This Discussion Board is for men who
find it difficult or impossible to urinate in a public or social situation. Women should use the women's Board.
The Board is maintained and moderated by the
U.K. Paruresis Trust. Registered Charity no: 1109541.
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further information, visit our website, or contact us at
I've been suffering with paruresis for about 30 years - I'm 34 now and it started when I was in Class 2 at primary school. I have only just looked it up and found a name for my condition, after watching embarrassing bodies on Channel 4. It seems to be getting worse rather than better as I get older. I'm female and can't wee in my own house if there is anyone else in, and sometimes when i'm on my own I still have trouble. Public toilets are definately out - I can be in severe pain and almost become unable to walk and still not be able to go. If I'm out in the pub it takes me many drinks and 5 or 6 trips to the loo before I can go. If I'm very drunk, it tends to be easier, unless people are waiting for me or there are other people in the cubicles. Travelling is the worst - I have never been able to go on a plane or a train or at an airport. For long trips this causes me great anxiety and I begin to worry about it weeks before I'm due to fly anywhere. When I went to Canada, I went 34 hours without weeing, it was agony. I have had one hypnotherapy session but she didn't really get what I was talking about and it didn't work at all. Its got to the point now where my day is planned around when I might need to go for a wee and where I can go - can I get home, will anyone else be in etc. This puts a stop to any impromptu plans for whole days out or staying over night somewhere. Its also affecting my ability to have a relationship because I can't stay over at someone's house, and can't go in my own house if someone else is here! My friends all know about it and they are all really understanding - we have a laugh about it and they wait for as long as it takes, but I want it to stop now! Got any miracle cures?! I would really appreciate some help and advice and just some more information really. I live in Truro, Cornwall and can't seem to find a suitable therapist either so if you know anyone who has experience in this, (I'm happy to travel as far up as Exeter), I would really appreciate some contact details. Also just like to hear from other people who have the same problem as me - I've never met anyone who has it to the same extent as myself! Look forward to hearing from you, Sally
Re: First time user!
Posted by Andrew on 21/5/2009, 5:28 pm, in reply to "First time user!"
Hi
Sally originally got in touch by email and has reproduced her message above. For the benefit of any others in a similar situation, a copy of my email reply follows.
Hi Sally
Good to hear from you :-) and very glad you have found us.
Briefly: for the info we have, go to our website www.ukpt.org.uk and select website.
There is a lot there; also on the Books page are some useful books, including one written recently by the women's co-ordinator of the USA organisation (IPA).
There is no miracle cure; you need CBT (Cognitive Behaviour Therapy) and time. The standard NHS 6 week course is not enough, but better than nothing.
Post your story on our Discussion Board; I will email the women to reply to you. In fact search through the whole board for female posters.
We run weekend workshops in London and Manchester - yes I know its along way but ......We are running a workshop in Manchester this weekend, there is already one woman on it and my wife is attending to support her. Details on the Board. We have had one woman attend who was just like you; she is not cured, but her life has improved greatly.
Do go to your GP and insists on being shown how to self-catheterise; there are infection issues for some women, but that is the lesser evil compared to 34hours lock-up. The cath fits in a container that looks like a lipstick holder. It means you can drain off at will. Only for intermittent use.
Well done for finding this site. Its a releif to find that this thing has a name!
Your story described exactly how I was, bar mine started when I was 8/9 ish. As I became more self confidant in myself in genaral, I found that my AP reduced but only slightly. It wasnt untill I read messages on this board and attended a workshop back in Jan that my life changed.
Have a good read through as many messages as you can on here, they are really re-assuring. And if you can get to the workshop in Manchester or wait till the next London one, it will be the best thing you will ever do!
The good news is that you have found this support now and not in 40 years time. Keep us updated with anything.
I know exactly how you feel a couple of years ago I had it really bad (all of my original posts are on this site if you wanted to look at them). Have to say you have gone a few hours longer than me before going but I know the feeling of finding it hard to go anywhere and anytime (even in your own home!).
I had hypnotherapy too and found the same result as you! However I went on one of the workshops and then again on the improvers workshop and went to the docs (and after a few tests) I was prescribed self catheters! I also use an mp3 player (which I take out EVERYWHERE with me! I can now go more than 90% of the time! I thought that I would have a lot of trouble with relationships too as I was with my ex for over 10 years, I've now started a new relationship and my new boyfriend is fantastic, he really understands the situation and has thought of loads of additional things I can do and even flicked through my workshop notes and shy bladder book.
