Please help - fecal / anal incontinence diagnosis before any pregnancy - utter terror of what pregnancy might mean and life as a mother

[whydidnobodytellme]

Please help if you had the worst kind of 4th degree tears from childbirth and suffer from occasional fecal / anal incontinence ? I need to communicate with people who understand what it?s like for me and I would like to know there is hope for having children without completely ruining my quality of life and sex life. I have asked the colorectal team who are seeing me, they said they can't say for sure what things will be like in the future and that there is no psychologist with a special interest in bowel function in their team - they suggested I could look online for support, so here I am. I have told a few friends but none of them understand what it?s like.

As a warning, I am suffering from shock and depression due to finding out about my diagnosis of incontinence recently, so encouragement is what I need but I also want to communicate with people who know what it?s like and I want to know the facts.

I have recently found out that due to a very rare congenital abnormality i was born with (I am in my 30s now), i have fecal incontinence and this also explains problems with holding wind. I have not yet had any children but would like to and I am told (by the colorectal team I have seen recently for tests and examinations) that my current condition is comparable to someone who has the worst kind of 4th degree tears from childbirth- my internal and external anal sphincter muscles do not form a complete ring and never will. I always knew I was born with an abnormality but my parents and GPs told me I was ?fixed? by an operation I had as a baby. Episodes of incontinence were getting slightly more frequent in the last couple of years (I now realise this was perhaps due to muscle weakness worsening as I was never told about the muscle absence or that I should be doing pelvic floor exercises every day) and I started to contemplate having a baby so wanted to find out more about the operation I?d had as a baby and why I had always been told by my mother I would need a C-section - so my GP referred me to the colorectal team. I have asked numerous GPs previously about my difficult symptoms including urgency, running to the loo and not getting there etc and had been told for years that this was 'probably IBS'- it seems they never checked my hospital notes properly and it seems it was up to me to ask for these, which I have now done and finally understand more.

Due to my current condition (absence of muscle), they recommend a C-section and would not operate on me to improve continence but said pelvic floor exercises may help, which I have to do religiously every day for the rest of my life.

I am struggling to come to terms with the diagnosis of fecal incontinence, and I am terrified about the prospect of this getting worse during and after pregnancy and having a C-section. I am having cognitive behavioural therapy which may be helping the amount of crying i do every day since finding out but want to communicate with someone who knows what it?s like.

Anyway, my questions for those who had 4th degree tears from childbirth are:

1. How does the fecal incontinence from the 4th degree tears / repairs affect your quality of life generally? I already have to allow a couple of hours after breakfast before leaving the house in the morning, due to repeated urgent trips to the bathroom and always need to know where the loos are during the day - apparently this is standard for someone with my condition (previously I thought it was IBS / due to some kind of stress and that one day I would not have to do this, if only I could be stress-free or find the right thing to eat). I can hide the early morning routine generally from everyone except my husband, but I fear it getting worse, either due to muscles weakening in older age or to pregnancy and c-section when I know pelvic floor muscles weaken for everyone.
2. In your experience (I know I could be different), if you already have 4th degree tears / repairs from previous births, does your fecal incontinence worsen during the next pregnancy? How do you manage this?
3. And how about incontinence after C-section / childbirth? Does it worsen? How do you manage it?
4. How is your sex life after 4th degree tears and further pregnancy and childbirth / C-section? My sex life is generally good, but I fear things becoming problematic.
5. Do you know of a psychologist with a special interest in bowel function (I am currently in London)?

Many thanks in advance.

Posting to offer all my sympathies . how awful for you .
I am so sorry not be able to offer any advice .

Has your condition got a name ? Can you google it ?
Sorry [blush} sure you have .

There surely has to be advice out there . When caring for an elderly person I came across a community continence advisor ( not just for elderly ) and perhaps they could help ?

Access was via District Nursing Team ,think you need GP referral to DNT .
My experience based on inner LOndon but should exist elsewhere .

There is a long ongoing thread for women with these issues. I'll try to find it for you.

It's actually a thread for issues relating to childbirth. I'm sure they'd welcome you there though and be able to answer all your questions.

It's called - all Raggedies - the THIRD Ragged Bits thread. Childbirth injuries, sphincter problems, fistulae... all welcome.

I do feel for you.

