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The story of Johanna part 1    [2003 -2006]

November 2003:

I am 52 years old and a "happily" divorced woman. Because I have the amazing talent to make the same mistake over and over again and again, I have reconciled myself with the thought that a new relationship is not for me anymore. Up until then, I couldn't be bothered with sex. Within the complicated relationships I had, I regarded the conjugal togetherness, as an obligation. Not that I was completely asexual; I used to masturbate every once in a while. But even that was not exactly one of my hobbies anymore, since menopause hit me in 2002. At that moment in time I had been experiencing a twelve year dry spell as far as men were concerned. The instances that I did masturbate, could be counted on the fingers of one hand.


Completely in contrast with my sexual situation up until then, I was suddenly and to my own surprise, confronted with a gradual increase in libido. At least I believed it was my libido. Because this increase was not experienced on a daily recurring basis, I initially embraced this little "gift". Unaware of what was to come.

Within a three-month time frame, I transformed from a sexually inactive woman into someone, who seemed unable to think of anything else but sex. My lower body was in a constant state of arousal and before long my lower body was in a constant state of orgasm.
I felt like I was about to come at anytime; NEEDED to come. Without any reason and at the strangest moments, spontaneous orgasmic waves plagued my lower body, which kept screaming for a total relief. Even after having an orgasm this demand for relief remained.
I had to change my underwear several times a day because I was constantly wet and I had absolutely no idea what was going on.

My life took a dramatic turn. I still associated that feeling with an unexplainable increase in my libido. I masturbated very regularly and I even signed up on a dating site. There I engaged in a relationship with a married man; a so-called open relationship. I ended up in having an affair with him; based solely on sex. My days were almost entirely filled with fulfilling my bizarre needs. I had no other choice, I had to! If not with him, then by myself!


I couldn't care less about that little "gift" anymore!!!! I became ashamed about my feelings and felt an enormous guilt; this wasn't me, neither did I want to be like this! But I had no voice in it; I seemed to have lost control over that part of my body! It lead a life of its own and made mine a living hell... The impact these unwanted and bizarre needs had on my life was considerable. I felt like a freak and thought I was the only woman in the whole world with this weird disorder. I was longing for the time before my strange desire, when I knew who I was. I tried to talk about it to my friends but this only met with a lack of understanding. This was to be expected as I myself didn't fully understand it. They didn't approve of my relationship with the married man and how could I blame them? My already damaged self esteem unavoidably caused me isolating myself. Me alone... alone with those intrusive and unwanted needs!

My search for answers...

In period that followed I contemplated submitting my problem to my doctor. But the threshold is too high. I am deeply ashamed and don't know how to put it to him. I decide to google first. Not knowing what I am looking for, I started typing words like "libido", "orgasms" and "sex". I fervently hope to meet someone with the same problem or an illness which would explain my condition, but that doesn't happen. To the contrary; I end up at the most filthy porn sites or read that women experiencing menopause, go through the opposite. I am disgusted with anything that has to do with sex, but most of all I am disgusted with myself. Even so the sex and masturbation sessions continue, I simply cannot help it. I feel lonely and desperate...

Eventually I decide to visit my doctor. In his ignorance, he confirmed what I myself feared: 'It was nature taking its course and nature was encouraged by my sex partner who had picked me of the dating site. So I was that oversexed and filthy person I hated so much already! My sex partner also sees me as a horny creature and my desperate attempts to involve him in my problems, result only in the confirmation that I am just that.

The desperation, the loathing, but the lack of understanding in particular, enrage me. In this rage I seriously ask myself whether I really am oversexed. For it is not me who wants this, but it is my body asking for it. I decide to closely monitor myself. I start charting when I have most of my moments, what my thoughts are, what I do or don't, when it starts, and what could have triggered it in the first place. I also decide to see my doctor again to convince him that my urge has nothing to do with my so-called increased libido because I had fallen in love. There is something else wrong with me, physically, I can feel it!

With my monitoring results in hand, I enter his office again. I tell him that when I wake up I have no symptoms. That it starts after about half an hour, to stay there for the rest of the day. That sitting makes it worse and I can't bike anymore. That I can't lay on my left side anymore but most of all, that I don't want sex and that this living on the verge of an orgasm is driving me crazy. But also this second visit to my doctor leaves me empty handed.

Relapse and desperation...

My anger is replaced by apathy and months of isolation follow. My body is relentlessly asking for relief but it becomes harder and harder to achieve orgasm. It seems I have to put more pressure, and more than often I am not able to achieve orgasm at all! It feels as if there is some sort of second clitoris deep inside of me which isn't able to release itself. As if I was sitting on a ball containing a large amount of oversensitive nerve endings that kept bullying me day in- day out. The entire left side of my genitals is hyper sensitive and seems to be under a constant orgasmic flow. Without even touching my genitals or thinking of sex, my lower body spontaneously initiate orgasm like waves, only to retract right before the actual climax sets in. A real torture which involuntarily would befall me on an almost daily basis. Impossible not to give in to masturbation at those moments.