If you would like to have a chat ask Andrew for my email address, if I can help at all I will try.
Take care and remember your not alone!!!
much love
Kel xx
Re: First time user - reply from a recovered female paruretic
Posted by Carol Olmert on 22/5/2009, 11:41 pm, in reply to "First time user!"
Dear Sally,
Andrew has kindly written to me about your post, and I will attempt to respond to the best of my ability.
My name is Carol Olmert, and I am the Women's Coordinator for the International Paruresis Association, the USA-based organization that is the sister to the UK Paruresis Trust.
I can completely relate to your situation and struggles because what you describe was my reality for many years. It is my hope that you will find some encouragement and inspiration to commit to a recovery program so that you can overcome your physical and mental pain.
Here's a little about me.
When I was 13 years old, I developed a fear about urinating in bathrooms if anyone else was around.
For over 40 years, I suffered from a bad case of shy bladder. In the beginning, I couldn’t stay overnight at friends’ or relatives’ houses or go on a ski trip – or any kind of trip – that required me to share a bathroom with others. Sometimes I wasn’t able to pee even in my own home if visitors, and sometimes even my parents, were close by or someone was waiting for me. When I moved away to attend college, I spent the first week in the student health center. In short, my condition dominated my life, and I felt very alone and isolated because of it. In addition to the physical comfort, the emotional toll that was exacted was just as debilitating: my self-esteem and self-confidence were eroded.
I had good coping skills. I refrained from drinking liquids, or I held my urine until I got home. I excelled at locating unoccupied or single-stall public bathrooms. Eventually, I learned to catheterize myself by inserting a tube(catheter)into my urethra that automatically releases the flow of urine. Traveling, as you mentioned, became a nightmare. But as my condition worsened over the years and my coping strategies began to expire, I avoided using public restrooms almost altogether and finally reached a point where I was afraid to leave the security of my own private bathroom for more than a few hours at a time.
Initially, my anxious parents took me to a urologist for tests. No physical cause was ever found, and the doctor told my mother the problem would just go away “once I got married”. Over the years I sought help from physicians and mental health specialists. I experimented with alternative techniques, such as hypnosis, biofeedback, and more. No one seemed to know what to do or how to help me.
Mostly, I felt so embarrassed and, above all, so alone and helpless. All I wanted was to pee normally like everyone else.
In 1997, I discovered an Internet Discussion Board that put me in touch with other sufferers, mostly men. As it turns out, each of us felt we were the only ones in the world who had this condition. I communicated and commiserated with them on a regular basis. There I found a tremendous amount of support and understanding. With their encouragement, I enrolled in two recovery workshops that focused on Cognitive Behavioral Therapy, a very effective technique for those with performance-related anxiety or phobic issues. I practiced many of the behavioral exercises that I learned over and over again, exposing myself to situations I never thought possible. I also learned to change my thinking about the people I might encounter in a bathroom.
As a result, I slowly recovered. I came out of the “water closet”! My life has changed in many positive and remarkable ways. By feeling entitled to stay in a bathroom stall for as long as I like, I felt empowered – that I counted, that I was just as important as the next person. I took new risks: I got married for the first time! I became a much stronger person. I increased my resolve to help others, especially women, recover from shy bladder. I became active in the International Paruresis Association, respond to queries from female paruretics across the globe, and co-facilitated two all-women’s recovery workshops. Recently, I wrote and published a book, “Bathrooms Make Me Nervous”, which aims to help others, especially women, come out of the water closet by sharing my own personal journey (www.bathroomsmakemenervous.com)
So the good news is that you have now discovered a group of people who are here to support you, and you know you are no longer alone. You have also told a lot of people about your condition, something that many paruretics have a hard time doing. Many are so ashamed and embarrassed they won't even talk to their doctors, many of whom are ignorant about the condition in the first place.
The bad news is that there isn't any easy "cure" or pill you can swallow. You can learn to self-catheterize, which is very helpful and can get you out of difficult circumstances. However, to truly overcome paruresis, you need to commit to a regular treatment program.
