Toilet anxiety destroying my life

[MHisNOTaTREND]

(Sorry for posting here. I just need ONE person to relate)
For half of my life I have had an intense fear of being away from use of a toilet.
Car journeys always meant stopping every half an hour to empty an empty bladder.
Right now being 2 minutes away from the use of a toilet sends me into panic. If I am in a building with 1 toilet and it is occupied for even 2 minutes, it causes enough panic, its kept me from leaving the house (before pandemic). My body panics and makes me FEEL like I need to go in an instant. (No Bladder problems) When I was 13/14 I was in school in a 'strict' class, and felt ill suddenly. Hot, and feeling the urge to pee and felt sick. Usually kids wouldnt dare ask this teacher for a toilet pass (because of her nature) so fear grew. So I just left, without asking her... Turns out I had a bladder infection. Since then that panic never left.

I have been told more recently it is OCD. Can anybody relate to this?

It sounds awful to live with OP, can you seek some counselling? A decent counsellor could work with you to gradually decrease this fear.

Sorry dont know how to tag? (New) I have had CBT treatment, counciling, all kinds of medication including diazipam. The only thing that helped at first was CBT and I went back again. Ive had multiple councilors over the years but they all seem to be clueless to the problem and I have been passed around.

Hypnosis?

@birthdaybelle Something I have seriously considered! I even enquired once and never heard back lol. Maybe worth looking about

Have you tried EMDR? This is trauma based and EMDR works well with that.

I think it's worth a go. Because there is no logical way around it. You need something unravelled in your mind. Good luck with it xxx

@AmethystMoonShine I have never heard of it, had a quick google and deffo worth looking at!! Thank you
@birthdaybelle This is something I know I should try (because why not!) Thank you for reminding me. Also, one of my dogs called Belle is here right now, got to be a sign lol x

Without wishing to be wooooo yes that is a sign

I too was going to suggest EMDR. It's something you could do online. If you could afford to, you could pay so you don't have to wait. Otherwise you might be able to access it via IAPT but if you can they are likely to have a long wait.

My daughter has toilet anxiety and letting her wear dry nights pants if there is a risk of not finding a toilet helps her.

Maybe wearing something similar (adult type) can help you too?

Look at www.incontinenceshop.com because they have lots of product that can help.

Might be if you wear something when you go out then your anxiety will go away because you know if you have an accident you are protected?

It works for my daughter toilet anxiety and if she has an accident she does not worry anymore

I have the same problem, maybe not to such an extreme but pretty bad. I can’t go anywhere if there isn’t a toilet near by so that throws a lot of things out the window (especially now!) and I always seem to have the urge to go to the loo. If I’m leaving the house I end up having to go to the loo like three times because I’m so worried otherwise I will need to go when I’m out and I never feel like my bladder is truly empty. For me it all started when I developed bad ibs when I was a teenager and for some reason it seemed to affect my bladder as well. The ibs is a bit better now, but the fear is still there. I’ve had bladder scans and tests, tried cbt and hypnosis and sadly thus far nothing has worked 😔

Omg I had nearly the exact thing when I was at school. I was in year five and was in the lunch queue bursting for a wee. I asked my friend t o save my space as we were nearly at the front and she said no. I got to the front, was asked what I wanted for lunch then the dam burst and I just had to walk down the lunch line wee-ing. Then I ran to the toilet as my skirt, pants and socks were soaked and tried to dry everything out.but all day I was in terror of someone noticing! Literally from the next day a massive phobia started and I used to ask to go to the toilet literally every five minutes and make up excuses like I needed a tissue or something just to try and squeeze every drop out. It carried on til about year nine and people obviously noticed as I'd go to the toilet before every lesson started and ask halfway through aswell. I still remember the panic! And my mum used to drive me to a small town with no public toilets and every time we went into this old library of wet myself! Only in that one place but it was ridiculous! I was about 12. I honestly can't remember how I got past it. Is definitely go for some CBT, it's helped with other problems

I have this too to a lesser extent and I feel better for planning, so if I'm going out no drinks after x time in the morning, know where the loos are, or if its an outside walk look on Internet to see if there are bushes enough, have money for pay toilets in all bags and car. Have a shewee but never really need to use it. I was really anxious when younger but having kids and dealing with their toilet emergencies has made me a lot more meh, there's always a bush, wall or tree. I also use that trick from pregnancy to tell myself I'm fully empty, have a wee then stand up and rock hips and then try again.

