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Spincter injury, fistula - support eachother?

958 replies

Cyee · 13/05/2008 20:22

Hi everyone,

Wonderful weather we're having

I am propped up in bed post-hospital and I was wondering if anyone out there knows of, or would enjoy/benefit from, a thread or support site for people who have experienced the above (sphincter damage, fistula etc.) as a result of childbirth.

In my own experience, this whole area is a bit taboo. In fact the consultants reckon there are many women who have some symptoms related to the above, who never seek treatment. The thought of women embarrassed to discuss these matters is awful, yet that seems to be the case.

So - this (while souped up on painkillers) is a call to arms:

  • Is there a site out there for women like us?
  • If not, would you like there to be?
  • Would a thread on MN especially for this, be useful?
  • Would it be useful to share experiences with consultants/physios/hospitals/procedures?

If these matters resonate with you or anyone you know, it would be great if you could point them in this direction. I'm going to post in the 'health' and 'childbirth' sections too.

I know too well the taboo around this. I posted on MN when I got my diagnosis and used a different name...

Hope to hear from some people soon.

Cyee
(successfully repaired as of last Wednesday (fingers/legs crossed))

OP posts:
4jen · 22/06/2008 21:27

I asked my colo rectal surgeon about the pregnancy weight thing and she said it won't cause a problem, I hope she's right. There is a fair amount of research available on the net, just look up anterior overlap sphincter repair and you will find all the info. I hope that a debrief will help you come to terms with what has happened. Took me over a year to get to grips with it all, finally I had to accept that I just couldn't change it. Don't worry you will get there. X

Cyee · 22/06/2008 21:30

Hi all,

Hello Milky nice to see you again. As 4jen said - the PALS route seems to be the best for talking through what happened to you. I'm going to talk to my consultant about it when I see him in August. Like you, I am still pretty flabbergasted that this could have happened. However, the only alternative I am willing to consider is that there is some kind of tissue/predisposition to this type of injury. At the end of the day, people have WAY worse births than mine, and walk away less damaged. In my case I think I am coming to some kind of peace with the idea that it was a combo of genes and quick dilation/pushing. Basically I think I was pushing into myself (waters hadn't broken) for a good while before anyone realised and got the proper pushing going. I know from midwives, including some people on MN, that the pushing bit wouldn't cause the sort of damage I experienced, unless it went on for a serious amount of time (it was max of a couple of hours for me). I really can empathise with the bewilderment, frustration and worry that this causes. It just seems so unbelieveable.

On the matter of how to deliver your next baby, my consultant basically said that the process of repair in effect tightens things up, which would potentially increase the risk of damage following any further vag births. He was also of the view that if I was susceptible to this type of injury in the first place, then why take the risk again? However, he said that there wouldn't have been a problem with me having other vaginal births before the repair work was done.

That said, I know a number of people who have had significant stitches/repair jobs who have either had successful second/third births or have been told there's no risk with a further vag birth.

If I was you (though of course, I am not!), I'd be speaking to consultants about it - especially if your repair work wasn't done by a colo rectal person. I say this because there seems to be a real difference in what gynae/obs people say about this, compared with the colo rectals. Could be just a different view of risk or (in my opinion) could be they know what they're talking about! At the very least I'd be asking for exams and reasons why the various options are recommended/not recommended.

On the lifetime of the surgery repair, again I'm going to speak to my consultant. With youngish, fittish women who have the sort of repairs detailed on here, my understanding is that with diligent pelvic floor work we can expect to retain the benefits of the surgery. Most colo rectal research is not based on people with obstetric injury, but those who have compounded problems, bowel/colon cancer etc etc, and they also tend to be older and frailer. So it is widely acknowledged that if you were to take a generic view of the lifetime of colorectal surgery, there would be a more limited 'shelf life'. If I find more out about this from my consultant I will of course post on here.

More than anything, Milky, I just wish I could give you a hug. Your posts just sound so down and a bit despairing. Do you feel this way? Am I picking it up wrong? I think PALS or some other way of going through your notes is a brilliant start and it may also be worth asking your GP to be referred to a colorectal specialist if you'd like a full MOT with an expert. Either way it feels like it's important that you feel you're doing something about this, rather than being done to. I really really feel for you. Please keep posting.

