Double incontinence

[StillSuffering]

Hi, I've posted on here in the past but have changed name.

I just want somebody to talk to really. I'm struggling with this so called life that I'm living.

I had my 2nd baby 5 years ago now. 'normal' vaginal birth. Left with anal & urine incontinence.

I've been through physio & have just been signed off as there's nothing they can do. I had an op with the colorectal team which stopped a lot of the pain, & reduced my skin tag so I'm incredibly greatfull for that. But I still poo myself. When I questioned this I got told that it was never supposed to stop the pooing myself. (I thought it was)

I was discharged from colorectal as 'Its just what happens after birth'.

I've just been re-refered to them.

I saw urology for about 5 seconds where the consultant sat down, drew a woman & explained that I could have the tape to stop the urine leakage but they aren't available right now & anyway I have to sort my weight out as I'm getting fat. He yawned the entire way through.
When I told physio that he didn't examine me they paused then said... 'He would of examined you' !?

I've just been re-refered to him again & seeing his name fills me with dead.
I'm not seeing him again. I refuse.

I did the urodynamics test which by some miracle I didn't wee myself. So that was useful.

I wee myself constantly. I can't wear pads all the time as they rub & make me sore. So I'm often just 'wet' down there. I often go to the toilet for a wee, wipe & there's all poo there. I sometimes have diarrea where it suddenly comes out & goes all over myself, in my vagina & everywhere so I have to clean all that.

I've lived like this for 5 years & it's fine, it's just my life. I will never meet anybody, for obvious reasons. It's just me. I'm so lonely.

I was reading another thread about a man who now dribbles urine & 'Stinks of piss' & he has so much sympathy. I got my baby so I get no sympathy.

I'm on another forum & people say that if you don't want sex in a relationship then all you can hope for for the rest of your life is friendship.

I don't even have any friends.

I hate my life & I spend a good portion of every day wishing that I weren't alive anymore.

My kids would have a happier time if our days weren't restricted to where has a toilet, panic If a toilet is shut, having to wait in the toilet while I try & dry myself, having to rush to the toilet when I need to go, & me hobbling around at home covered in sudocrem as I'm so raw down there from the pads.

They would have a happier life with somebody else.

i don't suppose there's anything that anybody can say, this is just a pity party really.

Pip has been notorious for denying valid claims. I have a couple of friends with serious disabilities which impact all aspects of their lives and they were denied at first.

Op I landed here because I was searching for any info/experience here on Hypopressives, and your thread came up. It all sounds horrendous and I’m so sorry you’re suffering in this way. I’m actually currently watching the hyperpressives video at the moment but I think if you register through that link there’ll be a recording. It’s a course that they’re offering for £67 at the moment, seems to be all about the pelvic floor and a way of breathing rather than doing kegel type exercises. The woman seems lovely (she had a prolapse) so I’m sure you could email her and ask if it’s appropriate for your issues. Good luck.

Thank you for the support, Agoddessonamountaintop, I can't afford it right now but it does sound great doesn't it!

DoubleOSeven That made me laugh
That pesky ol' pooing myself!

I was expecting the pip claim to be denied tbf, but I wasn't expecting to score 0 for the depression & feet issues & only 2 for the 'Just wearing pads'.

Actually sorry, it was a different person from the one linked above (her name is Abby Lord). This is the link to register for the recording of the webinar: < moonrise.health/hypopressives-exercise-course-webinar-replay/ >

And I found this as well: < womencycles.com/webinar/abby-hypopressives-webinar-1/ >
I’m sure you’d find her stuff on youtube as she seems to have been promoting it for a while. I’m sure there are lots of other sources as well (as per previous link).

Change your GP, explain why the last referrals weren’t working and get new ones.

I’d also do some research online, there will be charitable organisations for this, it isn’t normal as PP says but it happens and they will be help support you to get a solution. I had a quick Google and the Masic Foundation came up as specifically for woman injured in childbirth, but there are quite a few general continence charities.

I am sorry you are going through this, but keeping pushing at it.

It sounds to me like it might also be useful to go back on anti-depressants for a bit?

Hi OP

I hope all the recommendations of the other posters will help.

Just in case not, please listen to what most people will characterise as a hare brained idea / thought. It's just what have you got to lose.

