History of the project
The project came about after Anxiety UK was approached by the Lewis Family Charitable Trust (LFCT). LFCT proposed that a campaign was required to explore the various aspects of toilet related anxiety, how it affects people and to raise awareness of the help that is available to sufferers of this condition. As Anxiety UK takes many calls every year relating to various aspects of toilet related anxiety, we felt that we the Charity was well placed to lead on the project.
Development of the project
By identifying existing Anxiety UK members who were affected by toilet related anxiety willing to become involved (anonymously or otherwise) in helping us with the project, we were able to discuss the various ways that toilet related anxiety can be experienced. After an analysis of the case studies that we received, we were able to define the main conditions which appear to relate to difficulties in using the toilet. These were:
- Social phobia – commonly involving worries that people are aware of you using the toilet, people noticing you using the toilet or that people may hear you using the toilet
- OCD (Obsessive Compulsive Disorder) – involves factors such as worrying that the toilet is contaminated or being unable to use facilities that are deemed “unclean”
- Agoraphobia – worrying about leaving the house unless there is a “safe” toilet that can be used combined with fears around soiling or urinating ones self if leaving a deemed “safe” locality
- Parcopresis – fear of defecating in public places
- Paruresis – fear of urinating in public places
- Panic attacks/Panic disorder – fear of being unable to use a toilet in a public place.
- Specific phobia – specific fear of a toilet or toilet related situation
Most of the individuals discussing these experiences classified the anxiety as toilet phobia. Therefore the term “Toilet Phobia” became the umbrella term adopted to describe specific fears concerned with the toilet.
Who can be affected by toilet phobia?
Toilet phobia can affect anyone at any time and ranges from a mild disruption through to a significant disruption of daily life.
Causes of toilet phobia
Toilet phobia can be caused by a variety of factors including anxiety, fear, specific experience or trauma and learnt behaviour from someone close. Causes of Toilet Phobia can often be a combination of these factors or none of the above.
Treatment of toilet phobia
It is generally accepted that CBT (Cognitive Behaviour Therapy) is the recommended treatment for toilet phobia due to the fact that it is an evidence based therapy. However, many individuals cited clinical hypnotherapy, counselling, guided self help and other lifestyle changes as being helpful in providing benefit to managing the condition.
Toilet Phobia Booklet
How we can help
Anxiety UK is a user-led charity with more than forty years experience in supporting those living with anxiety. By becoming a member of Anxiety UK, you will have access to a range of benefits, including:
- Access to reduced cost therapy within two weeks of submitting your therapy request
- Free access to Headspace, worth £95
- Access to our infoline, email, text and live chat services (available Monday-Friday, 9:30 am – 5:30 pm) staffed by volunteers with personal experience of anxiety
- Receipt of four issues of Anxious Times, our quarterly members” magazine
- Access to the members only section of our website, featuring regular support surgeries facilitated by anxiety experts
- Access to specialist helplines, including the psychiatric pharmacy helpline
And many, many other benefits that will help you manage your anxiety long term. To become a member of Anxiety UK click here or ring 08444 775 774 today.
Do you suffer from toilet phobia and want to share your experience with other people? Post your personal experience in the comments box below where it will be sent to our moderator for approval. Many people find this part of the site very useful when trying to understand their disorder so your comments really do make a difference. Please note, all comments submitted to the Anxiety UK website may be used by Anxiety UK for (but not limited to) publicity and promotional material.
If you would like to make contact with others who are living with similar experiences, you can do so via the Anxiety UK pen pals scheme which is a service available to all Anxiety UK members (in both electronic and hard copy format).
“I was delighted to see the news article on the BBC about toilet phobia. I spent many years choosing my job based around the toilets, missed many outings, social opportunities, and was often totally dehydrated.”
“Thanks to CBT things are much more manageable now. I didn’t know about your organisation (wish I had). Keep up the good work.”
My son has had a toilet phobia for the last 6 years. He will be 11 this year and people say the same old thing, “oh he’ll grow out of it”. He has admitted to me that he is so scared to sit on the loo as it makes him sick and then he panics. As a family, the consequence of this has been that we have had to deal with constant soiling. Kids at school call him names and the teachers remove him from lesson when he smells. He has only a few friends and hardly ever goes out. We have tried the NHS, the school nurse and the child psychologist and nothing has worked. We love him so much and just want him to enjoy his childhood and have a normal life. I’m glad I found this site which has enabled me as a mother to share my experience. I wish someone could tell me why I fell like I’ve ‘failed my son’.
