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.

masic.org.uk/about-masic/

This is a organisation who help women who've had birth injuries.

Write a complaint detailing from the beginning what has been happening, and what medical appointments/ops you've had and what effect they've had. Send this to pals in your local NHS trust gp surgery. There needs to be a coherent message going to the gp and hospital about what you are going through and someone to oversee you getting the help you need.

Not sure if this is of help, but you might be eligible for benefits and under the Care Act 2014, an adult social assessment, so the local authority can provide you with support.

Your water supplier may also give you a discount as your condition means you use more water.

I am so sorry that you are going through this. Yes, damage does happen, but we have the means to repair it. If men had to experience birth damage, then the services would be offered much sooner x

Thank you Gmama that's kind of you.

When I first saw GP/Physio/Colorectal they all, without fail would ask if I had an unassisted birth & I started wondering if they did something to me while I was giving birth that I didn't know about. I tried asking for a scan as I'm told that these issues aren't usual with a 2nd degree tear & they might of missed a third, but that was a firm no.

It's very distressing & also puts me firmly in my place of having no money, no way to afford better care for myself.

I'm crap at arguing my case. I go in all ready to say something then I lose all my nerve & just accept it. A letter is a good idea but I imagine they will say that since I didn't get on with the peristeen & I've got myself fat, then I'm not helping myself.

I know that everything is about to get worse with menopause & I feel like I'll get through & be there for my kids for as long as I can & then I will end it.

Sorry if that's triggering for anybody.

I don't have experience of rectal incontinence but the Contiform pessary is a game changer for urinary incontinence.
www.stressnomore.co.uk/contiform-vaginal-pessary-82820.html?gclid=CjwKCAjwwdWVBhA4EiwAjcYJEHB0d_T9L0r61_C1SomhSbDdFXsl6f4ljcEHGL6s0WFybv5d6B7x-RoCOekQAvD_BwE

I got mine on prescription from the GP. I would definitely recommend.

@StillSuffering

The device the colorectal nurse programmed for me was this one:

https://www.desmitmedical.com/pdf/verity/pelvitone/neurotracpelvitoneeoperatorsmanual.pdf

It's designed to give you half an hour continuous voluntary and involuntary muscle exercises each day. For ever. You don't use it for a few sessions.

This was supplied and programmed for me by the NHS and it works. I've had similar injuries and it frustrates me how few professionals know about the non surgical options.

Can you ask for a specific colorectal nurse referral and question whether this might work. It's not the same as physio or the device physio use to assess.

I hope you can get this sorted out. I've been where you are now and it was miserable. But take heart, I'm mid 50's now and my function was restored decades ago using this device and a bulb enema to prevent further distension and to keep clean.

Douper Enema Bulb Douche, Rubber Clean Anal Douche Men Women for Anal Colonic Vaginal Cleaning Safe Comfortable Douche Enema Kit, 220ml / 7.5oz (Blue) amzn.eu/d/gNPS9vZ

I was also firmly told by the colorectal nurse that this level of damage never improves with manual exercise.

It's not physically possible to do the amount of muscle contractions needed to even start gaining ground. This is why you need the machine to step in for you.

I did half an hour a day for six months before it being noticeable. I continue to do this every single day. The difference is life changing. Because of my nerve damage I still can't easily do the exercises manually.

Sending you best wishes and hoping this thread gives you the new strength to fight again.

If you’re finding it hard to voice things in an appointment, you could ask for an advocate to be with you to help.
Also you are well within your rights to ask for a second opinion from a different consultant.
Your situation sounds awful, particularly that you have just been dismissed without any plan going forward.

I would put together a timeline of events and send it with a covering letter to your GP’s surgery making it clear that you intend to take matters further if there is no response to your complaint.

You mentioned that the doctor forgets referrals. If you download the NHS app it shows the letters, test results, appointments. It would be useful for you to check to ensure referrals have been sent.

I hope that you get referred to a specialist who can deal with your problems. You can now opt to be seen at a hospital of your choice so that would resolve the issue of you seeing your previous clinician.

Good luck!

@StillSuffering I don't think I have the words to say how furious I am for you that you've been consistently treated like this. This is medical negligence.

A couple of additional thoughts:
Speak to gp about treatments for sweating. Apart from the usual reasons for needing treatment for excessive sweating, you have serious complicating injuries and the combination of both puts your health at further risk.

You can also buy extra strong anti perspirant sprays and wipes you could use around (not on) the intimate area-although only if you can get your skin healed and calm.

Do you use talc? It can really help - there's a reason it was so popular with the generations who didn't have effective anti perspirants.

I agree that you need an advocate with you in appointments. Someone who's furious at your treatment - agree with them in advance at what point they step in.

