This is me

[FlossyMoo]

After getting arsey on another thread I inadvertently admitted to suffering from incontinence. I was instantly ashamed of myself for admitting it to strangers but some kind people have encouraged me not to feel ashamed of a condition I have no control over so I have decided to just say it out loud and admit (albeit to strangers ) who I am.

I am 37 yo and after suffering from a stroke late in my pregnancy I am left with incontinence.
The electrical impulses that go from my bladder to my brain don't work properly so I never know when it's full.
I worry about it constantly.
I worry about the smell.
I worry that people will know just by looking at me.
I worry people will judge me.

At the beginning I worried my DH would leave me because his wife had to wear a nappy to bed and unless you have that adult baby fetish it's not exactly Victoria's secret
In the beginning I ended up in hospital twice due to dehydration as I stopped drinking for fear I would wet myself.
Going for an overnight stay at hotels or family members homes is stressful and something I try to avoid.

I haven't had an unbroken nights sleep in years because I have conditioned myself to be a light sleeper so that I wake up when I feel a slight trickle. This means I don't have to have special sheets on the bed or wear a nappy in an attempt to keep some self confidence regarding the intimate side of our relationship.

My DH is wonderful and very supportive but I still feel very alone. So I thought putting it out there may make me see it is not the end of the world. That I am in fact lucky that a stroke has only left me with a broken bladder and not something worse.

If anyone reads this who suffers from incontinence. You are not alone.

You poor lovely bugger. Why are we so conditioned to feel such intense shame about our bodies, and the things our bodies do that we can't control?

It's not the same, but I have psoriasis that first appeared when I was eleven, and I kept it a secret from everyone for three years. I wore long sleeves and pants all year round. My parents didn't know. No-one knew. I still don't know why I felt such shame, when I myself hadn't done anything wrong.

for you FlossyMoo I am absolutely certain other posters will come along in a mo to thank you for helping them to feel comfortable talking about it too.

Brave post.

It shouldn't be because there shouldn't be so much irrational stigma attached to bladder issues.

It's strange that this isn't discussed more on a discussion site for mums.

Good for you for putting it out there

I'm so sorry, you are very brave to post this, well done to you. There are many, many women who suffer with this and related problems and you are most definitely not alone. I have pelvic prolapses (another "taboo") and although I don't suffer with incontinence I know many ladies who do (I belong to an online support group). For many people, there is medical help available but because of the taboo nature of it they are afraid to seek help, you are doing all of them a favour by speaking openly.

A third of women affected according to this;

www.bbc.co.uk/programmes/p00v1279

That is absolutely awful Flossy , I had incontenience after birth of son ( now fixed by surgery ) but remember well how it was - my son telling me that I smelt funny when I got into bed with him for night time story ,the sweating and soreness in hot weather ,having to pack an extra suitcase full of huge Tena pads and worrying about disposal on holiday .

I'm so lucky that mine was sorted . Is there nothing can be done to allieviate your problems ? Have you seen a specialist continence advisor ?

Nappies sound dreadful ,I know the sort you mean ,had to wear one once in hospital and it was a real low spot ! Do you get them on prescription ,is that why nappies and not Tena ?

I so ,so ,feel for you and .x

Flossy - it's sad that it feels 'brave' to post something like this isn't it :(

I'm sorry that you are having to cope with this, but as you say, you had a stroke - you could have been left a lot worse off, so I guess all you can do is be thankful for that?!

Hello everyone.

Thank you so much for your support.

I know it is not the worst illness/health issue out there but I sometimes feel people don't take it seriously and don't understand the affect it has on your daily life. It is something you associate with babies and old people.

I am sorry to read others have had similar issues and felt ashamed of problems. My heart goes out to you.

Ginger I take desmopressin at night which does help but ultimately it is my brain that is broken so surgery wouldn't help neither would Botox injections. It is something I have to live with.

I just wondered if you'd been able to get the most suitable and comfy padding - and have it provided by NHS .

I found good stretchy close fitting knickers and pads worked best for me .

The NHS didn't provide anything at all.

You could make a tent out of my big knickers ginger

I think you should ask your GP about this . Old people who are incontinent get pads on prescription ,though they tend to prescribe the cheaper stuff .

IME Tena really is best ,but very expensive .

We both work and are not in receipt of benefits so not entitled.

I don't have a problem buying them (I think Tena are the best too) but it is costly and I always feel for those who struggle financially as it is something that is a necessity.

Have you investigated pip, OP. It has a section on incontinence and isn't means tested. You sound as if you would thoroughly deserve the help.

www.gov.uk/pip/eligibility

If you decide to apply ( nothing to lose) get help from one of the many amazing charities around in how best to complete the form.

Best wishes. It's great to hear of someone getting on with it despite the difficulties.

Thank you Matilda

You don't need to be in receipt of benfits to get stuff on prescription - desmpressin for example .

You have what sounds like a life long condition and you really shouldn't have to pay for pads

www.nhs.uk/chq/pages/can-i-get-incontinence-products-on-the-nhs.aspx?CategoryID=68&SubCategoryID=154
www.nhs.uk/Livewell/incontinence/Pages/Incontinenceproducts.aspx

IME it's the district nursing team who normally are involved with giving the ok to the supply of products .

but I do realise that cost is the least of the problems you have with this horrid situation you're in !

I receive the desmo on prescription but I was not entitled to the pads. Tbh I do need to visit the GP and get another referral but I have felt so ashamed that unless I had to I wouldn't broach the subject with anyone.

It has been around 18 months since I discussed it with a medical professional. Maybe given my new found confidence it is time I went back and asked politely demanded they look in to this more.

You know ,now that you've typed that you absolutely have to try and get over being embarrased . If it were a friend ,you'd sympathise with them being embarrased but you'd know they shouldn't be .

I know ginge you are right. It would be easier if you lot were all stood in the waiting room encouraging me kicking my ass through the door

Maybe accept the embarassment but tell yourself you're not going to let it get in the way of finding best way of managing your situation ?

Tell the GP you're really embarassed . IMO incontinence really leads to low self esteem ,and I think that's partly where the embarassment comes from .

If it's any help IME continence advisors are really good and will be delighted to work with a young ,motivated person who is fully in charge of all their senses .

And we are with you in the waiting room virtually