Toilet anxiety

[Rocknroller42]

I've posted here several times before about the issues I have with toilet anxiety - basically huge panic and powerful urge to 'go' whenever I'm anywhere new or not near a toilet. It's a very real urge and it's stopped me doing a lot of things due to fear of embarrassment. I understand the biological reasons for it happening (fight or flight response to anxiety) but it's really taking over my life as I can't seem to control it.

I am having CBT but it doesn't seem to be helping much. Tonight I've booked a Pilates class and am already stressing. Wha if the studio doesn't have a loo? What if I need to go mid class and disturb the others? I wish I could just enjoy these normal things like other people but this constant obsession with where the nearest toilet is is taking over my life.

Anyone have any experience or wise words to help me over come this? I'm close to cancelling the class but I know that will just feed into my anxiety :(

Oh OP you are not alone and I can sympathize. I have had this for 22 years now and I feel it controls my life. There are no toilets on the train to work which make it an awful experience, by time I get into work I am exhausted and shaky. Car journeys are a nightmare....queues or traffic jams are horrendous.

However, my OH pointed something out to me yesterday (after another attack) that I have never actually had an accident. This seemed to resonate somewhere that whilst these episodes are awful I havent embarrassed myself in that way yet. It provided a little bit of comfort.

As a child I would pretend I was invisible and tell myself I was a superhero so that no one could see these episodes happening and it used to calm my nerves somewhat. I have tried a number of coping strategies but have yet to find a solution. The from panic to power book worked for a year or so, I didnt find cbt helpful at all. I have been to the Dr and keep getting told its IBS.

What is your general anxiety levels like? Overall, I am fine. I can deliver a lecture to 200 etc. Travel alone but this toilet anxiety seems to come from nowhere and take control. It started as a child (no events) and has remained today, broke my heart as my OH said it is impacting our lives a few days ago. It wasnt meant negatively, just that I had to duck out of an event as an episode started mid way through and he had to continue alone.

I'm not sure what the answer is, but just wanted to say you are not alone. I think that's the hardest part sometimes is feeling like you are the only person experiencing this and people will think you are odd etc. Sending hugs!

Thank you so much for replying @WinnieSandersonsCat you are so right, I often feel like I must be the only person experiencing this but when I've posted about it here I've always had responses from people going through the same so I guess it's more common than we think. It's just not an easy topic to talk about.

Like you I've never actually had an accident but at times I feel like I've been close and if I hadn't got to a toilet the worst may have happened. Cbt and exposure therapy aren't helping because they teach you to ride out your anxiety but when you're in a situation where you feel like you're about to shit yourself it's not easy to ignore!!!

Totally agree with the traffic jams, that's my worst nightmare. If we ever go anywhere in the car I literally count down the miles and only really feel safe on routes that I know and ones that have services along the way.

Covid hasn't helped because lots of public toilets were shut for a while and that took away some of my safety net (I always check for public toilets whenever I go anywhere).

I have seen my doctor several times and there are no physical issues. It's purely in my head. But that anxiety and panic does create a very real physical reaction so it's not a irrational fear if that makes sense. I just feel at a loss as to how to control it. I've stopped doing so many things and have even had friends fall out with me due to cancelling plans last minute. If I'm somewhere with an accessible toilet I have no issues and am a happy confident person but anything involving travel, meetings, unfamiliar places just creates this panic and anxiety. I hate it so much.

Hi Rock

Not to worry :) just wanted to let you know that you arent alone. Do you have a radar key and a 'just cant wait' pass? You can request these from the Dr and I find these help some of the anxiety knowing I have these in my purse.

I also tend to wear a sanitary towel and tell myself that if the worst happens then that will help.

Do you get the goosebumps and stomach cramps too? I find that is one of the worst aspects, my body goes into shakes and I'm bent double in agony due to the pain so I feel quite visible. When I started talking to friends a lot of them commented that they had no idea what I was going through or hadn't noticed these symptoms, which helped as to me they were visible signs.

I always carry a bucket in the car and spare loo roll just in case. I found verbally telling people about the issue or condition (not sure what to call it) also helped as it took away some of the shame and gave an extra pair of eyes to scout for a loo if necessary.

