Health Organization for Pudendal Education

Since a long time I didn't know that there is scientific research on PGAD. Now I am here a new member and very glad to have found this page.

I'm writing from Germany and I have been left alone since years though I'm living in a town with a University Hospital.

So, since years I'm doing my own researches. I observed myself very well and I've read a lot of books. From the beginning of my complaints for me it was obviously that in the case of PGAD there is more than only bodily disorders of nerves.

Some weeks ago I decided to write an article. I have NO solution!! but I have another view of what PGAD could be. It is possible that it makes the whole subject more complicated but I really believe, medicine must start to think in a new way.
I've written an English and a German version and I posted both on the German "regs.aktiv-forum". For those of you who are interested in reading and who have enough patience to read a very long article (14 normal sides) I want to set the link to: A Differnt View of "Restless Genital Syndrome" and "Persistent Genital Arousal Disorder"

http://regs.aktiv-forum.com/t69-my-lett ... sh-version

I'm sorry for my English in this article but I'm not used to write difficult contexts in English. So I hope you can understand what I want to explain.

I have also sent this artcle to Prof. Waldinger in Den Haag who is researching in Europe, Dr. Philippsohn in Hannover and Dr. Pukall in Canada who is starting a study on PGAD, as I have read on this page.


Hallo Violet,

congratulations for your great work on this website.
Of course I'm ready to post the article on this forum under a new thread too but I ask for your permission because this article is so long and the content is very different to "normal" medicine.

Aristocat

Hello Aristocat,

Yes, it is a long article but I think it's OK to post here if it is the same as the one I read at your link. I think you would be able to post it in this thread but if you have a problem posting it, let me know.

I agree with your comment that PGAD is torture, it is definitely a trauma, and patients should receive more support than to just be sent home with a pill. It may be possible that for some people the problem is related to the vagus nerve. I actually researched that possibility back in 2003-2004 but in the end, for me pudendal nerve entrapment was the cause. If your view of PGAD is correct, what type of treatment might be effective? In your research, have you come to any conclusions for possible treatments?

Violet

Hello Violet,

thank you, I will post the article after this comment and of course it is the same one as on the German forum..

In a part the content of this article is a hypothesis. Nevertheless I think scientist should have a look at the vagus nerve because that all is a trauma, as you say too, there is no doubt. The trauma is not a hypothesis, it is a reality. So the autonomous nervous system is highly activated and trauma research knows quite well how trauma works in people over the vagus nerve. But, they don't know how to treat it. We have to see very clearly that until today medicine can't influence the autonomous nervous system. All psychochemicals make dull and numbed (I know what I'm talking about) but they don't cure. And it is very interesting that physicians have great problems to stop the pain. I know it is difficult in any way to influence nerve pain. It seems – that is MY oppinion – we can't influence pain produced by the vagus nerve because no concrete nerve is damaged, so no concrete signal is sent to the brain over the “normal” way but the whole system of the great vagus nerve is excited.
At this point I come back to the ancient science that says the vagus nerve is steered over our emotions and thoughts. IF it is right that human beings have three great parts of energy in equal parts – body, emotions, thouhgts – we have to pay attention to all these parts, that means a very new thinking about human beings. The fourth part is the subconscious which always sends thoughts and emotions to the brain.

To reach the fine energetic parts in the moment we have no concrete interventions. I think breathing therapy could be important. We all are breathing in a wrong way. Body therapies, autogenes training, meditation (if possible, it is not the right way for everybody); to be in nature over hours calms down the autonomous nervous system. All working that has to do with the earth. Our nervous system is electrically and so to ground is positive.

I'm still thinking, and I'm not at the end with this great problem. Is there a difference between PN and PGAD? In the moment I think so. I do not doubt that you had a nerve entrapment. We have to look at the problems from all the sides we are able to.

Aristocat

Aristocat wrote:.

I'm still thinking, and I'm not at the end with this great problem. Is there a difference between PN and PGAD? In the moment I think so. I do not doubt that you had a nerve entrapment. We have to look at the problems from all the sides we are able to.

Aristocat

Yes, I agree. I think that PGAD can have different causes and PN/PNE is only one of them. For me it was PNE but for some people it may be something else that causes their PGAD.

Violet

Aristocat, what you are describing is a mind body syndrome or sometimes called "Medically Unexplained Physical Symptom" (chronic fatigue syndrome, fibromyalgia, IBS, chronic pain, multiple chemical sensitivity, Gulf War illness). My PN in my opinion was a mind body syndrome. I healed.

The way I see it is that there are several levels of explanation.

Originally, it was explained by eastern philosophy. Zen meditation or Vippassana do address how un-felt emotions (feelings) are the source of symptoms. It is mostly forgotten as Western culture only took the mindfulness part of those ancient practices. It ignored the body awareness side of the practice.
Vippassana meditation fully addresses emotions. In fact Tim Parks (teach us to sit still) got cured of CPPS during a 10 day Vippassana retreat.
Alan Watts or Eckhart Tolle do address emotions in their books.

Then more recently came Freud, Groddeck, Alexander, Reich, Mitscherlich, jung, Thure von Uexküll, etc. that used western soft science (psychology) to explain what they called “psychosomatic” syndromes.

Sarno, that developed his theory in the 1970s, also borrowed the soft science explanation available to him. Hard neuroscience was at its infancy then.

