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.

That’s not normal after childbirth. Keep pushing for the help you deserve.

Thanks KangarooKenny but there isn't anything.

I've put on weight (comfort eating) so everybody's going to say I'm too fat. But I wasn't this fat 5 years ago.

It doesn't matter. There just isn't anybody to help me.

When I had a thread years ago everybody kept telling me that seeing a urologist would sort everything, but he did nothing. Nothing.

I'm sorry that I bought up that other thread about the man suffering though. I apologise for that. It's a mean spirited thing to say & I apologise.

Just because I'm suffering I wouldn't wish it on anybody.

Try asking to see another urologist, not everyone gets on with who they have been allocated. You might be better with a junior doctor, more conscientious IMO. No one should have to suffer like this, please keep pushing for treatment.

Have you got a sympathetic female GP you can talk to?

I'm so sorry - it's horrendous that you're still living with this.

Go to your GP and tell them everything you've said including your mental well-being being extremely affected.

Ask GP to make sure you see a different specialist.

Freysimo I could do, I didn't remember his name until I saw it on the letter & it filled me with dread. I felt utterly hopeless after seeing him.

ThePoetsWife I've been on ADs on & off since all this started (off right now) but they never really help. Then I get into the trap of going to see the GP, they up the tablets & that's it.

There is a lovely woman GP but she isn't great at her job (I hate to say that) but she forgets referrals etc then just laughs it off.

I like her to talk to, she's always sympathetic but says 'Just try these new tablets' or 'Just wait for this next referal'.

Thank you for talking to me everybody. I know I'm being defeatist. I've just had enough of this life.

I'm so sorry this is happening to you.

I can't really help with solving your issues, but I'm not sure what your skin care regime is so might be able to help a little with the skin pain from the incontinence?

If your not already doing I would advise;
pH balanced cleanser for washing your down below bits (things like dove soap, baby soap, anything that's pH balanced that won't dry your skin out).
Pat, don't rub dry
Barrier products which are more gentle than sudocrem, products like mediderma ointment or cavilon cream applied after each wash.

This might help a bit. Huge hug for you.

insist on another referral. You can pick a different hospital and see someone else. You don’t have to be referred back to the same hospital your GP normally refers to.

Thank you Cucumbering that's kind of you. I use Dove shower gel ideally but when money's tight then I just get the cheap Aldi shower gel so it's probably not very good for me.

I will look into the cream. I pat a bit then stand with my legs open & air dry (nice image!)
I use the gentle baby wipes to clean myself when I've had a poo accident & again stand & air dry.

daisypond That's a good idea, I didn't know you could do that. The only problem is I don't drive, transport is a nightmare around here & I have no childcare help so have to try & do things in school hours.

Their dad has them every other Saturday but they are back early Sunday & I have to do the school pick up on Friday & drop them round... He did help with having them for some of the earlier appointments (as the colorectal ones in particular were always in the evening) but he no longer will.

Who should I be being referred to?

The physio wrote in the latest referal letter 'To improve her quality of life' & I thought 'I don't have any quality of life'.

Sorry. I'm just moaning I know.

Poor you, you are absolutely right to moan.

Get a good action plan together.

I would ask your GP for a referral to a different gynaecologist surgeon to get your name on the waiting list for that tape op.

As the poo incontinence is not responding to physiotherapy, maybe try adjusting your diet to make your stools more solid.

So aim for fewer foods that cause diarrhoea (sugar, fried food, butter/spreads, fruit, fruit juice) and have more starchy foods such as porridge, cornflakes, bread, plain potatoes.

Make any diet adjustments slowly, not all at once.

If that doesn't help, you could possibly consider asking your Dr if a temporary stoma might help to allow your rectum to have a rest for a few months.

For friendship & support, you could maybe look to join a Facebook group for people with similar issues.

Meanwhile, check your pelvic floor exercise technique (there's plenty online for this) and do your exercises daily. They might not cure the problems, but they will help.

Good luck OP!

This is awful I feel heartbroken for you reading this , that is no life - please keep pushing to get this sorted , there has to be something that can be done .

i know this isn’t much help but it may for the time being , try bodyform pads rather than always , they are much softer and should help for the time being rather than making you sore - I know it’s not a huge help

I hope you get help for this soon

x

I think I'd push for a
Colostomy bag too, in your situation. I know two women who have one, and they get on with it very well, and in each case has improved their lives.
It won't help with the urine incontinence, but it would be one less thing to deal with.
Have you tried Tena pads?

