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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:
Cyee · 28/05/2009 21:26

Hahahahaha!! PMSL I would never get bored with you ladies and your raggedy bits. How could I?! Seriously though - I am more interested in your sex lives than my own. Does that make me gay?

Mmmm... that champagne is good... almost as good as the chilled white Gavi wine I am sipping .... oh yes and clearly I'm going for the straw thanks.

Thanks for your crossed digits... though enjoying the wine sufficiently to be happy enough for the waiting game to extend throughout the summer i.e. the decidedly average weather we tolerate between the months of June and August.

OP posts:
Cyee · 28/05/2009 21:26

Meant to add.... cheers!

OP posts:
Jacksmama · 28/05/2009 21:40

LOL cyee of course you're not gay... and if you were, that'd be ok too. No discrimination here.

Cyee · 30/05/2009 01:44

woooo still feeling the effects

OP posts:
Jacksmama · 30/05/2009 16:30

Here, have some more.

How is everyone?

HullabaLuLu · 31/05/2009 10:43

Hey Jacksmama, thanks for the link!

Can I join please? Can I have a little rant about my injuries to get it off my chest?

DD was born in January, I had a bleed on the Wednesday, 3 days before my due date and was admitted overnight. By morning they had decided not to do anything and sent me home but my contractions had started. She was born 6 days later by forceps.

I'd planned to have a waterbirth and done a hypnobirthing course, I was looking forward to the birth. By the Monday I was just exhausted and in pain but my contractions were finally 3 in 10 minutes lasting 1 minute so I was admitted onto the antenatal ward (only 1cm dilated - devastated). I was given pethidine which did nothing but make me groggy and unable to speak properly so when my waters broke in the middle of the night I couldn't get out of bed and buzzed the midwife who shouted at me for being unable to get out of bed and barked "Can you not just put one foot in front of the other". Mortified, I tried to laugh it off but it was so hard to make my mouth do what I wanted it to. I waddle to the toilet and stood staring at it for a few minutes trying to work out what to do. Waddled back to bed but couldn't sleep because of the pain but was so cabbaged I was unable to get into a position to make myself more comfortable. I managed to send a text to DH at about 7am telling him my waters had broken and to make sure he was on the ward for 8am. He said I just looked f*cked. In the meantime I was backwards and forwards to the midwife. I know I must have been a PITA but I just couldn't believe they could leave me in that much pain, leaking amniotic fluid. In the end she ran me a bath just to get rid of me for a bit I think. It didn't help and I having contractions sitting in the bath was hell so I stood up in the bath and leaned against the wall....and woke up when the next contraction came. I was so tired I was falling asleep standing up. I can't remember much of the day except for the only contact I had with midwives was when DH or I went to them. I got to 5cms (14 hours after my water had broken) and the midwife told me that there were no beds in delivery suite because someone who was 8cm had just taken the last one. At 5pm a midwife arrived to take me to delivery suite and I was so happy I sobbed. Everytime I had a contraction my legs gave way and because I'd been admitted for a bleed earlier in the week I was now considered "high risk" so the waterbirth was out. They explained that DD needed to be delivered within 24 hours after my waters breaking so they had until 1am so they were going to put me on a drip to speed up contractions and this could make them more painful (not that I believed that was possible!) so had I considered pain relief. I chose an epidural. I couldn't handle my legs buckling with every contraction and I was desperate for sleep. Anyway, by 2am DD still hasn't turned and I have been pushing for an hour and a half so the midwife brings in an SHO who examines me (but doesn't actually acknowledge any part of me other than my fanjo) and walks out. The midwife looked a bit embarrassed and then followed her out to find out what they wanted to do. They decided to take me to theatre for a forceps delivery. Suddenly the room is full of people and I have a consent form shoved in my face - like I was lucid enough to know what I was signing. I wasn't offered an alternative to the forceps delivery so I didn't think I had much option but to sign away.

They explained in theatre that they were going to use rotational/keillands forceps to push dd back in (thanks very much after all that pushing), turn her around and then pull her out. I had an episiotomy which tore with the forceps and they took a couple of hours to stitch up my 3rd degree tear while DH got to hold DD and I just lay there shaking with all the anaesthetic.

They discharged me a few days later. I was told a physio would see me before I left to discuss my injuries. She didn't turn up but I did get a handy leaflet through the post about a week later telling me how to care for my injuries and giving me a number to call to speak to someone if I had concerns.

