Development of the project- Who can be affected by toilet phobia?
- Causes of toilet phobia
- Treatment of toilet phobia
- How we can help
- The Project
- New toilet phobia Summary Sheets
- Personal Experiences
- Useful Links
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.
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
- Access to our helpline (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 the psychology information 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.
The project
Following on from undertaking research involving those affected by toilet phobia, we organised a seminar event at the Royal Society of Medicine where professionals and inspirational speakers were invited to give presentations on the condition in an effort to develop shared understanding and an agreement on various forms of treatment that may be found useful by those affected. Below we have made available a selection of the presentations from the day:
- ‘Toilet Phobia’ – Getting to the bottom of it
Anxiety UK - What is toilet phobia? History, research and the present status of toilet phobia
Paul Salkovskis, Kings College London - Creating conditions for Self Empowerment
- Toilet Phobia- its relation to agoraphobia and social phobia
Karina Lovell, University of Manchester - Unwrapping paruresis – From what is known to what we still need to know
Alex Gardner
Following the feedback derived from this event, we developed an information booklet and information DVD aimed at raising awareness and promoting the treatments available. These are available by visiting the Anxiety UK online shop.
The project also involved raising awareness of toilet phobia which, Anxiety UK has achieved through working closely with the media (click here to read the toilet phobia press release). Hearing others talking openly about their experience of toilet phobia has had the effect of encouraging other individuals affected to speak up about the condition. We are hoping that the more people discuss this issue, the more the stigma associated with this condition will reduce. For many people who are affected by toilet phobia, there is a double stigma in that they are not only experiencing anxiety which can be difficult to discuss, but that it also relates to the taboo subject of anxiety around toilets.
New toilet phobia summary sheets
Following the success of the toilet phobia (TP) professional chat sessions, Anxiety UK is happy to bring TP sufferers a new resource – summary sheets from the professional chats. Below are summaries of the advice and queries of TP sufferers that have attended the previous 3 chats on urology, cCBT and Clinical Hypnotherapy. This advice may also be useful to sufferers of other conditions.
- Toilet Phobia and Urology
- Toilet Phobia and Clinical Hypnotherapy
- Toilet Phobia and CCBT
- Toilet Phobia and Agoraphobia
- Toilet Phobia and IBS
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Personal experiences
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.”
Angus
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’.
Tracey
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.
Cured
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.
Anon.
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. “
Tara
“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. “
Liz
” 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.
Katy
“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.”
David
“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.
Paula
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.
Eva
“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.”
Heidi
“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 vist 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. “
Anon
“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. “
Jodie
“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. “
Rebekah
“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. “
Lisa
“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. “
Kel
“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.”
Rosalyn
“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. “
Anon
“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. “
Clare
“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 inforamtion to finally start improving my life. “
Emily
“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. “
Jennifer
I have just read all these and its so horrible to think other people have this phobia as well as me, i have had this phobia since i was born and my mum had it too but she grew out of it when she was about 15 but unfortunatly i dident grow out of it! im nearly 18 now so i dont think thats going to happen for me.
my toilet phobia is a little different from some of yours i can stand high watered toilets, toilets that are metal toilets that are on the planes trains and coaches! and i also hate automatic toilets i freeze if i see a toilet blocked i just start crying, when i was younger i had several trips to the hospital because i used to hold my poo in (excuse the poo part) because i just couldent phisicly sit on the toilets! even now some times i dont use my toilet at home properly as i get so frightened! and when i go out i try and hold it in, i also have developed IBS of course that only makes matters worse!
me and my boyfriend went to thiland this year for my cousins wedding and the hotel we stayed at had the toilets with the high water in and i had to use a bucket to go to the loo in and just keep cleaning it out.
im just hopeing in the future my children dont carry the same phobia!
and i just wish i could get rid of it and over come my fear.
Hi Danielle
I have just read your message and was amazed to see some one else suffers the same way I do. I wasn’t born with my phobia though unfortunatly I was locked into a public toilet when I was 4 years old by 2 girls that blocked a high systern black and white toilet with a pull chain and wouldn’t let me out, the water level went over the toilet and onto the floor, there was no lighting. ever since I have been unable to use pull chain toilets and have to go home form work if I need to use the loo. I had counselling and hypnotherapy but nothing has worked. Have you managed to conquer your phobia? If so I really would be interested in how you did it. Hope that your phobia free now. Gemma.