I suffered from shy bladder for almost 20 years and am finally over it, which feels great. A combination of self hypnosis and target setting worked for me. I built up gradually starting with the ‘least scary’ scenarios, and with each achievement came more confidence. Use your self hypnosis to remind yourself of and to amplify your successes. Never think about the setbacks. They are temporary. Going to the toilet isn’t something I think about anymore, its just natural now. I can’t believe how I let this problem dominate my life for so long. Good luck sufferers – you can cure yourself.
Thank god I’m not mad. I have suffered in silence for years (over 20) thinking I was the only one in the world going through this. I have never told anyone for fear of ridicule. It started when I was 10 and a friend refused to let me use her loo. I wet myself and still feel sick with the embarrassment to this day. My fear is of being too far away from a loo. It has ruled every part of my life, from shopping to holidays and days out with my family. The thing is when I do get to a loo, my bladder isn’t even full. The panic attacks are crippling but again I suffer them in silence. Knowing I’m not alone is such a relief. I think it’s time to claim my life back.
I am a long-term sufferer of toilet phobia.
I have been suffering with the fear of urinating myself for 8 years now, I am 29, due to be 30 at the end of this year and I am determined to somehow beat this irrational fear by then so I can live my life again. My life evolves around wondering where the toilet is, just in case I have to go and then convincing myself I have urinated myself when I haven’t. I cannot remember the last time I went out in public wearing light coloured trousers due to the fear of embarassment, nor can I remember the last time I didn’t walk in to a meeting room and work or round someone’s house and analyse the colour of the chair I will be sitting on to determine if it is light or dark and thus if I urinated there, would it be noticable when I stood up. I go to the toilet about 8+ times per day and I cannot rememember the last time I urinated more than quarter of a pint in one go as I convince myself my bladder is full when it is not and my mind convinces me that if I don’t go I will urinate myself. Another fear I have is smelling of urine. Not only do I worry about the initial patch of wetness on my trousers but then once it has dried, I fear it will smell and everyone will comment. Basically, I think my toilet phobia is a result of social phobia and I am concerned that if I don’t get it treated it will lead to agrophobia, it is already making me very unhappy, never comfortable in work or social situations and the thought of being in a relationship where I might urinate myself in front of them is preventing me from meeting someone which is making me very lonely. I would really like to meet or hear from fellow toilet phobia sufferers.”
“Hi, I have been reading experiences from people suffering from toilet phobia.
This is just one of the many phobias I have and which I am being treated for, however toilet phobia is the most debilitating of them all as it absolutely rules my life. My problem started seven years ago when after being under constant stress for 13 years looking after my father, I actually lost control of my bowels in the city one night when out with friends. This traumatised me so much and the following week going back into the city I had my first panic attack on the freeway and had to find a toilet as soon as possible. I then started to not want to eat for fear of needing the toilet again. The fear of not making it to the toilet has dominated my life so I can related to a lot of the other people’s experiences here. The toilet phobia has now progressed to me developing agoraphobia and also social phobia. I am on medication and doing Cognitive Behavioural Therapy (CBT) which seemed to be working until I had a set back this past week. I have just downloaded the panic programme from this website which gave me a whole new strategy for dealing with the panic attacks. I tried it today and it actually worked so I will keep on implementing this until hopefully I can finally rid myself of this problem of always needing to know where the toilets are. My heart goes out to everyone who has been suffering with this problem. “
“I have been suffering with anxiety for as long as I can remember, but over the past few years, it has really started to ruin my life.
It started with simple worrying, which triggered agoraphobia, claustrophobia and panic attacks to the point where I start to black out. I also have depression, OC and constant anxiety/tension. Being a 17 year old girl I just want to be able to go out with my friends and do ‘normal things’ but the first thing I think when someone asks me to do something is ‘will there be a toilet?’. I have to go at least three times in the morning otherwise I can’t go out the house and more when I’m worrying. This is so debilitating but I just feel that I need to have control over it. I can barely last a whole day at college and am terrified of having a panic attack, going to the toilet or being sick in front of everyone. I have tried CBT, hypnotherapy, Reiki, counselling, homeopathic treatments, IBS drugs and antidepressants but so far nothing has worked. What should I do? I feel like I have tried absolutely everything in order to get better. I am completely lost and feel so alone.
