Posted by Michelle King I have just come across this website and just wanted to post to make up the female numbers really. It's strange, I never thought of paruresis as something men would suffer from! Merely the fact that they have to spend most of their lives weeing in front of other men made me think it would just be a natural thing for them - but apparently I was wrong and it's us women who are in the minority! My first memory of my condition was being on a school trip. It was quite a long coach journey (for an 8 year old anyway) and we were told we HAD to use the toilet before we left OR ELSE!!! At least that's how it felt. And as much as I needed to go it just wouldnt happen. Needless to say I then experienced the most uncomfortable coach journey of my life. I am now 25 and my condition still affects me. Maybe not as badly as some on here but it is difficult to live with. If I go on a night out my ability to wee usually depends on how busy the loos are. If there are other people in the room I cannot go. If the room is empty but there is a good chance of people walking in, I still cannot go. I worry that people can hear me going - I worry that people can hear me 'not going' (what the hell is she doing in there?). I can normally go eventually after about three/four trips to the toilets (carefully spaced so people in the pub do not think I have something wrong with me!) I think it is primarily a pressure thing for me. If I feel like I have as much time as I need then it is easier. The worst thing anyone could say to me when I announce that I am popping to the loo is 'hurry up'. I detest that. I find that if I haven't had a wee within about 3 minutes of sitting down then it's not going to happen. No matter how much I tell myself how stupid I am being, or try to distract myself by writing a text on my phone, or imagining that I am on my very own toilet at home ... it's just useless. Anyway, I am rambling and also running out of time. I would love to hear from any ladies out there suffering like me (by email or on the forum) - whether it be to share tips or just rant about how bloddy annoying it is! I would especially like to hear from women who have actually gone to their GP and asked for help (do GPs actually know that this condition exists??) Take care Michelle
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- Re: Calling all females!
Posted by Michelle on 21/11/2006, 5:43 pm, in reply to "Calling all females!"
Hi Michelle My name is also Michelle your story above is very much the same as mine I have exactly the same problems I found this website about two years ago and have attended a workshop and since then it has improved considerably it now doesn't rule my life like it used to I don't seem to spend as much time worrying about going to the toilet I still have bad days but I seem to be able to cope with them and it doesnt get me down as much.
For years years I thought I was the only person in the world that couldn't wee so I felt like a total freak but just knowing that it was actully a common problem made me feel a lot better and if I am sat on the toilet and I can't go I think of all the people on my workshop and what fun we had and it normally makes me smile and then I can go.
I haven't told my Docs about my Paruresis but I have now told my husband and close friends and that has helped cause they now don't all come to the toilet with me on nights out like they used to I used to hate it when I said Im just popping to the loo it would always end up with at least two of them coming with me and then waiting for me and saying what are you doing in there!
I hope now you have found this site things will start to improve for you.
Take Care Michelle x
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Posted by Mary on 21/11/2006, 10:50 pm, in reply to "Re: Calling all females!"
Hi Michelle I'm a similar age to you and I totally empathise with you as I feel exactly the same way & have done since I was about twelve years old. My friends don't suffer from this problem & its just about the worse feeling when they either say "be quick" or "I'll come with you" - the latter being a typical female response! This year I decided to do something about it & I have attended two workshops which were excellent & I have improved so much over the last six months.
As a result of the workshops I learnt that I really am a normal person & that gave me the confidence to see my GP about it without fear of rejection or being made to feel apologetic for how I am. My GP had heard of the condition but had never met anyone with AP but was totally understanding & more curious than anything else. He referred me to a continence nurse at my local hospital straightaway and last week I went to see her. She already knew about AP & I wasn't her first patient to have this problem - male or female. She was really understanding & all that she was concerned about was ensuring that I get to lead as normal a life as possible & to do this she taught me how to self-catheterise so that I no longer have to worry about will I or won't I manage to "go" in the toilets.
