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))

Oh (sorry... me again).. in terms of the 'why me' which I think of EVERY DAY, and was looking for something/someone that could explain this (and yes, take the blame).

I understand there's research going on to identify why this sometimes happens, especially where there are no contributing factors (for example, I didn't have forceps or episiotomy). There are no results yet, but some do suggest that it's a genetic pre-disposition to this sort of damage, so there's nothing anyone could have done. No real comfort I know. I pumped my consultant on this, whether it was because my waters didn't break til last minute, whether she was delivered too fast, whether I was pushing the wrong way. He basically said that 'natural' (haha!) childbirth is by it's nature traumatic... we're just on the sharp end and see it's traumatic effects sooner than most....

I didn't note this earlier, but Milky I think it was you who mentioned your angel baby. Mine is too... I wouldn't change her or anything for the world. Whenever I get too carried away or down about this, I focus on her. She's amazing

many apologies for my terrible punctuation as well... lot's of 'it's'!!!!! I blame the codeine

Thanks MrsTittlemouse

nosnik, here a link that can explain it better than i can,don't look at it if your sqeemish though.

here

basically 1st is just a cut in the tissue
2nd is muscle too
3rd is some damage to the sphingter[sp]
4th is sphingter torn right though.

tbh i think youll be totally fine, you might not even tear at all next time, hopefully.
good luck to you.

the top of a cornish pasty! what a great description, just what mines like.!

Sex is uncomfortable and can in certain positions be painful. This upsets me too as pre childbirth my dh and I used to enjoy a really fulfilling lovelife and now I just feel this is something else that has been taken away from me and I'll have to endure for the rest of my life. I paid privately to see a consultant as my gp didnt want to know and wouldnt refer me as an 'urgent' case. The gynae consultant I paid to see basically said that everything had healed fine and that eventually the scar tissue would fade.

Totally understand what you say milky about people saying inappropriate comments to try and make you feel better. i used to get 'at least you have a healthy baby' all the time. This doesnt help! I want to have a healthy body too so I can enjoy my baby rather than suffering in pain. I still cant believe this has happened to me as like others, I had no idea I could go into hospital healthy young woman and come out ripped to shreds with god knows how many stitches and unable to walk. The whole experience tainted my first few years as a mother and its made me worry about having any more. I paid to have an anal scan privately which tells you whether you can have a vaginal birth again- it shows the damage to muscles. However I cant take any more bad news and havent arranged an appointment yet to get the results, the consultant who did the scan told me he could see damage but to go back for a further explanation but I just dont have the heart for it. If I do have any more children I have decided to go for a c section as absolutely nothing can be worse than the 3rd degree tear. Should say I am based in Kent which doesnt seem to have many experts in obstetric injury at all.

Janey - that smiley was for milky ref: cornish pasty...

I do really understand how you feel. It's absolutely shocking and I think that there seems to be a distinct lack of empathy around, except from people who have actually been through it.

I am sorry that your lovelife isn't as fulfilling either - I looked forward to being an object of (even further!) adoration to my DH, after producing this gorgeous daughter. While he doesn't seem appalled and disgusted with my body (as I am), we haven't enjoyed the physical closeness that we used to. I miss that and of course I worry he misses it and what will happen if things don't return to some sort of normality. He's a great man, but... well... we all have needs. I used to anyway.

I wish people would thinl twice before dispensing comments like that. Of course we're delighted we have a healthy baby. However no one can make me feel ok about what has happened to me and how I feel my body has been affected.

yes those type of comments just feel like, oh shut up and be grateful.

i wish i had of know this was even possible before i had dd, as it wouldn't of been such a shock

c, i also had no forceps or anything and it was a calm labour and birth which really really puuzzles me as i just cannot undersytand how the hell this happend to me, obviously im glad i didnt have to have forceps or anything, but i can understand how that could caus do much damage, but thats a big part of my problem i simply can't see any reason for it to have happened.
which aslso makes me think it would be better to have a cs for any future babies as there is nothing i could do differently next time.

Thanks for your words of support Cyee. I still feel disgusted with my body and get really angry that it wasnt able to 'perform' properly. I didnt have forceps, ventouse or episiotomy and yet managed to have such a huge tear. Feel like my body let me down and I hate it for it. What you say about possibly having a pre-dispositon to tearing actually helps a bit as it makes me feel less crap ie there was nothing I could do to change things it would have happened anyway (unless of course I'd had a c section) I used to spend hours going through my mind what I could have done differently to achieve a better outcome and blamed myself for giving birth lying down and pushing when the midwives told me to rather than listening to my body.
Your husband sounds very understanding and I hope your love life picks up, its difficult to feel sexy though isnt it when your body has been so physically traumatised.

