Has anyone overcome toilet anxiety?

[Dollycarton81]

I've posted about this before but am feeling at my wits end at the minute. I have suffered with toilet anxiety for years now. It's an intense fear of going anywhere or doing anything and not having an accessible toilet nearby. During lockdown when toilets have been limited (and still are in some places) it's gotten much worse and it's now a real struggle for me to go anywhere which is causing me a lot of guilt as I want to take my kids places during the holidays but am limited as to where we can go. Rural areas, long car journeys, the beach are all problems. Even going into town I'm constantly thinking about where the nearest loo is and the anxiety makes the urgency of needing to go much worse.

I have decided to start a course of cbt and my therapist has mentioned exposure therapy which I feel sceptical about. I'm trying to stay open minded and hopeful about conquering this and being able to live a normal life. I just wanted to hear if anyone else has experienced his and managed to overcome it? If so, what worked for you?

Have you heard of OAB (Overactive Bladder Syndrome)

patient.info/womens-health/lower-urinary-tract-symptoms-in-women-luts/overactive-bladder-syndrome-oab

I have the same problem as you and for years I thought it was all a psychological issue and I just needed to "pull myself together"/train myself out of it somehow.

It really helped enormously when a nurse explained that I have OAB. OAB isn't the same as stress incontinence or just a weak pelvic floor. OAB is a physical problem where the bladder muscle contracts and empties when it doesn't need to. Because you don't know when it's going to do this you then have all the psychological knock-on effects of being worried about it because you can't foresee when it's going to suddenly happen.

Just going to the loo before going out doesn't help, as OAB means the the bladder will sometimes decide it's going to contract and empty again not that much later when there isn't much in it.

Just knowing that it wasn't a problem that was all in my head did wonders for my mental health. And if you do think it might be that, then you can then try the bladder training treatment that's explained in the link to get your bladder more under control.

I have a very similar thing but with not wanting to use a public toilet due to the virus & avoiding going out for the day or too far as I can't use a toilet

@Will0wtree mine tends to be bowel related more than bladder

But yes I see your point and I've undergone a lot of tests for physical bowel disorders, intolerances and so on but there's nothing to suggest anything is amiss. I probably do have some degree of IBS but I'n convinced that it's brought on by stress and anxiety rather than food or lifestyle.

It's very very debilitating and sucks the joy out of everything. Days out, holidays, travelling just feel like an ordeal. I'm only truly settled when I'm at home. Other places where I know toilets are available like the supermarket are doable but that's it. It's ruining my life.

I don't have any advice but I am the same, and with lockdown like you say it's very restrictive, it's bowels for me too, and it's horrible isn't it.

Ah, sorry to have waffled on the wrong track, I didn't realise. That sounds really awful for you. I hope the CBT helps or someone comes along with some good advice.

@Will0wtree no it's fine it's nice to hear other view points and I do sometimes wish it was a physical issue as they can often by more easily fixed. Unfortunately I really believe this is my mind creating a physical response and until I can control my mind it feels like I can't control my body either. It's really horrible.

Life before lockdown was bad enough but now the worry that toilets aren't going to be open and the freedom of just popping into a pub or a McDonald's has been removed I really am struggling to go anywhere.

I could have written this myself I have the exact same anxiety. I struggle going to places such as B&M where you can be in a while and there are no customer toilets. I'd never ever consider going for a long walk in the countryside or anything like that where I can't access facilities. It has stopped me travelling with friends in their cars for days out as if I need to stop I couldn't. I'm constantly worried I'm going to have an accident and like you OP only truly feel comfortable when I'm at home. I've been like this for about 11 years now, tried CBT and I take sertraline for anxiety but I just cannot stop this way of thinking.

@Dollycarton81 I know exactly how you feel (I have IBS and anxiety). I had a long course of EMDR (paid for) to address my anxiety. This also helped my anxiety around IBS. It taught me to challenge the thought process and the catastrophising that I'm prone to. For example, "if I go on that country walk I will definitely need the toilet while I'm out and miles from anywhere."
EMDR taught me to challenge this and slow down the part of my mind that tries to convince me this will happen.

My therapist always said I need to remind myself that I cannot predict the future. I cannot foresee events that may or may not happen, therefore I can't restrict my life based on my fear that something could happen. She also said that basically (sorry to be blunt) no one will die if you don't get to a toilet on time. Obviously it would be embarrassing and uncomfortable, but ultimately no one will come to physical harm.

I'll admit I've struggled myself with lockdown restrictions and the worry of toilets being closed. There is a website called Lockdown Loo and that's brilliant for seeing which public toilets are open. It links to Google maps.

