a psychiatrist prescribing me citalopram at 22 which I only took for about 3 weeks.
The citalopram also did absolutely nothing to help the OCD it was meant to treat. Ironically the OCD seems to have lessen over time, after I got away from some horrible family members who having contact with, seemed to trigger it off in the first place.
I feel like I have been through a protracted war with all the denials and lies I have had from AWP and the whole medical system, since I tried bringing PSSD to their attention.
There is no end in sight to the suffering.
It just goes on and on and on and on and on and on and on and on and on and on and on!
And no one will believe me. Almost 11 years I have tried to get doctors to believe me that PSSD exists, but to no avail.
No one wants to know.
Another terrible story of PGAD & bravely shared for others.
Spruce, I’ve been trying to learn what it must be like to suffer PSSD (my libido did return somewhat after almost 20yrs of numbing- before I had to back on SSRIS after my last effort) and your comments under relevant posts are so helpful because you are so candid.
Perhaps all of us suffering need to be raising awareness of PSSD. It’s mere armchair advocacy I’m afraid (as many are stuck in armchairs) but are you on Twitter?
7,300 day I’ve been dealing with PGAD
I’m at my whits end.
It’s completely ruining my life
I just need some support please.
How about the truth.
Let’s call a spade a spade.
If you where to ask a psychiatrist these questions I think I know the answer.
1/ Do you think amphetamines are dangerous drugs. So why do you prescribe them to children and increasingly adults.
2/ same for cocaine. methylphenidate is virtually identical.
3/ barbiturates, alcohol, meprobamate, chloral hydrate, etc the sedative hypnotics. So why do you still prescibe benzos from the same class.
4/ Antidepressants. These are psychic stimulants, indeed some are classic drugs of addiction. venlafaxine is closely related to MDMA [ecstasy]. Here is a little tale.
When I was polypharmacied up I was arrested 4 times. I’d started smoking again after 8 years, drinking heavily and taking street drugs, amphetamines primarily to give me focus and energy. I was sent to prison and on my release a probation hostel. Whilst there I had to give urine samples and twice it came back positive for PCP. Ridiculous as PCP is unheard of in the UK and I wouldn’t have touched it. Also my behaviour which was logged was not consistent with being intoxicated with PCP. I was recalled to prison and spent a further 3 months inside.
I later found out Venlafaxine gives false positive readings for PCP. The injustice of what I have suffered due to psychiatry and their DRUGS not medication is a disgrace. I won’t let them get away with it, I won’t stop until I have my name cleared.
Hi Damian – I made a Freedom of Information request 7months ago asking what drugs are used in prisons (and elsewhere) without consent – or even with consent and been given a total run around. Can I ask if you if people were told which drugs were used in the prison? Was there any choice ? Could they be refused? Any medical checkups on the drugs prescribed during or after.discharge? Are people able to access their records? I was told each institution is able to make their own decisions about which prescription drugs they use – would this be true? Also that the medics who work in prisons are not employed by the NHS – is that true? Never give up was a young friend’s motto when threatened with deportation – it’s a good one. All the best with your struggle. susanne
I’m not sure to be honest I was prescribed what I was already on but changes were made during my time inside. When I was discharged I had been prescribed lorazepam inside a month before my release. My Gp had always been anti benzo and wasn’t happy at all and didn’t want to prescribe it but was overruled by the community mental health team. I wasn’t told it was lorazepam indeed it was just added to my meds when I complained of being anxious. Very unusual because when you go inside they take you off benzos whether you like it or not with their taper protocols. It was a private prison that put me on lorazepam and from what I could see they were trying to dope as many people as possible to keep them docile as staff numbers were low. The NHS now provides the healthcare in prisons although firms such as Virgin have the contracts in some.
Damian quite right you should clear your name. Here is a paper to help but I am sure you may have this along with other proof.
Good luck getting a psychiatrist to call a spade a spade when it comes to the dangers of psychiatric drugs.
Even when you present the evidence right in front of their eyes, getting them to admit to the truth is like trying to draw a speck of blood from a very withered stone.