I feel a bit of a cheat here, as I didn't have incontinence issues. But I've had the same problems with the medical profession. I told the GP at the 6 week check that I was in constant pain and was told to have lots of sex - "that'll stretch you out". I felt like saying "didn't I just tell you that I was in constant pain??!?". I don't know what she thought I was supposed to do - have lots of agonising sex and then worry about the effects to our marriage later? I was told by my current midwife that it would have done no good anyway, as I needed more specific massage. I also had "well I've had three C sections" (and how exactly does that help me?), and "well it could be worse" and the old chestnut "but you have a lovely baby". But that isn't the deal, is it? As though it's a straight swap! I also had the "well there's no point sorting you out as you'll have another baby and undo all the repair and then we'll just have to sort you out again".

I can remember breaking down at 2am one night and DH exasperated that he wasn't allowed to sleep either until I finally admitted how scared I was that he would leave me for someone who could have a normal sex life with him. We too had a very active physical relationship until this happened. Luckily DH is being very supportive, although I know that it drags him down too having a wife who gets to upset. Which reminds me, I must go and book for more counselling.

janey, i felt and still do a bit blame myself, thinking maybe i pushed too hard.
the logical part of my brain knows its not true but its like you want topunish yourself further... its pure madness.
your gp sounds lik a right nightmare.

mrstm, i really wonder about some of these gps, go away and have lots of sex, ffs is that the best she could come up with.

Hi Cyee, MilkGodess
Glad your feeling ok today.
My problems... wind from vagina; urge incontinence(i believe that's what they call it - ie basically if i dont run to the toilet the minute i feel i have to go, i soil myself completely), small amount of leakage from back passage throughout the day. Lovely eh? Really makes you feel like a woman.. My episiomoty scar feels like it's pinching, and my butt hurts still, sitting is so unconfortable.

I cant leave the house until i have been to the toliet for fear of the inevitable. I havent had any accidents out Tg, but Im not out that often. Have had a few at home.

My husband has just been on the phone trying to chase up my referral and apparently it's on the 9th of June, and the consultant specialises in urogynacology.. So i have to basically sit around incontinent til then - i am so angry.

I have been told that if i ever plan to have another baby ( not that i am ever thinking of having another) i can have an elective section. And research that i have done suggests that it would be better for me in the long run and safer?

Im in the Leeds area, was your consultant good???

For Nosnik- a fourth degree tear is injury to the perineum, anal sphincter (internal and external sphincter muscle) and anal epithelium - not sure what the latter is. But basically tearing back from your vagina up into your anus ( anal sphincter -muscle that controls your bowel movements.)

Milk godess, i feel so much the way you are feeling, I have told the doctor they'll have to put me out to examine me, she said she'll prescribe me something - i think it's an anti depressant to get me through the examinations - im not depressed. Just soul destroyed, sick and annoyed, and seriously PANICKED at the thought of anyone ever touching me with anything again. Going to the docs tomorrow and will be telling them that it wont do - they have to sedate me fully. Just so you know - i am not a nutcase, i was pretty rational before this happened to me.

Anyway thanks for the advice, I am writing your questions down now Cyee, and Milkgoddess i hope you feel more human some time soon. DMCT

God that's so strange that there are 3 of us on here who had 'ok' no-intervention births with this outcome. I really do think there's something genetic in it. My mum had a really bad tear (but forceps) with me. My LO's birth couldn't have been more straightforward. I was on my knees when I delivered her - had only been pushing for 10 mins or so and only in established labour for about 6/7 hours. No 'expert' can even remotely find an explanation for what happened next.

In the past (TMI alert!) I have occasionally had quite hard stools and had little (no treatment needed) fissures that have bled. So I'm wondering whether my posterior is just a bit delicate.

DMCT - I know June seems a long time away, especially when you're dealing with such horrible symptoms. I actually cried in November when I got my appointment (in early Jan). I just thought they should rush me in. I nearly went private because when you realise you need something done you just want it sorted, don't you?

My consultant is Edward Kiff, at Wythenshawe Hospital, South Manchester. He does work for people from all over, though I know he does some private work too. He's a colorectal specialist and has published a fair bit of research on the obstetric injury side. If you wanted, it might be worth tracking him down and asking who his equivalent is in Leeds? I'm sure they all know eachother. He does strongly recommend a c-section and basically gave me the option of waiting until I finish having babies to do the repair. But if I didn't have the repair, there'd be no fecking babies!!!