I'm sorry this was long. I hope it helps a bit.

This is the bane of My Life too🤦‍♀️🙄

I had this raised as an objection when I discussed a day out in Cambridge with a friend - a quick google found a map of which public loos were open.
Most public loos I've used recently (mostly council & supermarket) have been a lot cleaner than they usually are - and none have been out of soap.

I know it’s not a solution, but a good dose of Immodium before you set off staves off the problem. It’s worth being bunged up for a few days if it means that you can enjoy a day out without the fear of needing to dash to the loo.

I also download toilet maps if I go somewhere. However, some places I would never go: coach trip, boat trip, and the worst trip ever - hot air balloon

I know what it is like and I have become a bit of a recluse. I have become distanced from people because it is too awkward to tell people that no, you can’t meet for a coffee/walk etc because you may need the loo. It’s bad enough dealing with dh and the dcs’ eye-rolling as I mainline immodium and search for emergency toilets on holiday. They are sympathetic but I am a liability, nonetheless.

I am the similar to you- I have anxiety induced IBS and would fear going out because of it. I was prescribed a low dose of citalopram and went for CBT. One of the side effects of the citalopram is constipation so it sorted out my bad bowels whilst helping me to relax a bit more so I could go out 😂. The CBT taught me how to challenge my fears and manage them better. I have been off the citalopram for a year now. Had a little wobble during lockdown but used what I had learnt from CBT to manage my fears and not let them take over.

I really recommend exposure therapy. It allowed me to see that actually I could go out and I would be ok.

Because of the nature of this problem it's something people don't talk about but I know from posting here before it's actually quite common. I don't think anyone else in my life experiences it though and it's so hard to make people understand. Dp is patient but he doesn't get it. I can't talk to friends about it and instead have pissed them off by cancelling days out.

I'm currently summoning up the courage to go shopping for school stuff with ds but I know I will have problems in the town centre as toilets are few and far between.

I'm praying CBT will help a bit but I'm skeptical.

To add, I do use Imodium if I really have to do something out of my comfort zone but even that doesn't always work.

@Coffeeandteach can I ask what your exposure therapy consisted of? Do you just gradually force yourself into problem scenarios and see how you cope?

I've had this since I was a teenager, only it's bladder for me. My life is very very restricted at the moment because there are no toilets open anywhere.

I am so like you!

In normal times I’d sometimes look at holidays such as tours, and then suddenly think that I could never, ever do that as I have to be within hailing distance of a loo.

Europe is a problem for me as there aren’t public toilets in most non-touristy places. Actually the US isn’t great either and to my mortification had to fall upon the mercy of a shopkeeper in the middle of nowhere.

It is such an embarrassing ailment. It has really curtailed my life.

I had this last year. It seemed to start out of nowhere as I have never had any bowel issues but I would panic that I would need to go when I was out. I hate the noise of stomachs rumbling and I would panic that my stomach would make noises when I was somewhere quiet. This was when I was at university so it was a nightmare to be sat in a silent lecture hall for 2 hours. I would also panic whenever I was anywhere else that was quiet like a waiting room or in the car with someone. I would worry about needing the loo every time I went out even just a short walk to the corner shop. I started restricting my food and only eating what I deemed to be "safe" foods like porridge. Again now I look back this was completely pointless as I can tolerate a wide range of foods and I have never responded badly to any kind of food before but it at least gave me some kind of illusion of control over the situation. I was so hyper-aware of my stomach that I would give myself stomach aches from how tense I was.

For me it was completely illogical as I have never had any physical problems so there was no logic to the fear. Over time I realised it was just general anxiety manifesting itself to this very specific fear. Really it was nothing to do with toilets but it was the feeling that I couldn't leave and I was stuck in a situation I felt anxious in. Once I reminded myself that I could just leave whenever I wanted it helped a lot. Even in situations that would be awkward to just up and leave like the middle of a seminar or a meal with friends I still could if I wanted to and just knowing that helped a lot.

I recently read a book that has really helped as it taught CBT principles. It really helps to sit with an empty Word document or piece of paper and journal through what you are feeling. The book was Overcoming Anxiety by Helen Kennerley.

To summarise what I did/do is: Describe the situation -> Describe the emotions and body sensations you are feeling -> Describe your anxious thoughts and predictions -> Describe the precautions you tend to take (e.g. restricting your eating, only going to local places, only going to places where there are nearby toilets) -> Describe how are your thoughts distorted (e.g. over-generalisation, magnification, minimisation) -> How can I reframe my anxious thoughts?