“I was amazed to read an article on the BBC website with regards to Toilet Phobia. I thought it was just me.
I prefer to use the facilities at home and will often wait “to go” when I get home. I hate using public toilets in restaurants or bars etc. or even on flights. I never realised it was a phobia – I just try and avoid going away from home. I work away on business – and often wait until I reach my hotel room.”
“Please can you highlight the problem that seems to be in every one of our schools and always has been…
Poor toilets and restricted access: Children are often locked out at lunchtimes due to lack of staffing (no legal limit to playground supervision). This means they cannot freely use toilets. They are often told “you should have gone earlier”. I say this sometimes as a parent but I NEVER refuse my children unless we are physically miles away from a loo.
Toilets in our schools are in a bad way (obviously some kids do leave a mess and muck around in toilets, – but only a MINORITY)
LOTS of children I know have wet themselves because the teacher has told them to “wait” when they ask to go – what reason on earth do we have to refuse a 5 year old a trip to the loo? Are they lying?… maybe but… we HAVE to give them the benefit of doubt!
Adults would NOT be treated like this! Why do we treat children worse?
If teachers don’t like them going freely in class and dinner ladies don’t allow free access at lunch, when can children go? If there is a specified time then there will be a long queue.
We can empty our bladders to order but NOT our bowels – don’t teachers appreciate this! When you have to go, you have to go!
School toilets can be smelly, NOT private, broken locks. Kids feel very self-conscious.
Let’s stop this practice in schools and prevent adult phobias, bladder infections and all the rest.
Quote from the site: www.bog-standard.org (from an 8 year old girl): “We are only allowed to go to the toilet at break times. Some children have wet their pants because they were not allowed to go. If we really must go we lose house points”.
Thank you, Edey.
I am a 30 year old woman and have felt like a little child and alone since I developed this condition. I had a baby and developed IBS. I was out with my son when I had to go to the toilet – I didn’t make it and had a bowel motion right there and then in the park. This has resulted in me not wanting to go anywhere and when I do, I have such bad panic attacks and need to know that if I go anywhere that there is a toilet close by. Finding this website has made me realise that I am not alone.
I started having panic attacks about a year ago due to not being around a toilet. In fact, it has started to control my life. I’m only 20 and hardly ever go out as I worry about not being able to get to a toilet in time should I need to. I panic about going on holiday and even the car journey to work. I was at one point taking about 12 imodium a day just to get out of the house. I am now down to about 6 but cannot take any less for fear of needing to go to the toilet and worrying about being out of control. I am however starting to notice the side effect of imodium but I am terrified of not having them on my person – I never go out without having at least 2 packs on me. Seeing this site has made me realise that I’m not alone as I always feel so stupid telling people about my problem. I don’t ever tell people the real issue that I have, instead I just say that I have panic attacks.
“I have a fear of going to the toilet when people are around. It’s not just in public toilets, but in my own house. I’m OK doing ‘number 1’ when people are around, it’s the fear of doing “number 2s” when people are around. It came on when I started having a nervous stomach and IBS symptoms. Constantly having upset stomach made it embarrassing for me to use the toilet when people were around. I also have social phobia, which hasn’t helped with my toilet phobia, because I’m scared of being judged negatively. I can’t remember life before my toilet phobia and when I could use the toilet with people around. My toilet phobia has restricted my life a lot. I can’t go in public toilets, even if I was really desperate. I can’t eat when I go out and I’m scared to go too far away from home incase I urgently need the toilet. I can’t stay at peoples houses and going on holiday is a nightmare. I have to plan a “safe” toilet in advance, and if there isn’t one, I won’t go on holiday. I can’t share a hotel room because it would mean I have to share the toilet. I can’t stay in caravans because the walls are like paper and I can’t stay in tents because I’d have to use public toilets. I have to personally know that no one is going to be around when I go to the toilet, which makes my life awkward. My only “safe” toilet is at home, and even then my family has to sit in the lounge just so I can go upstairs to the toilet. The worst case was when I had upset stomach in the middle of the night and everyone was in bed. I made myself sit up all night holding it in with chronic pain and ended up being sick just because I was too scared to use the toilet when everyone was upstairs. I know how stupid my fear sounds, but I just can’t seem to control it.”