Similair to what everyone else has typed, i am so happy i have stumbled on this site.
i am 27 year old female and for the past 10 years my phobia of needing to go to the toilet for a “number 2″ has been getting progressively worse. Before this phobia began i was very outgoing, bubbly and never worried about anything. My mum always used to tell me how much she wished she could be more like me- and now i desperately want to go back to the old me!
i think it began when i was about 16 and was in the car with my parents driving up to newcastle. We got stuck in a big traffic jam and i had the urge to go to the toilet for a bowel movement. i begna to panick and only just made it. ever since then i have become obsessed with needing to go to the toilet. the development of IBS hasnt helped as my bowels tend to do what they want to do (without any real warning!) but even though i have cut wheat out which seems to have helped, if anything my fear has worsened. i cant also help but think my IBS symptoms are partly down to the stress i am putting mysel under.
it is now to the point where i will NEVER go on a motorway, wont go on public transport and will always look for excuses to get out of social plans. my close friend are aware of the issue so i do tend to feel quite relaxed around them, but i am constantly worrying around new people including my boyfriend’s friends.
driving to work has become a nightmare too and every morning i go through the same ritual of tryong to empty my bowels before i leave the house. just this morning i had a small panic attack in the car as i was stuck in minor traffic!
Genrally being at work is okay as i have requested to have my own toilet which i luckily do have- however i was told last week that am to be in a large meeting this week and all weekend i was worrying about what i would do i need to go to the toilet more than once and how everyone in the meeting would notice.
I definitly think my phobia is getting worse- i have tried a session of hypnotherapy but it didnt work- mainly because i never completely relaxed in the session as mentally i never totally switch off these days, after about the 3rd weekend of barely leaving the house, i worry that if i dont do something about this soon, i will soon be house bound as i only every feel totally safe when i am alone in my house.
Helen
you should try not to worry about meetings, if you need the loo just go, if im in a crit at uni i just walk out, its embarrassing but its not going to stop me going, most people think im just going for a pee so they dont really notic. I can relate to how you feel, i panic in traffic as well but i use a bus which is worse, your car is private, take a small bucket with you, it sounds stupid but i heard a woman did this and just having it there eased her mind, she knew she had something there IF she needed to go :)
I suffer exactly the same as you. I use to be a really bubbly upbeat person up for anything. Now I prefer to stay at home if I can help it, but if I’m on my own I’m constantly thinking of the next place I have to go and wheteher or not I will ‘need the loo’, this in turn makes me 100 times worse, worse still if I can’t go I get really bad wind which can be extremely embarrassing. It stops me from living my life the way I want to, and sometimes even rules my bf’s life as sometimes if we plan to go somewhere we can’t for my fear. Nice to know I’m not alone on this one. Hope things get better for you though hun.xx
Hi Helen,
Reading this was like having someone read my life story when it comes to my phobia! I would love to hear from you for advice on how your getting on, what you have tried, what works and what doesn’t. I would be grateful for anything, even if its just someone who can understand in bad times!!!
My fear of needing the loo when out and about has escalated to the point that i hate using buses, i dont want to visit the doctor or dentist. I dont want to visit anywhere rural as there are no loos. Im ok when there are loos on a bus or train but scared of buses without loos. I was ok before but its worsened to the point i have not had a job and just manage to get the bus to uni everyday. I dont drink enough water throughout the day and never eat fruit or veg or anything with fibre in case i need the loo, i also wash my hands a million times so i dont get sickness and diarrhea. I dont know what i would do if i needed the loo on the bus. I find that having tissues, a bag and wipes helps, i also have a key which gives me access to toilets anywhere, like disabled toilets. No one understands and im classed as lazy. Im moving to the city so i can control the symptoms, ive been using the bus for 3 years now but cant do it anymore, the stress is too much. It makes life difficult, i never had this before, luckily i got through school, college and 2 years of uni before it hit me bad. I had a problem with needing a pee when i was younger, i was never given councilling so i think it must stem from that and also lack of self confidence. I hope i can control it, i have problems with wheat and dairy and oats, they give me really sore stomachs and wind so i would suggest people cut them down to a minimum and watch how much caffeine they drink and how much they smoke. Anxiety will make you need the loo though but i have found you can control needing to poo by calming down, needing a pee can be controlled by not drinking too much before travelling.
This has completely changed my view of myself. I thought I was weird, because I struggle to go out (even just for 15 minutes or so) for fear of not being near a toilet. It’s amazing to see so many people inflicted with this same problem.
I was told that I couldn’t go to the toilet when I was in Grade 3 (9 years old) and I wet myself in front of the whole class. I think that started my phobia….which means it’s been going for about 12 years.
