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I took 2 sessions with psychiatrist and he didnt know about paruresis, I cant belive that now, a person who study this kind of problems didnt know about this common "phobia". I told my dad, like 6 years ago, "I dont wanna go to that trip, I cant pee in public", he said "dont feel bad about that, you gonna get better by the time". I didnt seen a urologist, but I would like to ask him how many ppl come to his office saying they have problems to pee and after lots of studies and tests, urologist says "you have nothing".
Why nobody know about paruresis? I can only trust in internet, epecially this web. I could start to cure myself way before. Anyway, Im 20, not so late.
Thx for reading, just want to express myself. Sorry about the bad english hehe.
you're right....many head doctors have no clue about AP. i've seen more counselors and therapists than i can count, and not a single one of them knew anything about it...not one. even the medical doctors I saw didn't know about it...AP is NOT as common as you think it is. or at least not as common as some places I know that claim it to be. if the medical industry is unaware of the problem, then how can they treat it? they can't. there is a website out there, that claims they've been around for about 15 yrs, and someone who wrote a book about it, but yet, go into any doctors office and look through pamphlets, you will not find any information about AP. with a book published, and a long standing international website, you would think there would be more recognition of people who are paruretic, or that organization would push for publicity, instead of keeping it locked up...wouldn't you think? i know I have been asking doctors for over 20 years, and they have no clue.
To be fair its not as if anyone who uses this site is going to start wearing merchandise, no one is going to join a facebook group or start screaming from the rooftops. The whole way AP works is you think you're the only one, you lock yourself in a cubicle, you stay at home, you avoid public situations and think its something unique to you. On the otherhand, since the internet came along and this site got built, there is now help available and people are starting to get better from AP, so really its up to us as individuals to raise awareness and support each other. I've still got a way to go until I can tell my friends and family and anyone who'll listen about a problem that, hopefully by then, i used to have
Simon...look at it this way. how long did it take for the medical industry to recognize erectile dysfunction as a real medical problem? how long did those men feel the same level of embarrassment and humiliation? today, you can't watch any TV or read health magazines without seeing commercials and ads, advertising meds for ED.
my point was...if someone wrote a book about it, then why have they not spread the word throughout the medical industry? (do they want ALL the profit?) why have they not mass produced brochures to send out? (they do get large donations and huge amounts of money for workshops). I've seen the head office, it's pretty small by professional standards and its above a restaurant (like a rented room). i dont see those who say it's so common, doing anything other than creating a website and selling a book to help those who still have no clue whats wrong with them. and yet, they call them selves, international.
there are people out there, who have no clue this website exists, and it's fate or chance that they stumble in here or that other website.
if they saw a brochure at the doctors office, or pharmacy, or clinic, instead of relying on their ability to search keywords, they might find it not so embarrassing or humiliating...if they see its a "real" condition, they will get help.
besides...not ALL people have the internet. but most people will at some point, go see a doctor, or go to the drug store, or some type of clinic.
i dont see the founders of AP doing anything except relying on their website and search engines, to be found by those who need help.
leaving it up to the individual to find help for themselves on their own, is what happened to me...it ruined my life and i spent 20 years asking doctors. how many other people out there are going through the same thing, completely lost in their lives? i commited suicide when i was 15. how many other teens have commited suicide? and IPA deletes posts that talk about that. i think it's obvious, IPA has done nothing to advance the knowledge and help for others. just because there is a cure, and IPA is there, does not mean they are helping others find it. i find it highly irresponsible, that their orginazation expects other people to find them, on their own, when they know damn good and well, most sufferers of AP are too afraid to say anything. i suffer from it and will not register just to read their forum. why are they so secret and private about it? is not, ED as private? so...who is responsible for spreading the knowledge that there is help? those who suffer? or the founding website that sells books? think how many more books they could sell and how many more people they could help, if they went public...plus, the publicity would release a huge amount of stress for those who suffer...it would be accepted by the main stream. hmm.
so...to reiterate. doctors and shrinks don't know what AP is because, nobody is doing anything to let them know its a problem. I dont get the profits from book sales, etc...to spread that word...IPA gets those profits.
I can understand your pain and your frustration at the seeming lack of knowledge about this condition in the medical world. However I must clarify a few points about this and about the IPA, because you are saying some things that are just not true.
You mention erectile dysfunction; yes it is in the public arena now, but do not ignore how long it has taken to get there. Men have been having this problem for ever, yet it went public only in the 1990s? This applies also to testicular cancer and male breast cancer.