I am really glad your docs are taking your fears and anxieties seriously and giving you something to help with the examination. I wonder would G&A help at all? I'm crap at smear tests, never mind all this. I got the feeling I was a curiosity which doesn't exactly help manage the fear. I really hope they support you fully. You are not a nutcase, but I COMPLETELY understand how you feel. It just changes you, doesn't it. And the completely random nature of it makes this even worse because you can't be mad at anything/anyone except yourself and your body.

On the positive side (is there one?), it sounds like you have a worse version of what I had and it is fixable. I am determined (once I recover from this op) to get on with things and get back to real life. Before I went into hosp last week I spoke to an MN'er who I'd 'met' when I first posted about my symptoms in January. Her specialist did things in a different way, but she has recovered now too... though the recovery we all seem most concerned about isn't the physical one...

MrsTM - you are not a cheat! Welcome! I am at your GP, though probs shouldn't be as friends have also had the "I can't have decent sex because they've sewed me up wrong and I have a flap over my vag" / "Well can you actually have intercourse?" / "Yes" / "Well there's nothing really I can do"..conversation. ARGH!!!! Good luck with the counselling though you sound pretty switched on to me!

I wonder if its worth pursuing counselling again? I managed to get some free consuelling via my husbands work medical insurance but to be honest it didnt really help. The woman counseller just sat there looking shocked when I went through what had happened to me- I think she too hadnt realised before just how physically traumatic some births can be! I gave up on the session but maybe its time to start thinking about it again. I would say I'd ask my gp about it but previous experience tells me she wouldnt have the first clue how to arrange it and would think I was being melodramatic.

Hope everyone is feeling OK today.

Hello girls! Another fourth degree victim here, all repaired now. My experience of the doctors concerned was much better than most of you seem to have had - I called the ward a couple of days after going home post-birth to say that things weren't quite right "down there" and was called straight back in to the perineal trauma clinic where I saw not one but two consultants (one bowel, one bladder) who could not have been kinder or more helpful. Both male, althought I'm not sure it's relevant. Had to wait quite a long time for the repair but that worked out OK for me as I wanted to breastfeed for a good long time so was resigned to not going into hospital until DS was well over a year old.
I think we should be more open about it - birth is not a risk-free activity, this sort of damage is not uncommon, but (a) it's not usually anyone's fault and (b) it can usually be fixed pretty straightforwardly.

Hello Bluestocking

Hi all,
I've been reading the thread and wincing in recognition at some of what you're all experiencing.
First up, great idea for a thread. There are others in the older threads that I certainly posted on maybe about 5 years ago after I had my dd. You are so right about needing to move away from any stigma or taboo around this and also just to educate people as tot he fact that whilst it's relatively rare for this to happen as a consequence of childbirth, happen it does!
I had a 3rd degree tear and retained placenta after a very straightforward delivery with gas and air of an 8lb 110z baby girl. She was compound delivery ie, had her hand up at her face which may have contributed to the extent of the tearing.
I had the tear and the placenta delivery attended to in theatre post delivery. I was slightly incontinent for a good 6-8 weeks post delivery and was terrified that it was permanent. Thankfully it wasn't but I had about 3 years afterwards where I struggled to hold in a poo if I felt that one was close at hand (sorry, TMI). I had a baby boy 3.5 years after my daughter and saw the proctologist for some advice about whether or not to attempt a vaginal delivery. It was supreme comedy when the male doctor was rummaging around my back passage muttering about it being a nice repair job! When he asked me to squeeze his finger I nearly died! Anyway, despite "quite good muscle tone" I opted for a section 2nd time around as I didn't want to tempt fate.
In my case things have definitely improved though I appreciate that I have had much less trauma than many of you. It is depressing and awful but hopefully, you'll get help to feel and be better.

Thanks for your post Spub and glad you seem to have pretty much recovered. at the back passage rummaging. It's amazing what you just get on with, when it comes to it, isn't it?! So has your emergency poo situation abated then? That's really good to know.

Janey - I know this isn't very helpful, but only you know whether counselling would help. I have seen a Birth Trauma association mentioned on MN threads in the past and I wonder if they provide help/counselling, perhaps by people who have been through trauma themselves. My (limited) understanding about counselling is that a good counsellor can counsel on pretty much anything, and certainly shouldn't be looking shocked or affected if the subject is something they haven't personally experienced (I'd imagine they haven't faced most of the personal or psychological problems their clients describe). So maybe it's worth trying someone else, if you think it would help you. I hope you find some good support, and maybe that will help you build the strength to get those scan results. Take care of yourself...