Pardon the pun, but reading these pages on this website has been such a relief. I was coming home from a family day out 25 years ago when I needed the loo, so I jumped off the train and went into the loos at the station. The door jammed, and I couldn’t open it and got into a panic as I heard my next train being announced. Eventually I had to shout for help – I was so ashamed. My family thought it was funny and nicknamed me tiddle-britches and all continued well until 10 years ago when I got stuck in a tunnel while on the tube and my fear was that we would be there for ages and I would need the loo. Now I won’t got anywhere for fear of being stuck – no public transport for me – car journeys are a no go in case we get stuck in a jam. My career has faltered and I’ve lost friends as they got fed up with having to visit me all the time. I recently got married – we had no honeymoon and I constantly worry that my husband will get fed up with no holidays – we can’t even go together to visit his family which is a whole other issue. I’m glad that I’m not on my own though. I’ve had therapy and unfortunately this has been unsuccessful because it centred around agoraphobia and claustrophobia because I was too ashamed to admit the real reason behind my problem.”
“I just came across this website after my mum showed me a letter in the Daily Mail about a woman with TP – what a relief to be reading this website & not feeling like a complete nutcase anymore! I have fear of being too far from a toilet at all times as my bowels tend to make their own mind up about when they want to empty! My major fear is actually not making it to a toilet in time. I have been very close on a few occasions and hope that day never comes. I suppose that’s where my fear hides itself, in the belief that one day I might just not make it. It doesn’t make for an easy life. I am 30 years old now & for the past 5 or 6 years I have been held back by this awful debilitating phobia in so many ways. I rarely go out, other than to work. I have to plan in advance any routes I need to take that aren’t my usual and any journeys of more than 1 hour are controlled by Imodium (which isn’t cheap!). I have just started driving lessons & explained my problem to the instructor. I am not ashamed to tell people of my phobia, but that doesn’t make it any more easier for me. I haven’t been out for a meal in years. Last time I did I ended up in tears at the table with all the other diners staring at me. Oh and getting a boyfriend is out of the question! Any single TP guys out there? Oh how I wish I didn’t have this phobia. I am not generally a nervous kind of person and was always quite adventurous as a teenager. The thought of going hiking or on an exotic holiday now scares the hell out of me. I do not know what particularly triggered this phobia. My mum thinks it’s from when I used to commute in to London (3hrs a day) & the train would be packed full & getting to the toilet (sometimes out of use) was a nightmare. I think it is a mixture of this and when I went out for a meal with my family and my guts just churned & I had to keep excusing myself to go to the ONE toilet. The embarrassment!! I ended up in tears (again) so my dad drove me home. My family are very understanding and I know I really do need to get over this if I am to do anything with my life. I fear it will be like this forever. My doctor prescribed anti-depressants but it made no difference so I stopped taking those. But I have never spoken with him about TP because I didn’t know it had a name until now. Maybe I can go back to him now & make more sense rather than just an incessant ramble about how awful my life is. “
“I am 27 and have suffered for as long as I can remember. I am so scared of the high tank toilets (with chains). This fear has progressed on to also fearing overflow pipes and air vents in toilets. I feel sick, hot and sweaty as if I will pass out. My parents always used to excuse me from going to people’s houses as I would run straight upstairs to inspect the toilet. They had to change a toilet and decorate a bathroom for me when we moved house as I wouldn’t go in them (I was 5 years old at the time). The problem just seems to be getting worse and I now dread the day when toilets like this come back into fashion. I’m also finding it very hard not to pass on this fear to my daughter.”
“Wow, I’m so pleased that I found this site. I’m a 17 year old girl suffering with this condition. I’ve had this problem since I was 16 when I was a cashier and needed the toilet once but was too afraid to ask to go. I ended up having a really bad panic attack and wet myself. This was the most embarrassing thing that I have ever done and even though only two of my colleagues knew about this incident at the time. I dreaded going into work so much so that it makes me want to cry thinking about it. I have also developed emetophobia (fear of being sick) and in a way this phobia has kind of taken over from the toilet phobia. I do however constantly worry about needing to go to the toilet when I am at work. I am seeing a counsellor to help with my problems and although this is a very embarrassing problem, I urge anyone to speak up about this. One practical thing that has happened at work is that I have been able to change sections and can now remove myself from the shop floor whenever I need to. This has helped enormously. My counsellor has taught me techniques to challenge my anxiety which has entailed facing my situation in a positive way. My advice to anyone with this problem is to visit your GP.”