I strongly encourage you to do everything you can to get to the next workshop where you will learn many of the graduated exposure exercises that will allow you to begin approaching - rather than avoiding - bathrooms ONE STEP AT A TIME. For me, that was the beginning of recovery that ultimately changed the course of my life.
Good luck, and let us hear from you.
Carol Olmert
Re: First time user - reply from a recovered female paruretic
Hallo Sally, I am so glad you have discovered the website, at least you will not feel so alone now.We have all been there and got furious with ourselves because this problem is just so annoying. There is nothing worse that sitting in a toilet unable to squeeze out a drop when all around you others are peeing without giving it a thought! I have had the problem for about 38 years, since I was 45. It is not so bad now, as with help from this board and meeting others I have relaxed to some extent but there are still times when I get caught out, and, like you, there are times when I can't go in my own home if others are around.How stupid is it that I often can't go if my youngest grandaughters are there , aged 2 and 6, probably because I think they will rattle the door handle and ask where I am? Andrew and others in the organisation have been such a support to me and I bless the day that Andrew and Baz first appeared on a Richard and Judy show and I realised I was not alone. I hope you will get the help that you need and that one day you will be able to report a vast improvement. All the best, Margaret.
I'm glad you happened to be watching the "Richard and Judy" show at just the right moment! For many paruretic sufferers, just knowing that "you're not alone" does wonders. Acceptance of one's condition is an important facet of recovery.
When you brought up your young grandchildren, I was reminded how mine, when they were about the same ages as yours, invited me to join them in a stall. Mind you, this was at a point in my life where I was nearly recovered. So, even though they turned their backs to me, they started to count 1-2-3 etc. and that really did me in. Only this time I was able to laugh about the absurdity of the situation. Interestingly, some women have written to me to report that they can easily go in the presence of their younger kids or grandkids because they don't feel judged by them in any way. Go figure.
Carol
Re: First time user!
Posted by Bea on 23/5/2009, 9:02 pm, in reply to "First time user!"
Hi Sally.
I'm sorry to hear of your problems! I hope you will take the advice others have given and talk to your GP. Don't worry if your GP has never heard of the problem - mine hadn't which wasn't comforting! But he referred me to a urologist who was very familiar with the condition. The thought of using catheters is daunting but it is much better for your health - retention for so long can cause more problems or so I've been told! After years and years (since about age 4/5) of problems 'going' I only went to the GP in the last few years. He said to go to A&E if in retention while i was on waiting list to see urologist. I went to the hospital after being in retention for a crazy amount of time and was catheterized there - they treated it as emergency and for quite a while after that I could not go at all without the aid of a catheter. Now things are better - due to less stress in my life - but also even though the catheters are not perfect it makes it easier to go just having the knowledge that they are there when i need them. I even flew to Japan recently without too much trouble! I am in a relationship now and my boyfriend has helped me by standing by the door or even in the bathroom while peeing so I am less anxious of people being close by! The more you are open about it I think the easier it gets. Wishing you well
So sorry to hear of your problem, but you are among friends here. I'm 62 and have had paruresis since I was about 20. I'm not as severely affected as you,I can usually go in public toilets if there are several stalls and/or no-one I know in there. But it has still had a big effect on my life, especially in relation to holidays and even days out.
There's no miracle cure (wish there was!) but as others have already said there are things you can do to help. At least you have told your friends, which is great. I only told anyone (except hypnotherapists)for the first time last year!
Do go on the UKPT workshops if you possibly can. I was really daunted about sitting in a room with (mostly) men and talking about this problem, but I relaxed as soon as the workshop started, the leaders are really supportive, and its just so good to be able to chat with a nice, normal group of people who all share the same problem - it doesn't seem to matter whether male or female. I did make some progress, and have a more positive attitude now.
My GP's surgery were against self-catheterisation, but referred me to the mental health nurse first, and then (reluctantly) to the urology department at the hospital. Once I got there it was completely different, they were very familiar with paruresis and supportive with the catheters. I can't pretend to be very relaxed about using them, but am persevering as it's just good to have them to fall back on for travelling or any other time when desperate!
I hope you make progress, keep in touch and let us know how you get on. Good luck. Jane.
Re: First time user!
Posted by alex on 26/5/2009, 4:44 am, in reply to "First time user!"