The medical profession gets to know about something when patients arrive in sufficient numbers. Our advisor calls it the secret phobia, because sufferers do not want to disclose. Catch 22.
OK it was first researched and named in the early 1950s in the USA, and published in the Journal of General Psychology. So some psychologists would read it; but in the absence of patients with the condition, it soon drops out of memory.
Remember that this condition is major to anyone who had it, but is only one of a myriad of conditions that the medical fraternity has to deal with. It is also very difficult for someone, to whom peeing is seemingly a voluntary action, to grasp the impact it has both on life and mental well-being.
As for making an impact. Someone I know who runs a charity for Birth Defects said it took 10 years of well-funded promotion to get to the point where birth defects was seen as a topic in its own right justifying attention. Remember that was with serious funding by one major donor, of a subject that can be broached openly, and attracts sympathy, with a population of affected families to use a case studies, and with a full time member of staff working on the promotion.
In contrast the IPA and the UKPT have no serious funding; deal with a subject that is difficult to talk openly about, is not easily understood, and has few people who will come forward to explain how it affects them; and has no fulltime staff working on it.
In spite of that, both the IPA and the UKPT have managed to get media attention: radio slots, TV appearances, newspaper articles. It is noticeable that the terms pee shy, shy bladder etc are becoming more used viz references in soaps, blogs etc.
In the UK some serious money is being spent on promotion through a charity called AnxietyUK; it is dealing with toilet phobias as a whole, and has resulted in useful publicity.
Our feedback about the reaction of doctors (in the UK the family doctor who is a generalist is the first port of call) is one that ranges from “you’d be surprised how many men come to me with this problem”, through “I’ve heard of this but you are the first to come to me with this problem”, to bafflement and non-comprehension. The point I am making is that it is not totally unknown
I can understand that you are not happy about the IPA. However a lot of what you say is just not true. They get just enough money to run a skeleton part-time staff. They would love to do more, but cannot get the money to do it. They have however have had a lot of exposure in the media and are rightly concentrating on the USA specific problem of work-place drug testing: they are moving closer to getting the law changed. A lot of this work is done on an unpaid basis.
As for international: it was due to the IPA that similar organisations have been set up in the UK, in France and in Australia; this was the a result of their coming to these countries to run workshops. They have also held workshops in a few other countries, hoping that these countries will get themselves organized as well.
You mention profits from book sales. I think you are confusing profits made by the tiny minority of big sellers (e.g. da Vinci Code) with the tiny profit made by the rest. That book has sold probably about 10,000 copies over the last 10 years. Say a “profit” of around £10,000 or $10,000; that goes nowhere to doing anything major on a national scale.
We in the UK have considered how to get through to the medical profession; even to sending something to every doctors’ surgery. It would cost a mint of money; yet a doctor’s comment to me was “well you know we get a hell of a lot of literature sent to us” the implied comment being “and we don’t read it”.
We would like to get articles in the industry magazines; but to do that you have to have the appropriate qualification to get published. Catch 22. We did get an article published in a nursing magazine, but they approached us, not the other way round.
I could go on…but to summarise..
Please do NOT knock the efforts being made in good faith, on a mainly voluntary or part-time basis, by a small group of people who are doing their best. I know I could do more, but I do not have the time, the energy or the money to do it. And I know the others are in the same boat.
The way forward for individuals is to recognize how the condition started for them, and then to move forward and to do something about it. I realize that you live in the land of the free (aka the land where the devil takes the hindmost), which has resulted in your being trapped. I wish I could do something about it but there does not seem to be anything I can do.
I personally do all I can to get information out to the professionals and to the press I go to meetings to promulgate and it often costs me money to do this so there is no profit in it for me as a professional psychologist
what counts for most is the discarding of secrecy and being prepared to drop the baggage that surrounds this problem this for me is the most important step in therapy start by tellng a family and a ferw close friens make the condition one that is just accepted in the same way as incontinence is now
in the past the UKPT did try to get money for the printing of leaflets for clinics...but as Andrew said the money went to anxiety UK
Its almost like the NHS want to slam the door in are face.But this site and the trust do a fantasic job in helping us all.Over the years ive had all sorts of ag my old gp looked at me like i had horns growing out the side of my head and told me not to worry that i wasnt going mad.I moved house and when i went back to the doc he was quick to say we cant see you and told me to registerin my new area.And my new doc is even worse you wait ages to be seen etc all to no avail.The NHS on the whole is a bad service for any health problem. many thanks Michael.