OK - that was a bit of an essay!

On a lighter note, I had a great weekend, though the LOs didn't quite cooperate with the adults so we're all really knackered! I am now going to beat a path to my lovely comfy bed. Fingers crossed the bambina is as sleepy as me and we get an uninterrupted night. I bet I have just jinxed myself by typing that.

Hope everyone is ok and that you enjoyed the weekend.

Goodnight!

OP posts:
Cyee · 22/06/2008 21:32

Xpost 4Jen
My consultant says same as yours - it's not about the weight of pregnancy but stretching the tissue during labour and delivery.

Take care all.

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milkgoddessmakesthefinestmilk · 22/06/2008 22:41

hi 4jen thanks for telling me that about the weight and that you did finally come to terms with it after a year.

for me its just been a year so i just hope someday i will come to terms with it and be at peace with the fact it has happened.

i guess a part of me feels that, my bodys not up to the job, although i only have to take a look at my beautiful girl to realsie my body is a wonderful thing.
suppose im just a bit mixed up.

cye, hi just wanted to say it was lovely to
come back in here when having a wobbly moment, it feels like a safe haven in here which is priceless and to be able to chat to others that really understand how horrible it is is very liberating.
so thanks for starting this and keeping an eye out for us all.
you are a gem xxxxx

i feel funny, its like i sort of have times when im ok ish about it then times when i feel v bad about it all,
then somtimes i think if i just dont think about it or talk about it or look anything up abou it on the net ill feel better, but then i think im jsut holding it all in and it will all come out later anyway!

im probably not as bad as i sound, but sometimes when i think about it i find it hard to sleep and have nightmare etc.
so i try not to think about it.
which im not sure is helping in the long term, maybe i just need to let it all out it there is no mor to come out iykwim

the thing i find so so hard to come to terms with is i cannot understand why it happened, i feel a strong need to understand.
do you think its best to go through pals or bta?
i suppose pals deal with pateints problems all the time.
what do i say when i ring up?
i suppose im scared of crying when i ring them to tell them i want to talk to someone about what happened.
silly i guess
do you know what happens when you contact pals?
im going on holiday net week and im really looking forward to it now.

think i need a break.
thanks again for being there xxx

milkgoddessmakesthefinestmilk · 22/06/2008 22:44

but also i feel guilty for feeling bad about it as many other people in the world go through stavation and poverty and i sometimes think if this happened to someone in the 3rd world they would be left totally incontinent.
so i should feel so bad, but that just makes me feel guilty for feeling bad,

i dunno sometimes i wish i could turn thoughts off iykwim

anyway just thought i add that.

Cyee · 23/06/2008 08:54

Oh Milky! Do not feel guilty for having access to medical care. All the developments they try out on us will eventually benefit others. Just because other people are worse off than you doesn't mean that you don't have a right to feel angry and upset about what's happened.

I haven't gone through PALs myself - perhaps someone who has could post about what happens? I think Bluestocking may have gone through that route? My (limited) understanding is that it is a very calm and unaggressive way to simply talk through your medical notes and hear why certain decisions about your medical care were taken and indeed if the people involved would make different decisions if faced with the same situation again.

If you are worried about the PALs process or just would like to try a different route first, then I'd definitely recommend speaking to your GP about getting time with a consultant to talk about this stuff. I personally found it HUGELY valuable hearing that it wasn't necessarily anything that I or my midwife did wrong, but that my body was just a bit vulnerable. In terms of your comment about your body not doing it, something Bluestocking said to me really resonated: In this day and age with organisations like the NCT etc., there's a huge focus on 'natural' childbirth and an assumption that it is the most natural process on earth. The reality is that humans are not as well designed as some of our animal counterparts when it comes to giving birth! Birth in a small number of cases is NOT and CAN'T be natural just because of our tissue or our physiology (e.g. a friend of mine had to have an emergency CS because EIGHT attempts at induction failed, her body just wouldn't go into labour!). So I guess what I am saying is: Don't beat yourself up about an ideal that your body has fallen short of. It's the images in the press etc that are at fault, not you and your body. In addition, I am pretty sure (from my own circle) that there are many many women out there who really struggle after childbirth no matter what experience they had. My friends (as a result of me talking about this) have confessed they experience pain during sex, can't orgasm or have psychological problems relating to the birth. Birth is only 'natural' (ie zero intervention, zero pain control, zero after effects) for a miniscule number of women. From that perspective, we are in the majority!!

