Spincter injury, fistula - support eachother?

[Cyee]

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))

Hi Barey and hi all

I think you're right - a lot has been said on here and hey who can blame us for not wanting to dwell on some of this stuff.

I am mainly on this morning with a bit of TMI... look away now... I put a tampon in this morning!!! And it didn't fall straight back out again! First time since LO was born and of course first time since op and it was actually ok. I have felt so broken that I just didn't want to go there even though I hate hate hate the alternative. So I am feeling really pleased that things seem to be healing.

The other message was to anyone lurking out there - if you'd rather not post on here but if there's anything about my own experience that you'd like to get in touch about, please feel free to CAT me, which (I think) is when you amend your profile to allow sending and receiving messages. MNHQ then forwards your email to me. I hope this doesn't sound arrogant, I am not making myself out to be some expert (far from!) but I know myself that posting on here isn't for everyone. It took me months to pluck up the courage to contact a lovely MNer (who's also been on this thread) to ask about her experiences. How things have changed. From shyness to bums, tampons, sex... Maybe they took away my inhibitions along with the fistula.

Hello and best wishes to everyone. Best of luck tomorrow Barey - keep us posted! Are there any other updates out there? I find it hard to keep track, but I think there were a few appointments coming up?? Hope they went ok.

Hello!

This is my first post on mumsnet, and I am a wee bit nervous about it! I would like to thank you all for starting and continuing this thread, I have just found it and am so relieved that I am not the only one going through this type of situation.

I had my DD 7 months ago, a straight forward birth, no forceps or anything really but ended up with a 3rd degree tear and was taken to theatre for spinal and repair job. I am still having some major problems as a result, I can't sit down for hours after having a poo, I bleed and tear and ruin my mascara as I cry evertime I am in the loo (sorry if TMI) also sex is really not happening. I am having flashbacks and mental dreams hence the fact I am typing now and not sleeping. I also have post natal depression which is improving but I wonder if it is related to the tear.

I had a check up at the hospital after 3 months but as someone else has said I didn't get examined. I was really wanting to say thankyou for letting me know I am not alone and how long should I wait before I venture back to the GP. I know it will take a while to settle down but it is now 7 months....

Sorry for the war and peace type post, thanks for helping x

Hello and welcome donsfan - I am SO glad you found this thread and really glad it's helped you feel that you're not alone.

I am so sorry to hear about the problems you've been having. In my humble opinion I think you can and should think about visiting your doc to tell them how things are. When did you last see anyone about this? 7 months is a very long time for recover I think. I'm sure the doc would want to know about the pain, bleeding and tearing, especially in case the repair op didn't quite go to plan. TMI alert: Can I ask a personal question - are you on anything like Lactulose solution or Movicol for keeping your stools soft? This can make a MASSIVE difference for the pain. After my op they gave me lactulose so pooing wouldn't hurt so much, and the main problems I had were when I didn't take it. Even though softer stools can be more difficult to hold in, they are a lot easier to pass and maybe would help your body recover?? Are you on anything for your PND? or are you taking any medications that could have a slight constipating effect (e.g. codeine-based drugs and I think some anti-depressants). Have you ever had any physio or had it suggested? Sorry if I'm teaching you to suck eggs here, I guess I'm just going through what they ended up doing with me, though I know it's really not the same for everyone...

I can't imagine how hard this all is for you, especially with PND. I really feel for you and I hope you have people around you who're looking out for you.

I really really think you should visit your doc for some support and some peace of mind. Take care and keep posting on here!

Hello everyone, quick update on me. Rather than bore everyone to tears, a quick recap so far. Had 3rd degree tear 2 years ago, took ages to heal, kept getting infections and so on. To cut long story short still dont feel 100% have been left with constant pain and itchiness around the bottom area. When you put it on paper doesnt sound so bad, but when you're living with it 24 hrs a day it really gets you down. Walking is the worst bit, everything rubs and I just want to scratch myself to death. It stops me doing things like going out for walks with my daughter or going to the playground, anything to avoid the pain. Saw gp after gp who prescribed creams- they didnt think it was related to the tear. Paid privately to see 2 consultants, 1 said I could have undissolved stitches causing the problem another said it was scar tissue. Saw another gp a couple of weeks ago and broke down, she referred me for a scan at the hospital. Had the scan last week (was v impressed by the speed) and was told definitely not due to stitches. He said it couldnt be scar tissue as the pain I experience is external. Have to go back for a flexi-signiospocy (dont know how its spelt!) but doctor said hes confident its a dermatoligical problem. I just want this itching and pain to go, its blighting my life! I dont see how it can be unrelated to the tear, pre child I never suffered like this and ever since having her I have this problem. Even sitting here typing this I feel like I have got lots of little thorns sticking into me...