Only a few months ago did I finally tell someone, and I only did this because I was with my dad and could not get onto a train to get home from the footy. I felt so sick, I was sweating and shaking, and I had to explain to him why.
Since then I have been seeing a psychologist and I am yet to improve, but at least I can imagine my life without this problem always stopping me from doing the things I want to do.
Thank you for your stories. Good luck to everyone!
i cant believe theres so many people with this. i have always had i.b.s and when i was young i was always scared about going out and about or going somewhere for lunch or dinner. i remember dad taking me and my sister to mccdonalds and when they said they wanted to sit in to eat i would cry and ask and ask if we could just get it and take it home to eat. i also used to pretend to be ill just so i didnt have to go to school because i feared i would have an upset tummy and not be allowed to go to the toilet or someone would hear me and people would take the micky. once id left school it died down abit, but now it seems to be getting worse. i went on the bus to go shopping a couple of weeks ago..its around a 45 minute journey..it took alot to get on the bus but once i was on it and it started moving i started sweating, became restless and started to feel sick like i was going to pass out through worry..is this a panic attack? im scared to go on any long journeys now and i hate not being able to go out and just eat whatever…i wish i could go out, not worry and eat new different things but i just cant…its stressing me out and i feel like i’ll neer get over it and be able to do all the things i would love to do.
A friend told me about this site and I have to say I thought I was the only person who experienced my type of toilet phobia. I cannot go any where unless I know I have easy access to a toilet for a wee. It started about 6 years ago now and has gradually gotten worse. I havent been on holiday for 5 years as when I did my poor husband had to stop at every service station or place that had a toilet and even then I panicked in between. It puts limitations in my every day life and to be honest is the main reason i suffer from anxiety issues as well. recently it has got worse and I now i even panic if i get stuck in traffic or stop at traffic lights. I feel like i need to wee even when ive just been before i left the house. Like Ive read others of you have said when i do get to a toilet its just a trickle!! I would love to know of anything people have tried to tackle this problem. I know its a mind issue and that its all in my head but its become an almost natural part of me, I know i wasnt always like this so i must have the power in me to stop it x
today i made it to a busy town centre without major panic attacks. It felt awful some of the time but its a start. tommorrow is another day but today I acheived something x
Hi Rebecca, just wanted to comment back to this as your situation is so similar to mine! I am 20 and have had this problem for about two years now, with it gradually getting worse during that time. I can completely understand about traffic – this is always a problem for me and unless I’m in a car with someone I completely trust (for some reason I find this a little easier, like an accident might not be so embarrassing infront of them) my bladder feels instantly heavy as soon as that panic starts. Some good advice I’ve had recently from a CBT counsellor which helped me is to think about those who are involved in lengthy adrenaline-fuelled activities – like Formula One drivers, football players, etc – they have adrenaline surging through them, just as we do when we feel panicked, and have you ever seen them wee themselves? Those feelings of anxiety won’t cause you to wet yourself, you are NO different from anyone else and you CAN control your body. Of course this is hard to believe when you’re feeling awful but maybe keep it in the back of your mind for support. I find setting myself small goals, like walking 10 minutes with a friend away from toilets, help to build up confidence. Anyway, let me know if any of this makes sense to you, feel free to message me if you fancy a chat :) x
Hi Collette,
It is so nice to hear that I am not alone! I am 28 and have had the same problem for a few years. I get very anxious and panic, my bladder feels so full and I am positve I will wet myself. It is worse in situations like work meetings, car traffic jams, train journeys, social nights out. It really upsets me and when I get to a toilet, I do not need the toilet. I know it is in my head, but I cannot control the urge to go for a wee. It is bad at night as well, I lie in bed and even though I have just been to the toilet, I have to get up and go again. what sort of therapy has helped you? I am looking into going private. xx
Ive suffered from this since the age of 17 !!
im now 33, and it has controled my life in a big way !! when i was in my early 20s i was constantly taking imodium, and was incorrectly diagnosed as having chrons disease, and had part of my small intestines removed !! since then i was discharged, but still very phobic about being away from toilets. ive been with my current partner around 8 years now and have 2 lovely daughters. we have never been abroad on a family holiday, and im now worried she’s getting sick of me.
