incontinence as a disability?

[loobylouloos]

Donning my hard hat here.
Since the birth of my son 18months ago I have been incontinent of urine and mildly of faeces – urge incontinence rather than the stress incontinence which is common after child birth. When I need to go I have a couple of minutes at best to find a loo. I have wet myself and soiled myself in public (luckily very close to home when I soiled myself).

It significantly affects my life - I will not go anywhere where I do not know there to be many public toilets, I can’t lift anything heavier than my son, and he is starting to get too heavy, I have not yet gone anywhere unfamiliar due to not knowing about toilets and I can’t do things I used to do such as run, trampoline, rock climb or lift weights.
My job is not office based – I go out to see clients, either somewhere public or their own homes, there is not always a toilet available. I have to go to the loo before leaving for the appointment and know every supermarket/ mcdonalds etc local to where I am going. I have spare clothes and wet wipes in my car.

I have had numerous gynae appointments and 8 months of women’s health physio. It has improved but is unlikely to improve further; surgery is not an option (as it will not fix the issue).

I’ve been back at work 4 months now and it is starting to affect my ability to do my job, I can’t do long appointments or be away from the office for longer periods, I have to leave meetings to use the loo – sometimes every half hour or more frequently.

I haven’t told anyone at work as I was hoping it would improve further but it looks like I’m going to have to. Would this come under disability legislation? I could have reasonable adjustments made (e.g. my boss knowing why I leave meetings frequently, making sure I can come back to the office between appointments etc).

Would I also be able to use disabled toilets? So far I haven’t but I also don’t go anywhere where there is likely to be a queue, as I couldn’t wait in a queue. Many of the disabled toilets have a key – do you have to have a GP letter or such to get a key?
I feel like I’m being disingenuous about it possibly being a disability, but it is really really affecting my life and I don’t know what to do.

I meant to say earlier, I travel a lot too. I'm retired but I go to concerts and music festivals, in UK and continental Europe. I go to more than 80 concerts a year, at least, and manage full urinary incontinence with very little hassle now. Yes, adaptations have to be made, but you get to know your routine and how to plan a long journey. If you take a train (I always do, can't drive any more) even across Europe I book a seat and request assistance through the specialist passenger assistance phone no., not customer services, so I know my seat will always be available. I've got stroppy with train staff on a few occasions but I've never been without a seat. I can't stand up in a moving vehicle, it's too dangerous for me. I'm 70, it doesn't stop me, it won't stop you.

@tabbymog I'm a bit worried-everyone is required to switch to PIP, regardless of length or level of award (unless you meet the "over 65 in 2013" age requirements, in which case I apologise).
You mention that you have carers. This is the thing-the OP can manage her incontinence on her own. If she needed carers or even help from friends/family ("assistance") then she would qualify (just...) but nothing in her OP states that this is the case.

@Piglet

That someone might not qualify in circumstances like this, is dreadful. I had updated myself with a friend in what appears to be a similar situation who gets PIP before I posted.

The OP is unable to do her job on the same basis as someone else in that or a similar job, without having to make necessary adaptations that have quite a large financial cost attached. Her lifestyle, particularly her employment, is definitely adversely affected. Has this government sunk so low?

OP if I've misled you, I apologise, I have a hard time believing I may have. Unfortunately, the long rigmarole of claiming is the only way to find out. Use the paper form, don't do it online, you can't do it thoroughly and in enough detail online, which is why the government wants you to do it that way. It's easier to turn you down.

Toilet issues have been the bane of my life it just isn't a bit off wee op it runs your day, you could inform HR of your condition so they know and use disabled toilets. Don't suffer in silence you dont have to accept this is how you are and apply for DLA/pip

@PigletWasPoohsFriend the thing is that I'm not convinced that the OP would have been awarded DLA either. In general, the difference between DLA and PIP is that using aids and appliances gets you closer to a PIP award whereas it took you further away from a DLA award. DLA awards were granted based on needing help from other people, the OP doesn't need this help, iyswim.

OP, if you were a man and this wasn't post childbirth, you wouldn't be saying it's "just a bit of wee" and would have already asked your doc for a radar key

you are absolutely the sort of person who should use disabled loos

Oh bless you honey,didn't want to read and run.your going through all that on yr own.absolutely yr work should be giving you extra time for loo breaks.im sure a gp note would ensure no awkward questions arose.x good luck x

Unweaved I'm concerned you are putting the op off from applying for PIP, and I'm not sure why ?

Have you tried all the usual crap - cutting caffeine etc ?

I know tena ladies aren't attractive but they hold about 1 litre

I'd be banging on the doctors door asking to see a different specialist

placemarking (sorry)

Unweaved I'm concerned you are putting the op off from applying for PIP, and I'm not sure why ?

I don't think they are. I think they are stating that PIP is extremely difficult to get and you have to meet the defined descriptors and that yes OP should apply but to bare it in mind.

I have incontinence too but it is the other disabilities along with that, that I have that got me my award. My incontinence on its own I don't believe would have.

Looby - I sympathise. I have high blood pressure and type 2 Diabetes and suspect that is th eproblem with my incontinence. Mostly it is at night - just getting out of bed can be an "Oh Shit" or rather "Oh Piss" moment. I am not as 'handicapped' as you so will not go down your route, but it has stopped me going for long walks as cannotguarantee there will be toilets along the way and I always feel I have to buy a coffee in a cafe and then of course , after about 5 mins, want to go again!