OP I'm so, so sorry you're going through this. If you're in the South East of Englsnd I'd recommend asking for a referral to St Mark's hospital in Harrow NW London who have a good team. I went there after my 4th degree tear......

MASIC are a great charity for women who've been left with issues like yours.

Sending much love ❤️

Oh and a private women's physio is often v good for urine incontinence. If you're near Herts/Bucks, PM me, mine is brilliant

I’d second the recommendation to look at MASIC. They seem really switched on.

Sending hugs. I bet if the blooming specialist was living with your issues he’d be pushing for every intervention under the sun - it is fucking miserable and there’s nothing wrong with you for noticing it’s fucking miserable. Really hope you get to see someone more helpful x

The JR in Oxford also have an excellent colorectal team - both surgeons and nurses. Close family member has been in their care for years.

The dismissive behaviour you've encountered, op, is appalling and I'd be raising a complaint. I think you can also ask to see a different urologist for this re-referral.

I feel so much for you. Its absolutey NOT something you should just be living with and it makes me so angry that doctors have suggested this. No wonder you're struggling to much to have suffered like this for 5 years!!! 😡

Your GP can prescribe barrier creams specifically designed for adults with colorectal issues, which may help you with costs if you use a prescription prepayment card or are eligible for free ones.

Also, although I don't think its recommended by the medical community any more, egg white gently applied to the skin and dried with a cool hairdryer is very healing (as vouched for by Close Family Member mentioned above).

I'm surprised the consultants youve seen haven't raised the option of a colostomy and / or a urostomy as a solution. It's worth looking into and I think there are specific support forums online for ostomies where you can find out more about them / get advice from those who've had them.

It's absolutely not acceptable that you be left doubly incontinent.

Keep going op, there's hope out there still!

Is there any way that you could see a private surgeon? Save or even take out a loan? For something this bad for your quality of life I would pull out all the stops if at all possible and the NHS are doing nothing.

I had horrendous injuries back in the late 90's. Similar outcome to you that I hid for 7 years.

By chance I had a conversation with a friend who had similar issues, it's not as uncommon as we think.

She advised me to see the colorectal nurse for a pelvic tone machine. It's an insertable slender tone with front and back attachments.

The nurse said she firmly believed that to avoid surgery this was essential. To prevent future surgery it was necessary.

It worked. It took 6 months.

I use it every day for half an hour for maintenance.

I clean using a water bulb enema because I have nerve damage and a distended bowel due to not being treated sooner. This is quite easy and stops the soreness.

But I'm no longer sore, and no longer doubly incontinent.

It is possible to fix but physio were not the way forwards as it was a rectal and urinary issue. I'd seen the physio and my GP before I met the Colorectal nurse who gave me a bespoke programmed unit.

Have they suggested an internal electronic muscle stimulator?

Needed to add, if you cut up soft baby wash cloths and use them as pads they are soft, reusable and don't chaff as they have soft cut edges.

Oh I do feel for you. I have a shattered anal sphincter and was suffering like you after 3 very fast births. My problems started post menopause as muscle tone declined.
What has helped..
I saw a specialist physio who used a probe to teach me how to use internal muscles to tighten things up.
She also prescribed an anal wash out kit to use after a normal movement to reduce post poo leakage and silicone plugs to insert to prevent further leakage.
I won’t lie and say I am completely cured but so, so much better.
Diet certainly plays a part my worst trigger is white sliced bread. I had an accident this week after a sandwich and ended up having a wash and throwing my pants away. Hoorah for toilets with washbasins.
There is hope… the hospital I was referred to was Aintree.
I can look up the make of the equipment I was prescribed if you would like.

@toooldtocarewhoknows
It sounds as if we had a similar regime. Life changing isn’t it!

Ask to see a urogynaecologist, refuse to see the one who said this is all part of having a baby.

@Trumpton it does seem like it. There is hope but the help seems very hit and miss and hard to source.

Both my friend and I had horrendous injuries post birth and we both use this method with success.

I recently came unstuck when a well meaning GP took me off my vaginal oestrogen pessaries.

As a result I couldn't use the electronic exerciser as my elasticity dropped. It has all been reinstated by the colorectal nurse who was appalled.

I really noticed my function slipping back so it just shows how effective the regime is.