This will be quite vague but just as a starting point, and I'm sure it's easily attackable by others.

I'm foreign, and my family are Dr's (not in western Europe though).
Health systems in Europe are diverse.
For example in France there is a lot of focus on women getting back their body after pregnancy. Girdles are a semi medical tool as an ex. (Yes yes unfeminist.)

What I would do if nothing else works is research getting treatment in a different country - e.g. France, Spain etc.
It's easy for me to say as I speak the languages.
But you would first only need to learn a smattering in order to start googling.
You would do it for a life threatening issue. So why not this.

Women's postnatal healthcare in the UK is significantly worse than other parts of Europe. France in particular.

There's loads of hypopressive videos on YouTube op, I was looking for myself last night.

Do research challenging the pip denial - help is out there. I'd also speak to charities like crohns and colitis uk about it as lots of patients with those diseases will suffer with incontinence. Fb groups also invaluable. And, of course, you can ask here! I'd set up a separate thread for it though.

(I don't mean to dismiss other EU countries, I just know that France is particularly attentive to the pelvic floor!)

Did you include things skin breakdown as a consequence of incontinence? Make sure you do in your appeal and emphasise the emotional distress.

Bonheurdupasse Thank you, I will have a look but I won't be able to afford it & there's nobody to have my kids... I struggled enough with my last OP which was day surgery. My mum had my kids in the end but as soon as I got home she wanted to leave so I was left alone for the night (not recommended) with my 1 & 4 year old.

I was kept company on here by some lovely MNers whilst I threw up & cried all night. Not a happy memory.

Besides, my overwhelming response to your post was 'Oh, I'd so love to disappear off to another country. Imagine the freedom!' So if I went, I might not come back!

Luredbyapomegranate Thank you, I'm in 2 minds about changing GP. I did contact the Masoc foundation years ago but I could give them another try.

There is a medical condition ( sorry can't remember the name ) where there is a hole in the vaginal wall and the bowel , often caused due to childbirth and can cause leakage of poo via the vagina . Have you been checked for this ?

Double0Seven I have heard good things about France post birth for women too.

I did have a 30 days only thread about pip a few months ago but it wasn't very supportive. 'Doubt you'd get it/don't think it will be easy/I wouldn't bother with your problems/My whoever suffers more than you & didn't get it'. Etc.

I looked it up for you .

A fistula is an abnormal connection between two organs. In the case of a rectovaginal fistula, the connection is between a woman’s rectum and vagina. The opening allows stool and gas to leak from the bowel into the vagina.

An injury during childbirth or surgery can cause this condition.

A rectovaginal fistula can be uncomfortable, but it’s treatable with surgery.

Thanks VictoriaBun Yes they checked this when I had my surgery in '17. The Dr was very dismissive when I mentioned it though & said it was rare.

Bloody hell.

Well, there's us!

Sorry, op, I keep thinking of more to say!

When I was about 20 finally went to the gp about urge incontinence. Female gp couldn't have cared less and told just-adult me I'd just have to live with it. When I summoned up courage to see another gp, they referred me to consultant it was fortunately easily resolved with tablets. So, don't know what was about but as a country we seem to be too readily dismissive about women's health and that doesn't mean it can't be treated. Keep pushing keep fighting.

Double0Seven There is, & you are lovely

Re pip, I didn't send any 'proof' the first time, but this time I have the gynae letter & physio letter about my feet (although it's not great, it doesn't mention pain or anything just says 'This is what it is & this is what we are doing')

But I don't know if I can get one for my MH? My CBT has ended now & I'm waiting for a more in depth course but the letter for that literally just says that I'm waiting for the next stage.

Get gp to include pain and anything missing in a separate letter.

Youve been struggling for so long I wouldn't be surprised if you've become numb to some of the ways it affects you.

Think carefully and make an note of everything. Embarrassment, shame, what you avoid, what you can't do, what is difficult. Think about all your coping mechanisms and what they actually mean- what are they masking physically and mentally?

Go to gp and lay it out. I hate to say it but they still only seem to take stuff seriously if you happen to cry, so if you feel emotional don't keep it in.