Inhuman and savage like scenes are taking place within the four walls of my house. Crying from misery I literally climb these walls. I have to get rid of this feeling! But the trajectory to an orgasm which was getting increasingly problematic ruins my life even more than it already had been ruined. Besides, an orgasm doesn't help as I would be caught up in the same feeling in no time. I don't know what to do nor where to turn to and I am totally disgusted with myself.

The quality of orgasm, as far as I still can achieve it, has also changed. Sometimes it is weak or only "halfway", but usually it is very explosive. It feels as if my uterus, my bladder and intestines are being ejected with enormous force. A tremendous physical discharge offering no pretty sight and no consolation. There is nothing I want more than concentrate on other things but the urge is so overwhelming that I cannot ignore it in any way. I don't want to live like this.... If I had a choice I would have let my genitals be amputated...

By now my social life is in ruins. Also the work I do from home, is suffering. Until then I had been able to keep up the appearance, but now I could barely do my work sitting behind the computer and that of course had its consequences. Sitting also becomes more and more painfull. My tailbone, my lower back my groin and upper legs. I also experience trouble sleeping, causing me to barely function during the day. My house is a mess and everything is too much..., way too much! When almost reached the point of collapsing in desperation, I decide to visit my doctor for the third time.

It's not in my mind; It's between my legs...

It's now been a year since my symptoms started. Now there's a substitute doctor and she sends me to a gynecologist, thank God! Although he had never heard of these symptoms the gynecologist takes me very seriously. I finally feel being heard and many tests follow... but the tests yielded nothing. He was at a loss and referred me to a sexual therapist..

I am not all thrilled by this. I am convinced that my bizarre symptoms are being caused by a physical defect and do not believe in endless and useless psychotherapeutic sessions. It's not in head! My body is playing tricks on me and is fooling me in a major way. However, I decide to consult him. After all he is the only one to whom I can turn, in all my desperation. I also decide to confront the misleading signals, which my brain seems to be sending. In an effort to regain control over my body, I no longer give in to this debilitating demand for orgasms. I am looking for distraction and avoid the positions which aggravated my symptoms. My determination is great but the urge is bigger and I lose that fight more than ones and have to pay for this defeat with a degrading relapse.

Masturbation sessions follow. Getting an orgasm has become almost impossible by now. An hour and a half masturbation sessions are no exception. Being stuck in an orgasm which just wouldn't come over that top. Crying, yelling and begging for relief, I started developing various muscle tension techniques enabling me to achieve that orgasm. Searching for sexual thoughts, to help me past that sticking point. The most bizarre thoughts enter my imagination. Thoughts that just are not me and for which I feel very ashamed. I struggle to give those thoughts a sexual meaning. My mind is not thinking about sex. I just want to get rid of that feeling if only just for a brief moment....

The diagnosis...

It is June 2005 when I end up in a chair in the sexual therapist's office. In order to inform him the best way I can, I had committed my whole story to paper and sent it to him in advance. A long story in which I opened up my entire life to him. In which I described my symptoms and the results of my monitoring efforts. In which I also submitted possible causes: Maybe it was the birth control pill, which I had been using between age 15 and 52 and was causing these symptoms now... Or maybe the menopause... Perhaps was my catholic upbringing to blame for this bizarre condition and had I suppressed my sexuality... Judging from my written testimony the sexual therapist reached a very straightforward conclusion: I was suffering from "PSAS"; "Persistent Sexual Arousal Syndrome"....

I couldn't believe my ears. The monster finally had a name and I was not the only one in the world suffering from this bizarre condition. Finally... finally, after one and a half year of pure misery and lack of understanding, I was diagnosed with an existing illness. Now a cure would be right around the corner and before long I would be able to move on with my normal life. In the euphoria of the moment, I didn't register the rest of the conversation with the therapist. When I arrived at home I could only cry. For three days I soaked my computer keyboard with my tears of joy. Because now I knew what was wrong with me, I wanted to learn everything about it. So the Internet became my best friend.

It takes days, before fragments from the conversation with the therapist begin to resurface my memory. He had been offering therapies based on medication, one of which would disable my male hormones. But my personality was the main reason for my condition. Perfectionistic personalities, like mine, carry a lot of physical tension within themselves, causing the blood circulation in the pelvic area to stagnate. He would be able to tackle these culprits by giving me psychotherapy, in combination with physical therapy.