Well, yes I had concerns. I couldn't hold in my farts or poo. I couldn't tell when I needed to wee. I was in constant agony. There was no comfortable position to bf DD in, sitting on my stitches was agony and I couldn't stop crying at the thought of having to show my arsehole to a string of doctors and midwives over the coming months. I called the number, no one called me back for a week. I'd kind of figured it out myself by then.

I couldn't understand why they didn't tell me what to expect when I got home - these were horrific injuries, I couldn't walk fgs but it seemed because I had acquired them in childbirth I was just supposed to get on with it. My mum is a nurse consultant with a specialism that covers colorectal problems (although not birth injuries related - more cancer etc) and she cried when I told her I had a 3rd degree tear. My MIL told me that she suffered "exactly the same" tear when she had DH but was fine within a few days (but then she was reading magazines during her drug-free birth and didn't realise she was crowning until the midwife told her ). No one understood and I hated having to explain.

So fast forward a few months, I still can't tell when I need to wee and probably only go about twice a day. I have faecal incontinence and have wet myself but thankfully its not a regular thing. I cannot hold in farts no matter how I try and I do fanjo farts all the time but have no idea where the air is coming from. Pelvic floor exercises have helped with the sensation that my insides are falling out through my fanjo but thats about it. I get shooting pains in my rectum every day and have some "granular tissue" which will need to be removed.

I have an appointment next week for an ultrasound scan of my rectum because it doesn't have a lot of tone. It's a nightmare getting hospital appointments arranged because they won't let me bring DD. DH has no annual leave left because he used it all to look after me in February. We have no family here.

Our sex life is non-existent. We attempted sex once about a month ago and it was so painful. I thought I'd just carry on for DH's sake but he could tell I wasn't enjoying it (the gritted teeth perhaps?) we stopped. I just can't face trying again. So I feel pressure to get back to having sex again, worry about going back to work and being the person who farts in meetings (goodbye career!) and DH is constantly wanting reassurance that we will have another baby.

I can't believe that my life is actually like it is at the moment. I love my daughter but like someone else said much earlier in this thread, when people say "its all worth it to have your daughter" I get upset. I hate being made to link the two things in that way. Its like asking do I love her enough to put up with the pain (or in DH's case, go through it again).

Ok, I'll stop now because I know I have typed loads.

Thanks for reading if you got this far!

HullabaLuLu · 31/05/2009 12:53

Oh my god, my post was Massive. So sorry. It didn't feel that long!

Cyee · 31/05/2009 13:59

Hey HullabaLulu, Welcome to the thread

Don't worry about getting it off your chest. It's better out than in! You only have to scan this thread to see how many times I begin 'This is just a quickie..'! This subject doesn't let itself to short missives at all.

I am very glad you've found this thread but I'm so so sorry you've had such a completely horrific experience. What a total nightmare and one we are totally illprepared for. You guys are still the only people I have encountered who have had similar experiences to mine, so don't underestimate the basic shock and trauma never mind living with the after effects.

While it does sound like your care was HORRIFIC I'd imagine your focus is on getting better. When's your rectal ultrasound? That will give them a really good sense of what's going on with you and will rule things like fistulas/prolapses in or out as well. So as I'm sure your Mum can tell you, they'll know how much exercise can help and if/how surgery is an option.

No one on this thread has had the exact same experience and while I don't know you and your exact situation, I know that mentally I was where you were in about October 2007. I thought my world had ended. It's now a year since surgery and I am contemplating pregnancy again, my farts are under control! (totally get your career concerns - I had about 8 weeks of work to get through pre-op and was sick at the thought) and my sex life is back on track. I know I have been... ahem... 'lucky' in that my op worked first time and not everyone has had that experience, however the theme I'm picking up from this thread is that once the treatments start the majority of people feel much much better.

Anyway I'm rambling and you probably don't need to hear any of that crap - you might only need to know that you're not alone and there are people on here who totally know how awful this is for you. So hang about.. but watch out for that Jacksmama... she got me ratted on virtual champagne the other day

Cyee

OP posts:
Jacksmama · 31/05/2009 17:15

Hi LuLu. God, your story was so very much like mine it made me cry. I responded to your last post on the Farts and Forceps thread... but basically, my heart goes out to you. I was exactly like you - couldn't sit, couldn't stand upright, could only shuffle. Bits felt like they were falling out. Wee and poo and fart incontinence. Sex a nightmare.

