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 Mary

 Tina

 Lela

 Christi

 Jill

 Anonymous 2

 Anonymous 1



Mary [2014]

What finds me here writing to you, is that I indeed have been suffering with this what I call "my condition". Since 2006, right after I had my hysterectomy is when it started. I went to my gynecologist, told her about it, and she assumed it was an infection, and that infections can give sensations like I feel 24 hours a day, every day, every minute, every hour. Of course, nothing worked. I then googled information, and like Johanna, I did get lots of porn stuff pop up, but I did find an article for restless leg syndrome that did refer to restless genital syndrome. It recommended a psych drug called Clonazepam. I took my research to the gynecologist, and she prescribed me with 10 days of the pill, as it is a psych drug, and she told me that she couldn't help me and I needed to talk to a psychiatrist.

I am self employed work from home as a real estate appraiser. I've lost 1/2 of my business, because it's so very hard to focus, when you feel the pulsating and sensations that have a mind of their own, never relenting, no peace, nothing. I do feel like a freak, I cry all the time. I am going to be 59 this December, so not only am I suffering with this curse, my lack of focus has caused me to exercise less, and eat more. I am now a whopping 249 pounds, just found out yesterday. I have put on 80 pounds since 2006.

I am writing because I do feel so alone, I feel like a freak. I must tell you though that I have found 2 things on my own to help me with my curse, "my condition." Please know I'm a grandma, I have been a professional real estate associate broker and am a certified appraiser. I am a law abiding citizen, have always been. I am married, my husband and I are not sexually active, he is 65 years old. He doesn't know what to do to help me, as I do not want sex, and he offered to go on viagara to help me. He doesn't get it, that it's not about sex, not at all!! It's about I need to feel relief, this is 8 long years of suffering.

Anyway, back to what I've found that helps me. About 2 years ago, a girlfriend of mine got some marijuana, a joint, and she brought it over, just to have a girlfriend night. When she pulled it out, I rejected it, as I am a squeaky clean law abiding person, a rarity with people growing up in the late 60's and early 70's. But, I was a girl scout, a virgin before I got married the first time, so Marijuana scared me. My girlfriend did not know about my curse, she just wanted to try it with me and have fun. Well long story short, after smoking it, I felt relaxed, and happy, and I didn't think about my curse at all while I was high. It didn't take much, but seriously it helped. So, after that evening, I spoke with my husband and he told me that I should do whatever I can to take away this constant pulsating, but geez, how do you get something like that when you are in your late 50's and never did it or bought it before. Well, I contacted my friend, and she made a contact for me, and ever since I have been smoking one bowl of marijuana in the early evening, and that is when I write my appraisals and research. I can't do it all day, it does make you high, and I'm not about that, but at least I can feel some temporary relief. The marijuana when it wears off makes you tired, and it helps me sleep; however, the weight gain is due to the cravings from the marijuana, thus I am so overweight now. It's just that it's 8 years and going strong, and that is how I relieve myself from the constant pulsating.

Next, sometimes I can't get marijuana, it lasts a long time because I only smoke it once in the early evening, and at times right before bed, and there is like 4 or 5 months that pass before I can get it again, and I then have to do without. Right now, I don't have any, haven't had any for over 2 weeks, and I am so uncomfortable, as I am typing this, I feel like my private parts are just going to pulsate right off my body, it hurts, I hate it, I cry, I cry, I'm crying now.....

Anyway about a week ago, I hurt my knee, and I put mineral ice on it. It's a very cool gel that penetrates into the skin. I was in so much pain, that I actually put the mineral ice down there, and man it burned like hell, but to my relief for about an hour or so, it numbed it after the burning went away. I hope you don't think I am vulgar, or a drug addict, I am just suffering so much. I actually wrote a suicide note yesterday, talking about what I go through every day. But, I am not yet that crazy to do it, because I love my husband, my son and his girl, and my grandbaby too much to hurt them, and I am also Catholic and I love Jesus. Anyway, I wanted to share this information with you on what I've had to do to get temporary relief. Maybe if you can share about the marijuana, because it really does help, it's temporary, but it stops you from jumping out of your skin, or wanting to run to a private place to masterbate when you just don't want to. It's not sexual, it's pain, it's a burden. I think they should put money into research for some type of numbing gel, or maybe medical marijuana can be somehow utilized. I couldn't take the Clonazepam, it just made me weary, and out of it. I can't have that because of my profession.