Welcome to all the new people! I know this thread has really helped me and made me feel less alone.

Hi Cyee - great news about the tampon! Oh poor you donsfan - you really should go to the doctors again. I can really see how it can take over your life and really feel for you. I am feeling like a bit of a fraud as am not suffering anywhere near as much as some of you but it does occupy a lot of my waking thoughts.
Anyway, I went to see gastroenterologist last night and he thinks that it is pelvic floor related. Am having a sigmoidoscopy in a couple of weeks and an MRI scan on Tues (to rule out an back problems). I may also have to have physio. So quite positive really I guess and not an insurmountable problem. I just keep thinking they will find something sinister... Presume some of you have had this procedure or a colonoscopy. Were you sedated for it? If not, does it hurt?

Hi all!

Sigmoidoscopy? That is a spectacular word! I am going to read about that one! So are you both (Barey and DaisyM) having the same thing done? It sounds really positive for you both - I'm so pleased! The appointments have all been pretty speedy etc.

I didn't have that, but having read about it now (isn't google great?) it sounds like the camera/probe is quite thin so hopefully not too nasty. I had anal exams and probes etc and it was better than I thought. I'm sure they'll sedate you though, if needs be. I hope the exams go well.

So how are you feeling about things DaisyM? Your symptoms sound just terrible, really sore. I really feel for you and it's terrible that your limited when it comes to doing things with your daughter. You could be getting close to a real improvement in your symptoms though.

Barey, you need to stop thinking the worst!

You'll both have to keep us posted!

Take care all!

Hi everone, thank you for your responses and the warm welcome! I am really sorry for my first post, I just seemed to rant on and on!! I think it was such a relief to speak to other people who actually know what I am going through! Everything just came flooding out!

To answer your questions, I am taking Lactulose, plenty water and heaps of healthy veg. Doing as much exercise as poss but that is really just walking- that counts though eh?! I am on meds for my PND I never thought I would say this but they are wonderful wee pills! I have a fabulous husband and family and my GP has been really good with the PND. I think I will book an appointment to see her about all the other stuff. I didn't want to waste her time but having gotten your responses I think I should.

Thank you all again so much, hope all is well with you all and hope all the procedures go well. x x

Hello Donsfan!

Don't be sorry about your first post - I don't think it was ranty at all. Ah sounds like you have a fab set up with great support!

My GP pal told me I could take other things with lactulose that work in a different way but don't cause explosions (if you know what I mean!). Movicol is one I think, maybe worth asking your doc about when you have your appointment.

Best of luck with your appointment and keep on posting. Would be great to hear how you're getting on.

Take care all and have a fab weekend. I'm off to Dublin for a girlie weekend. Looking forward to the cava and the lie ins... but will miss the hilarious 11 month old!

Hi again!

Hope you have a fabulous time in Dublin! Thank you for the top tip about movicol will ask GP when in next week. Enjoy the Cava, I am off to have a cheeky beer and to catch the end of the France- Holland game!

Hello, yummy mummies with sore bummies!
Cyee, thanks so much for starting this off. I like your idea of a "childbirth can be a bum deal" site for support. Do you know, I had exactly the same experience with the Ethiopian fistula hospital site - I remembered seeing a doumentary about them years ago when I was just a girl, and thinking "thank heavens that can't happen to me, how lucky I am to be living in a developed country blah blah blah!" And then after my son's birth, googling fistulas only to be told that the only happen in poor benighted areas of the world. .
It would be great if we could get some of the wonderful and sympathetic health professionals that some of us have been lucky enough to deal with onto the site with info about how women can take charge of this situation and get their lives back on track.
As a total aside, when I was in hospital for the repair, I met a woman who had experienced damage to her sacral nerves thanks to a botched episiotomy, and who had had no control whatsoever over voiding her bowels for more than a decade. She was having an electronic device implanted into her back to keep her sphincter closed, which she would operate with a sort of remote control - she was great fun, and came up with some awful hospital humour about "up and under" garage doors, and not wanting her son to get hold of this particular remote!