It sounds silly and the first few times I did this it felt pointless and like it wasn't working but then I noticed my anxious had just completely dissipated. I know it has been effective as last week I had to go to the doctors. I managed to eat a normal breakfast, sit in a silent waiting room and then sit in a quiet doctor's office with my GP all without even thinking about needing the loo. That was quite possibly the worst situation for my anxiety with all of my previous triggers and I was absolutely fine and calm.

I am so sorry that you are going through this. It is so difficult and makes life feel so miserable.

This ruined my life for almost 15 years and nearly cost me my marriage.

My husband was very patient to begin with but after countless times about to leave the house and I would turn back at the door, cancelling visits to friends, cinemas etc he became fed up with the constant disruption.

We'd sometimes be a few minutes away from the house in the car when I'd say - go back at once, I must go to the loo! And we'd go turn round and go back - and I'd be fine, no need to go to the loo after all.

If we cancelled something, the minute I knew it was cancelled, I was fine.

So we began (well I did, he'd thought it for some time) to think it was anxiety related. I began a few routines to manage things, and it's a million times better.

If we are going on holiday, I take Immodium before we set off (and after a loo visit) so that I know that I will be fine on the drive to the airport, on the plane, and when we land, can get our transfer to the accommodation without almost hyper-ventillating with anxiety.

I have had to get off trains, buses because I thought I would soil myself. As soon as I got off, I was fine.

I still prefer to sit on the aisle seat in cinemas and theatres, but have managed a middle of the aisle seat. So long as I can see the signs for the exits and toilets.

I know EXACTLY what you are going through. You can fix it though.

I lived like this for many years and only overcame it when I addressed underlying anxiety issues.

I had CBT and counselling at different times.

It is awful and I do get occasional issues but nothing like I used to. I feel for you - it feels insurmountable when you're in it.

A close male family member had this. Went on several courses by a small paruresis charity. Life Changing. Made a HUGE difference, so freeing. CBT based, with exposure/ practicing. Please get help on this OP can allow you to live your life and do so many things (travel/ longhaul flights etc).

I can see how town centres are challenging but long countryside walks can be different - can you get a potette that you can squat over where everything is bagged up and dispose of?

I think it's worth you working towards training yourself to be comfortable going outdoors in secluded locations, as this will give you a greater quality of life.

Yes as a child/teenager, my mum basically did exposure therapy with me and it worked. You can beat it I promise x

I planned how I would expose myself to my worries over the course of a week. So for me, there was one place I was extremely worried about, because I was there when my stomach first played up (supermarket). So I visited every day for a week:

Visit 1- Drive to the shop and sit in the car, then go home.
Visit 2- Drive to the shop and get out of the car for 2 minutes. Go home.
Visit 3- Drive to the shop. Go in for 2 minutes. Go home.
Visit 4- Drive to the shop. Buy one thing. Go home.
Visit 5- Drive to the shop. Buy a few more bits. Go home.
Visit 6- Drive to the shop. Do full shop. Go home.
Visit 7- Drive to shop. Do my full shop. Go somewhere after.

After each visit I would feel more confident about going back. I think I ended up missing a step too because I felt ready for the next one. One thing my doctor said to me, that really reassured me, was that when we feel nervous our inner stomach/bum muscles relax which makes us feel like we will desperately need the toilet but the outer ones don't. So actually pooping yourself from anxiety induced IBS is incredibly unlikely. So when I would feel a twinge, I just ignored it and focused my attention elsewhere.

Thank you all so much for the reassurance and the extremely helpful advice. I do feel a bit more hopeful after reading through all this. I felt a bit dubious about exposure therapy because the thought of going somewhere 'dangerous' at the moment feels impossible for me and if it were just as easy to throw myself in and sod the consequences then I would have done it already! It's breaking down the huge mental barrier that I've created in my mind that's the issue.

It really does help to see how many people have gone through this and managed to come through the other side. I am having my first telephone consultation for CBT tomorrow so hopefully it will be the start of an improved lifestyle for me.

Hi, I haven't any advice for how to cope mentally with this problem, but I do need to know where all the toilets are before I go anywhere. This is now due to a weak bladder (I am 62, and Diabetic). However when I was a young mum, after years of having bowel problems when I was out for a whole day (but not when at home) I finally realised my problem - I did not drink coffee at home, but I would have "proper" coffee if I was out for the day. It was the coffee that gave me the very urgent runs shortly after I had drunk it. I now always have decaf coffee, and I am fine!
I had a slight blip when I was diagnosed with Diabetes, as the Metformin I was given, also gave me the runs - I had an awful accident in a supermarket one day! Apparently Metformin has that side affect on about 25% of the people who take it.
I obviously stopped taking it.
Good luck OP with overcoming your problem one way or another.