So, this is my story. I don't know why I'm writing about this to a perfect stranger, but somehow, it feels good to know I'm not alone, and I might not be the freak I feel like I am. Thank you, God bless, and take care...



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Tina [2013]

I am so glad to see there is a name for this now!

My first experience with ReGS was in 1995 when I was taking an antidepressant after my last child was born. At the time I was not aware this could be a medical condition and suffered alone in silence. I do not suffer on a regular basis but rather it tends to be related to medication for me. So I'm assuming that I am pron to the disorder and pray that it doesn't get worse later on in life. I am now 44 and had symptoms last year which was triggered following an ovarian cyst surgery where I had complications and had been hospitalized. I was on massive pain meds for an extended period of time. During my detoxing from these meds I suffered from ReGS for over a week. I truly can not tell you the empathy I feel for anyone who has to suffer 24/7 from this disorder.

I currently have been diagnosed with FMS and recently started taking Cymbalta. At 60mg I did not present with ReGS, however upon increasing my dosage to 90mg the disorder returned. I now know that external triggers affect my ReGS and am able to adjust accordingly, but during my early years I suffered without knowledge and I can honestly say that I would rather have any disorder than this one. The feeling of wanting to come out of my own skin is unbearable and the endless nights of no sleep was and is life changing...



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Lela [2012]

Since November of last year I have been dealing with persistent arousal of my genitalia. It started one night when I felt so stimulated that it woke me from my sleep. I decided to masturbate to relieve myself and found that my clitoris was extremely engorged, very rigid like I have never felt it. After I masturbated and reached orgasm I found only slight relief. Only to be woken again within a couple of hours where I again tried to relieve the stimulation by masturbating. This second time it took much longer to reach the orgasm. I experienced this again two hours later. It took even longer to reach an orgasm and there was no relief after it. It was as if I hadn't ever orgasmed because the stimulation was just as strong; my clitoris was still engorged!

I have been taking anti-depressants, Xanex, & Adderall for almost five years. I am 29 years old. When I talk to my healthcare professionals, to my primary physician and none of them have any idea what I'm talking about, thus have no answers....

Some days I feel utterly hopeless, crazy, and at my wits end. I feel like I'm confined to my bedroom some days when it's very strong. Other times the stimulation is very mild and bearable. I find it's worse when I'm sitting and lying down in any position. I have not found any answers and that leaves me feeling like I could very well be dealing with this forever.



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Christi [2012]

"After 28 brutal years, I decided THAT IS IT and started researching and found your site! I'm not sure what I'll do from here, but THANK GOD.

I always knew it was physical, but I figured I was "like a guy". I do not enjoy sex the way I should, as my only goal is to get the orgasm and my joy is in knowing it is coming soon. But, it is never enough, I need more and more. I even wore out my boyfriend, who was himself a sex addict (perfect for me, right?), and he suggested I masterbate to make it easier on him! For God sakes, man, just give me one and make it quick!

Johanna, I am not exaggerating. I always thought I just had a high sex drive, but could never explain why it usually felt like an urgent physical need, not a "sexual" one. I can hardly imagine what it would be like to NOT be this way. For now, I can only imagine. Is there a cure? Doesn't look like it so far. Thank you for sharing and caring enough to post a site. I will continue to read and gather information. I can hardly believe there is a name to my condition and I now have hope that I won't always have to be this way...."





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Jill [2011]

"I'm a 43 year old mother of 4 beautiful children; ages range between 2 - 16 yrs. My symptoms started last januari after prolapsed bladder surgery. I didn't know what the heck it was, was completely overwhelmed and embarrassed by the sensations between my legs. I'd never heard about PGAD until I looked things up on the internet. I found a website that gave me a complete insight about the condition. I was very relieved to learn that I wasn't going crazy, that I wasn't a nymfomaniac and... that I wasn't the only one suffering from it. I went to my GP. He had never heard of it, but I showed him the literature that I had printed out from the web. He was very nice to me but didn't now what to do or how to treat this medical condition.

He refered me to a Gynecologist. She is a wonderful and supportive doctor and continues to work with me. But so far no treatment has given me any relief. As up today I continue my search for new insights. I find it hard to accept that all my hopes and dreams for my future die, leaving me faced with the prospect of spending a lot of time masturbating. Each day I become more and more frantic. This may never go away!! I can't live my life like this. If orgasm only would relieve the pressure and sensations for just a few hours, I could learn to live with it. But it doesn't; relieve only lasts for a couple of minutes. Every day I pray for these sensations to go away. I want to live a normal life in a normal body. My quality of life has been hijacked by a little-known, most bizar disease. It seems like a cruel joke.