Im always making up excusses about not being able to go places, and have recentley being having panick attacks for no real reason!!!
i was put on citalopram a few years ago which made me feel a little better,
ive never had and counselling? but feel as though i need some now. for years ive felt like im on my own, and feel like im gouing mad !!
hopefully now ive found this site, i can feel like a bit better?
can anyone recomend any active forums/chat rooms?
thanks
mat
I am glad to see I’m not the only person who suffers. I guess I have the social phobia, I can go for a number 1 but a number 2 is damn near impossible if someone is near me. Public toilets unless empty with no chance of anyone entering is possible but if I hear so much as a footstep I freeze and just cannot go. I live with my boyfriend and it’s getting worse and worse and we often fall out because I need him to leave the house before I can relax and go, but I am too terrified to even tell him why so he thinks I am just being nasty. Even if my friends or my boyfriend assure me they don’t care and I decide it’s ok, nothing happens no matter how much I try. It’s frustrating and upsetting and it pretty much controls my life because I feel I can’t relax anywhere I go, and i’m constantly feeling ill because of it. Although I’m glad there are others out there like me, I still don’t know what I can do to cure it.
I am 17 years old and I have had a fear of toilets ever since the age of 4. I do not know exactly why I am afraid but all I know is, I do not like the sorroundings, the water/look of the toilet and the sound of it. At 13 I was taken to see a pscyotrist but it only helped me a tiny bit. They said the only way to get over the fear is to confront it but how can I do so if im too terrified to do so? I wish I could travel but for this reason I can’t and I can not stay at a certain public place for too long. I might have to go to Germany in July to do some stemcell treatment but am to afraid to let my mother know as she will force me into the situation. As she has forced me to confront it in previous situations, it has terrified me even more and I now have no trust in her. It saddens me everyday that I have to go through this. :(
My problem is slightly different.. And confusing.
I’m only 14, but I can’t go to the toilet in public places. I don’t usually go to the toilet to do a number two, so i’m always constipated. I have a feeling this is to do with the fact I can’t pee anywhere except the two toilets in my home. It’s not that I don’t like the unhygenic areas, but I just can’t, no matter how desperate I am. it all started about a year and a half ago at a movie/disco thing I went to. I ended up having to go home because I though it was going to wet myself. I can’t go to sleepiness anymore, and I cant go to town for as long and I could before. This has stopped me drinking as much as I would have before, so I’m dehydrated a lot too. It’s ruining my life, and I hate going to school just because I’m afraid I’ll wet myself or something. I don’t feel like a normal teenager, and I would like to go to the cinema with my friends, and just have fun, but this is holding me back.
im 13 and i got bladder shyness :( it started a couple of yrs ago in my first yr in secondary school i was in the stall then someone kicked the door open making me worried ever since i cant go in public at first i used to be able to go now it has got so bad it is taking over my life i want to play out and go on hoilday. i went on hoilday last saturday and when i got to the b&b i couldnt go my mum had to go to shop before i could then i was alright after. i going round my m8s tomoz because my mum going out in the evening and i staying to sunday and i scared if i cant go wat will happen any help i went doctors today and he said try but it ok for the bloody doctor to say try but he dont have the problem :(:(: i h8 this social desorder thing
i have such an intense fear of sharks (glabeophobia) to the point where i am afraid to go to the toilet
the fear may vary in intensity, i have period where i will not think about sharks at all and then i don’t mind swimming or using the bathroom -, but i also have periods where i am afraid of swimming in any type of water (yes even in pools) and where i am afraid of using the toilet because of sharks !!!
i know it is completely irrational,but still i can’t help it
Hi.
I have, since I was a little girl, suffered from anxiety of going to the toilet. Not as most, not being able to go, but to actually be near and of course especially on the toilet.
I don’t feel ashamed about it, and I do tell most people around me, as it is something that is influent on my everyday-life.
It mostly appears when toilet that flush it self, hi-tech-toilets, small restrooms, as in flights (I can’t stand the airplane-toilets!)..
So mostly, public toilets are my problem. And I hate it. I hate, that I can’t just go when I have to. Sometimes I just hold the pee.. But because I have a small bladder and have to go quiet often, mostly I can’t.
I live in Dubai, but my home country is Denmark, and we go home 2 times a year. That’s 4 flights of 7 hours, maybe more, if not a direct flight. That means, that I sometimes have to pee most of the trip, but if it becomes very unpleasant, as in hurting and so, I go out to the toilet, just standing there, looking at the toilet, shaking, sweating, my heartbeat goes all the way up. Then I usually go back to my seat without peeing, but then I can’t stand it, and does the same thing again. I feel as if I would pass out being in the toilets. After all, I pee, and when I have to again, I always use that exact same toilet. I will still be a mess, going in there the first couple of times, but I have to “trust” every single toilet.
Is there a treatment or some kind of help for this? I know I’m bad at english, and sorry for that, but I hope You understand, really. I can’t live with this “condition” anymore.
