U.K. PARURESIS TRUST

UK paruresis trust

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women's workshop?

Posted by trixie on 16/7/2007, 1:42 am

hi...i have been living with this condition for nearly 30 years & I share a similar story to so many I have read here (medication, surgery I should not have had, daily pain & emotional stress). As a woman it is strange to think I am in a minority, and I would love to attend a workshop but I know there is absolutely no way, no way at all, I would be able to talk about this with guys.
I have only ever told 1 person about this in my whole entire life & that was very difficult - it was to my ex, who in 7 yrs of having a relationship with I was never able to pee in front of - or even sometimes it was impossible with him in the next room. Which was just crazy because he was a very understanding, patient, open guy about this issue and I feel a total, utter failure for never having been able to do this with him. For me it seems to be worse with people I know...for instance I can sometimes go in a public toilet with someone in the next cubicle as long as I don't know them.
So I would really like to know if there is ever enough women interested in attending a workshop that would consist of only women? Even if it was only a few women...I am sure this disensitising method would help, but I would only feel comfortable and less embarrassed if it was with other females. I am seeing a psychologist for an intitial assessment next week too, where I am going to talk about this condition....it has taken me nearly a year to convince my GP to refer me...I am on anti-depressants and this peruresis is part of it, but I think the practical nature of these workshops would very much help too.
Is this likely to happen?

Re: women's workshop?

Posted by AdamP on 17/7/2007, 12:59 am, in reply to "women's workshop?"

Hi,
Don't feel you are the only lady out there, especially as no one has posted any replies to your message just yet.
I think the UKPT have run an all female workshop before? Get in touch with the chairman Andrew Smith through the link at the top of the page.
Good luck and I would strongly recommend you attend a workshop.
Regards
AdamP

Re: women's workshop?

Posted by Margaret on 17/7/2007, 8:56 am, in reply to "Re: women's workshop?"

Hi Trixie, Don't despair. The first support group I went to in London was all men apart from me. I had severe reservations about going, but Andrew reassured me and after talking to him individually for a while, I felt quite comfortable joining the main group. It's a huge step, but the fact that everyone has the same problem creates an immediate bond and gender no longer seems to matter. I know an all female group would be ideal and hope you get your wish, but failing that, pluck up courage and go to a workshop anyway.
Best of luck,
Margaret.

Re: women's workshop?

Posted by Andrew on 17/7/2007, 11:03 am, in reply to "women's workshop?"

Hi Trixie
I have emailed all the women on a list I keep to ask them to read your posting, and to ask for ideas of what we could do if not a full workshop.
I understand how you feel about a mixed workshop: the men can feel like you as well you know. One advantage of a mixed workshop is that it rams home to the men that it is not a man thing i.e. it does not make them less of a man - how could it when it affects women as well. And the reverse is true i.e. it is not a gender issue.
On workshops we make it very clear that if there are any issues that anyone does not feel comfortable to speak about in front of others - it can be dealt with on a 1-2-1 basis. And in the mixed workshop the men and women can choose to separate when needed.
Interestingly it was noticeable that the men talked mainly about how they did or did not perform, whereas the women talked mainly about how they felt.
However I fully understand where you are coming from and hope we can get a womens workshop off the ground.
To come to what you said "I feel a total, utter failure for never having been able to do this with him". Your paruresis is NOT you, you are more than your paruresis, your paruresis does not define you. Try to see it as something separate from you. It is an anxiety related issue, and you are the sum of many many attributes, of which paruresis is just one temporary thing. Your ex did not see a paruretic who happened to be a woman: he saw Trixie, with all the great attributes that drew him to you; to him the paruresis would be as little a thing as say your ingrowing toenail. Nobody, and I mean nobody, would say that their relationship with their partner depends on their partner being able to pee when they are around. So I hope you can change your mind about that statement and rephrase it in a much less major and less "emotional" way.
Take care
Andrew
Chairman

Re: women's workshop?

Posted by Trixie on 25/7/2007, 10:34 am, in reply to "Re: women's workshop?"