Cyee,
Yes, the capacity to hold on and actually a lessening of an urgently full kind of feeling in the rectum has definitely improved with time. I'm glad I had the section for my ds as I wouldn't have wanted to compromise the repair and recovery.
I think at the time I compared the back passage rummaging with understanding how sooty and sweep must have felt. Your dignity is definitely compromised witht his type of problem but I always found that trying to keep a sense of humour (however black) was a help.
I have deffo gotten better with time. Hope this helps to make things seem like there's potential for progress!(tho I fully appreciate that we're all different and that I may have gotten off pretty lightly compared to some of you wee souls).

Hi everyone,

I'd like to keep the momentum up on this thread so thought I'd drop in with a little update on my recovery.

I'm now 13 days post op and feeling lots better, but still not fully up and about. I am incredibly frustrated about this, especially since I couldn't get comfortable enough on a sun lounger to take advantage of the nice weather!

I have an appt with the GP this afternoon for her to have a look at the wound...joy. I really hope she only has a look and not a rummage. It looks ok to me and hopefully any infection would be evident without going digging.

Painwise, the main feeling I have is a bruised/muscular sensation in my butt - not the operation site itself. This really aches at times which is why I am slightly manic at the mo, having taken one of my top strength painkillers.

I just want to be better soon! On the positive side, the fistula seems to have gone and my pelvic floor exercises are getting easier and easier.

For anyone out there who has been though this before, do you have any recovery tips? I've been having salt baths and trying to keep mobile - but if there's anything that worked for you, please let me know.

Hope this post finds you all well.

C

Hi Cyee,

How did your appointment with the GP go, hope the wound is healing well and you are feeling OK. Must be a huge relief to have had the surgery and fingers crossed be on the road to a full recovery. I've heard arnica is meant to be good for wounds particularly inflammation and swelling. I used tea tree oil in the bath after I gave birth which apparently can do wonders.

Please keep us updated!

Daisy

Hi DaisyM - thanks for your post

I feel loads better after having seen the GP. She gave me a middle painkiller as the para and brufen weren't doing much and the tramadol was a bit too good, ifkwim. She had a look and the wound is doing well, she could still see a fair amount of bruising which is where I feel the pain. She was really encouraging and supportive and made me feel that it was ok not to be 100% yet. I don't know why I expected to be feeling so much better - but it's a relief to know things might take a bit more time.

Thanks for the tea tree tip, I'm glad you mentioned this because I had a notion tea tree was good and added a few drops to my salt bath a few days ago, but was then worried I'd made up its healing properties and confused it with something to do with my reuseable nappies!

I REALLY wish I'd taken arnica in the run-up to the op. It's supposed to be amazing stuff. I've been smearing the cream on my inner thighs, which probs isn't as effective, but hey, I got to type 'smearing on my inner thighs'

Today is a good day!

Hope you're all well.

Cyee

Hi Cyee, Glad things are going so well! I have to admit that I always think things should be 100% better way before they should be. But I've learnt from my experiences after giving birth that it can take the body a bit longer to heal than you think it should! Fingers crossed the tea tree oil will speed things up!

I'm currently trying some almond oil which I've heard is meant to be fantastic for scar tissue so I'm hoping I'll notice an improvement soon (though guess I'll have to be a bit realistic and give it a few weeks rather than hoping it'll work the first day which is what I usually hope for!)

Nice to hear from you. Like you, I really want to maintain the momentum of this thread.

Hi DaisyM,
Let me know how you get on with the almond oil. I have a vat of it at home, as I had high hopes for my perineal massage pre-birth. I think I did it about twice! I'm the same as you - in that I expect progress on day one. Are you an eldest child as well?! It's also very good for nails/cuticles apparently. Let me know how you go.
Did you post earlier under a different name or am I being dim and not seeing your moniker? Are you DMCT?
I have a 'watch' on this thread so always about. If anyone who's posting/lurking puts a watch on, then it means we will see if someone posts which is especially good if you're having a bad day and need some support.
Take care,
C

Hi Cyee,

Im DMCT, havent been on for a while. Glad to hear you are on the road to recovery, even if it is taking a while and is a pain in the ass( i hope you take the last comment as a joke - i am going through the same thing so i do understand).

Got my appointment brought forward, and im happy about that in one way and terrified in another.

So, Im off to the rectal specialist tomorrow - I cant wait - not. I have a load of diazapam to take, tried it out this week and it had no effect, doc said didnt want to give me larger dose cause it could knock me out/make me fall over. i said that was the effect i was looking for, so hopefully i wont remember a thing about the examination!

Your post on the 14/05 at 14.42 really makes me sad, as i cant imagine ever getting back to normal with my other half, as the thoughts of it makes me feel ill. I just dont feel like me any more and as you said people have needs.

Anyway on that depressing note, i think i shall have a large glass of wine and go to bed!
Chat soon, if i survive tomorrow...