My husband has a very hard time dealing with it too. It must be hard for him to understand the frustration and depression this condition creates. I'm absolutely convinced that he is more than just a little frustrated. But he's still a happy, loving husband, a family man and devoted father. He remains supportive and understanding and.... that makes me feel guilty. He is such a nice guy!!

A 'challenging project', he calls it. Negative thoughts about my future may worsen my situation, he says, and it will become a self-fulfilling prophecy if I get stuck in my negative believes. Based on what he read (he did a lot of reading and research), he is convinced that it's possible to live with PGAD. If we both accept PGAD for a fact, a cognitive-therapy-like-approach could help overcome negative thinking. Acceptance is the first step to giving space to move forward and dealing with the situation. The next step is allowing myself to cry, to grieve and to giving my mind and body the time to get used to the misleading signals my genitals are sending. Giving it time to learn to interpret those signals differently. Giving it time to learn my brain to rewire itself. This may take some time, he says, but has been proven to be effective for other women with PGAD. Taking baby steps towards coping strategies...

Once these women were able to stop building their lives around PGAD and started working on living a normal life, instead of allowing it to rule it, they've managed to develop effective coping strategies. Not all women are capable of doing so but essentially every women is given the opportunity to take responsibility for their own situation by addressing the way they are responding to the symptoms. Easier said than done but testimonies from other women, who have been suffering quit a bit longer than I do, proves him right. I am not ready yet.... "





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Anonymous 2 [2006]

"I'm a 60 year old grandmother, so some of this story is going to be a little hard to believe it was/is for me, and I'm living it. Approximately 5-6 years ago, I started noticing some strange tingling in my genital area. It didn't seem particularly bothersome at first, so I merely blew it off. But as time went on, instead of going away, it grew more intense. What is this? Could this be....noooooo.... I'm 55 years old and nobody has this anyway. Or do they? Could it be possible be that I'm sexually aroused 24 hours a day, 7 days a week? That can't be... I'm a grandmother for Pete's sake! Even though I have a wonderful relationship with my husband of nearly 40 years, I've never had much of a sex drive. And even though this feels like arousal, I have no desire for intercourse.

Who could I ask... who could I talk to? The truth was... NO ONE! I felt such embarrassment, I couldn't even discuss it with my own husband. What would I say... how would I begin to say it? So I kept it my secret. The symptoms grew worse. There was intense throbbing like all the blood in my body had for some reason settled in my genitals. Could I stick a pin in my clitoris and let the blood flow out... would that relieve this unbearable pressure? Of course not; what could I be thinking. That's just it; I wasn't thinking... I was consumed with feeling. It's all I could think about. I couldn't concentrate on anything else, I didn't want to talk to family or friends, I didn't want to go outside the house someone may be able to tell by looking just what kind of a weirdo I really am! I fell into a deep depression, I felt so alone. I couldn't do much of anything any more, not even sleep. I felt shame. By this time, I felt disgust toward myself; surely I had done something to cause this... but what? I had no purpose in life anymore. All I could think about was me. My poor husband had taken over all the household chores... all the shopping, even the cooking. He didn't deserve this. I decided there was only one thing I could do for him. I wrote him a letter. To this day I don't know exactly why I put the letter away, but thank God I did.

I was channel surfing during one of my sleepless nights, and something caught my eye on the Discovery Health channel. It was a woman in a Doctor's office describing symptoms exactly as I would describe mine! And to my surprise, the condition had a name! Persistent Sexual Arousal Syndrome (PSAS). I felt validated again... I wasn't crazy, and after watching the program, I was able to sit down and for the first time discuss it with my husband. It was then we decided I should see my family doctor; after all, it was a medical condition with a name, right? He'd know what to do. He not only didn't know what to do, he had never heard of it. I shuddered with embarrassment and shame; I just wanted to get out of there and go home to the safety of my living room! But it WAS a medical condition with a name, so with much encouragement from my husband we decided to go to Iowa City where they have specialists. Not only that, it's a teaching hospital; they'll understand and know what to do. Boy, was I in for a surprise! When I told the Doctor what my symptoms were and how I was sure it was Persistent Sexual Arousal Syndrome (PSAS) as I had seen it on TV and had found it on the internet, he told me he had never heard of such a thing! He then told me I needed an antibiotic for a yeast infection and to stop trying to diagnose myself from TV and the internet! He gave me somewhat of a 'lecture' on women trying to take things into their own hands! Well, strike 2 but I wasn't ready to quit.