I can honestly say that this year has seen a massive breakthrough for me in respect of my AP & if you can bring yourself to confide in a friend & get them to help you or attend a workshop and, ultimately, see your GP, I really think it can only help you improve.
Anyway, I hope that this is useful. My problem isn't fully resolved & I still suffer from the anxieties that you do but if you're considering going to your GP then I'd say go for it & don't worry about how they respond - it really is becoming a more recognised condition.
Good luck!
Mary
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Posted by Michelle King on 22/11/2006, 10:06 am, in reply to "Re: Calling all females!"
Thanks for the reponses. Mary, I wonder if you could possibly give me more info on the self-catheterisation? Does it hurt? Is it difficult to master? How many do you get on one prescription? I think I would definitely consider this as a last resort - i.e. if I am on a night out and cannot go I will usually end up going home early but this would mean I could just enjoy myself!
I wonder if merely knowing that you have that option, is enough to take the pressure off and make it easier? Do you know what I mean? If you tell yourself 'it doesn't matter whether I go because I can always do this' that might relieve the pressure which we tend to put on ourselves??
I don't know about you but the more attempts I make the harder it gets because I think people (strangers in the pub/wherever) will notice that I keep going to the toilet. I also become aware that I am spending most of my night in the toilet and therefore not doing what I am there to do, i.e. having fun!
My partner and family are well aware of my trouble. It is almost (but not in a nasty way) an ongoing joke! On my return from the loo I am very oftem greeted with 'did you go?'. Oh and how lovely it is to be able to say yes! (although rare!)
I have to say, my favourite place (except of course home, if there had to be one) for going to wee is service stations. There tends to be about 50 cubicles and they are set out in a way that I can go right to the furthest one so I have no-one near me at all. Most people going in are desperate for the loo and tend to go for as close a one as possible so that is great for me. Also, It means I am away from the noise of people using the basins.
Any advice/feedback/other experiences most appreciated
Take care
Michelle
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Posted by Lusy on 22/11/2006, 12:48 pm, in reply to "Re: Calling all females!"
Hi Michelle! I just love the fact that your family and friends know and they make a joke of it as that's exactly how I've coped with it for years.
I'm 36 now and I'd always thought it was just me as I'm known amongst family and griends as being a bit, well, 'odd' so I thought it was just 'me' *lol*
When I found this site a few years ago (I'll have to ask Andrew how long I've been here) I was surprised, like you, to discover than men are sufferers and SO pleased to discover that I wasn't the only human, let alone the only woman to suffer!
- Re: Calling all females!
Posted by Michelle King on 22/11/2006, 2:47 pm, in reply to "Re: Calling all females!"
Thanks Lusy. I suppose it is probably not very helpful when family etc think it is funny but I really can't understand how people can get through life without telling the people closest to them! If my partner didn't know about my problem I am sure he would think I was up to no good disappearing to the toilet for up to 20 mins at a time when we are out! I can usually wee no problem with my partner present - as long as there is no-one else around. For example, if we were at a house party and both needed the toilet we may go into the toilet together. His presence is not the problem - it's the queue of people outside the door! I used to describe my condition to friends and family as the 'fear of other people hearing me go' but I am so over that part of it now. I really could not care less who hears me (fat chance of anyone hearing me anyway!) but perhaps that was the starting block of it all? Don't you just so envy the people who come rushing into the toilets, sit down and then seem to give a huge sigh of relief within miliseconds? I so want to be one of those people. They are completely oblivious to what it going on around them.
I tell you what I have found helpful in the past though is going into public toilets with one of my children and have them in the cubicle with me. I find talking to them really takes my mind off of what I am trying to do. Obviously this is not the solution for everyone but some people may want to give it a go.
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Posted by Lusy on 22/11/2006, 6:35 pm, in reply to "Re: Calling all females!"
Hi Michelle, oh I don;t know...I found my family making jokes to be helpful...they even joke that they'll pop upstairs to stand outside the loo when I announce I'm going to pee, the big meanies!! (They don't, though)
I don't have children so I couldn't do what you do there...and I do have a problem when I know people are nearby. What confuses me is that I don;t have a huge problem in public loos unless someone I *know* is waiting for me! - Re: Calling all females!