Hi Sally, I acted a consultant to channel 4 on the embarrassing illness programme about paruresis. I surmised from your post that you would have an extreme form of this debilitating condition. That’s the bad news The good news is that things can change and this must become the start of your new thinking about yourself and your life. It’s not what happens to you that is important, it’s what you do with what happens to you that counts You have made the first step in taking control of your life and posted here and in this way you have already made a change in your life. Then the willingness to seek help is the next step There are many things you can do even on your own, like get Carols book and also McCulloch’s “Free to Pee” Also get Baz Chalabis’s book (full details from the parcopresis web site) a great book with frank personal stories and full of humour. (If I remember correctly when Andrew and Baz and I appeared on the R&J show it was the first time Baz had ‘come out’ and spoken about his problems; now he has written his book) From these sources try to understand that there are two events. One is the shutdown that seems to be neurologically driven, but we still don’t know how this happens. (A recent paper in the literature confirms this) So its any bodies guess at present why this happens. The second is the several aspects of this condition related to the secondary processes that are psychological driven These can be changed essentially by changing the perceptions of what is happening and refusing to become a victim and getting into negative cycles of thinking. I see you and your friends can laugh about this. That tells me you are not afraid to share your fears and also that you are still able to laugh (Laughter is a very important part of many therapeutic processes on my opinion.) So you are already a long way on the road to getting control of this compared to some people
I treated the guy who featured on the TV show and in a very short space of time over two days he was able to undo the negativity of years. We laughed quite a bit. On my advice he then went to a workshop to continue the processes. (His post about his story may be still on the board somewhere)
So take heart Sally things can change You will get, as you have seen, lots of encouragement from this web site. Keep posting, try to get to a workshop and mostly keep valuing yourself Alex
Just like to say thank you to all those who have replied to my post - its very reassuring to here 'success' stories and be offered support from fellow sufferers. My friends are fantastic and very supportive, and I don't have any trouble telling people - I find that less embarrassing than taking a long time and feeling like I have to explain afterwards. I have made an appointment at my docs now for next week, so I'll post the results. Thanks again, it really is a relief, (literally!) to speak to people who really understand. From Sally
but many docs dont know or understdan about paruresis copy down information from this web site regarding paruesis and either take it with you or invite him/her to read it before your appointment.
anti anxiety drugs don't seem to have an effect for many people.
what would help is a CBT session with a psychologist in your area but you may have to wait a while, and even then he/she might not know too much about paruresis.
if really need be I can help point to papers in the literture for the doc to read; available through Medline or other medical search engines
Like Alex has said, written information is important, as if people seem not to believe you ,it can be produced. I always carry it when I go on holiday. Next week I am going on a cruise and I shall take it, as I always have to ask to stay in my cabin on the last day until a car picks us up. We are supposed to leave cabins by 8am. and as you can imagine, with 550 or so passengers there is mayhem at the public loos.Saga is very good and no one has ever queried the truth of what I say, but I still feel better knowing I can produce written information if necessary. Take all the help you can get and, rest assured, we shall all be keeping our fingers crossed that you improve. Best wishes, Margaret
Re: First time user!
Posted by Pete L on 29/5/2009, 3:26 pm, in reply to "First time user!"
Hi
Just wanted to reiterate what so many have already said.
Firstly, you now know that you not alone with this. I am a similar age to you (35) and have suffered with this for as long as I can remember. It controls your life, makes you feel inadequate and prevents you from taking part in so many things. However, having found this site, my mind set is wholey different to what it use to be...........long may it last.
With respect to the workshops, I am booked in on the London beginners workshop following my new found bravery, along with encouragement from the kind people on this site. Let us not forget the book by Stephen Soiffer, which has given much more than I could have hoped for. I am really looking forward to the workshop, it will be great to meet some of those whom have given so many kind words. Maybe I'll see you there!
Take care Sally
Pete
Re: First time user!
Posted by Judy on 30/5/2009, 11:07 am, in reply to "First time user!"
So glad you found out you're not alone - I can well remember the time I heard about it on a radio programme and was crying with relief to hear there were others in the same boat. I am 54 and feel there was a slight issue there from childhood but it became dramatically worse when my life changed suddenly, and I entered a new relationship. I know what you mean about planning your life round it. Somewhere new the loos are the first thing to check out - if only they all were soundproof with well fitting doors! Anyway, there is hope - I've got loads better since going on a ukpt workshop - meeting others really helped. Also for me checking through or writing texts on my phone in a public loo really helps - it just distracts me enough to shut off from what others are thinking about me.It's great you can tell your friends and they are supportive - I've only been able to tell my partner, not even my adult children. I have been a full time mum for years and think I never had the confidence to work outside the home because of worries about using the loo. Very best wishes for your progress - remember there's lotsof us out there. Be patient with yourself - you will get better.