Anyway, I am ranting. I wish I could do more than just type on here. Please do seek some medical help for reviewing and assessing what happened to you. If this doesn't help, then I would consider counselling, because it might not be what actually happened, but how you feel about it, that's causing you the most upset. Allow yourself the time to grieve over not getting the birth and outcome that you wanted, but know for sure that there is a fair chance there's nothing you, your body or your care team could have done to prevent it. It's complete crap I know, but you shouldn't torment yourself trying to find a reason just in case there isn't a clear and tangible one.

OK I really am going now. Big hugs to you and keep coming on here whenever you need to.

Hello to everyone else as well

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milkgoddessmakesthefinestmilk · 23/06/2008 11:41

cyee, thanks you so much for all your help
i think you would make a supreb consellour.

how are things with you now?
better i hope

im going to find out about pals but im going to take it up properly after my holiday s i dont want to stir myself up ven more before then

blue stockingpoint about we are sold this line of natural chirdbirth and your so right some times for some woman it is just not physically possible

thank you so so so much for your help
i can express it enough
love milky xxx

Cyee · 23/06/2008 13:28

Milky, have a wonderful, wonderful, restful (apart from the small baby part!) holiday. You really deserve a good old rest. Make sure you're as spoiled rotten as can be!

I am doing loads better, thank you. But still feeling the effects every day.

Take care of yourself and come back and tell us how your holiday went and how you're getting on with pals.

Thank you for your kind words too - I think all the ladies on this thread (and any reading but not posting) are pretty darned fantastic. I bet the outside world don't know half of what you and we are going/went through with these pesky babies. We're all troopers!

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milkgoddessmakesthefinestmilk · 23/06/2008 16:24

thankyou cyee.

im sorry to hear your still feeling the effects, but happy to hear your doing loads better

ill come back on here after my hol im not going till net week anyhow.
maybe i will come back with a stronger mental attitude! hopeso

thoughts and best wishes to everyone on this thread xx

Cyee · 26/06/2008 20:06

Bump!

OP posts:
Cyee · 29/06/2008 15:33

And bump again

OP posts:
donsfan · 29/06/2008 18:43

Hello everyone, how are you all doing? I hope everyone is well and having a good weekend.

I have not posted for ages, my PND took a turn for the worse and I have been feeling a bit pants. I have however been reading all your posts to see how you are all doing. It really does keep me going to know that you are all there.

Well, I am off to cook the tea, I am starving! Take care all xx

Cyee · 29/06/2008 21:44

Hey there,

Donsfan, hope your tea was yummy! We were crap and ended up having a bacon sarnie. How bad is that? Does it make it better if the bread has seeds on?!!!!

Sorry to hear your PND has been bad recently. How are you feeling now? How are your other symptoms?

All fine here. Just back from our... ah.. drrrty weekend away. The first time we've been away together since the baby. And of course first time since my op. We haven't been intimate for just under a year. So it was a bit nervy to say the least.

While I'm sure you aren't on here to perve (!!) I guess it's worth saying that... it was ok!! Better than ok - we're not totally there yet and I still have a bit of a mind block. However I do feel different (and did require some additional ah.. moisture!). More womanly etc. So anyone out there who's awaiting the op, thinking of getting help or anyone worried about the aftermath... it's early days for us, but it looks like we're going to be able to get some kind of intimate relationship going again. For those not quite there yet... lots of love and hugs. As you'll know from earlier posts, I have been so down about this aspect of things and worried about its impact on my husband. So I'm not blase. Just so grateful the op seems to have worked and intimacy it at last a possibility again.