I don't know if this will help you or not, but DS is now 15 1/2 months, and most of the above is fixed. I am essentially a graduate from this thread (but I'm not going anywhere, getting Cyee pissed on virtual champagne is too much fun) except for what I posted on the other thread - bladder sensation is shot, my right labia and perineum back to my anus are completely numb from pudendal nerve damage (and unlikely to ever come back, but ho hum, who needs to feel their right labia?), and that feeling of incomplete evacuation.

What I'm trying to say is that the time will come when you will feel better. You're having that rectal U/S soon, and hopefully you'll be referred to a consultant who knows what he/she is doing to fix you. Let us know what is going on - I've had fantastic advice on questions to ask etc so you'll be more prepared for your appointments.

As for sex, it was 4 months before DH and I did it and it was bloody terrible. I think we did it a grand total of six times (and that may be a high estimate) between Jackbaby's birth and my repair op in Feb 09.

One more thing to consider: you will eventually get sorted, but your baby is only five months old and you have been through a horrific ordeal so it may be a good idea to tell you DH to get off your case about having a second baby. He's not helping matters by putting you under pressure, and he's not the one whose bits have exploded. He needs to appreciate that you need to heal both physically and emotionally before you can contemplate having a second baby, and if that takes you a year or two, well, he'll have to deal with it. A three-year age gap between DCs isn't the end of the world. AND if you do bite the bullet and get pregnant again, after what you've been through, you're probably a shoo-in for an elective C-section - if that is what you want. Maybe I'm projecting my own issues here, but I'd have run to the O.R., epidural and all, if the twat MD on call had even mentioned the possibility of a section instead of forceps to me. God, how I hate both of them - the OB and the MW. I mean, hate with an intense bitterness that disturbs me occasionally. I may be all sorted now but between them they scarred me for life. Yes, it could have been worse and all that, but somehow, my brain doesn't think that way. Perhaps more therapy required...

Anyway - I'll stop rambling now. But we're here for you. Seriously, I thank my lucky stars almost every day for finding MN and Cyee for starting this thread. People on here know more about my ragged bits than most of my RL friends!!

kentmumtj · 31/05/2009 20:13

Hi Guys

and hi Lulu

lulu my thoughts are with you, its an awful experience to go through a traumatic birth resulting in us women needing repairs of some sorts...... i do hope once you have had your ultrasound things may be a little clearer.......do keep us posted
as for Jaksmama she is having the time of her life in the sex bed room department now, she had a journey like all of us so stick in there and remeber everything will get better

anywasy says me saying all of the above im still nto better sex is sooooo not happeneing ever again i dont think......since my last and 2nd attempt im soooo sore around my perinium area. It looks red but thats all apart from that it looks normal so im so puzzled by how sore it is......this morning feeling fruity we er ere er er well lets say didnt even get past first base.....the area is now sore to touch with the human hand whereas it wasnt before

think i have to make an appointment at the GP and get me legs open wide AGAIN........ARGHHHHHHHHHH

can i have some alcohol ........please

Jacksmama · 31/05/2009 20:21
Jacksmama · 31/05/2009 20:25

And I just want to add that while the return to funandgames sexual activity was indeed fab, it really can't be said that I'm having the time of my life in the bedroom... I'm still breastfeeding so my libido is in the toilet and half the time I can't be arsed because I'm so tired... so don't go thinking I'm the poster child for red hot nights

corkysmum · 31/05/2009 20:26

Hi all. I posted ages ago, feeling very low, about my anal fistula caused by an abcess in 2006 after my DD was born. Thought you might all like an update, as I have a happy ending for you... After several operations last year (seton thread x 2, fibrin glue x2) numerous infections inc MRSA, reactions galore to unending antibiotics and of course the unique joy that only a pus-leaking, painful,scar-ridden butt can give you, my (fantastic) consultant decided to take the risk of 'laying open' my fistula this January. And it worked!! I have finally healed, and for the first time in years I have just the one bumhole. I have lost considerable muscle tone, but am managing well in terms of faecal continence (only the farts slip out unnoticed). I do apparently now have a keyhole shaped bumhole, which will be with me forever, and that can make things a bit tricky to keep clean, but it's a very small price to pay. Most fantastic of all though is that I am pregnant again - we had been unable to do much trying whilst the fistula was there, but now I am 10 weeks gone and on top of the world about it. My DD is 3 and will be 4 by the time I'm due, a bigger gap than I would choose in an ideal world, but that doesn't seem so important now. I have had to fight my corner at every stage of my bum journey, and it did take far, far too long, but I hope all you lovely girls out there going through fistula hell can take some solace from my story. I am, by the way, pain free - yes, able to sit on the floor, on my bike, on mu husband and even swim... Good luck to you all and all your ragged bits x