Hi Caecillie,
I am sorry to hear about the problems you have been experiencing – you could try a type of therapy called CBT or cognitive behavioural therapy. You can access this through Anxiety UK via the phone or webcam if you are unable to get it in your home country. There are treatments that can help so please get in touch. For more info please contact us on support@anxietyuk.org.uk
Best wishes
Cat (Anxiety UK)
I have an issue with travelling for long periods of time with no guarentee that I’ll be able to stop to use a toilet. On Friday I have to travel two hours and I fear that I’ll embarress myself. I’ve talked to the teachers that are driving us and they say it’s unlikely that they will stop. On any previous journey that has been longer than an hour I’ve spent the whole journey thinkig I need to go to the toilet and it’s very distressing. The teachers have also warned that it’s likely we’ll hit traffic.
Any ideas how I’ll cope this Friday???
I wish i’d only had to travel 2 hours, at least I can hold the pee.. but 11 hours next wednesday…. :s
I hate travelling as a result of my toilet phobia. I have IBS and even though it’s improved slightly since I made changes to my diet, I still get diarrhea at least once or twice a fortnight, and it’s often brought on by stressful situations. Even when everything is working well, I usually have bowel movements at least 3 times a day, so I don’t feel safe being a long way from toilets. The phobia stems from several occasions where my stomach has got upset during a car journey or whilst out and about and I’ve ended up openly crying in front of people because the pain of trying to resist the urge to defecate is so bad. Now if I have to be in a situation where I won’t have access to a toilet for more than 15-20 minutes I always take loperamide (immodium) beforehand. I’d rather be constipated for a day or two than experience the panic and pain of needing the toilet when there isn’t one available. That works for me unless I have to be in scary situations for several days in a row, then there isn’t time for the loperamide to wear off so that I can empty my bowels before I need to take it again. In those situations, I try to eat as little as possible so that maintaining a constipated state for several days isn’t painful.
I’ve received therapy for general and social anxiety, but I can’t apply CBT techniques to this problem, because it is an entirely rational fear. I know from experience that if I put myself in a situation where there are no toilets, without medication, then it is very likely that I will end up in pain from needing to defecate and that I will run the risk of an accident. When I calmly think through my fears, I conclude that they are completely rational and that medicating and avoiding ‘dangerous’ situations is the only sensible solution.
Toilet phobia as defined here seems to be an umbrella term for a very diverse range of conditions that don’t have much to do with each other and in some cases are almost complete opposites. I’m not scared of toilets in the slightest, only of the absence of them. I don’t have shy bladder or shy bowel or fears about germs. It would be easier to find information if the different fears were given different names.
Ive been suffering from IBS -D for 11 years now i have been on several diets and week by weeks my food limitations get higher and higher and my problems with the bathroom just get worse and worse.
I have seen several psychologists and been on various treatments.
I am at a state where i am addicted to researching other ways to help me.
I go to the toilet over 20 times a day and have around 12 bowel movements in the morning….
I take imodium when going out as nothing else works i have tried and seem everything, i hate taking public transport as i have no control over traffic or stopping incase of needing the loo..I have had a few accidents and also a few near by ones too…they are just so traumatising and have really ruined my life….i never want to go out…be around lots of people visit anyone of travel of see anywhere…
I will stop here as it just gets more and more depressing….
I really do not know what to do….i think im just going to have to take anti anxiety drugs everyday otherwise im just really wasting my life, im 22 years old and a mess..