Hi there.. OH person. If your employer has OH then definitely go and see them...them can be discrete and should be able to support you. Have a look on line there are various specific organisations dealing with bowel and bladder issues. I just checked and they seems to have both practical info and legal/employment/disability info. Off the top of my head I think it unlikely you would qualify for gov benefits...but you could certainly be considered disabled according to Equality Act and there for reasonable adjustments could be made......

My advice is to do as much as you can to help yourself i.e. Information and practical....so key for disabled loo is good idea..also incontenance pads.

An issue like this can have a big affect on all aspects of life if self esteem and emotions... So you may benefit from support to deal with it i.e. Your employer may have employee assistance programme or Gp can referr you.

I am sorry you are going through this ...good luck

I'm afraid as far as many insurance policies (and that includes occupational ones) incontinence is expressly excluded.

From what you describe you may well not meet the criteria of a disability under the Equality Act namely that it has a "substantial and long term negative effect on your ability to do normal daily activities.". If you are in NI the Act does not apply.

Have you been referred to an incontinence nurse to help you find strategies to manage day to day?

I would see if you can get a referral to occupational health to help you at work. Even if you are not covered by disability legislation it is in their interest to help you be able to do your job.

Fwiw I think using the disabled toilets is completely appropriate in the circumstances. I'm sorry you're going through this

I have crohns and my day to day life is exactly as you've described.
However I do work near a loo and can access any time I need which makes all the difference. Travel is hard, as is going out, I need to know where all the loos are and time my eating & drinking around toilets. I identify with the '30 second warning' too! I carry a clean up kit & spare clothes and have been incontinent on the way to work several times which was mortifying.
Sadly the government doesn't believe that this constitutes a disability .

Hadn't even considered PIP, and giving up work is simply not an option (nor do I want it to be).

Thank you for all the suggestions and advice, I'll look in to it all more thoroughly when I'm at home (rather than on my lunch break!).

To answer a few questions -

Yes, I'm on medication

Have seen urogynaecologist x 2

Have cut caffeine, high acid fruit juices, fizzy drinks etc and follow all such guidelines.

I also have IBS which makes it all more difficult to manage.

I wear pads, couldn't not! Will look in to other things suggested. It's the smell I think I'm most worried about!

You have all my sympathy op. I had an operation in which a third of my bowel was removed. I then, unbeknownst to me, got blastocystitis which made me faecally incontinent and it impacted severely on my life as I didn't dare stay away from home or go on walks, or go riding , or do anything where there wasn't a loo within a minute's walk.
After the blasto diagnosis I was given v strong antibiotics which worked, but my shortage of bowel means I can never be certain and I've had some unfortunate occasions.
If I know Im going somewhere without a loo handy, I use a glycerine Suppository and go before I leave.
I also have incontinence pants which give some protection and I take codeine and immodium to slow up the bowel.
It's a ghastly problem to have and also it's not something one can discuss beyond very close friends and family as it's embarrassing.

I have managed employees with similar problems and made adjustments. It was all done very sensitively.

Simple things like having access to washing facilities can help make things more bearable.

Hey op,

I have IBS which is counted as a disability by my work (as the occupational health assessment noted that without medication I would be seriously affected in my ability to complete normal daily activities). As far as I'm aware the assessment should be the same for chrones and incontinence. I wouldn't be eligible for PIP but that doesn't mean I'm not eligible for work place adjustments.

My work make adjustments such as not sending me to locations without a loo.

Good luck!

If you are worried about smells and you cant get a proper wash baby wipes in your bag or any kind of wetwipe you can get antibacterial ones in handy size i use them

Tabby - PIP applications cannot be done online. There is only a form which the applicant has to send off for.

I'm so glad I clicked on this thread. I've had urge incontenence for years and it's actually lead to me becoming agoraphobic - I was too scared to go anywhere in case I wet myself. After having done so on numerous occasions. I had no idea it was classed as a disability - or that people were so sensitive about it - I haven't told anyone! I mean, they know about my agoraphobia but not the reason behind it. Getting treatment for my agoraphobia has never been successful because I've always felt that until I can confidently been in control of my bladder then the problem is going to always be there.
Unmumsnetty hugs OP, thank you for starting this post and I hope that you continue to work through your bladder issues

Many hugs, OP. It's not silly at all and hopefully your work will be understanding. Def get advice about applying for PIP. My bladder/pelvic floor/bowels aren't the same at all after having DS - I had surgery to correct a rectocele caused by forceps delivery, and things still aren't great down there, though it's more stress incontinence than urge incontinence.

We don't seem to be very evolved as a race when it comes to childbirth! Damn our massive brains and tiny upright pelvises!

OP I am fairly sure that incontinence is regarded as a disability. When I attended an ESA assessment 18 months ago,I was asked a few questions regarding incontinence peoblems,mainly because my disability makes it very difficult to get to a toilet quickly, i.e. I stand up and don't realise until I'm upright that my bladder is full to bursting but my legs won't work properly In order to get me to a toilet in time. So the assessor noted down that I had 'bladder incontinence' issues.

No help with the benefits part of it but please go back to your GP for referreal to a urogynaecologist, there must be something they can do, there are many procedures nowadays that can help with these problems x