Is there no way that you are able to have an operation now- regardless of any pregnancy in future? It doesn't seem right that you have to put up with this and from the little I know, I thought it was possible to rebuild the sphincter and make it work properly.

Just to add- have you considered a 2nd opinion and if need be a private consultation? I think it's appalling that you are effectively being refused an operation for this when it's affecting your life so much.

Will your GP not support you in your need for surgery?

The psychological medicine unit at St Marks Hospital only deals with patients with bowel problems, I'm not sure if they take referrals from other hospitals but it is worth a try.

I'm so sorry to hear of your problems. I suffered from IBS for some years, so I do understand the misery these kinds of conditions can inflict on a person, although I understand your problem has a different cause. However, I wonder if the people at the ibs network might be able to direct you to an expert in these kinds of issues. One of their team - Dr Nick Read - is a gastroenterologist and psychologist, although his interest is in illnesses, such as IBS, that have no clear cause, so I'm not sure he'd be the right person to help. Still, might be worth contacting the ibs network in case they know a hospital/doctor who might be able to help you more than the team you have seen so far. It just doesn't seem right that they can't offer you more help.

This is a condition I am fairly sure that can be treated with an operation- rebuilding the spincter.

OP- I don't know what you have been told but reading your post which is heartbreaking, why are your drs not able to offer you an operation now- forget being pregnant etc- but for yourself as you are now?

I think that although you might find psychological help useful, your energies should go into finding a consultant who agrees to operate.

What reasons have they given you for not doing this?

what missbopeep ( and everyone else ) has said x 1000.

Are you in UK ?

Thanks for the supportive comments. I would rather not go into too much more detail but a few things in my anatomy are not quite in the right place for me which is why they can't operate - due to the way i was born. Apparently I am a mild case of incontinence following the abnormalities I was born with, and a veritable success story for the surgeons when I was a baby ? things could have been a lot worse. The kind of incontinence I have now is only occasional as I manage it every day in the mornings by being near the bathroom, and yes it?s completely awful and mortifying when it happens in public unexpectedly, but this is occasional and I understand that how I am now is the best it can get for me. My questions relate to how bad things could get during and after pregnancy and how people manage this ? the only comparison I have is people with bad 4th degree tears and so that?s who I?d like to hear from. I will try posting this on the ragged bits thread, thanks for that, and will look up the ibs network ? thank you. Thank you re district nurse tip too, I will look that up (I find it quite distressing to be compared to elderly people by doctors / when looking up incontinence on the internet, but perhaps this is just something I have to come to terms with).

Are you 100% sure they cannot operate?

I don't mean to sound crass, but having watches series like Embarrassing Bodies and seen people being refused operations by other drs, then offered help which they should have had ALL ALONG, I'm really puzzled why you cannot be 'fixed'.

Have you had 2nd and 3rd opinions? Have you see world experts?

I hope you have, and have received the best advice and treatment because there is so much that can be done now and again (only from my own reading as a non expert) I am sure I've heard about or even seen on TV ops where people have spincters rebuilt using tissue or muscle from other parts of their body.

Thank you but i have asked around in the medical profession, and I am having more tests just in case there is anything they can do. I don't wish to go into detail but there are also internal complications which mean surgery isn't recommended or would lead to other complications. I appreciate your concern and outrage on my behalf but operating options were not my question and it's quite upsetting for me to go through more explanations. At the moment i would just like to find out info on my specific questions about managing symptoms during and after pregnancy and c-section if you already have occasional fecal / anal incontinence. Perhaps this is not something anyone else on here has encountered but i was led to believe that my symptoms are similar to those of someone with 4th degree tears / repairs. For now, that's who i'd like to hear from.

Hi. Although I have no experience to help with your quest for information, I do have IBS so the needing to know where toilets are and urgency issues are sadly familiar.

I do think that the reason several posters have asked if you're sure that there's no surgical solution, is because it seems so crazy and unfair that you should have to suffer like this in an age where medicine has made such huge advances. I appreciate that your personal situation sounds rather unique, and I do sincerely hope that you can find a way to accept the limitations you've been set, whilst never giving up hope that modern miracles will give you an alternative.

Good luck and a ((hug)) from me. You have every reason to feel low, and I hope you have RL support to help you come to terms with such a blow

I'm sorry you are feeling upset by all the points made.