Please help
Many Thanks to you all :-)
Hi helen I have the same thing and can relate to everything ur sayin. I’m 21 and I don’t go out anymore apart from if the journey takes 5 mins or less n there has to b a toilet were I’m going to. I just have the thought all the time that I will poo myself I don’t even like it when people come round to me house incase they go on the toilet for ages and I have a panic attack when my partner is on the toilet because there isn’t a loo I can use. Its ruined my life and every year I notice how much worse it has got than the year before, thinking about things I could do last year that now I will not attempt. I would do anything just to wake up and this problem not to be there. I also have a 2yr old and one on the way and feel so guilty for not being able to take her anywere. Its good to know its not just me tho. And if you find anything that works please let me know I just want a normal life. X
Well I have anxiety and IBS. I’m 15 and i get anxious about anywhere without a toilet e.g. buses, cars, parks, shops. Mine started when i had a constipation and i was on medication that made me go for a number 2, too much. It made me get diarrhea, but i had some control over it and long journeys and places without loo’s weren’t a problem. Then i went on a holiday with a big group of people (adults and children) last year and we were on a coach without a toilet. I suddenly had the urge to go for a number 2, so I let my auntie know and that i needed to go pretty quickly. She then laughed and said that i was old enough to hold it in. Then the ‘adults’ laughed about it and i started to have a panic attack. One women was saying humiliating things about me to some other adults, and i was in a state. I said to a friend that i really did need the toilet and in the end i had to put a nappy down my pants just in case. Fortunately I did make it to the toilet at a service station but the whole experience was awful. I was gobsmacked that so called adults could make me feel like that even though i was crying and having a panic attack. Ever since then i haven’t been on a coach and I can’t get in a car for a journey longer than 15 minutes and buses are out of the question at the moment. I went to my GP and she gave me buscopan for the IBS and i have been receiving CBT sessions. I did manage to go on a long journey in the car and on a couple of bus journeys but i had a couple of setbacks a couple of weeks ago and now i can’t go anywhere. I’m having another CBT session next week and i need to get the bus to the hospital to go and i don’t know if I’m going to be able to. It’s affected my life a lot. I hardly go out with friends and even if i do the trip revolves around the toilet. My close friends know all about this and they are the best, they make me feel better and go out of their way to make me feel comfortable. I worry about places now as well and i hate it! I’m constantly thinking about the future and it scares me. I need help! Any advice please!
Its difficult to forget such a memory, i had a really bad experience when i was younger and then a few more…obviously if something bad happened why would we go to the same place again, incase it happened again. Just like if you jumped off a hill and broke your leg, would you go back to the mountain??
Its hard as the anxiety plays such a huge uncontrollable role into the whole thing, i think the end of it is that we have to accept there was a problem and try no to relate it to our stomachs somehow. We (i presume) are cautious people and have just automatically learned from our mistakes, i still have not taken a train in like 6 months and i take a bus maybe 4 times a month with heart palpitations and i always say its ok its fine i need to face my fear then i do it, then the next time i get the courage to do it again i get the same feelings running to the loo….
I have just done a big tummy cleanse at home with juices and such so that my tummy takes a rest from digestion, hopefully this will clear something away. I always think/say that if my tummy was not rumbling/cramping wanting to go to the loo every 5 minutes then i would not have a problem getting on a bus facing my fear..
What do you think???
Male,20. Im so glad i found this site it doesnt make me feel alone. READ: The main reason this starts is because something triggered it off. mine was i was in town and i needed to go to the toilet really bad, but didnt want to go (Number 2) so i waited until i got home, when i was almost home it was REALLY bad. thats why mine has started, has it for the last 7 months, but the last 2 have gotten much easier, before i couldnt stand the thought of going to town/out incase i couldnt reach the toilet in time. Now Ive been on holiday and go town alot although i still go to the toilet just before i leave just to make sure. I am on no medication and to the people who suffer with this, all i can say is its all in your head and you have to overcome it. my girlfriend wasnt too happy with me not wanting to go anywhere but its getting better and i hope will go completely soon. Just take deep breathes if you start having an anxiety attack, and say to yourself its all in my head, not in my bladder/bowel, then just smile and carry on if you can, take deep breathes and you should be ok. i have never had a public bowel movement and eating solid foods should help, as most of the time mine was because id eaten too much/little or acidy/runny foods, hope i helped!
hello. I suffered from TP for 5 years. It totally dominated my life. I went from having a successful career as a consultant at 34 to not being able to leave the house without crippling anxiety about finding toilets. My concern was having an uncontrolled bowel movement in a public place. I was so embarrassed I could not tell anyone. I dreaded all social events, I could not use public transport and I was terrified of open spaces. I constantly had to develop elaborate escape plans whenever I was in a public place. Whenever i was out i spent the whole time looking for toilets. I had such bad anxiety and panic this would give me an upset tummy and exacerbate the problem. I took immodium all the time and wore dark clothes even in summer. I became very depressed. I always took loo roll, baby wipes, spare knickers with me in a secret pouch in my bag and i always wore sanitary towels just in case. I suffer from OCD and have done for years. My psychiatrist thought my TP was actually an extension of OCD and changed my meds to clomipramine which is for OCD. I set about setting challenges for myself I was so determined to rid myself of my TP. I found 2 things that worked. The first was telling people. Yes it was VERY VERY embarrassing but I found out who my friends were. People were very supportive and all of a sudden all these stories came out….friends would tell me stories of times when they had accidentally poo’d themselves in public places. Then I started setting challenges for my self. I would put myself in ‘unsafe’ situations and just try and hold out for as long as possible and not keep escaping to the loo. I set myself targets over a 1 year period. I forced myself to do the things that I was afraid of doing. I remember going on a walk one day with some friends. I had been terrified as there were no loos on this walk. I did the walk and I didn’t need to do a poo. I was over the moon! The completion of a short walk where there were no loos was a major challenge overcome. Then I made the challenges harder until after 18 months I was doing things I would never have believed I could do like taking a bus or a plane journey without 4 immodium!! In a few months I have to go on a mini bus with some friend and some people I don’t know. I am scared!! But I will do it. This is a major challenge. Just a one hour minibus ride. Just talking about it scares me!!! When I have done it I will be proud of myself. So my advice is to say please challenge yourself. You may have set backs but eventually you will get there. It took me 3 years to get my life back but now I have. Also now I look at it like this…..so the worse that can happen is I poo myself in public. I would rather take that risk then let the agoraphobia come back. And if the worse did happen I would be embarrassed but I am just human and accidents can and do happen. I hope this helps someone suffering with TP. I would like to help people if I can.