I made an appointment with a physical therapist who worked closely with the sexual therapist. The kindest and most emphatic woman you could ever meet! For the first time I felt free to let my tears run freely in public and those tears ran, and ran, and ran. Each time I visited her. I noticed that indeed I was carrying a lot of physical tension within myself and I did my utmost to perform the exercises to the best of my ability. However, most of these exercises only aggravated my symptoms.

Death wish...

In my hunger for more information about the condition I google myself almost to death. I am dissapointed to discover that there is so little information about PSAS available. Other than that there are 40 PSAS cases documented world wide, I find nothing about causes or treatments. Because of this the therapist is alone in his opinions about PSAS. I feel comforted by the fact that I am unable to find anything about psychological causes, because I am still convinced that my condition is purely physical and physical only... Although I could have kissed the man who diagnosed me with PSAS, I don't believe in his theory.

I then regret to have sent him my written testimony. My whole life story committed to paper. A story that would make any psychologist's mouth water. I was sure all kinds of psycho-labels could be used to "explain" my PSAS. But it was too late to withdraw my life story, and ask him to ignore it, would be the same as withdrawing a lottery ticket that had already won millions. I got frustrated. I didn't know how to handle all this. I could say that my condition isn't in my head but how could I endorse my headstrong views, without backing them up with facts. Before you know it I would have acquired yet another label; allegedly having a problem with authority, stemming from a bad relationship with my father... or something like that, just didn't feel like that. A situation like that would be too much and would only cause me to get more depressed rather than it would help me...

In my further quest on the Internet I stumble upon the website of an American fellow suffer. Jeannie's story is a candid account of what she has been through, since her first symptoms surfaced in 1995. I recognise a lot in what she writes, but reading her story also has a sad and disencouraging side. Her countless efforts to find medical assistance kept amounting to nothing. The suggestion that it is 'all in here head' and that she was being called 'every man's dream', gives me more hopeless visions for the future.

That makes me realise that I would most probably be stuck with this stupid disease for the rest of my life... and that prospect is more than I can bear. The stress that had been building up in the past year and a half, now translates into total exhaustion and desperation. From a fairly normally functioning woman I had turned into a pitiful excuse for a human being who saw no out of this situation. This is why I one day found myself in front of the medicine cabinet, which harboured enough pills to release me from my misery...

In the days following my depressing mood and my almost non-existent fighting spirit, I realise that my last piece of fighting spirit would be the only option that could save me, but I am all alone in this fight... My sex-partner is not interested at all and still calls me his "sweet little horny girl" who, in his opinion, is not able to accept her sexuality. My contacts with friends have diminished and the mission I vaguely envisage, is an almost impossible one. Even so and because of my will to survive, I decide to start fighting again. How that battle has to be fought is not clear to me at that moment. With the courage of fools in one hand and 60 hypertension pills in the other, I choose for an unknown future and flush the pills down the toilet.

Internet, research and fellow sufferers...

I continue my quest on the Internet and become very good at it. I take part in an American Internet study about PSAS. Through this study I come into contact with Sandra Leiblum who discovered the syndrome. She provides me with the name of a doctor in The Netherlands, who is supposed to be familiar with the phenomenon and could probably help, or at least provide my with an explanation for my discomfort. I contact him via e-mail. Because I cannot see two different doctors at the same time and because this doctor carries the title "psychiatrist", I decide to keep seeing the sexual therapist.

Fellow suffer Jeannie also appeared to have started a support group and of course I join in. The group has 90 members at the time. These women have the same symptoms and experience the same I do. The sense of recognition is great and I feel supported and less lonely.

I get very interested in the similarities I can find and I browse myself through the more than 7,000 messages which are available at that time. Not only do we share the overwhelming symptoms, also the enormous impact PSAS has on the lifes of my peers, impresses me. Divorces, loss of employment, lack of understanding, feelings of shame, suicidal thoughts and desperation... pure desperation. When I read their stories, I realise that I may count myself lucky. Some of these women have been living with this condition much longer than I have. Their odyssey past many doctors from a wide range of specialities had not yielded them any result at all. All diagnoses, with the treatments that came along with it even added to their misery. Some would take clusters of electro shocks or travel halfway around the world to have nerves blocked. Horrible treatments with even more horrible consequences. Others resorted to all kinds of medications or had themselves talked into diagnoses like bipolar disorder, obsessive compulsive disorder or hyper sexuality. Others ended up in the offices of alternative healers and more than often in the hands of an opportunistic quack who was feeding his own incompetence with the desperation of others. The sad outcome of it all was clear: None of the treatments were able to chase the PSAS monster away and so it seems that a remedy for the condition is far away... very far away

My hunger to understand the illness myself has no limits. I study literally everything. The mechanics of hormones, side effects of some medicines, muscle diseases, entrapped nerves, blood vessel disorders, possible influences of our modern society, and many many other angles. I also study the personalities of my peers to see if they match mine. Except for the obvious fact that we share PSAS, it appears to be that personalities like mine are rather exceptional than common.