I'd go to Des Moines to an OB/GYN (we don't have any in our small town), only this time I'd go to a woman. Talking woman to woman would be easier. I couldn't have been further from the truth. She not only hadn't heard of it, she appeared uncomfortable as I talked to her. I decided to give her a break and just leave...I was getting use to this! Somehow and I don't really remember how it came about, someone mentioned the possibility that perhaps pudendal nerve damage may be the cause of PSAS. I heard of a Dr. in Minnesota who was working with patients with pudendal nerve damage, so I contacted him. He appeared to have heard of PSAS and thought that it was worth seeing me. We drove to Minnesota and after a few tests, he felt I did indeed have some nerve damage. I went to Minnesota several times for injections into the pudendal nerve but they were of no benefit, so it was decided that surgery was the only way to go. I underwent bilateral pudendal nerve decompression surgery in October of 2004. That too, was unsuccessful, although I do have to say, the doctor said it can take up to 2 years for the nerve to "settle down," so I guess I still have a bit of hope. It seemed as though there just wasn't a treatment for this condition... the hell was to be permanent. My depression continued to grow worse. My doctor tried different pills... anything to help me settle down and relax and something to sleep... I needed sleep so badly!

In May of 2005 I decided to see a Psychiatrist. I went to a Doctor in Des Moines and was a little shocked when he first walked into the room... he was just a baby! He took one look toward the calendar and said 'Mother's Day... I gotta get my mom a card! Hmmm... I thought. He's a real person and was so nice. My first question was "I don't suppose you've ever heard of PSAS have you?" I about fell off of my chair when his reply was "Yes!" We have worked well together. He reads materials I take to him... he has some ideas... a very good doctor/patient relationship. I then read from a doctor on the internet that researches PSAS that electroconvulsive therapy (ECT) had helped one woman with PSAS, and he felt it had great promise. I talked to my doctor in Des Moines about it, and although he had reservations, he did feel my deep depression warranted the ECT (after many trial medications), so maybe I'd get a double benefit. I had my fingers crossed! I have to say, that after many weeks of ECT, my depression IS much improved, but my PSAS remains virtually unchanged. I continue to this day to experience some memory loss from the ECT which is a side effect. I still see my doctor in Des Moines. He continues to work with me, and we both seek to find an answer to this curse. I have my good days and my bad days. I have promised my family I will NOT consider suicide again as a solution, but there are days I want to. Without the support group on the internet, I don't know what I'd do. We're just all hoping there's relief for us... the sooner the better."

Anonymous 2



This story was published in Volume IX July 2006 Womenís Sexual Health Journal.






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<Anonymous 1 [2005]

"I have a condition called persistent sexual arousal syndrome (PSAS), a sexual dysfunction that manifests as sexual arousal that occurs apart from any of the physical or psychological stimuli that trigger normal arousal. As its name suggests, the feeling is, for many women including myself, unrelenting. It fluctuates only in degree of intensity. Orgasm not only does not relieve the feeling, it actually exacerbates the sensation: after only a few moments or minutes of relief following orgasm, the sensation returns.

PSAS has, at various times, and depending on its intensity or my situation, interfered with my work, my marriage and my psychological wellbeing. I was in health care, in a profession where errors are unacceptable and could have dire consequences. When I was confronted with PSAS, I needed to learn how to focus on my work while all the time being distracted by a sensation over which I had no control and that wouldn't go away. I would come home from work exhausted. I felt as if I were working two jobs: one was my real job, the other was suppressing acknowledgement of this physical sensation in order to get on with my real work. Even my exercise and leisure activities hung under the cloud of PSAS. Because PSAS was made worse by orgasm, my interest in sex declined and my physical relationship with my husband suffered. To make matters worse, for a long time I could not even achieve orgasm despite the sensation of constantly feeling on the 'edge.' In depression, I began to pull away from my relationships with people, and at one point I told my husband that if I knew there were no possibility of getting better, I would consider suicide.