Re. Physio therapy. Your body will have 'switched off' nearby muscles to protect the injured sites. In order to switch them on, you'll need to build new neural pathways which is done through consistency of exercises. It will take time and feel like you're not getting anywhere, but it will happen. Technology to assist is part of this.

Please, STOP apologising and saying that you're being a baby or just feeling sorry yourself. I know you're trying to mentally cope but my God, woman, the condition you've been left in is horrific!

Please keep posting too, talking to others and getting their advice and help is your super power. Look at all the women here who with support finally divorce abusive men - with our support you can find the strength and words to fight your corner and we'll be right behind you!

Thank you 007 You are being so kind to me & I don't deserve it. I honestly don't have that anger anymore, I just have a strange kind of acceptance/sadness that this is my life now. Sometimes I think about trying to meet somebody, I think if I can meet somebody with a kink that likes being wee'd on then I'd be ok, but then I think well nobody's going to accept being poo'd on are they, it's different of you are already with somebody & then this happens.

It just seems like a looooong life that I might have left to suffer alone like this, but it's ok, it's just how it is. I always thought the worst that could happen was a little dribble of wee if I go on a trampoline, as that's all I'd ever heard women say after having babies. But it's that thing isn't it, as long as baby is ok then sod the mother.

I honestly hadn't even thought about trying to do anything about the sweating so thank you for that idea. I don't use talk. There was a thread on here a while back where the general opinion was that if you sat on a bus & somebody got up & left the seat wet with a bit of wee, then you would feel disgusted & they shouldn't of got on the bus in the first place. So anybody who might of had an accident is expected to walk however long home, legs chaffing & bleeding due to the constant dribble, instead of drying themselves as much as possible & getting on the bus so that they can get home. (Just to clarify I'd never sit anywhere if I knew I was wet, but I often don't realise how wet I am)

Society views me as disgusting.

toooldtocare Thank you, the colorectal nurse sounds like somebody who might actually be able to help. I'm so glad you are having some relief.

I havn't seen the physio for years. 6 monthly phonecalls where I tell them nothing is better, & this last time they signed me off. Apart from that I'm left to it. I had the bladder check just before lockdown 1 & I've not 'seen' anybody since then.

Thank you all for talking to me, you are very kind.

I'm so sorry this is happening and that you have been treated with such a lack of care and compassion OP. Please don't give up and keep going armed with some the suggestions others have given.

You are being so kind to me & I don't deserve it

This is so heartbreaking to read. Why on earth do you think this??

Society views me as disgusting

I don't think you're disgusting at all. I don't think anyone reading this does, nor anyone who knows you.

Please, please, please don't accept this as your life. There's always hope for improvement and if nothing else, then there are surgical options like those we've mentioned already.

You don't deserve this! You don't deserve to be fobbed off and left to struggle so much. Dig up that anger again and fight for some justice because you deserve to feel the dignity you've written these posts with, and you deserve to have your injuries healed.

@007DoubleOSeven Thank you so much for your kind words.

I had to leave the thread & I've just struggled on, as I was finding it all too much mentally.

Since I last posted everything's got worse.
I used to have rare days when I could put a pad on in the morning & take it off slightly wet at bedtime, that doesn't happen anymore, they have to be changed at least once in the day.

I'm constantly wet & I honestly can't tell if I'm dribbling wee constantly or just extremely sweaty now. I've sat on a plastic chair twice & as far as I was concerned I was 'dry', stood up & there was a wet patch

I've been to see gynae today. Lady, lovely person & explained everything to me, said she doesn't know what happened to the last 'new' referal to colorectal but she's made a new one for me. She said we will try a new tablet & I need to stick with it, get some more when they run out & not just give up like I did in the past, she did say there aren't many options because the various surgeries that are available, are painful & aren't long lasting, & due to my age will need to keep being repeated. But she said if these tablets work then that should stop the wee'ing whenever I laugh/cough etc & then there will 'only' be the urge incontinence left.

She said sometimes you can do all the pelvic floor exercises in the world & it just won't work, & it was a relief to hear that said.

I'm feeling ok. I'm going to try really hard to take these tablets right & try to make things better & I'm going to make an appointment with the GP about the sweating.

Thank you all for the support previously & I hope you are all doing well!

OP wherabouts are you in the UK? I can't recommend my (private) specialist women's physio enough....

Sending (((hugs)))) thus stuff is Soooo hard to cope with and sadly irl not talked about much, but can be so devastating. I really hope your referral comes through soon.

Thank you colouringindoors. I can't afford anything private

Hi @StillSuffering , I remember you, I am so sorry things have got worse :(

Completely understand that the thread got too much.

Are you happy to say what part of the country you're in? Someone might know of an excellent consultant or advocate within reasonable distance who could help.