“I am so pleased to have found this site. I started suffering with IBS a few years ago, which led to having a constantly upset stomach, causing me to be afraid to go out in case I couldn’t find a toilet if needed. I’d never liked using public loos anyway, but with diarrhoea striking without any warning, I’ve become petrified of not getting to a loo in time. Even if I go somewhere with loos, I hate the idea of being heard. I even panic if people are coming to my house for fear of being heard on the loo. I refuse to use public transport, and panic if I get caught in even a small queue of traffic, for fear of needing to go. I never realised this had a specific name, as I have tried hypnotherapy to no avail, but it was for general anxiety. I am now positive about trying CBT to help me cope, because at the moment it feels like I’m not really living my life, merely existing.”
“I cannot believe I have found this site after seven years of suffering in silence. I thought I would type into Google ‘toilet phobias’ and the BBC article was the first thing to display. I already feel like such a weight has been lifted. I have at times felt addicted to imodium, and underwent counselling to try and break away from the habit of carrying it. I cancel plans with friends, nights out and nights in, if there is someone else there who I cannot trust with my problem. I have left relationships because I could not bear the thought of needing the toilet when they were around. I am even too scared to rent out a room in my house even though I have got two toilets in case they hear me. I have had two endoscopies, IBS medication, anti-depressants, counselling, and hypnotherapy. Reiki is helping a little, but only really with the panic attacks, which is what I tell people I have, not a fear of the toilet. I too have turned down jobs, invitations out, dinner with friends, even visiting relatives in case I need the loo while I’m there. It doesn’t even matter if there is a toilet there. I’ll then panic about having to use it, and everyone knowing why I’m using it. I hope I can find a spark of hope from this site, and wish the best of luck to everyone else who suffers with this fear.”
“Hi, I’m male and twenty three years old. When I was eleven I had a water infection and since that day I have been constantly stressed with the feeling of needing to urinate. At school I would skip assembly, I quit football in case i needed to wee during the game. I hated car journeys and before and after every lesson at school I would have to go to the toilet. I cant believe no one ever noticed. Its been the same ever since college and throughout work its been none stop stress, always clenching and worrying about needing to urinate. I never went on holiday, hated shopping or going anywhere that I didn’t know the location of a toilet, but somehow I managed to deal with it through those years. My dad died when I was seventeen and his funeral was difficult to get through but then I started drinking and it felt better as I was meant to need a wee after drinking so much alcohol. I was working at ASDA for about 2 years when I had an especially bad morning and really couldn’t stop the urge to pee and eventually had a panic attack and ran home. I didn’t go back and was signed off for four months with depression as I still found it hard and embarrassing to explain to any doctor. Around this time I also started having symptoms of IBS and still do now. Eventually I got back to work and all was well for another year or so but around two years ago I was driving home from work twelve miles from my house and got the same feeling. It took all my confidence away and I quit work again. I got really low and one night when drunk I decided to try driving to the sea and off a cliff. The police got to me before I reached the sea and arrested me for drink driving. Now I was petrified my worst nightmare. Handcuffed in a car and knowing I’d be stuck in a cell. I was on suicide watch over the weekend and got woken up and carted ten miles to court in a security van. The whole time feeling I was going to wet myself, then locked in a cell with another guy without a toilet. I managed to make it through to my own amazement and got a lift home but Ive never gone back to work and rarely leave the house unless Im drunk. I have a girlfriend who knows nothing about it and it breaks my heart not to be able to go places with her. Counselling hasn’t helped and after the lack of help or support from doctors I’m considering trying hypnotherapy but if that doesn’t work I’m not sure how much longer I can go on living like this. I just wish I was normal and could do normal things without being so stressed and fighting the urge to wee. To this date I have never soiled myself and always managed to get to a toilet or bush in time. I just dont know what to do anymore and I need my confidence back.”