I think a lot of the fear is inbuilt due to the nature of it. I always think that if someone was to vomit in public people would get a bottle of water for them or see if they are ok etc. But not with this, and that has fuelled a lot of anxiety for me. One day I would love to get confident to not give a f*, I'm tempted to buy the book 'the art of not giving a fuck' to see if that changes my processed thinking.

Do you find that once you are immersed in an activity that you are ok? For example, once you get to yoga class and know there is a loo that everything will be ok?

I have a stock of excuses ready if I need to rush out somewhere, had to use food poisoning a few times or if in a meeting I have feigned a coughing fit or sneezing fit (not great in this climate) which gives me an excuse to leave, sort myself out and return clutching a pack of tissues or bottle of water to explain my absence. It sounds so silly but need something to alleviate the issue until I can resolve completely :)

For me i can't get fully immersed in anything until I know there's a toilet. For example if I get there tonight and there's a loo that I can slip out and use easily, I probably won't actually need it. My anxiety will be sated because I know it's there. But if I were to arrive and be told sorry there's no loo or the loo is out of order I wouldn't be able to focus on the class and would probably have to leave.

I too have some of these safety behaviours. I try and go to the loo repeatedly before going anywhere. I've also been known to take Imodium but that doesn't always help.

I would just love to be able to jump in a car or go to a class or have an important meeting or go for a walk in the countryside and not have these insistent thoughts and obsessions over finding the toilet. If I wasn't anxious I'm certain I wouldn't need the toilet.

In terms of symptoms I get very hot, panicky, can sometimes begin to retch and I get prickly sensations over my hands and chest. All of this I could handle but the stomach gurgling and urgency to go (followed generally by a loose movement sorry tmi ) is by far the most distressing because then it's the added panic of needing to find a loo NOW.

Oh OP, I feel I am reading my own words! The symptoms are exactly the same and the same feeling knowing if there is something available / out of order etc. I keep thinking there must be a reason for this which makes it solvable! Hopefully someone else will come along and post the answer to our prayers on this! But for now, we know it is not just us and we will beat it :)

@WinnieSandersonsCat really reassuring to know it's not just me. I do wish someone would just wave a magic wand and eliminate these problematic thoughts. It would totally transform my life. But thank you so much for reaching out

Always pack a she-wee and an empty bottle? Plus hand san?

@FourPlasticRings it's usually bowel related although I have suffered bladder issues too. I guess it's the embarrassment factor. If I was outdoors with lots of people where would I go?

I have the exact same issues and I have a lot of sympathy. I’m limited to a 5 mile radius of home and can only go to places I know have toilets. It’s a horrendous fear, for me it started aged 10 - I had undiagnosed coeliac disease so did have regular upset stomachs and that fed into such a fear that even now, aged 31 and having lived gluten free for a decade, the fear still rules me life.

Hi OP, I feel the same, but over the years I’ve started to think about it from other people’s point of view, if that makes sense, and it really helps.

For example: if you had to leave the class, would it matter to the other people in there? Probably not, they’ll be too absorbed in what they’re doing. If they do notice, so what? Does it really matter.

If the worst happened and you had to go somewhere outside (behind a bush etc), it wouldn’t be great but it would be doable, and again, if someone saw, what would happen, really?

These thoughts help me, anyway!

Definitely a good idea to try and adopt the 'fuck it' attitude. I care far too much about what others think of me, and I need to stop that. Because deep down this feels like an issue surrounding lack of control and fear of humiliation.

If the worst happened and I had an accident it would be awful but it's not a life or death matter. I keep trying to tell myself this but it still doesn't stop the panic and symptoms.

Yes, a fuck-it attitude helps! Probably why more women suffer from ibs than men, because women tend to care more what people think.

Imagine what would happen if you saw someone else suffering in the same way. For most people they would feel sympathy, or maybe even not register it at all, because most people are just self absorbed anyway!

@Rocknroller42 hey rock I have this, I've been given beta blockers to try as it slows the heart rate stopping the panic, I'm yet to try them as I'm poorly but will be taking them once better defo look into them. X