thank you Adam / Margaret / Andrew for your supporting words...it is sometimes hard to separate myself from this issue. I know I won't be able to discuss this with guys around....I'm just so humiliated by it all right now.
However I went to see a psychologist yesterday...well it turned out she was not actually a psychologist but the assessor of the team - a woman, I had insisted on a woman. It has taken me 12 months for my GP to get me to be seen. Apparently if you live in South London and have anything less than paranoid schizophrenia they just don't have the resources to be bothered with you.
I have had bouts of anxiety/depression since I was 8 (the same time as the onset of my paruresis) & have had some support from psychologists (not living in London I need to stress) for these more general issues...but I have not been able to talk to them about my paruresis before now.... I had to try and explain to my GP what this condition was..she was flummoxed and was quite at a loss really but nice about it and pressed ahead with my referral.
But today at this community mental health assessment team I knew I really was talking another language. I was speaking to this assessor and an observant trainee nurse (having someone else there totally freaked me out too) and this lady just kept trying to play my condition down "oh but everyone can have trouble peeing" - I had a copy of the Soifer and Himle book with me and I passed it to her and she just looked perplexed. She admitted she had never come across anything like this before and when I was explaining about the un-necessary surgery I had had she was answered "well it is very good that they checked out there wasn't something physically wrong with you" - very good?!!! They stuck a camera up my urethra, "stretched" my bladder unnecessarily and gave me a good old infection in the process which meant when I did pee afterwards I was peeing blood clots and had to be injected with diamorphine to cope with the pain. I feel like crying. In fact I am crying. I cannot begin to explain to anyone who has not suffered this how much it has affected my whole entire life. And today I felt belittled. I was told (after a 90 minute assessment, apparently they normally only last 45) that I might be offered a course of CBT (I have to wait a few weeks for an answer) - but if I did it would only be because I am a single mother and she seemed to be concerned that my overall depression/anxiety could put my children at risk. She seemed not bothered whatsoever about my paruresis.
It was a HUGE thing for me....to tell a complete and utter stranger about this so personal secret. I went begging for help and it was not forthcoming.
I am so entirely grateful I have the board here to make me feel like I am not mad or stupid or ridiculous. I have been checking in here for 2 years now and it has made me laugh and it has made me cry and it has given me hope...in some tiny ways I am improved...I can usually use a public bathroom if it is busy and if it isn't I simply flush the loo - reciting my "people just don't care" mantra. But that is it. I can't go with people waiting for me. I can't go with people I know near. But my true goal is for me to never have to think about this again.
I am willing to wait a long time for a women's workshop. Even if there are only a handful that would be great for me. And maybe after that first step I can begin to be a bit more open and less embarrassed about this.
xx

Re: women's workshop?

Posted by Margaret on 25/7/2007, 1:43 pm, in reply to "Re: women's workshop?"

Hi Trixie, You do seem to have been very unfortunate in the help, or lack of it, that you received from professionals. I live in the South London area too and a couple of years ago I was referred to a psychologist for CBT. He was very understanding, and whilst he admitted he had never treated someone with the condition before, he took the whole thing seriously and was a great help. I hope that whoever you are referred to for treatment will be a lot more sympathetic than the people you have seen before and that you will start to feel better about yourself. We all understand how you feel, so go on posting !
Regards, Margaret.

Re: women's workshop?

Posted by Trixie on 26/7/2007, 7:46 am, in reply to "Re: women's workshop?"

Hi there Margaret...with the NHS it's all about luck isn't it? I hope if they do refer me I will be with someone more understanding...this assessor clearly thought I was wasting her time, she said "well you are certainly not mentally ill"; and no, I hadn't been sectioned, I hadn't been actively trying to kill myself or others, I hadn't been hearing voices. But for the first time in nearly 30 years I had had the courage to come discuss this issue with an absolute stranger because I want it to stop having power over my life because this particular manifestation of anxiety has had such influence over my practical day to day routine and how I see myself. But on the other hand when she discusses "my case with her team" maybe someone there will either have experience of this or other social phobias and be willing to help.
And as for you turning up to an all guy's workshop - gosh I think that is terribl brave. I have not yet been able to discuss this with my closest girlfriends! I always wanted to not draw attention to my problem, thinking if I do tell everyone will suddenly become more aware of it. So I may never actually tell, because I am hoping to fix myself of this thing first. As I say with the help of reading this board and the Shy Bladder Syndrome book I am now able to sometimes use pubic restrooms as long as there are many cubicles and it is busy; they are much less stressful places and I feel a great sense of achievement just managing this.
thanks for listening

Re: women's workshop?

Posted by Margaret on 28/7/2007, 4:13 pm, in reply to "Re: women's workshop?"

Hi Trixie, I sympathise with you over the impossible questions they asked you. At my first assessment the woman asked if I was on drugs! I was about 68 at the time, and the only drugs I was on were those prescribed by my GP for the aches and pains of old age. I felt rather insulted . I don't think I look like a Junkie! Anyway, good luck with the treatment when it eventually starts.
Margaret.

Re: women's workshop?

Posted by Jenny on 13/9/2007, 1:52 pm, in reply to "Re: women's workshop?"

Trixie, I have just read your posting 25/7/07 and I thought that I was the only woman in the world to have this problem.
I have just today posted a letter to my psychologist (who I started seeing two weeks ago) explaining how I have had this problem for as long as I can remember (I am 43 now) and I even asked him not to laugh. I have never mentioned it to anyone before and I have never known any other female to have this problem. When you're in the loo and everyone else is doing their thing I just feel so useless.
I don't know if I am crying tears of relief (that I am not alone with this problem) or tears of sadness because I don't know if anyone can help me.