Posted by Andrew on 22/11/2006, 4:57 pm, in reply to "Re: Calling all females!"
Hi Michelle One woman has posted in the recenty past about self-catheterisation. The container is lipstick sized, and looks like one. I'm pretty sure she said it was straightforward to use. Dont be put off by any male comments on this topic; female urethras are about 2 inches long and straight, whereas men's are about 9 inches and have bends in them. Also women are less squeamish about such things for obvious reasons.
Re the effect of having one available taking the pressure off; certainly men have said this is the case; except for severe cases who are too anxious for this effect to happen.
If the noise of people around is off-putting, have you thought of using an iPod with your favourite "water" music :-)
As for your friedns asking you whether you managed, is this not putting pressure on you, and making too much of an event of it; would you rather not that they just ignored the topic?
cheers
Andrew
- Re: Calling all females!
Posted by Michelle on 22/11/2006, 8:50 pm, in reply to "Re: Calling all females!"
Hi Michelle I also find that if my children come with me to the toilet I can go no matter what the circumstances I think I am so busy talking to them and stopping them from touching things I just go but they are now 5 and 7 so the eldest wants to go by herself but when I am travelling on the plane I take my youngest with me cause I think if people see us both go in they expect us to be a while.
Michelle x
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Posted by Andrew on 23/11/2006, 11:37 am, in reply to "Re: Calling all females!"
Hi Michelle Mary, whom I have met twice on the workshops, has offered to correspond with you by email to tell you about catheterisation. She has asked me to give you her email address. If you email me at the address at the top of the page, I can do that.
cheers
Andrew
(Chairman) - Re: Calling all females!
Posted by Michelle King on 23/11/2006, 12:29 pm, in reply to "Re: Calling all females!"
Thanks Andrew, I have emailed you @ support. With regards to the ipod, I think this sounds like an interesting idea. Actually this morning I was thinking about my condition and felt the urge to wee come on. I started trying to evaluate how strong that urge was so that I could try putting into practice the idea of only going at a certain level of urgency. What I found, in fact, that personally for me, if I am in a situation where I feel I will have problems passing urine, the actual feeling of needing to go is different to when I am in my home environment. I am not sure this is a common feeling or just me over-analyzing but if I am out, I get more of a 'bursting bladder' uncomfortable feeling than an 'about to wet myself feeling'.
Does this make sense. I suppose it comes from the abdomen rather than the urethra area. When I think about, it would probably be quite nice to have the 'about to wet myself' feeling when I am out as when it gets to this point it is almost impossible not to go (at home anyway). Could it be that the urine is not even making it out of the bladder when we are suffering this condition?
Also, after thinking about this for a long time this morning, I finally made it up the stairs to the loo and found myself unable to go which is very strange when at home (although not unknown for me.) I remembered reading something about when you are talking to someone, it switches the focus to the other side of the brain. I had no-one to talk to so I started singing and lo and behold I managed go without even properly realising that I had starting to wee.
I figure, even in public toilets I could probably get away with whispering a song so will give this a go next time and let you all know what happens!
Many thanks for all responses
Michelle
- Re: Calling all females!
Posted by Andrew on 23/11/2006, 7:45 pm, in reply to "Re: Calling all females!"
Hi Michelle What you are describing as two different sensations is correct. Hopefully you've read everything on our website (?) so have read the explanation about the physical side of paruresis "Why don't I pee when I want to" in the FAQ under First Visit.
When in a safe place, the internal sphincter is open and only the external sphincter, which is under your control, prevents you wetting yourself; exactly the feeling you get.
When in an unsafe palce, the internal sphincter is closed by the autonomic nervous system; hence your external sphincter is not having to hold back the flow, and so you do not get the "wetting yourself" feeling. As pressure builds up, so the "bursting bladder" feeling develops. This could also be exacerbated by muscular tension in the lower abdominal wall, putting pressure on the bladder.