“I have read lots of people’s experiences written here, and I feel so relieved, that there are so many other people who thought they were the only ones. I just saw a programme that said there are four million people with similar problems. I am really shocked. My phobia extends much further than the toilet, unfortunately. I fear anything with a pipe attached to it. The worst things are toilets, showers and sinks, air conditioning units, drains and electric hand dryers. Anything that you have to expose yourself to makes me feel sick and dizzy to think about. I have been suffering with this for as long as I can remember. One time we even had to abandon a holiday because I couldn’t enter the bathroom. I wet myself up until the age of about 15 because I couldn’t bring myself to go near a toilet. Flying fills me with dread as I’m terrified of airplane toilets. Small spaces with pipes gives me awful claustrophobia. Loud noises like flushing that I haven’t prepared myself for cause me to scream and lose control. I have tried hypnotherapy, but that hasn’t worked for me. I’m not embarrassed about talking about it, so I’m really surprised I haven’t come across someone who has a similar experience. I can’t wait to explore the information on this website as to possible treatments, and try and get this sorted, as I had come to accept it was something I just had to try and live with. Thanks for this website – it’s brilliant.”
“I won’t go into detail because it would take too long, but coming across this website and in particular the TP articles, I feel like I have just discovered a hidden kingdom or ‘never never land’ – a place where I fit in. I know that this might sound over the top but it is true and actually I have a smile on my face knowing now that I am not alone. From reading the other personal experiences of TP, there were one or two bits in particular that I read and couldn’t believe it because these exact things happen to me also. For example, forever refusing nights out with work colleagues – my wife even. I am only settled in a job if I know that the toilets are clean and private and that I can use them without embarrassment. Long journeys and people coming to my house are a nightmare for me. I am 31 years old and I don’t really know why this problem started. I tried explaining to my wife about my difficulties but it has been hard admitting the true extent of the problem to her. I also feel so guilty that the reason why we don’t go out together is because this problem controls all my life.”
2 embarrassed 2 say
“I am 16 years old and suffer from toilet phobia. I have social phobia and OCD. I can’t go to the bathroom when other people are around. In a public toilet I will wait in the stall until I am positive that the whole bathroom is empty. I can be waiting for 15 or so minutes and I won’t go until everyone has left. I also have to wipe the toilet with toilet paper very thoroughly and then put a bunch of paper on the seat, before I sit down. I have had this for numerous years, and it has gotten worse since. I now have to wipe the toilet seat in my own house. I also can’t use the toilet if someone has just walked out of the stall, this goes for my house too. If my sister just came out of the bathroom, I can’t use that one even if I really have to go. I also can’t use the toilet if the person before me didn’t flush the chain. I flush the toilet but I can’t physically get myself to sit down and go because of the fear that the bacteria from the urine will spread onto me. I have been suffering from this for many years but have only just now been able to put a name to it. My sister laughs at me and thinks I’m exaggerating and am foolish. But she has no idea how it feels to have to go so bad but not be able to. I found out about the name for this problem from a classmate when we did a health project. The kids in my class couldn’t believe there was such a thing and laughed. I was too embarrassed to tell them that I suffer from this issue. I am so glad to know that I’m not the only one with this condition. I am from the USA and have never come across another person with this problem. This website has given me the information to finally start improving my life.”
“Wow, I have just discovered this site and reading some of your experiences has made me realise I am not alone. I have IBS but instead of diarrhoea I tend to suffer bad constipation, sometimes not going for three or four days because I physically can’t and when I do it’s usually very small amounts, takes forever and is not satisfying in any way. I get dreadful headaches and stress and as a result I simply cannot relax in the toilet when anyone is around. I usually can go in my own house but I will have to be there long enough to relax and be able to go comfortably and know that no one will come near the bathroom. In fact I have taken to using my mum and dad’s en suite bathroom instead of the main one as it is more private. I’ve even had in depth talks with my boyfriend of a year and a half about this but still if there is a chance he will hear me in the toilet I freeze and nothing will come out. I recently spent three months in America working and had an entire floor of a house to myself and have proved to myself it is psychological and not a real physical problem because I went very easily and comfortably almost every day, except the two weeks my partner was out visiting. Literally the first day he arrived I found myself constipated again. It’s not just him, it can be anyone, a friend, a relative you name it. I dread going away for weekends or holidays because I know I will not be able to poo for days and I will get headaches and feel bloated. This is becoming quite an ordeal and I really wish I could get rid of it.”