Cyee · 31/05/2009 20:45

Corkysmum! I am smiling from ear to ear for you. What brilliant news and thank you for letting us know how you got on. Hurray! And huge congrats on your pregnancy!!!

kentmumtj - so sorry the pain is persisting. It does sound like time for another doc's visit

Take care all

OP posts:
corkysmum · 31/05/2009 20:59

Thanks Cyee! It's so good to finally have some good news to share with you all!

Forgot to mention I will prob have to have c-sect this time, as rectal muscles could not cope with any further damage, but again, a small price to pay. Big change from my lovely all-natural home birth that I had with dd tho!

Cyee · 31/05/2009 22:25

Yes I remember we both had weird experiences - great births, horribly after effects! CS definitely the way forward. Take care

OP posts:
ThingOne · 31/05/2009 23:02

LuLu, what a shocking story. I hope you can get some progress soon.

Corkysmum - sounds good!

Jacksmama · 01/06/2009 01:17

Corkysmum - we haven't "met", so to speak... but so glad for you!! I'm so happy that there are more happy endings!!

HullabaLuLu · 01/06/2009 18:39

Thanks guys! Once I'd posted I told DH I'd found a support group on MN for people who'd been through the same thing. I think he found it bizarre that I thought it was a good thing. He knows I am in pain/angry etc etc but how do you explain fanjo pain to someone who doesn't have a fanjo?

I have my scan next week. Well, it's booked for then but I have no one to look after DD yet. I am working on it. I really don't want to miss this appointment. Can anyone tell me what I can expect? If they find a big hole/nothing at all will they tell me on the day or will I have to wait until my clinic appointment the week after?

I am bf too and I think thats part of the reason I don't want to have sex. I hate having my boobs touched, DD has suddenly decided that chewing my nipples is fun, I still leak milk so don't exactly feel sexy. My hair has started falling out and I am going grey!! Plus DD still wakes about 2-3 times a night so if she's asleep the last thing I want to do is get jiggy - I want to sleep!!

Oh corkysmum, its good to hear that there is light at the end of the tunnel (I am sure there is a joke in there somewhere but I am too tired to search for it) and congratulations on your pregnancy!

Jacksmama · 01/06/2009 21:18

I think no matter how hard our DH may try, they just don't fully get it - because they don't have our bits. Believe me, there have been days when I've wished I could trade with DH for just an hour, not because I necessarily want to experience Life With A Penis but because I'd like him to feel how I feel. Well, felt, now.

Cyee · 01/06/2009 21:40

Just a quickie (!)

The ultrasound was way better than I thought. The implements were much smaller than I was expecting (thank goodness!) and other than the obvious embarrassment it was ok. When I went into the room all I saw was a MASSIVE dildo type thing and I was TERRIFIED it was coming for my behind. It wasn't

In terms of what they told me at the time, they did confirm there was a fistula and they also briefly gave me top line results, e.g. the nerve was not top quality but not in the very poor category. Not that much really. Though I didn't ask many questions as I was in that 'be polite and cooperative in front of the doctor' mode!

Off to bed for an early night now

OP posts:
bubblerock · 02/06/2009 09:26

Sorry I've neglected you all - haven't had anything to contribute!! Off for my op now (yikes) so will give you all the gory details at the weekend!! Be good & save some champagne for me!

Jacksmama · 02/06/2009 15:40

GOOD LUCK bubblerock!!!!!!!!!!!!!!!!!!!! ((((((((((((((((((((((((((((((((HUG))))))))))))))))))))))))))) ))

ThingOne · 02/06/2009 18:35

Good luck Bubblerock

kentmumtj · 02/06/2009 18:44

hey and good luck from me ........

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