When the problem first occurred, in 2001, I had recently stopped taking an SSRI antidepressant. In my extensive search through the Internet at that time, I used every imaginable search term I could think of, but found nothing written that matched what I had. There was not even a name for it. In desperation, and at my husband's urging, I mustered the courage to talk with my gynecologist, being as careful as I could to describe to her exactly what I felt. She clearly had not heard of anything such as this, which I realized when she was dismissive of me, suggesting that, compared to her other patients, I was 'lucky' to have this problem. This was one of the most devastating encounters I'd ever had with a doctor, and yet she topped this at my next visit when she suggested I should see a psychiatrist because the problem was all in my head. I found another gynecologist instead.

Not long after this disappointing episode, my husband called me at work one morning, telling me he had news that I wouldn't believe. There was an article in our local paper about other women with this problem, and there was a name for it. Hallelujah! Sometimes, the luck of time and place opens up doors. In this case, the door that opened up for me led to an online support group specifically for women with PSAS. Upon discovering this support group, I went from thinking I was a freak of nature to becoming part of a small community of women who have what I have and have had similar experiences as mine. This was a revelation for me and helped me to begin to cope with PSAS. Furthermore, because I was exchanging information about my PSAS history and reading posts from other women with the problem, the language of PSAS became easier to use. I became able to talk to other family and friends about my condition, getting the support I needed to cope further with PSAS. Significantly, belonging to this online community emboldened me to speak to all my doctors, not just my gynecologist. Orgasm and clitoris were no longer four-letter words. If ever again I feel rebuffed or belittled by a physician, I know I can depend on the PSAS board members to be empathetic. Every member of the board has had at least one unfortunate experience with a physician. Most had a similar experience in that their doctor couldn't be bothered to deal with or even acknowledge a problem he or she had never heard of. I, myself, felt that one or two doctors were embarrassed by my description of my symptoms of PSAS (I only wish they knew how I felt, having to describe it). When I gave one doctor the newspaper article to read, he focused on the sensational bits and didn't read the article all the way through, drawing conclusions about me that were unfounded. At the least, PSAS has certainly confounded all of the doctors I've told. Only one doctor, my 'replacement' gynecologist, questioned her colleagues and learned that one of them had had a patient with a condition that could be described as PSAS. My personal care physician latched onto information published in a journal article about PSAS in order to verify that PSAS was a bona fide medical condition.

Since my PSAS seems to have arisen in conjunction with stopping a neuropsychiatric drug, the underlying problem for me, I thought, might be neurological, not physical or hormonal. In other words, the cause of PSAS could very well be in my head, as the first gynecologist suggested, but not the psychiatric problem she implied. I had learned that the onset of PSAS in a significant number of other women on the board was also coincidental with stopping an SSRI (a class of antidepressants). This further knowledge made me feel justified in thinking that there was a strong connection in my case. Because of this likelihood, I was not compelled to try some of the therapies that other women on the board had tried. I felt that the best approach for me was to work with a neurologist. I was further convinced of this upon talking with my friend's husband, a psychiatrist who is extremely knowledgeable about neuropsychiatric drugs and who was able to give me several treatment suggestions. Without the PSAS board and the input of an expert, I may not have come to this conclusion. My biggest frustration with the group is seeing how easy it is for some women, in their desperation, to be swayed by one person who thinks she has found the answer to PSAS. Nearly everyone will jump on the bandwagon if someone thinks she has the answer, and other voices get drowned out. For most of us, the underlying cause of PSAS is unknown. Despite this, there have been women who rushed right into undergoing a treatment as extreme as surgery or other invasive therapy, only to be disappointed because the treatment failed. This was compounded by some physicians who specialize in a particular procedure and who will make the same diagnosis of everyone who comes to see them, a diagnosis that they swear their treatment or procedure will help. This also sets the stage for treatment failure, because, clearly, not everyone with PSAS has the same cause.

Much has been written in TWSHF about getting second opinions, especially for surgery or other invasive procedures. As on all online support groups, there are times when arguments start and the fur begins to fly, or when members use the board to send personal communications back and forth and the posts become very chatty. On the other hand, much of the information I've gotten from the board has been invaluable and has helped me make a case for myself with my doctors. I've read about all the many therapies that have been offered to women with PSAS and have seen what has or hasn't worked. The links are posted on this site, including members' experiences, doctors' names, and suggested treatments for the various physiological or neurological problems thought to be at the root of PSAS. We have been fortunate to have had physicians log onto the group and give us further ideas and insights into the possible causes and treatments of PSAS. Finally, and perhaps most importantly, there is the real support one feels in a community of people with the same interest."

Anonymous 1


This story was published in Volume VI October 2005 Womenís Sexual Health Journal.







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