Hi Bridget,
Reading your post gives me hope! My story started about 10 years ago when I was driving to a baseball game with my boyfriend, his father who was visiting and some friends. I had been eating greasy food, drinking a little, and had taken a diet pill of all things that same day. All of a sudden in the car I felt hot and dizzy and immediately knew I had to (sorry) go #2 and fast. I ran up to the gate and begged the guy to let me in and use the bathroom while we were getting our tix at the window and he did luckily, and I just couldn’t stop. It did not help that my BF at the time was a jerk and was NOT supportive so it made it worse. I begged him to come home with me and he refused, which looking back now I should have taken a cab by myself, so the whole time I sat outside the ballpark near the bathroom. Then we go to leave and of course we were stuck in the parking lot and could not move. I had to get out and walk near trees to go again because I was so sick. Ever since then, I am terrified of not being near a bathroom. It went away for some time, but came back again when I got stuck on a train underground for an hour and had to stand outside in between the two trains because I was having a panic attack about having to go to the bathroom. I will not carpool with anyone, go in a car with anyone but my husband who is aware of my problem, but I don’t want this to control my life anymore. I avoid long drives If I can help it, and social settings if I do not know there will be a bathroom. I have two little girls and I do not want them to know this is going on so I need to fix it now. Please let me know how you are doing and how your mini-bus tour went!
Bridget, how did the mini-bus tour go? Your post gives me hope! My story started about 10 years ago when I felt really sick one day at a baseball game with my then BF and his family and I had to beg the guy at the gate to let me in while we waited for our tix. The entire game I sat outside by the bathrooms and then got stuck in the parking lot trying to leave…I had to get out of the car in front of everyone and go again in the woods. Ever since then and more recently I have had panic attacks about “what if I have to go to the bathroom and I can’t”? I try to avoid situations or plan ahead by taking a few immodium. I got stuck on a train underground for an hour, I had to stand outside in between the two trains just to breathe. Now I can’t drive in a car with anyone for fear I’ll have to say we need to pull over on the side of the road, or if there is a huge traffice jam i’ll have to get out and walk alongside the car since it brings on a panic attack. I have had to lay down in the back seat to calm myself and to “get away” from the situation in my mind trying to stop my stomach from bringing on the #2 feeling. I don’t want this to control my life, and I don’t want my little girls to see this happening to me when they are old enough to understand.
bless you for posting this story on the web, it must have taken a lot for u to post the story
lets say you set me free,
Hi Bridget – I found your story very encouraging. I have suffered with depression and anxiety attacks for 30 years or so and very often these relate to worrying about needing the toilet and not finding one available. Recently this has been much worse and I have the misfortune of having to take a train journey to work each day to London on a service where no toilets are provided on the trains or on the stations. I did find one train which had toilets and I used this for some weeks, getting to work much too early but enjoying the peace that this gave me. In the last couple of weeks the train has reverted to a no toilets one so I’m back with the problem of having panic attacks most mornings of the week on my way in to work. Similarly to you and many others it would seem I also fear long journeys and meetings at work. My boss and my colleague know that I suffer from panic attacks and depression and are very understanding fortunately although they dont know of the toilet fear issue. I’ve had CBT on quite a few occasions, taking numerous forms of anti-depressant (currently citalopram) and occasionally I get some respite from the terrors. Amazingly I have managed to keep myself in a good job and have a wonderful home life and a partner who is very sympathetic and understanding for which I am very grateful. Like you I try and face my fear by setting myself goals of varying degrees of difficulty, yet getting the train each day is often all I can bear. I also have an additional anxiety of sweating in front of people and have numerous safety procedures I go through at work to avoid getting stuck in possible sweat enducing situations. If I start to feel trapped I start to sweat and cant stop. This is almost as bad as the toilet phobia. Anyway good luck to you and everyone else on this forum. I hope other people find inspiration in your story.