Hello all,

Good to hear someof you are feeling a bit better and others just feel it's good to talk. I am still waiting for my scan, it was cancelled due to a conference (obviously it is more important than my incontinence problems!) But I'm off to Ireland for my babies christening and my 30th on Wednesday - wasn't going to have it but decided that if I dont, I'll have no fun at all this summer and if i have the op then I wont be going anywhere.

I hear the little man better go....

Hello everybody, pleased this thread is still going strong!
Still waiting for my appointment for the Sigmoidoscopy, keep running to the door every time the post arrives (well, as fast as my sore bottom allows!) and hoping it comes through soon. Starting a new job tomorrow (yikes!) so hoping to get the appointment through soon to get things moving. Pain has been a bit better today, managed to walk to the park just wish everyday could be like this! Have taken some steps to try and improve things, have stopped using bath oil in the bath, using only dermatoligcally tested washing powder etc but still struggling to believe this bottom problems isnt related to the tear... will be interested to hear what the dermatolgist has to say on it when I get to see them...

Hope everyone had a good weekend and is feeling OK?

Hello all,

Lovely to come back from my girls weekend and see a few more posts on here.

DaisyM - good luck with the new job tomorrow!

This is really just a quick post because I asked my physio about the Cleo Q. She hadn't heard about it but posted on a physio forum. There was mixed feedback but the main feedback was around the price - they all thought it was expensive and mentioned one called a NeuroTrac Continence which is less than £70. The Cleo is £170 I think. So in case anyone has read down through here and thought of the Cleo it might be worth looking into this other one. All the physios who replied to her post said that they'd generally recommend/prefer someone coming to them for advice first, because these devices (electronic stimulation of pelvic floor) are sometimes better at improving some problems better than others. So they definitely weren't overly optimistic about these devices vs the hard work of our daily routines of exercises.

Anyway.. quick post?! Just thought it was interesting enough to share.

Hello Bluestocking! Your and my experiences are so scarily similar it's amazing! I also met a woman getting exactly the same thing done (remote control), except this lady had lived with the symptoms for 20 years before even seeking help and had gone through a further 10 of treatments. Thankfully this seems even more rare than what we're all going through. Crazy! It's amazing the things they can do these days.

I had a really lovely weekend... got to bed at 6am on Sunday morning - rock and roll. I am suffering now though. I don't have the stamina I once did... sighhh...

Have a good day

Glad to hear you enjoyed your weekend Cyee, 6am!!
11pm and I think I've had a late one!!!

Anyway it's approching that time now, think I'll head to bed. Have been packing for my trip and it's hilarous when your baby has more clothes than yourself?!?!

Thanks Cyee! New job is... interesting, will have to wait and see I guess.

No appointment through yet, bit disappointed especially as appointment for scan came through so quickly, assumed this one would come through equally quickly! Sounds like theres lots of demand though for these sigmio thingys.

How is everyone else feeling?

Hi everyone,

DaisyM - is the job good interesting or bad interesting? I hope good interesting!

Know what you mean about being disappointed with late appointments. I saw the gynae really quickly and assumed the next one would be as fast... not so and I felt gutted and impatient.

DMCT - have a FAB time in Ireland. Where are you going? Are you Irish (I am!)? Look at you with your 30th as well - really enjoy it - you are a yummy mummy remember!!

How's everyone else feeling? Good? Bad? Indifferent? Any feedback on the Cleo (was it Solo who was going to buy one?)? Any appointment updates? Anyone want to winge?

Job interesting in a bad way... but then I am always crap with new jobs, normally takes me about 6 months to feel settled and a year before I feel really comfortable! Applied for this job specifically because its 3 days a week and wanted to spend more time at home, was working 4 days in old job which I found to exhausting!

Just wish I'd told the consultant how bloody serious this condition is, I did say I'd been suffering for over 2 years but should have said its having huge impact on my life etc This would have made him tick the '4 week' box to get the scan rather than the routine '8 week' box he did tick! Had fantasties about buying tip-ex in the hospital shop and selecting the urgent box but wimped out! Maybe there'll be a letter when I get home tonight...

How are you feeling Cyee?