As for the two halves of the brain, spot on. An empty mind allows the right side (emotional) to dominate. Doing something logical like talking, counting, etc engages the left hemisphere, and reduces the impact of the emotional side.
cheers
Andrew
- Re: Calling all females!
Posted by Lusy on 23/11/2006, 8:00 pm, in reply to "Re: Calling all females!"
I had an interesting experience (linked to your post Mich)the other day. The b/f and I went to see James Bond and although I went for a pee at home before I left and again before the film started, I still felt desparate to go all the way through the film (but didn't go). Almost as soon as the film ended, the feeling stopped. I assume that this was because I knew I could go without an entire cinima of people knowing? - Re: Calling all females!
Posted by Judy on 23/11/2006, 10:12 pm, in reply to "Re: Calling all females!"
Welcome Michelle, your difficulties sound very familiar to me. Isn't it a relief to know that there are so many of us (and I'm sure FAR more out there who haven't discovered UKPT yet); that knowledge in itself really helped me. The workshop was a great help, mainly in being able to be open about it with others who understood. Since then I've made steady progress, the level of anxiety has definitely lessened and I've had several successes in difficult situations (like a camp site with flimsy partitions that end 8 inches from the floor) often with the aid of writing texts on my phone) though still there are times when I can't cope, but I work hard at not hanging on to them and focussing on my improvement. Just thinking of all the others struggling with the problem really helps. So very best wishes to you. Finding UKPT will be the start of a new way of looking at the problem, or perhaps more importantly at yourself. Most people have some phobias and anxieties, it's just that ours is around a subject that's embarrassing, so we find it hard to talk about. - Re: Calling all females!
Posted by Margaret on 24/11/2006, 11:10 am, in reply to "Re: Calling all females!"
Hi Michelle,
Welcome to the board. there is not a lot I can say to add to what has already been said, as when we all start talking about it, our experiences are much the same.It's interesting though that what helps one or two of you, having children in a cubicle with you, would be impossible for me. I am at the stage of being a grandma now, (five so far, another arriving in April!) and if I am in a public toilet, I am really put off if I hear children with their mothers in other toiletsWeird, isn't it?
All the best,
Margaret - Re: Calling all females!
Posted by kate williams
on 5/4/2007, 9:27 am, in reply to "Re: Calling all females!"Hi Michelle
I also attended a workshop a few years ago and although the paruresis has not vanished is it a lot better. I am not really sure why we feel 'embarrassed' about the problem but I know it makes it worse. There are other phobias that seem more sociably acceptable. The trouble is that the hidden part of paruresis also exasperates the problem - its infuriating!! I can go to the loo in much the same circumstances as you - no one in the toilet, no perceived person outside!! or strangely enough I can go absolutely anywhere if my daughter who is 4 comes in with me. Funnily enough I was watching I think Jonathon Ross and he had an interview with Gareth Gates whos stammer has completely gone, he went on some recovery programme. I cannot remember the name but I will try to find out and post. It might be worth investigating.
By the way to everyone a BIG HELLO! sorry for the silence xxxx - Re: Calling all females!
Posted by Janette on 24/11/2006, 4:13 pm, in reply to "Calling all females!"
Hi Michelle, I am 49 and have suffered from this problem for a very long time now. It is reasuring to speak to other ladies who have the same condition. I am hoping to deal with this before I turn 50, that is my goal! My mother used to run the cold taps in an effort to help me, sometimes this worked. I can usually manage to go when my daughter is with me but she is now 19 so that is not an option now. I find it very frustrating when there are always long queues for the ladies (never for the gents are there) and just have to walk away. My friends are very understanding but I just want to be 'normal' like them. Good to talk and share experiences. Janette.
- Re: Calling all females!
Posted by Michelle King
on 25/11/2006, 1:44 pm, in reply to "Re: Calling all females!"Yes running the tap is a classic! This used to work for me but doesn't anymore for me. - Re: Calling all females!