I’m 15 years old and have had a phobia of toilets since I can remember…
My phobia isn’t just of public toilets, its of any toilets I am unfamiliar with. Its very annoying because I’m not completely sure of what it is that I fear. It is also quite embarassing because of when I’m out with friends and we all go into the public toilets I’m always very on edge and can never be the first to go in, and then if there is something unexplaniable that I have taken a disliking to I have to get out asap!
I am slowly starting to get better but if i have to go to an unknown toilet by myself I prefer just to hold on, this isn’t always the best option but I can’t physically bring myself to go into this toilet, let alone the cubical and go for a wee!
Not sure whether I should be doing anything to help this or whether I just should carry on and deal with it, just thought I’d leave a comment to see if anybody else has the same as me, or to see peoples views on it!
Hi Georgina
Sorry to hear you are having a difficult time. Have you spoken to your GPs about the anxiety? Phobia and anxiety are often the results of irrational thoughts and beliefs. These thoguths then trigger our body to react and change our behaviour. Try to identify these irrational thoguths and challenge some of these thoughts and replace them with more realistic one. Talking therapy would be the best way to manage your phobia. A therapist would be able to discuss some of the irrational thoughts with you and help you manage the anxiety. For more information, please look at our Get Help session. Also, distracting yourself from focusing on the situation may ease the anxiety. Managing anxiety is all about self helping techniques and having faith in your GP/therapist and, most importantly, having faith in yourself, believing you have the ability to manage the problem. Dont be embarassed of the anxiety. Be strong and face the problem. Remember you can always speak to one of our volunteers on our helpline.
Andy
i’m 17 and i have been to see doctors and they have said i have IBS, this has limited me going out. but i am not convinced i have IBS, i think i have a toilet phobia and the stress of this is making the IBS symptoms worse. i have not been out the house in about 2 months, and every time i do i have to plan where there is a toilet near where i am going. i have to take imodium if i am going out, be it a 1 minute jounrey to a couple of hours journey. the last time i when out i went to a local shop about a mile away from my house and i stepped into the shop not knowing whether there was a toilet and had a panic attack and started shaking. this is controling my life, and i dont know what to do !
Hi Jimmy
Sorry to hear you are experiencing a horrible time. Anxiety is generally caused by irrational thoughts/beliefs. These irrational thoughts and beliefs will trigger our body to react and also change our behaviour. One thing I would suggest is to identify some of these irrational thoughts and challenge them. Have you thought about speaking to a therapist about the anxiety? I believe therapy would benefit you alot. You can find out the help and support available to you in our Get Help session. Feel free to call us on our helpline to speak to one of our helpline volunteers.
Andy
I am currently waiting to go to work. I’m on a late shift today and being sat at home doesn’t help me with my ‘toilet phobia’. I have suffered from this, depression, stress, OCD etc for the last six years and it completely controls my life. I have decided to distract myself with the computer and thought i would Google if anyone else suffers from the same problem as me (as I was convinced I was alone on this one), comfortingly I have seen all your stories and knowing I’m not alone on this makes me feel slightly better. I was taken into hospital 3 weeks ago because I was suicidal (all due to toilet phobia) to end it is the only way I see out of this. If it wasn’t for this terrifying phobia, I would majorly enjoy life. I have a fabulous family, friends and boyfriend who I love to bits and I can’t bare leaving them in the mess my suicide would cause. In turn I realise that even that is now no way out for me and I just have to endure it until I finally die of natural causes. ‘Toilet Phobia’ is completely ruining my life. I so much want to leave my current job but because I know there are a lot of toilets, and I can easily escape so people won’t notice for fear of ridicule, only increases my fear to leave. I have so much ambition but this one phobia is standing inthe way of me living my life.I am due to start councilling next month and maybe CBT, hopefully this will make things easier. PLEASE HELP!!!!
Hi
I’m sorry to hear you are not feeling very well at the moment. One thing I can suggest is to try to distract yourself from focusing on the anxiety. You can focus on your surrounding environment or listen to a relaxing sound or looking at a relaxing picture. We also have a list of self-help books for you to purchase on our Shop and many of them are written by professionals. Please also take a look on our Get Help session and remember you can always call us on our helpline and speak to one of our helpline volunteers.
Andy