Once they know all the details, they can record it and it can be used as evidence. Definitely consider anti depressants again and ask for all and any mental health therapies they offer - cbt again, psychotherapy etc.

Citizens advice and turn2us seem to be good starting points for appealing a pip. I think you can submit a direct challenge within 1 month which doesn't require any further forms if I remember what I read correctly.

And make sure you include things like how it impacts skin and mobility, how far can you go from loos etc. Look up legal definitions for disability as well to inform your response.
Include you feelings and thoughts from your darkest moments- they're valid.

Absolutely appalled you're suffering like this OP. You deserve much more respect, kindness and professionalism.
Have you tried www.bbuk.org.uk for advice?

OP
if it was one of your kids having cancer you wouldn’t give up on the most hare brained idea.
you’d research and make a plan even if it was over 10 years.
be that plan including learning French and increasing your earnings.
getting respite from SS with your kids. (Yes incredibly hard)
etc etc

This isn't normal. Please see your GP and ask for referral to another urologist. The tape they talk about is vaginal mesh. They call it tape to remove the negative connotation to vaginal mesh injury. Mesh, tape, ribbon etc is barbaric and should never have been used inside women's bodies. I had urinary incontinence and had a procedure called a Burch Colposuspension. It is the surgery women had before mesh. This might be an option and a starting point for a conversation with someone who wants to help. Check private health care consultants near you via sites like spire and then Google them with NHS after their names. You have every right to get help and you shouldn't be made to live the way you are. Good luck x

Bonheurdupasse I know you are posting from a place of kindness & I know that I'm in a very negative place right now but that's just where I am... Increase my earnings when I'm signed off sick, one of my children has Sen so is hard to find childcare for, & I'm qualified for nothing?

And no I wouldn't ask SS to have my kids so I could go to another country for surgery.

These might seem like easy fixes for you but I'm not in that place. I've made no secret on this thread that I'm struggling mentally.

Thanks Remagirl I know the 'tape' has bad history around it & that's why it's not in use now. I will have a look for consultants, good idea.

Double0Seven Yes that's probably true. This has been my normal for 6 years.

Since I last posted, I've been back to the GP with more anal fissures. GP put his finger in & I had to get him to stop as I was in absolute agony. He said it feels really tight & will make another referal to colorectal.

These fissures have cleared up but I've been to colorectal today & when he put his finger in it was again extremely uncomfortable & again made me cry. He said I wasn't relaxed & I wasn't breathing correctly but what the hell did he expect?! The nurse was lovely & helped me get dressed & gave me tissues & gave me a little cuddle after & asked if I was ok. She kept telling me to breath but it just hurt so much

I know I sound like a proper baby don't I.

Anyway, outcome from today was all these further tests including a colonoscopy which I'm not having if it's going to hurt like that.

He said there's possible further surgery but nobody really has it, he was very vague about that. He said it may have been there was a tear into the anua during childbirth which was missed (which I queried 6 years ago & was told no) & it's very tight & obviously something happened during childbirth. I know that.

Feeling absolutely horrendous. Sore. Fed up.

He apologized for hurting me but was kind of... 'But it really shouldn't hurt that much'.

Two things:

• I wear pads all the time and have no chafing at all. Try changing the make of pads, or get a referral to what is known round here as the B&B service (Bowel and bladder)
• Can you beg steal or borrow the money to see a true specialist privately?

Your situation is absolutely not normal at all; and nor are you getting the help you so badly need.

Hi Mischance I've tried different pads, I'm very dry down there & itchy due to the dryness I've realised (where my thighs meet the genital area) but also it's absolutely sweat city down there... I think I wrote on here before that I'm not sure if I'm wet from sweat or urine but I've managed ok with the pads recently (just not wearing them in bed & dealing with the accidents) but the pads don't stick after the school run already (so 6-9 am already soaked) because all up the sides of my knickers are wet with sweat.

So I've just worked that out but I'm not quite sure how to deal with the sweat. I'm obviously changing my knickers after the school run but I mean I don't know if there's a way to stop sweating so much.

Thank you for answering me. I just feel horrendous

I suppose he was positive in a way, as he didn't say there's nothing we can do, but I just can't face these finger exams anymore

I have nobody to ask to help with the money for going private.