Posted by Kel on 25/11/2006, 2:36 pm, in reply to "Re: Calling all females!"
Hi Michelle Nice to see that another woman has found this wonderful site - and believe me it was my saviour!!
I've been suffering with AP since I was very little - I'm now 23 (my mum told me about all of the problems I had.) I was very lucky when it seemed to either go away or I just wasn't that aware of it for a few years and then about 5-6 years ago when me and my boyfriend moved into our own flat it seemed to come back with a vengence (at this point I still didn't know what it was and thought I was just being silly). Then it started getting REALLY bad and I was getting severly depressed by it and near enough stopped going out alltogether. Then I went to see my doctor- as I thought there may be a problem with me and she told me I had shy bladder and went onto saying that eventually I would go if I tried hard enough. So I went away and tried this but it got worse and after having an AWFUL day out I started to google it and came up with Stephen Soifer's book so I brought that and read that there are support groups out there so once again I googled and came up with this site. I almost cried when I saw soooooo many people also suffered with the same thing. After a while I plucked up the courage to go to the beginners workshop and it CHANGED my life it was soooo good to meet so many people who had the same problem and to discuss freely the problems that I had been avoiding for years!! After that I attended an improvers workshop and got more helpful tips and advice. I invested in an MP3 player (like Andrew suggested to you) and it is now my new buddy I take it with me everywhere and places that I knew I could NEVER have a success I now have a 80% success rate - which is 80% more chance than I had before. I would strongly recommend it to anyone - the only thing I have to be careful with now is making sure I don't sing too loud to the tracks that I love - fine if you have a good singing voice but not for me
I also got prescribed self caths at my urolgists this week after a slightly long battle (they do have to check that there arn't any physical things wrong with you) and the nurses that helped me were lovely. I don't find it does hurt that much a bit wierd (worth it though) but they are really compact and fit into the smallest of handbags and no one would suspect a thing! I havn't had to use one yet but IF I do get into a situation which is impossible I know that I have a way out of it.I hope some of this has helped you and if you feel you would like to chat more please feel free to ask Andrew for my email address.
Take care
LOL
Kelxx
- Re: Calling all females!
Posted by Alison on 28/11/2006, 4:24 pm, in reply to "Calling all females!"
Welcome to the board Michelle (and all the other new posters who have come on board since I last accessed it.) As you will have realised by now there are lots of us females who suffer from this condition, and to whom the problems you've described will sound very familiar.
Just thought you might be interested to know I finally plucked up courage to see my GP about it about 10 years ago, before this board started and before there was any publicity at all. He hadn't heard of the condition, of course, but was very sympathetic and helpful and referred me to a psycho-therapist who also had never heard of it but was sympathetic and did help me. Nowadays it is much more likely that your GP will have heard about the condition, or at least will be able to find out about it, and you can provide him with some information from this board. I think most GPs would be sympathetic and helpful, and if they weren't they would be very poor GPs.
Good luck - Re: Calling all females!
Posted by Michelle on 28/11/2006, 7:28 pm, in reply to "Calling all females!"
Hi Michelle, My name is also Michelle & i have had this problem for many years im now 40 & have 3 childern if you get any info on self cath i would be very gratefull if you would share this with me or if anyone else on the site does i would love to hear from them at least it would mean i could take the childern out with a back up option if i carnt use the loo instead of having to come home to go all the time.I havent been to my Gp about this because im scared she wouldnt of heard of it. Im glad you have found this site it is nice to know you are not a lone with this. Take care Michelle - Re: Calling all females!
Posted by Lindsay on 26/2/2007, 4:40 pm, in reply to "Calling all females!"
Hi Michelle, i am now 44 and have suffered with this problem since i was 16. just by chance i found this web site and am glad i am not the only mad person.I find my worst time is after a journey when i have to hold on, or if i have to wait in a queue. What a relief(!!) to know others are out there to talk to .