I spent many years and a lot of my time and energy trying to point out to Avon Wiltshire Partnership some of the harms these drugs have caused me, backing up what I said with peer reviewed studies, and other credible supporting evidence.
The stronger my supporting evidence was, that I was right that these drugs had caused me harm, the more defensive and nasty the mental health teams response got.
Psychiatry seems hell bent on defending psychiatric drugs and practices that cause harm, all the way to the bitter end.
All of this comes at the expense of the people who psychiatry is supposed to help.
Sometimes this includes death.
Hi Spruce and Everyone
I feel for you all and finally after reading these blogs for nearly a year decided to join in. Why are the people who are suffering the effects of these toxic drugs not listened to?
Having to deal with AWP in UK on behalf of a family member is once again a living hell as most mental health professionals have blind faith in their medications. I made the mistake of trying to tell a psychiatrist that I believed the symptoms were caused by meds, well nearly a year later family member still locked away and still suffering. Drug holidays are not allowed.
Good luck to all of you.
Very sorry to hear about your ongoing nightmare. I relate to the pudendal nerve involvement as well as the intersistial cystitis. I have pudendal neuralgia though like you the CT-guided blocks did not produce a straightforward response. I don’t have the PGAD component. I wonder if it’s pudendal and another nerve(s) in the pelvis. Got these injuries and others attempting to come off an ssri.
Just read through the info leaflet on potential harmful effects of using ibuprofen – commonly used painkiller – huge number of them listed including warning about taking them with SSRI’s
I have been searching for answers to what happened to me for over a year now. And I was gobsmacked to read that I have been going through the exact same thing as you since 2018. I was on Xanor 0,5 mg as well as tripilene 25mg. When all of a sudden out the blue I thought I has become possesed by the devil. It started in the middle of the night with constant throbbing in my vagina. Arousal. Wetness. My whole body would start trembling from this. The tinnitus in my ears started at the exact same time. I would hear scratching on my pillow.. It happens all the time day and night. In the beginning it was quit pleasurable but now it’s just unbearable. So I have been searching on the internet for information on this PGAS and it made some sense but no one hit the nail on the head quite like you did. Thank you for this article because I have been to embarrassed to go to a doctor at least I know I’m not alone in this.
Hi I been suffering pgad with vibration in my ears all day everyday the with feeling Aroused all day every day I take lidocaine cream I’m on antidepressant I do intense pelvic Therapy and I use a tens unit at home some days I just wanna punch a wall there really are no good days at all I just cry all the time I see some doctors I think do you think I’m crazy but I know what’s going on with my body and I just need someone to talk to sometimes I feel like I’m possessed by the devil I know I’m not everything is stress related I loss four sisters and a mother Back to back that’s when it all started so if you could take the time and text me back I will be thankful
I also have PGAD no the doctors in my area even wanna talk about it people claim it’s some phenomenon it’s your medications it’s your hormones it’s this it’s that how do you explain it only occurs when I’m in a relationship I feel it has something to do with men but of course I’ll be sent to psychiatric care myself and told that I am delusional don’t rule out the possibility that it could be a man doing it.
I’ve been suffering all the exact same symptoms of what I now realise is probably pgad as it explains the frustrating sensation pretty much to a T.
I was also put on a few different antidepressants in my early teen years I took zoloft then serialine but that gave me the shakes too and wasnt on it long. But I didn’t notice these symptoms back then, it was only after I had gotten into other drugs, mainly amphetamines and pot that I noticed these uncomfortable sensations. after ignoring it for about a year or more I felt it had worsened and started interfering with day to day life. It seems to only happen when I have panic attacks, got high or as soon as I step outside my front door to go places -even without being in a panic it would just start out of nowhere. I thought it was just a symptom of anxiety or from the drugs whenever I’d take them but over time its grown worse and happens more often I notice since getting sober. Its now at the point I barely leave the house because of it, I can’t get mental help for myself or even go food shopping because it’s so unpredictable. But besides all the details I’m just really relieved I came across this page it really helps to know I’m not the only person going through this , definitely feel more confident to ask my gp for help after seeing this too just hope he’s able to help