Re: women's workshop?

Posted by Andrew on 13/9/2007, 6:56 pm, in reply to "Re: women's workshop?"

Hello Jenny
Do cry tears of relief; you will not have been the only one to do so by far.
Do not cry tears of sadness, because though you do not know it, you can be helped.
Hopefully your psychologist will introduce you to CBT (Cognitive Behaviour Therapy); you will find out how the real world works, and will start to face your fears and to find them to be paper tigers.
You will find that this forum will support and encourage you, if you ask it to.
So share your story with people who know only too well what it is like; those who have improved their condition will try to show you the way.
best wishes
Andrew
Chairman

Resources for female paruretics

Posted by Carol Olmert on 14/9/2007, 9:34 pm, in reply to "Re: women's workshop?"

Hello,
As the women's coordinator for the International Paruresis Association (IPA) in the USA, I wanted to direct your attention to some materials I prepared at
http://paruresis.org/womens_resources.htm.
I have also written a book specifically for women with shy bladder syndrome, which I hope to publish or self-publish early next year. In it, I document the steps which lead to my recovery from paruresis after a 40-year-long battle, as well as provide other important information.
Along with Ruth Lippin, MSW, I have also co-facilitated two womens'-only workshops, each held in Chicago and quite successful. We may offer another in 2008, depending on interest.
If any of you would like further information, please write to me at olmert@aol.com and make sure you include the subject heading of "female paruretic" or words to that effect.
Good luck to all of you.
Best,
Carol

Re: Resources for female paruretics

Posted by Trixie on 27/11/2007, 10:21 pm, in reply to "Resources for female paruretics"

ah thanks Carol for your information...I have registered onto your site now and look forward to hearing from more girls about female specific issues regarding ap. sorry boys!

Female "pee buddy"?

Posted by Trixie on 27/11/2007, 11:51 pm, in reply to "Re: Resources for female paruretics"

also...just been looking at the US AP web forum and they seem to organise "pee buddy" introductions which seems like a great idea. I would very much be interested in doing this with another female from this board. I don't have time to do a full weekend workshop as I am a single mother of two and unfortunately I get no support in this; so a weekend away is impossible for me. As well as my stated embarrassment of having to talk about this in front of guys...but I would love to meet another girl to work on this with.

I am based in London. Is there a girl out there who would be interested in partnering up and doing some de-sensitising with me?

I am sometimes able to use public toilets (but sometimes only by flushing the toilet first etc) with strangers around but bizarrely never with people I know so this is my greatest challenge.

I have a new boyfriend at the moment and I am panicking as I've already said previously I was with my last boyfriend for 7 years and was never able to go with him around. I would like to think I could get over this with my new boyfriend. What is the etiquette in relationships like this? I mean; at what point do "normal" people think it is okay to pee in front of their partner? !!

Re: Female "pee buddy"?

Posted by AndyM on 1/12/2007, 10:45 pm, in reply to "Female "pee buddy"? "

Trixie--

I think one of the more painful aspects of our shared phobia is the great lengths we go to conceal it: secrecy, hiding, obsessing, shame. I also think the only way out is through, not around. If you have good feelings about your new boyfriend, why not tell him? It doesn't have to be elaborate or even medical. Something along the lines of, "I have shy-bladder and have difficulty peeing in public loos, or any situation when someone else is in close proximity or is waiting for me to finish. I'm working on it, but I'm not there yet. I hope you'll understand in situations when I might need privacy or extra time." My guess is, he'll be supportive. If not, then he's the wrong guy for you anyway; better to know that sooner rather than later.

Your question about etiquette reminded me of a long-ago experience. I was at a big party in a big house and since beer was my drug-of-choice, it was soon time to find "the room." There were so many doors in this place, the odds were pretty much even as to whether I'd find a bathroom or a broom-closet (in those days it would have been easier for me to pee in the broom-closet anyway). As paruretic luck would have it, I found the correct room at the incorrect time. When I opened the door, there was a guy seated on the edge of the bathtub, chatting with his girlfriend who was also seated...pants down (appropriate for the occasion)blissfully peeing away. I quickly apologized and backed out. Neither of them seemed the least bit affected by the intrusion; I remember she smiled at me. I was very affected by it: envy.

I wish you well on your journey to Recovery. I hope some way, some how, you'll figure a way to attend a Workshop. In my experience they are the best way to make the most progress in the shortest time. I also hope, in the not-too-distant future, that all of us will become just as carefree about peeing as the girl at the party (within the law, of course). --Good Luck--

Re: Female "pee buddy"?