I start keeping comprehensive files. By monitoring myself even more and writing everything down, I believe to have acquired valuable information. I feel strengthened by the positive turn I have been able to give to my illness. In all my overconfidence I am determined not to rest before a plausible explanation for my condition has been found. Determined also, to this time resist the sickening need for orgasms, I break with my sex partner and masturbate as less as possible. From now on I shall rule my genitals and not the other way around. I also get rid of the needless feelings of shame and guilt that had been making me so immobile. I don't have to be ashamed for an illness, I didn't ask for!

I submerge myself in what seems to be my clear cut mission. I want to be heard, really heard! It is I, who is suffering from "Persistent Sexual Arousal Syndrome" and it is I who carries the answer to this illness within me. In a short letter I tell my therapist that I am available for research. I reject medication and in particular the disabling of my male hormones. I decide that on my next visit I shall convince him that PSAS is a physical condition.

Inspired by, and like my American peer Jeannie, I decide to complete my website on PSAS (long term project in development) as soon as possible. With this site I want to reach women also suffering from the syndrome. Women who are suffering in silence. I want to reach out to them, as I wished someone had reached out when PSAS almost became fatal to me.

Although 'sitting' is one of my worst enemies, I sit behind my computer and dedicate myself completely to the development of my website. All my time and energy is devoted to the site, to the contact with my peers and my unrelenting quest for answers to this condition.

Meanwhile I regularly visit my physical therapist for treatment, but this yielded no results whatsoever. On the contrary, my symptoms are often getting worse.... Although she remaines convinced of her opinion that my condition is related to my personality, she also remaines open to suggestions concerning other possible causes. She is a terrific listener. Without knowing it she fulfills a very important role in gaining more insight and with the decision I finally make.

The less frequent visits to the sexual therapist also offers me more insight. Mainly into him and the treatment that he persistently keeps advocating. He rejects every suggestion that PSAS might have a physical or neurological cause. His therapy remains in changing my personality in order to guide me to the orgasm I am not able to get anymore. I gradually become aware of the fact that he is used to treating women who are not able to achieve an orgasm and that is the way he is treating my problem. It becomes clear to me that he doesn't understand a thing about PSAS. I don't want orgasms, I hate the urge for orgasms, I am almost the personification of an orgasm. Furthermore I had probably experienced more orgasms since my PSAS than many sexually healthy women would ever experience in their entire lifetime. I am stuck in that damned orgasm and getting one will not change a thing. With all the research that I had done up until then, with the stories of my peers and with the results of self monitoring, I still was not able to get the attention I myself and PSAS deserved. 8 Months of intensive talking sessions, crying, practicing and trying to change a 55 year old formed and consolidated character, I decide to go down another road. A road that inevitably would lead to saying goodbye. Saying goodbye to my sexual therapist and with pain in my hart also saying goodbye to my physical therapist.

The new road.......

Through various strange deviations and continents I come into contact with two Dutch fellow sufferers. Surprisingly they are being treated by the doctor, to whom I had been referred to by the discoverer of the syndrome and with whom I had contact before. The PSAS world turns out to be a small world.

I decide to send him an e-mail. Again I put pen to paper and write down my story, albeit shorter this time around and written from another perspective. Determined to not go down such an emotionally demanding road, I let it be known what my viewpoints are in advance and leave my life story out. I decide to pose as an expert by experience, which actually I am, and leave it up to him whether he is prepared to listen or not. My first visit is characterised by a take-it-or-leave mentality from my perspective. Somewhat nervous, afraid to be disappointed again, I now end up in a chair facing my new doctor.

My new doctor carefully notes down my case history, focusing on my physical and sexual history. Much to my delight he rules out a causal relation between my psyche and my illness. My first impression is a good one. His angle is exactly the opposite from my previous doctor and I am delighted to learn that he has been looking into neurobiological scientific PSAS research. This is too good to be true. I was actually confronted with a scientific researcher and that is what I had been hoping for all that time. No psychological mumbo jumbo and no pretentious talk about all sorts of causes, but pure scientific curiosity after PSAS. He embraces my expertise and seems to be genuinely interested in my ideas and findings. My hope for a positive outcome for me and my peers has returned at this stage. During the period which followed I underwent various tests, useful test, right up my alley. For the first time I feel as if I myself and the syndrome are being taken seriously.

Johanna


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