Finally in the last decade, neuroscience, the theory of poly-neuropeptides (chemical coding of emotions) , fMRI studies of the brain start to confirm what was suspected: Chronic pain does not equate tissue damage in many cases and the brain is involved in the process (IBS, skin issues, IC, PGAD). Those symptoms being an equivalent of anxiety.

For many, psychosomatic patients are still viewed as being disturbed or even feebleminded and therefore is deeply insulting. The “my pain is *real*, don’t you dare saying it is psychosomatic” syndrome. A lot of patients suffer because they are endlessly on the lookout for some yet to be identified physical problem that allegedly explains it all, when in reality there is simply no physical cause to be found (only pelvic floor dysfunction due to the pain).

nonsequitur, thank you for your detailed explanations. I also do not follow the physical arguments of popular medicine.
At the beginning of my sudden suffering I went to a neurologist. I knew nothing about PGAD. After a five-minute conversation she sent me to a mental hospital. I told her clearly that I was in pain and about these sexual feelings and that I needed help but she remained stubborn. As I have described, the feelings for me were not in the tissue in a certain way, and so I thought, ok maybe psychotherapy can help. They gave me three different neuroleptic drugs with different side effects, muscle aches, akathisie, panic attacks, etc. I broke my arm because I was completely lacking in drive and had fallen on the stairs. When I said enough is enough they sent me home because I did not show compliance anymore and was not reasonable ??? I was diagnosed with "body delusion", whatever that is and however this comes into being. You're right, that is deeply insulting, that is stigmatizing and tagging. So I did my own researches. In Germany with this diagnosis I needn't to go to any other physician, this diagnosis is the end of help.
I write this to show other readers how dangerous it is if you are fallen in the psychiatric net with PGAD.

So I agree with you it is a mind body syndrome, no question, and I am glad to read that there is literature explaining it. I had read some of your other comments and so I already decided to buy a book from Sarno. I have read C.G. Jung a long long time ago and a book about Reich, not from himself.
It is interesting for me that they have started to confirm psychosomatic disorders scientifically. I didn't know but perhaps I didn't search deep enough.

Nevertheless I want shortly return to the picture of “Kundalini Energy”. I think we must have a special look at the altered states of consciousness which are happening in this psychosomatic situations automatically. They strenghthen the sexual feelings and the pain. Some women wrote after an orgasm they were “tracked in” they had bad feelings, twinges of conscience, they felt sad or aggressive. In the meantime I think psychosomatic disorders, most of all if they have a lot to do with sexuality and the sexual area, happen in altered states of consciousness. As I know research only looks at them in the context with hypnosis. I have read the old hypnotists (Féré, Binet), and I think these different states make us feel emotions too in form of pain and hypersensitivity and that in an extreme way. I think it is another aspect we need research.

Of course you are right if you write “the way I see it is that there are several levels of explanation”. But since a long time all ancient sciences tell about the “energy body”. They knew, as you have written, “unfelt emotions” can drive into pain and other problems, felt as located in the body. That is why it is told in old words the “energy body has to be cleaned”. They also tell about the mental body but that is a new subject about the so called “mental disorders”. Human beings are much more complicated than medicine sometimes wants to know.

One sentence in your comment gave me a “yes of course” experience. “These symptoms being an equivalent of anxiety”. Sometimes a simple sentence can move more than we believe. Thanks a lot.

Aristocat

Could someone offer me advice. I am 41 and ever since I read about pgad, I have become terrified of developing it, especially as I near towards menopause. Could someone give me some info about how common it and how worried I should be. The fear of getting it is upsetting me. Thank you.

Cj0307, last year I read a lot about PGAD but I didn't find any statistics for the US, Canada and Europe. It seems to me this is also connected with the fact that each physician works for himself and makes his own research. There is no great networking which I think would be necessary for the patients.

Perhaps you have read the comment of "nonsequitur" and my answer. We have a different opinion about PGAD unlike the doctors and other patients. "nonsequitur" wrote that it is a psychosomatic disorder and that these disorders in turn are an equivalent of anxiety. Anxiety is not a good companion and as I wrote feelings have an affect on the body, as our thoughts do the same too.

Do you read so much about cancer or other terrible disorders too? Your soul won't like this because it wants to live in harmony in a good connection between body and emotions. I do not know but maybe you are looking for help to clarify these ideas which have nothing to do with reality.

I read a lot articles written by the physicians and I have read many stories of patients but I could not see that a certain age (Menopause) was responsible. There are young, older and very old people

A long time ago one of my good teachers taught me: anxiety we are only forming in our ideas. Fear is if we are standing in front of the tiger and only can run for our life. But anxiety we are able to deal with, not at once but time by time.

Aristocat

It is the fear of it that is gripping me, I am bipolar and do tend to worry greatly about things. I guess it is the stories I have read about people not being able to even leave their homes that terrifies me. Also, there seems to be no one reason what this illness starts. The fact that some people just wake up with it, with no rhyme or reason as to why they have developed it. I dwell on the horror stories about that people who have had very active lives and PGAD has crippled them. Possibly because I am a social butterfly and the idea of staying home to masterbate 24/7 terrifies me. Thank you for your response Aristocrat.

CJ, do you have pudendal neuralgia? Is that why you are worried about PGAD?

I don't think everyone with PGAD stays home and masterbates 24/7 so you don't need to worry about that. If you are going to worry about something it is far more likely you will be killed in an auto accident or get cancer than that you will get PGAD so it's really not worth it to waste any time worrying about it. PGAD is extremely rare.

Violet