Have you tried sertraline?

I have pure o, a form of ocd. Similar toilet issues due to claustrophobia and ibs.

I constantly check traffic if I'm out do that I don't hit traffic and then have no access to a toilet.

Currently, if I go anywhere I have to think about what toilets are open and have back up in the car... a bucket and loo roll.

I fully understand where you are coming from.

Taking sertraline has helped stop the obsessive thinking about where is the toilet, and Cbt helped with coping strategies.

DD has this and I have IBS, so suffer the same panic over that! We’re a right pair! You have some good suggestions re the long term. In the short term, I second what a pp said, wear something like tena lady. They’re a bit bulky but it helps to calm the panic knowing that you have protection. You can also get beta blockers from the GP that helps with the panic symptoms. I had them years ago when I first got IBS. If you can break down the panic cycle a little, that will help in the long term. Both DD and I do make sure we have access to a toilet wherever we’re going but we don’t get too panicky about it anymore.

This was me about ten years ago. It started when I was ill and wet myself on a bus journey. It was crippling and it almost ruined my life because it started effecting jobs etc.

I ended up going to the doctors about it and I was diagnosed with an overactive bladder. Doctor pointed out that the bladder can hold more for longer than we realise,and often the feeling of needing to go when we've just been is because we've "trained" our bladders to squeeze and cramp anxiously even when empty. So the advice was drink MORE water, and when at home, wait longer to go. Then when peeing, keep starting and stopping the flow. This demonstrates the fact that YOU actually have control, not your bladder. Most occasions when accidents happen are due to illness or being a child (as, actually, this thread shows) you won't just wet yourself as a general rule.

The other thing I did was get the extra huge Tena liners, off Amazon, the ones that can hold a full wee. I tipped a glass of water over one at home to reassure myself that it really would absorb, then I wore those when out and about for quite some time - still drinking plenty, forcing myself to wait longer between toilet visits, and all the rest. Never once did I wet one of those pads,because of course I didn't really need them to begin with. I also kept them in the car etc. And I took a short course of anti anxiety tablets.

I also carried a bottle of water everywhere, so that if I did wet myself I could fling it about and pretend it has spilt. Sounds silly but knowing I had something to potentially "cover the shame" with helped.

One of the biggest helps was also going hiking. On a nine hour hike you simply have to pee behind the odd rock or bush, and actually it really helped me take back control in a weird way!

You could also get a SheWee to keep in your bag or car.

And practise "who gives a shit". If you had an accident in public, none of those people would know who you were and they'd never see you again. Plus they'd feel sorry for you - we've all been there. In work, well you know you're not going to have an accident because someone is in the loo for more than 2 mins, but if you did, people are nicer and more sympathetic than you'd think. Like when the scariest girl in school was always the one who lent you a pad in the toilet!

That is a lovely, reassuring post @Voronacirus

I also have an overactive bladder and stress incontinence have real accidents, you have given me more ideas about how to handle it.

I try to be as kind and soothing to myself as I would to my toddler. Accidents happen sometimes, there's no mess so big that we can't get cleaned up.

@Voronacirus i thought the same about suggesting tena pads just for reassurance but I know my therapist wouldn't agree with this as it's a 'safety behaviour' i.e op might be ok short term but if she runs out of tena pads won't leave the house until she gets some even if she hasn't wet them before. It's so difficult isn't it!

I have this. I won’t go anywhere where there isn’t a toilet as I can’t go longer than an hour without a wee. I can manage an hour and a half if I literally don’t drink anything. That includes at home as well as being out and about. I think it started when I randomly wet the bed when I was 10; I got so paranoid about It happening again, or happening during the day that I started going to the loo constantly “just in case”. That was 30 years ago now.

It's nor sounding like OCD to me - it's called toilet phobia which is a bit misleading as it's not a phobia of toilets, it's more a phobia of no toilets!

CBT a better shout than EMDR for this, EMDR is generally for single event traumas (am trained in both).

