My PGAD Nightmare

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.

An accident

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.

PTSD

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.

Sertraline

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.

Insight psychiatry-style

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.

Smartphone to the rescue

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.

Urology

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.

Facebook support

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.