Hi DaisyM,
Oh that is frustrating - you should have got going with that tipex!! 3 days a week sounds great.
I am doing well thanks. I've been properly back at work for three weeks now, though at home today with poo-sodden bambino. Bless her.
I have been a bit remiss with my pelvic floors though I know that's the key thing now. Control is fine unless I wait too long despite the urge... oh and my farting is slightly uncontrollable at times, which isn't great when at work! Thank god I'm in a job where I have to talk a fair amount!
But I'm back in g strings and physically feel comfortable. I haven't done the deed yet, but definitely thinking more about it now and may do more than think about it over the next few weeks. I am both hopeful and bricking it all at the same time, if that's possible...! Sorry for TMI!
Take care all

Not to TMI at all, I remember doing the deed for the first time after giving birth it hurt like buggery and was even more painful than giving birth, this was because little did I know I had a roaring infection and had loads of scar tissue which had to be removed... Hope it goes OK for you, lots of wine maybe?!

Have been remiss with my pelvic floor too, must start them up again. Sometimes I have to literally push my daughter aside when shes in the loo so I can go, when you have to go you have to go...

Hope your baby gets better soon, I remember always having to take time off work for my daughter shen she was around 6 months, she was always ill.

Hi All and well done Cyee for posting this subject.

Mine was a failed ventouse then forceps delivery, no episiotomy. Was told I had 2nd degree tear, small stitch put in. Wasn't told what was going on at all at time of birth, didn't even know forceps had been used until I was discharged and read it on my sheet. Spent months coping with urge incontinence until I had enough of being fobbed off by midwives, G.P. etc and got referred to colo rectal surgeon. 11 months later sphincter repair op perfomed and had to have temporary colostomy for 6 months. Colostomy was reversed last summer and things are much improved. However the effects of the surgery will only last 5-10 years I have been told. Turns out I had a 4th degree tear after all!.

I anyone wants more info on the surgery, tests etc feel free to email me at [email protected].

Also if anyone has been pregnant after a colostomy reversal please get in touch.

Welcome 4Jen - glad to see you on here, but sorry to hear about your experience.

I didn't require a colostomy for mine and haven't been told the 5-10 years timeline. That's not long at all, is it?

Are you already pregnant or planning it? How long ago did this all happen?

Take care everyone and have a great weekend. I'm off for a boozy (theme here?!) NCT weekend. Yey!

Hi everyone, Glad to see this thread is still going, im so sorry than any of have to go though this or face these problems?

4jen, may i ask, does the sphincter repair op only last 5-10 years? i also had 4th degrre taer and sphincter repair op, but it was done straight after the birth.

personally i still feel im having problems emotionally and phyiscally, dd is almost 1 yo now.

im thinking about going to speak to someone about what happened to me and why.
they told me after dd was born there was no reason for it apparently
baby was 8, 4 and a half
water birth
just gas and air though the labour
i honestly do not know what went wrong
i just cannopt believe it happened for no apparent reason.
i cannot accept it.

how do i arrange to talk to someone at the hospital about what happened? via the hv gp or hospital direct?
or should i ask the bta to help me?

if i did ever have have another baby would i be aloowed as such to have a home birth, or are the risks too great.

this is such a shit thing to happen and its so difficult to get over it.

Hi ladies

Cyee

My baby was born March 2006. Not pregnant yet just considering it and if I do have another it will be a C/S. Hope you have had a good weekend btw?.

Milkgoddess

You can go through PALS at the hospital and arrange a debrief with the midwives/consultants etc if you want to discuss it. Usually after bad tearing a C/S is recommended for future births and having lived with incontinence I can tell you that there is no way I would risk further damage with a vaginal birth but who knows?, I'm sure there are people who manage a natural birth without further problems. If you do have a debrief you can discuss future birth options with them and see what they recommend.

With regards to the op only lasting 5-10 years that may be something you weren't advised of if the the repair was done straight after birth as often it is a Ob/Gyn consultant who will carry it out and they maybe aren't as up on the research as a Colo Rectal Surgeon. That is just my guess btw!. Not forgetting the fact that you will have just given birth and there is so much going on. The advice I got post op is lots of pelvic floor exersises. You can also request physio if you feel things aren't as good as they could be.

hi 4jen, thankyou for your reply,
yes i think ill ask pal to arrange something as im just not getting over this

so do you think we will need another op in 5-10 years?
sounds like it
thanks for the truth though, i always prefer to know the truth.

4jen when considering another baby, do you think just the weight of carry a baby around could cause any damage to the sphingter?

ive thought about it alot and although i would far far prefer a vaginal birth, im not sure its worth the serious consequences