IStandWithMaya I did 6 sessions of pelvic floor exercises where you put the probe thing inside & the physio checks that you are doing it correctly then leaves you to it for 15 mins, sadly it didn't make any difference.
I do my pelvic floor exercises as much as I can, but sometimes I can barely feel it.

I'm trying with the diet but it's comfort foot all the way when I feel low.

toooldtocare The physio did a few sessions of some electro stimulating thing on the outside muscles but a probe has never been suggested.
I've never seen a corectal nurse just the surgeons. I'm so sorry you had your regime messed up... I have to drink Movicol type sachets daily & I once had those stopped as 'You can't just have them forever'. Well, no, ideally I wouldn't have them forever but it's just the way it is right now. Cue a hysterical phonecall from me where I didn't have any for a day & immediately got new fissures & masses of pain, & another GP let me have them again.

Nat6999 The colorectal surgeon said that. I'd just been referred to the for the 2nd time, I was curled up on the bed facing the wall, he came in, did the exam, put his hand on my hip and said there's nothing more that can be done, this is just what happens when you have a baby. Then he walked out & I layed there looking at the wall I cried. I bet he wouldn't say that to his wofe.
The urogynae said very, very little just seemed extremely bored.

Triptrop I absolutely can't. I have old debt form my past relationship & I'm on UC, I have no money.

Broadswordcalling I used it for a while a few years ago but struggled mentally with it tbh. I tried it in the evening's but didn't like having to spend so long sat in the bathroom, I was just crying & getting into a state about it (just being a big baby I know) it was very sore for me. They had me using the child's size probe but it was still sore.
The physio, after hearing how much distress I was in with it & that it wasn't even really helping, decided that I should use it in the mornings too.

I had a 2 year old & a 5 year old to get to school. I couldn't be in the bathroom for that amount of time, even getting up early, the bathroom right next to their room would wake them up. It just wasn't possible. I couldnt have my 2 year old in there playing with the machine & asking questions.

007 I can't get to that hospital but thank you. I wonder if they can prescribe me a cream to help with the soreness. Unfortunately I'm very sweaty & even was before I put on weight, so it's usually just a mess down there of sweat & urine in this weather.

Verbena I looked at Masic before but can't remember if I spoke to them. I spent ages writing a letter to somebody who was recommended on here & they came back & said they are sorry about my suffering but can't help.

colouringindoors Thanks but I wouldn't be able to get there.

MrsOwain That's nice to hear. I have thought about it but havn't had it mentioned. A distant family member was just upset at having on fitted as he's 'Only 74'. I'm 40 now.
I have to just get the Aldi (nearest supermarket) cheap pads.

Overtired I have to just get the cheapy ones. The Aldi ones are actually nice & soft, I Iike them, it's the amount of time that I'm having them on that causes the soreness.

Thank you so much for all the comments everybody.
I really appreciate them & feel a little overwhelmed with it!
I'm sorry for everybody who has/is suffering too. You are all amazingly brave to of managed with things so well & it's really lovely of you to share your stories with you me to you all.

I will have a think about things. I probably sound like I'm putting obstacles in the way of certain things. The lack of being able to get to any other hospital is really hard.

I've struggled the most with the anal incontinence & I hate that my kids have memories of me crying on the toilet while constipated (in the early days) as well as everything they've had to see me suffer with since. Sometimes I snap at them as I want to clean a poo accident without them both in the bathroom with me, & it's not fair on them.

Their dad left when the little one was 4 months old. He didn't understand the limited things I'd told him about my 'Down there', he said I should tell him every detail if I expected him to care, & was just angry with me that I didn't want sex.
He laughed at me recently when he asked me go go somewhere as a family & I immediately asked 'Are there toilets?'

I do feel like my care has been really bad but it's by so many different people that I feel like I must be imagining it sometimes!
Most recently I had that thing where they put the camera in to check the bladder. (Very painful it was) & he poured the water on & I jumped & he burst out laughing & said 'I havn't touched you yet'. & He was still chuckling when he started.

Anyway, this is turning into the longest post ever on MN. Thank you again everybody, I really appreciate your time & wish you all luck in the future.x

I'm not sure where you're based but you could ask for referral to Miss Carmen Hoh at the Leicester Royal Infirmary. She is a colorectal surgeon who specialises in colorectal pelvic floor issues and also fits under the skin SNS (sacral nerve stimulation) devices that can help with incontinence. There are things that can help you, you don't need to live like this....don't let them fob you off!. I've seen her for other issues and she is lovely