Saturday, February 4, 2012

from bad to worse

things started to go bad last year, bad enough that i began to ask for prayer among those closest to me. it was a slow decline, as the Paxil i had been on for...maybe 12 years approximately...began to lose it's effectiveness with my PGAD, which stands for Persistent Genital Arousal Disorder, and used to be called PSAS (Persistent Sexual Arousal Syndrome) but the word sexual threw people off, doctors included, giving it the impression that this syndrome had all the ingredients that make up sexual desire: emotional lust, longing, the yearning to have sex, and the response of genital arousal. but this disorder is absent of all those things except the genital arousal part, and trust me, it's hell.

the women i know who have this disorder live lives of torment. the majority of women i know who have PGAD feel as though they are on the verge of orgasm, ALL the time. can you imagine how difficult it is to spend time with your family, do housework, go to lunch with a friend, talk on the phone with a relative, go to church or go food shopping when your clitoris is escalating with sexual arousal --often to the point where it hurts. all you can think about is relief --like when you have an extremely, painfully full bladder and all you can think about is finding a place to urinate and relieve yourself --but imagine that after you urinate, that in 30 seconds, 5 minutes, or maybe (if you're lucky, a few hours) and suddenly that feeling is back. that is as close to an analogy i can give to people who do not have this disorder, just exchange the full bladder feeling with extreme sexual arousal, and there you have PGAD.

i know in my interviews on television and in magazines i said my pgad began when i was in my 3rd week of pregnancy, but after reviewing the years of my life, i remember having "bouts" of PGAD that began when i was around 18. i would wake with the PGAD, feel the urge to masturbate, and then it would come back the next day, but these bouts only lasted about 3 days. this happened a handful of times, and i even went to a gynecologist in the summer of 1994 because i had just had a bout of PGAD and was about to go on a 2 week trip to England (a missions trip of all things) and i was worried it would act up while i was there. the gynecologist seemed perplexed, examined me, found nothing and said maybe it had to do with my urethra and gave me an RX for an analgesic. i was fine on my trip, but such analgesics never worked again, once my PGAD came on full force in 1995.

speaking of urethra's, i want to pause here, and go back to my early elementary school years when i suffered for a long time with a sense of urgency even when my bladder was empty. i even remember touching my clitoris to locate exactly where the sensation was, and that was the place. my mother took me to my doctor many times, who never found a urinary infection, and in the end he decided to do a procedure to stretch open my urethra. i'm not sure it worked, b/c all throughout my life i have had the need to urinate much more often than my friends, to the point where my friends commented on it, often.

so then in 1995, in my 3rd week of pregnancy i wake up with PGAD, and have had it ever since. i know a woman who has had PGAD her entire life, and i mention this because i believe that some women, such as myself, were pre-wired --no, that's not the word i'm looking for-- but something in our physical make-up was going to go awry at some point, whether at birth or later in our lives, and we were going to become PGAD sufferers.

there is A LOT on the web if you want to research PGAD (which was not recognized as an official disorder until 2001) and the different ways it manifests in women, and there are dozens of theories as to why. this is a good site for info, plus you can see the 1st 20/20 interview i was in (i've been on it twice) in 2006:

in any case, as to where i am now w/ my PGAD, is a bad place. you see, after years of torture --with practically non-stop PGAD, where i had to "take care" of it, as in masturbate (a deed i loathed and continue to despise to this day because it is being forced upon me) in the morning, afternoon and at night, each time taking about 2 hours to have 3 consecutive orgasms and with only an hour or two of relief in-between. i saw a slew of doctors, was hospitalized twice (which is hell if you want to know) and finally by the 5th year i had an anxiety attack b/c we were supposed to go on a long road trip which was torture for my PGAD, so i was put on Paxil. Paxil enabled me to live an almost normal life. i still had the PGAD, but instead of having it every day, it would come on about day 5 of a 7 day week, but it grew slowly, and by day 7 it was bad enough where i had to "take care" of it by having about 7 to 10 consecutive orgasms, which took about 2 hours, right before i went to bed. then i would wake up the next day PGAD free, and stay that way for about 5 days, so i could go to church, home school my son, travel again (even on long car rides), have a sex life with my husband without fear, and i was happy.

then, about 3 years ago, something changed: where i used to be able to have 7 to 10 orgasms to achieve relief, it was taking about 15 to 20, then it progressed to 20 to 30, and then, a few times, i would wake up to find the PGAD had returned, so i'd give it about another 5 or so orgasms and feel relieved.

well, things have only grown worse, and in the beginning of 2011, my doctor tried adjusting my Paxil, to no avail. then in August of 2011, tried a variety of anti-depressants and other meds. we tried Celexa, Amitriptyline, meds for overactive bladder, like Vesicare, then Requip --which made me violently sick, as in vomitting and dizziness, but nothing was helping.

now my PGAD is at the point where it requires at least 2 hours of masturbating, only to wake and demand another 2 or more hours, and knowing when i have achieved relief is now difficult to tell. it used to just have a "cut off" point, and i would feel relief and my clitoris had no arousal senastion. but now it doesn't stop tingling and remains very sensitive. about 10 times in the past 6 months, after giving it 2 hours at night, and 2 to 4 hours the next (i imagine the number of orgasms is anywhere from 40 to 60) the feel the PGAD return about 8 hours later, not strong, but enough there for me to be aware of it, like when you realize your bladder is beginning to fill up...but i do nothing about it (except have an anxiety attack), and make myself wait at least 7 days before i masturbate again, because i fear the hell of returning to doing it 3 times a day, every day.

just a few days ago, i reached my 7th day, and i had to give it a total of 6 hours (2 at night and 4 the next day) and i cried and begged God to bring it to an end. finally i just said, that's it, i'm not doing anymore, and i took a xanax, tramadol, and a soma and stayed sedated the rest of the day. that was thursday. friday morning i woke up to feel just enough of the PGAD stirring in my clitoris that i broke out in a sweat of anxiety and ran to the bathroom with diarrhea.

since September i have become quite the recluse. i was put on Valium for a month for my anxiety --and to my delight it also really helped numb the PGAD to the point where i was able to go 12 days w/out masturbating. but unfortunately, i quickly built up a resistance to the Valium in about 30 days, and my hope was lost, again. now i am on Celexa, tramadol and xanax, and for months i flounder between hope for a future, to shaking and crying, believing my life is coming to an end.

if you could see me, i look like shit. i have put on tons of weight, the drugs i am on make me look constantly tired, and the anxiety and depression has aged me.

i am seeing a pain physician on the 8th, and i pray to God that this dr will be able to help me, but as much as i hope, i also fear. it's presently a torturous way of living, and that's why i am writing about it now. expressing and explaining it is good therapy, for one, and i also want to keep a record of this PGAD journey i am on...for myself, and others who may need to relate, or to understand someday.