My mum had this for years and it did severely restrict her life. After seeing her GP, trying various drugs for depression and anxiety, she was eventually diagnosed with OCD, so it sounds like you're maybe at that stage OP, though my mum did have other OCD symptoms, not just toilet issues.

My mum did find help in the end. It was a long time ago and she's no longer alive, so I can't remember all the details, but I think she eventually saw a private psychologist who was an OCD specialist, and a specific anxiety medication (can't remember which) also helped. I think the fact that the condition caused anxiety and depression didn't help, because she spent years being treated for those rather than anyone looking for or finding the OCD which was the underlying condition.

You could try posting on the Mental Health board for more info on OCD, or read more about it to see if it rings bells, but don't rule out that it could be something else. As someone who has had MH issues throughout my life and currently waiting for an assessment for autism, my experience (& the impression I have from others) is that you often have to do a lot of your own research on mental health issues until you get that eureka moment where you find something that seems to describe you. Then go to your GP with the info you've collected and say "I think this is me, and I need you to refer me to be assessed/treated for this specific condition". I just don't think the NHS has the resources or that GPs, counsellors and psychologists are always knowledgeable enough to be able to diagnose specific MH conditions especially within the time limits of NHS appointments.

I have OCD and one of my symptoms is being unable to sleep until I've been to the toilet several times. Even if I've just gone, if a thought pops into my head that I might need it again I have to get up and go again. I haven't had it treated as I have more severe obsessions taking priority, but the recommended treatment is CBT with ERP, which is exposure and response therapy. Some people also find antidepressants help, I hear fluoxetine and sertraline in particular. I was put on citalopram and it made no difference. Go see your GP, best of luck to you.

Yes, before I used the tena pads I thought I didn't want to get dependant on them, but to be honest at this stage it was that or no longer leave the house, so I felt it was the best option. And I neededohysocsl, tangible proof that I wasn't going to suddenly turn into a tap just because I left the house which the dry pads provided. I only used them for about a month, kept a pack in the car for a few months more, and that was it. I didn't put a time limit on using them, but I recognised that as a young woman they weren't something I wanted to use unless I had to, and I allowed myself to do what I had to to regain the semblance of a normal life.

It actually took less time than anticipated. I was SO bad, honestly,but once I reestablished that brain/body link, and sense of physical control (which I hadn't even realised I'd lost) it got better fairly quickly. And it really did dominate my life, to the extent that I missed important events and wouldn't even go to the corner shop.

I would also say that the sense of physical control is worth looking into in a general sense - has anything occurred that has made you feel disconnected with your body? I had put on some weight - not a lot, but not what I was used to - and was dealing with the slowly dawning realisation that a past relationship (which had ended a year or so before, but which I had thought I'd recovered from well) had been emotionally and sexually abusive. I think in hindsight it was all interlinked psychologically.

The other thing that really, truly helped MASSIVELY, as I said, was hiking. It doesn't have to be hiking, but if you can get out for a few hours, somewhere quiet and alone, in nature, where you can conceivable pee behind a hedge, do so. Wear lycra gym leggings and take a spare pair in a backpack. If you wet yourself, these dry out in no time and you barely notice moisture on them. Take water and a pack of baby wipes. Accept and allow yourself to pee behind a hedge, wet yourself, get changed if needs be. Accept that if it happens, it happens, but it's OK because you're prepared and nobody can see you. Try and stay out as long as you can, make sure it's longer than you'd otherwise be comfortable with away from a toilet. I know this sounds absolutely crackers, but it works. I can guarantee you that apart from a quiet pee behind a hedge, you'll come back with nothing soggier than a bit of sweat.

When I was toilet training my toddler I read about how a few days with a bare bum, even it involves accidents, sort of "resets" the toddler's ability to link the physical act with the need to go, and thus potty train. I've probably got that wrong, but basically it reminded me of what was essentially happening when I went on hikes - I had the freedom and privacy to reestablish that natural connection. I know it sounds totally woo, but that's what helped with me. I needed to "prove" to myself that I had control of my body and what I feared was unlikely to happen

*needed physical, tangible proof, ffs phone!

I carry a she-wee and an empty bottle in my bag. Never actually need to use them but it means my emergency toilet is with me at all times!