Anyway - I hope you've all had a good weekend. Please pop on during the week and tell us how you're all doing. I think there have been some appointments and some exams and I'd love to know (good or bad) how you're doing.

OP posts:
4jen · 30/06/2008 22:46

Good to hear your weekend went well Cyee and you are getting your love life back on track. i think sometimes even if sex is possible and not painful, the emotional side of dealing with this kind of injury can put ladies and their DP's off even thinking about it.

Out of interest ...how long was it between you giving birth and your surgery and how did the hospital manage your healing process without a colostomy?.

Cyee · 01/07/2008 12:55

Hi 4Jen,

Thanks for your post. I absolutely agree on the emotional side. There was no major physical reason behind why we hadn't been intimate. It was purely how I felt about things.

In response to your qs: I had the op 10 months almost to the day after the birth.
I have no idea why I didn't require a colostomy. My surgeon mentioned it as a possible side effect if things didn't go well during the op. It was never mentioned as an option - perhaps they all have different ways of doing it. I didn't even know others had colostomies until the day before my op. My procesure was excision of fistula and the overlapping sphincteroplasty - was this the same as you?

Hope everyone is well!

OP posts:
4jen · 02/07/2008 20:17

Hi Cyee

The reason I had to have the colostomy was to put it bluntly!, they were going to have to make the repair so tight that I wouldn't be able to go in the normal way until all was healed. Many people with fistula do have to have to have a bag, think it depends on the size of the hole and the fact that if its small it can repair itself to a degree. Sounds like you were lucky there, although I don't envy the trips to the loo following the op!. I think I may have had a small hole after the birth ( as wind was coming through) which repaired itself as it wasn't there by the time I was examined 8 months later. I had the sphincter repair op but I was also repaired front to back and a new perenium (sp?) created. It was like being redesigned!.

Cyee · 03/07/2008 15:30

Hi 4Jen,

Goodness, sounds like there are lots of ways to do it. Also sounds like you were dead lucky your fistula healed up.

TMI alert... I was expecting poo like spagetti at the beginning!!! But actually it was ok, though I got bunged up a couple of times and that hurt like heck.

Sounds like we had very similar procedures. I had a fistula excised (smallish and near the 'exit' so to speak! Probably an extension of the perineal graze I had) then, like you, I pretty much had my anal canal lengthened and the overlapping sphincteroplasty done. The op was done via my perineum, so I too have a new one - like a little cornish pasty. It's amazing what they can do isn't it??!!!

Are you all recovered now?

OP posts:
solo · 03/07/2008 16:34

Hi all. I'm really excited to tell you that I should be receiving my Cleo Q on Tuesday next week, so I will commence using it that day hopefully! I will report back regularly as to my results and hopefully, my pelvic floor muscles will be revived and my ' problems' will start to be resolved.

Hope you are all doing ok.x

4jen · 04/07/2008 20:38

Ha ha Cyee cornish pasty is a very accurate description. I'm well recovered now, my last surgery was 10 months ago.

Solo, apologies if it's been said before but is the Cleo a biofeedback excersiser? and is it for front or back?.

solo · 05/07/2008 12:55

4jen. I don't think it is...It is a vaginal muscle stimulator that's all I know. One of my friends bought it after I told her about it and she says it's worked wonders! so I thought I ought to buy one too.
Google Cleo Q and have a look. If you are recommended by a friend and buy one, Cleo send the friend a £17 incentive/thank you either in the form of a cheque or a voucher.
If it works for me, we could all do this and get a few quid back...would anyone be interested?

barey · 09/07/2008 16:54

Hi everyone. Hope you're all ok. I haven't posted for a while as not much going on. But have now been to see the gastroenterologist, had MRI and sigmoidoscopy and it seems that my problems are all pelvic floor related. Was referred to a physio who I saw this morning and basically I have to do pelvic floor exercises 3 times a day but won't see any results for 4-5 months. So all in all it is pretty positive and am definitely on the road to recovery - I just need to work at it a little bit. Bye for now

Cyee · 09/07/2008 20:24

Hi everyone!