I've just discovered this site and I'm really pleased that clearly there's enough support from this forum (and other websites) to help us get over this. This crashing realisation resulted from a situation that happened last night in the pub toilets when someone jokily (?) referred to someone else as having 'a shy bladder' so I decided to google that phrase today and discovered how common it is.
I'm 34 as well, and my first concious experience of paruresis (as I can now confidently refer to it as, which is a positive step in itself) was when I was 13. Like one of the other posters here, for me the issue improves and worsens generally in line with my stress/confidence levels. I've been able to go for a wee during half-time at twickenham surrounded by thousands of people during the rugby but other times (often when there's just one or two people) in a pub toilets I lock up - and that's bad when you've had a couple of pints!
Recently it has come to the point that I have to think strategically about my toilet visits at work (so evidentally not as bad as some here, but serious enough for me) and I finally decided the situation needed rectifying. I'll read the posts here, sort out a CBT session (my partner has used CBT for something else with great success) and see what happens. I'm really looking forward to being able to wee at ease!
In fairness to Sally, I've started a new thread to say 'Hi' to you...
Re: First time user!
Posted by Jackie on 15/6/2009, 10:37 pm, in reply to "First time user!"
Hi Sally i am also a first timer user .I am 47 years old and have had this problem since i was about 19. I can't remember how or when it started excactly , i only know that it controls everthing i do and everywhere i go. I never go to the pictures i hardly ever go out for the day just for a few hours at a time because trying to find a public toilet that nobody is going to be in or walk in when i am in there is nearly impossible. I have sat and waited so many times for other people to go out and then because its on my mind that someone may come in at any minuet i can never go.I hate that i always end up travelling home desperate for the loo.I just want to be normal and have the freedom to go out and never worry about how long i can last before i need to go.If i know i have to go to town i will get up about 6.30am and wait until about 1pm before i go and i won't have a drink all day until i come home.Today after suffering for 29 years i have finally gone to the doctors and i am waiting to see a counsellor for cognitive behavioural therapy . I'm not sure how much it will help but i have finally had enough and i am willing to try anything.Even if i go to my sister's house i can't go and she knows about it some times at home if someone walks past the bathroom door or even if i hear them moving about down stairs i can't go so i know how you feel.My doctor did say it wouln't be something that could be fixed quickly after all i have had it for 29 years , i hope you get some help and at least now me and you both know that we are not the only ones suffering . Look forward to hearing from you and anyone else who may want to get in touch. Jackie
Welcome to the board, and well done for letting it all out! I remember the first time I wrote on this site, it felt such a relief.
It's a very positive step forward to visit your gp for help, and CBT will help you immensely. I've had CBT before, for a different matter, and would not have believed the difference it made to my life. I touched slightly in to not being able to pee but had not realised, at that time, that I was not alone so just plodded on......without peeing!
Read as many posts as you can, to make you realise that you are perfectly normal, and take heed to the advice that so many put on this site.
Hi Pete thanks for the support i am determined to try and live a fuller life , i am sick of staying in all the time . Iv'e wasted to many years things are going to change.
That's the spirit Jackie! If possible, try to get on a workshop, I'm booked in on the London workshop next week. You can email Andrew, if you haven't already, for information and dates. In the meantime, I can highly recommend the book by Stephen Soiffer 'Shy Bladder Syndrome'.
Welcome in and thanks for sharing. If you would like to, then start a new topic where you can have everyones input and go into more detail about seeing the GP etc.
As Pete said, a workshop will be a huge step forward. Look at the topic at the top of the discussion board main page.
Hi Jackie, I have bought the book 'Shy Bladder Syndrome' from Amazon and its proving to be a good read. Could help you alongside your CBT. I am teh same as you - my sisters and friends all know about it - it takes the pressure off but still doesn't make it any easier to go. One of them even goes out if I need to go!! Now thats good friendship for you!! Anyway, if you want to email me for support or for a progress update or just to chat about it, feel free, Take care and good luck, Sally