I don't have experience of this but I did have a repair after my 2nd child was born- thankfully not for what you are suffering now, but for uterine and bladder prolapse.

I understand that even carrying a child for 9 months pre delivery can put a strain on the pelvic floor, regardless of method of delivery. I've been led to believe that even with a C-section some women have pelvic floor problems. So...........where does that fit with what you have now? Is this something that has been discussed and if you have complex issues which you've mentioned, are they going to be worse due to the weight of a baby and the position in the abdomen during pregnancy? I'm just asking to see if you have asked these questions of drs?

p.s. Have you googled for support groups for this specific condition? I hope you find someone who can reassure you and give you the answers you need.

You poor thing. You really have been failed by doctors (and your family, actually) for not fully explaining your condition to you from a young age, or adequately following up your progress as you got older.

I also think it's wrong that you should effectively be written off as a hopeless case at such a young age. I understand you feel embarrassed talking about it, but remember it's anonymous here and there's no such thing as too much information on Mumsnet

I've pm'd you.

Hi, I'm currently 19 weeks pregnant after a 4th degree tear 22 months ago during the birth of my DS. I will try to answer your questions as best I can from my experience so far bearing in mind I'm only halfway through my pregnancy and do expect things to temporarily get worse as the baby grows.

Quality of life - so far this hasn't changed. I haven't suffered any worsening of incontinence. It is my intention to invest in tena lady as/when/if required. I always carry a change bag for my DS so if I do start to feel the need then I'll just pop a spare pair of pants in it for me.

I've no idea yet about if its likely to be worse after birth, but this is on my list of questions to ask the consultant when I see them next week.

Sex life - after my DS it was months and months before I was brave enough to try but after the first few times it improved. Its not what it was but that's mostly down to having DS in the house and me being exhausted due to pregnancy. I also have a prolapse and up until a few months ago I had a very painful skin tag where I was stitched (had it removed) so this made a big impact on my comfort during sex. Now that's gone it is better. With an elcs I'm expecting the only discomfort to be around the scar area, without the months of recovery and bruising to my bits.

I've also replied to your post on the Ragged Bits thread.

Hi again and thank you for all the comments and support. I'm sorry to hear that other people have also gone through difficult times in this way but it's reassuring for me to know there are other people who know what it's like and that there's hope. I find it's easy to become overwhelmed and to feel alone with something like this, so am really grateful for all the posts. Also thanks to Londonderrysue above who suggested St Marks, their website has useful info and leaflets as well as contact details.

I find it's easy to become overwhelmed and to feel alone with something like this
goodness me ,I'm not surprised ,it sounds really hard to cope with even if you did have some support .
I take my hat off to you for your stoicism and lack of complaint .

I'm sorry to hear that your problems don't have an easy solution.

Do you have a Radar key (key to locked public toilets)? I've found the key is an absolute lifesaver when I'm out and about, although I have different health issues to you. I think there is also a phone app available so that you can locate your nearest radar toilet.

I had a 4th degree tear following birth of DC1 (now 5). Then surgery. Follow up with bowel consultant and ultrasound showed (too much info!) a picture of my bottom muscles like a doughnut with a big bite out of it, so sounds a bit similar. I managed for a while by taking lactulose to time my morning toilet trips before I went out. It was a big thing for a few months,but it did improve significantly with A LOT of pelvic floor exercises and really focused Pilates.

DC2 followed, now aged 2. A couple of uncomfortable moments in pregnancy, but nothing awful. Planned section, obvs! And lots of pelvic floors and Pilates. But I am more or less back to normal now, along as I keep up all the exercise. It does rule my life to an extent, and I know I will need to keep it up forever, but it could be a lot worse.

I would really recommend any exercise that focuses on the muscles supporting where the problem is. It has worked for me (crosses fingers, hopes not to have to cross legs!)

Thanks also for suggestions of radar key and pilates, i will look into those too. Am now doing pelvic floor exercises many many times every day in the hope that i will see some improvement. I have looked up more about incontinence and see that what i have is apparently 'urge incontinence' (rather than passive soiling), just for clarification, although everything here is very relevant so far. Also, unexpectedly the virtual bunches of flowers on here really cheered me up last weekend! Thanks again everyone.