Solo & Barey, lovely to see you

Let us know how the Cleo goes Solo!

Barey, that's great news that you finally got to the bottom (sorry!) of your problems. Interesting about it taking 4/5 months to see results. I have to do mine 3 times per day too, so it's good to know it perhaps takes a while to see/feel the effects.

How are you feeling now you have a definitive diagnosis? Good luck with it all!

As for me - all good. I'm healing well and main remaining symptoms are a tiny, variable bit of urge incontinence and a more frequent inability to hold in larger lots of wind! No major embar(ass)ments so far! It was my LO's first birthday today - FIRST BIRTHDAY??!!! How did that happen?! She's such a sweetheart. I feel very lucky indeed.

Hi to everyone out there! Keep posting if you need to. I know the thread isn't moving as fast but I'm sure there are people checking it often if you need the chance to let off steam.

OP posts:
4jen · 09/07/2008 20:49

Hello everyone

I'm interested to see how it goes with the Cleo, the website implies that it does the work for you rather than you having to squeeze as you would with a normal pelvic floor exerciser.

Cyee, from experience I can tell you it will take a few months to get fully adjusted after the op, sometimes it will feel like you really have to go, almost an intense pressure, when in fact you can hold on. Practice holding on at home if that happens, you may be suprised. It takes time to get used to the idea that you don't always have to rush to the loo like before.

barey · 09/07/2008 21:03

I was really impressed with the physio that I saw and never knew that such a thing existed before this.

I think that because it's such a taboo and sometimes embarrassing subject that women are reluctant to bring it up. I think that midwives could definitely highlight this more. In my situation, I think it's only because I'm a hypochondriac that I went to the doctors to check it out but I can imagine a lot of women would just put up with it and it's really not necessary.

The physio could feel a definite weakness in my sphincter muscles so I do feel much better to hear a definitive diagnosis. There is an option of an anal probe to check the strength of my contractions but am not sure whether I really fancy that! Incidentally, when I had the sigmoidoscopy I did decide to be sedated (not least because it meant that I would get to sleep a lot during the day!!) but it was amazing - I didn't sleep at all until later that night and I can't remember a thing about it - I felt nothing either. Apparently the sedative has some kind of amnesia inducing property and is a derivative of the date rape drug. Amazingly effective, although scary when it is used for dodgy purposes.

That's it, ramble over - am off to watch some trash tv!

Cyee · 10/07/2008 08:31

Hello,

4jen - thanks for that - good to know!

Barey - that drug sounds brilliant, though agree scary that it's used for other things... I had the anal probe thing and it was grand. Way better than I thought. However sounds like it's not something you really really need. Maybe worth considering after a good few months of physio. The reason it was good for me was that it tests a number of things: voluntary contraction (pelvic floor strength), involuntary contraction (state of the nerves in that area) and there was also a scan which showed my fistula. Aside from the obviously problematic probe up your arse bit (!) mine was a really positive experience. But I appreciate it's a different situ as I had it pre-op so they knew exactly what they needed to do.

Anyway - what a waffler I am!! Glad you are feeling much better. It's good to have a diagnosis, a goal and a great physio. I completely agree about the fact that hardly anyone realises about pelvic floor damage/help from physios. My physio thinks this is partly to do with the referral system because GPs often only ask about urinary continece post-birth. I don't know about you guys, but I was only asked whether I poo'ed, not what the sensation was around that. So the main way of getting referred to a womens health physio is by first seeing your GP, then a continence nurse, then the physio. It would be infinitely better if a) GPs and midwives asked and advised about potential overall continence issues and referred directly to the physio. Many women (my friends have/have had various continence issues post-birth) don't want to go down that route. The idea of seeing a 'continence nurse' puts them straight off. I wonder what they do anyway...'do you ever leak pee when you laugh or cough?' !!!! OK rant over, and apologies if anyone out there is a continence nurse... maybe the job just needs to be re-branded?!

Have a good day everyone.

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