Posted by Trixie on 2/12/2007, 10:38 pm, in reply to "Re: Female "pee buddy"? "

thank you for your kind words of support AndyM & indeed others in this thread. I've known about this board for 2 years now & it has immeasurably helped - my greatest achievement is I can pee in front of my children, indeed having my kids with me in public toilets really helps as it distracts me. But because of this board I can sometimes now use public toilets with strangers in there as long as I use other distraction techniques such as flushing the loo first as I am teaching myself that others don't care what I do in there! But I know I have a way to go with desensing with people I actually know. I was (finally & after some awful assessment sessions) referred to see a psychologist for CBT last summer to specifically discuss my paruresis but I suddenly had to move out of the area and now I have to find a new GP and start the process all over again - agh....

As for telling my new boyfriend...I just don't feel confident enough yet. He's very sweet so I am sure would try and be understanding but my experience last time was that it just brought my ex's attention this problem & that seized me up. I am also in the "trying to impress him" stage and I think asking him to help me desense would just make me feel stupid. Well, stupid is pretty much how I feel about the whole problem anyway!

So my shout still goes out to any women living in London who would be willing to work on this together.

Re: Female "pee buddy"?

Posted by Trixie on 19/7/2008, 11:43 pm, in reply to "Re: Female "pee buddy"? "

hi all! I am resurrecting this old thread of mine to ask if there are, as yet, any other women out there, or even just one, who would be interested in partnering up or forming a small women's group in London? I am 37 and have had paruresis for 30 years now.

I would also only be able to commit to a day at a time, entire weekends are impossible for me as I am a single mum with no support to enable my kids to be looked after.

I am still waiting for my CBT too - it's been over 18mths of trying now....and I know if I started that along with a pee buddy it would give me a chance of recovering.

many thanks

Ladies at mixed workshop

Posted by Christina on 6/10/2007, 3:13 pm, in reply to "Re: women's workshop?"

Having just found the site, then looked at the message board, and then that there is a workshop I feel totally amazed that there are so many of us around. I am thinking of next weeks workshop, but one of the things that holds me back is being the only very middle aged (55) woman there. Can any other ladies who have been to a workshop put me at my ease.

Re: Ladies at mixed workshop

Posted by Colin on 7/10/2007, 5:33 pm, in reply to "Ladies at mixed workshop"

Christina, I can assure you that mixed workshops do work, and that we have had ladies of over 50 before, very successfully. Do consider a workshop. I get the feeling from your postings that you are really determined to do something about your AP, and a workshop can be an excellent springboard.
Colin

Re: women's workshop?

Posted by Andrew on 26/7/2007, 8:26 am, in reply to "women's workshop?"

Hi Trixie
If you email me an address, I can post you the UKPT brochure, which you can give to the therapist, or anyone else. At the beginning it says:
"(paruresis).. was first researched and defined by Williams and Degenhardt in their paper “Paruresis: a survey of a disorder of micturition” in the Journal of General Psychology, 1954, 51, 19-29.
It is listed on the NHS Direct’s website: see Complex Phobias in the section on Phobias.
Even the Home Office Prison Service has procedures to cater for paruresis in prison. The letter from the Home Office detailing these is on our website: see News & Info, Projects, or contact us direct."
It could be helpful to point this out to anyone who looks as if they dont know what it is.
In the meantime, let's try to get a small "women's workshop" going.
cheers
Andrew
Chairman

Re: women's workshop?

Posted by Trixie on 27/7/2007, 1:53 am, in reply to "Re: women's workshop?"

ah the NHS listing is interesting and definately recommends some form of therapy...maybe the UKPT should be listed as a support organisation?
I await a response from all of the women out there!
thanks again Andrew

Re: women's workshop?

Posted by AdamP on 31/7/2007, 1:01 am, in reply to "Re: women's workshop?"

Hi Trixie,
I was taught by my of the participants of the course the following;
P.M.A - Positive Mental Attitude
Keep saying this to yourself because I do believe it helps to think in a positive manner.
I look forward to hearing your postings after the course and hope 3-4 ladies can get together.
Good Luck
AdamP

Re: women's workshop?

Posted by Jane on 20/7/2008, 9:07 am, in reply to "Re: women's workshop?"

Hi Trixie

I only discovered this site a few weeks ago, although I have had paruresis for about 40 years (I am 61).

I am going on a beginner's workshop in October (like you I am very nervous about being with all or mostly men but decided to give it a go). Once I've done that, I might well be interested in joining a women's group in London. I live in Norfolk, but can probably get cheap train tickets for a day's visit at the weekends. I've read the Shy Bladder book, but like you have no-one to practice the graduated exposure therapy with.

Let's all help each other, are there more of us women in reach of London?
I do feel I need to do the workshop first. I still find it very scary to talk about the problem face to face with anyone.

Hope you get your CBT. After being on a waiting list for over 2 years I have been told there is no availability of therapists on the NHS here, and probably not even for private treatment, which would be hugely expensive anyway.

Best wishes
Jane

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