I still think its awful you've been left suffering like this and if you want to offload from time to time or regularly then feel free to DM me whenever.

You are not disgusting (and you don't deserve to be someone's fetish either). I'm glad you've found a good gynae who is lovely and honest and supportive.

You know, even if you've had nerve damage, it is possible to build new neural pathways - it takes consistent effort and maybe they won't give you the same function as pre birth, but any improvement is to be looked on favourably. If all consultants reach a point where they say they can't fix it, I'd honest ask about - and take time to consider- whether they'd create stoma(s).

Please do keep up with the tablets. I know how hard it is to keep taking medication when it all feels a bit hopeless and you can't imagine change, but consistency is what makes the difference and it sounds as if how you respond to these will help diagnostics.

Don't give up hope just yet. Your future isn't written yet 💐

Hi 007DoubleOSeven. Thank you for your kindness as ever.

It's so difficult for me, other people seem to take things like this with a pinch of salt but even speaking to somebody about it sends me into despair.

I told her that the GP seemed happy with me only doing the one course of the tablets & she just said it's such a shame I don't have somebody supportive at the GP surgery to give me a gentle push, as they were never going to work with just one course (I didn't know that)

She asked if I'm sexually active & I said no & she said 'What, ever?' Like it's so hard to understand that I might shy away from people instead of wee'ing & pooing on them.

And, it's not just me with my negative thoughts, she explained all the possible surgeries for urge incontinence & wasn't positive about any of them at all, & then said if they can fix the leaking part then I can 'See if I'm happy to live with the urge side of things'.

Who would ever be happy to live like that? Really?
She's obviously ever experienced the blind panic of needing a wee & there being nowhere to go.

Example. We had a bus journey a few weeks ago. 15 minutes normally. Ended up taking 55 minutes whilst we just sat there in traffic. (Turns out the temporary traffic lights by the road works weren't working)

And because I have problems with my feet + my 6 year old was falling asleep on my lap, we just had to wait it out instead of get off & walk. So the whole 5 minute walk at the other end, wee was dribbling down my legs from my pad. And I'm asked, by this lovely gynae, if I'm happy to live with it...

I read everybody's posts & I'm thankful for them all. You all mean something to me

I'm in Suffolk.

@StillSuffering Did your Gp refer you to the colorectal nurse?

I would go back and insist if you can. This is the person you must need to see. They are the sensible gate way to solutions. Life changing solutions.

You don't need to go through a consultant to see the nurse. It's a direct referral.

Hi OP, sending love and solidarity - I'm not going through exactly what you are but I know the devastating birth injury situation well...

Has anyone ever mentioned pessaries to you? I had stress incontinence when coughing this past few weeks and the GP gave me a ring pessary and it makes a massive difference.

Having something like that, or the Contiform that a PP mentioned, might help massively.

Really wish you all the best. I'm sure there is a way forward for you to have great quality of life again, don't give up on yourself, please. Your kids would rather have you than anyone else, incontinent or not <3

I agree with pp about colorectal nurses and they should be able to guide you to / or supply barrier products to protect your skin as well.

Ones step at a time op. You've got a lot going on and i think getting the leaking sorted out is the biggest issue. See where you are once you're making progress- and any progress is going to make you feel more positive.

We're all here for you.

Thanks for the support 00Double0Seven, WoolyMammoth & inloveandmarried. I've never seen a colorectal nurse or been offered.
I tried to ring the drs today but they didn't have any appointments, I'm having trouble getting my oldest to school atm so aren't able to ring on the dot of 8 (which you have to for an appointment) But I will keep trying.

Your nearest main hospital I would imagine has a colorectal nursing team - you should probably be able to find the number on their website (or call switchboard and ask to be put through). I'm sure they'd be happy to answer a few questions/give some pointers if you give them a call.

Hi @StillSuffering , I don't know if these are the same therapies as the ones you've tried but looks really interesting and when i saw it I thought of you

www.kirstyvictoria.co.uk/

www.ukhypopressives.com/what-is-hypopressives/

Thanks Double0Seven. They do look good, I definitely need to improve my overall fitness, I'm stuck in a rut there too atm while I wait for some feet problems to heal up a bit.

I had the letter back from the gynae, she does stress how this is affecting my life but then goes on to say how everything we can try only has varying degrees of success & how I want to be seen by colorectal again 'As the fecal incontinence has become bothersome again'.

Like anybody would ever NOT be bothered by pooing themselves.

My PIP application was denied as all I need to do is use pads. Very dismissive of what I actually go through.

Still, I'm plodding on & thank you for thinking of me

"Bothersome", like fruit flies? 🙄

Fight the PIP denial, I'm so angry on your behalf !