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))

Hello all - Fluffycat - I agree with imnotalone, sounds like you should get checked out. While my injury wasn't additional to other injuries (tears, stitches etc.) I didn't have pain day to day.

After my op I was on a combo of ibruprofen and paracetamol, which you can take together. Avoid anything with codeine in it as it can make you a bit constipated.

Take care.

Imnotalone, I felt sad reading your story, throughout all this the one thing I was grateful for was that my dd didn't suffer any problems as a result. It seems that in our cases and Poorfluffycat, they will do anything to avoid C/S and I think that is a decision based on cost rather than appropriate care.
The stupid thing is, the injuries receive means it ends up costing the NHS more in the end.

Poorfluffycat, I didn't have any pain going to the toilet prior to my surgery, just incontinence. I found the stoma easy to manage and in some ways it was a relief to have it after 11 months of being petrified about having an accident. My stoma was formed by keyhole surgery and that really wasn't sore post surgery, the pain came from the total reconstruction of bum/vagina, I had a new perenium fashioned and there was a lot of stitches. However I was feeling ok after 3 weeks although there is a lifting restriction for 6 weeks with a stoma to avoid getting a hernia. This means it's unlikely you will be able to lift your little one and will require help with childcare.

Thank you all for your advice, I will go to the Dr tomorrow I must have an infection even standing up takes me ages let alone walking. I am scared to take any medecine as I am still breast feeding.

Hey Poorfluffycat- hope you got on ok with the doc. Well done on breastfeeding because it must have been tough with the pain you've been in. I guess that's another possible reason to postpone things a bit, until you know your breastfeeding plans. I stopped my daughter fully at about 7.5 months and felt a lot freer to sort my body out.
Take care,
x Cyee

Hope you're all doing well!

Hi Cyee! I'm o.k thanks, hope everyone else is too.

I had my consultation last week and have got more surgery to look forward to. Apparently, the hole on the rectum side was bigger than the vagina side and the pressure against it has meant that it failed. So, they are now going to do an advanced flap replacement on the rectum side. If I pay privately, I can have it done on December 3rd otherwise I have another 3-4 month wait on the NHS. I'm just waiting for the quote to come through but I'll probably find the money anyway because I just want this whole sorry episode to be over!!

I do chuckle though every time I mention having another baby to a health professional and they quietly say, "I think it might it good idea to consider a caesarian next time.." No really? Wow, I wanted to go through the whole thing again!!

I started back at work today. No wind issues so far but I'm absolutely knackered - I think I need another 9 months off!

How are you getting on Poor fluffy cat?

Hi there Imnotalone,
That's great that they're clear on what needs to be done. Hope you can find the pennies for swift resolution.
Welcome back to work! Glad you haven't had any ahh windy episodes
Have a good weekend everyone.

Hi everyone, haven't been on thread as its still sore to even site down. I am doing much better thank's, I went to the Dr who has examined me and said she can see new red tissue through the tear which she said is healing up and she has prescribed me some Anti-biotics which seem to have eased down the infection and pain. I am feeling a little stonger within. Iamnotalone good luck I hope the private fee is not too much, it's terrible that you have to wait that long on the NHS but typical. I hope that returning back to work doesn't make you too tired I can't even think of that yet.Cyee you did well to breastfeed for so long, I dont think I can manage 7 months breast feeding, my little one prefers the bottle to her Mum now.

Hi all, hope you are o.k.

Just a quick note to say please think good thoughts for me on Wednesday and keep your fingers crossed for me that the op works this time!!

Glad you're feeling a little better fluffy cat. I hope you continue to improve.

Good Luck Iamnotalone i will keep my paws crossed for you.

Good luck, imnotalone.

Just saw this Imnotalone - hope things went well for you. Keeping fingers, toes and.. sphincters crossed!

Hi I have been pointed in the direction of this thread and have read it through and been shocked at some of the stories on here. You are all very brave and some have gone through awful traumas. while I have not had a tear as such I just wanted to post my story, see if anyone is having similar probs. Ill try and make it as brief as I can!

Induction, 11 days od, Ist stage ok, prolonged 2nd stage, 3 hrs of pushing, dd stuck. Episiotomy and forceps. Doctor started stiching me up then realised placenta stuck so off to theatre, spinal, cut again, manual removal of placenta. PPH. Stiched up again.

Midwifes V busy on ward, no-one checked episiotomy wound, couldnt take my blood so was sent home with Hb of 9!

Midwife at home comented on 'terrible stiching of wound' several infections, 6 courses of antibiotics.

Pnd afterwards and flashbacks, dreams of being raped.

Breastfeeding went wrong, mastitis, very painful, too much too deal with so stopped after a week.

Terrible pain, couldnt sit down or have bowels open, went to GP as had strange looking bits, she said just ignore its a skin tag, insisted on referal, saw gynae consultant, actually prolapse of back wall of vagina!

Still having probs pooing so had a colonoscopy and a defecating proctogram (very humiliating, cried all the way through! what a wuss I am)

Anyway seems I have a mucosal prolapse as well and my pelvic floor is knacered, told i may be incontinent in a few year, great, v cheery news)

Anyway Im waiting to see my gynae cons and colo-rectal cons to see what my options are.

Thats my cheery story! On the up-side my dd is so lovely really an angel baby I wouldnt be without her but I fear now she will be an only and I feel guilty for that but I just dont feel i could go through that again.

Have been told that there used to be a specialist physio dept at hope hosp in salford (im in manchester) but dont think its there any more, at the mo Im just left guessing what my options will be.

Hi, just thought I would add my bit. Had ds 18 months ago and had a 3rd degree tear. It was awful! After having a just gas and air I was seperated from my baby who was about an hour old, taken to theatre and given a spinal block. I found this upsetting because the birth had been painful and I might as we have had an epidural. The surgery was humiliating. The room I was in was used like a frigin corridoor with people passing in and out and me with my legs in stirrups. I just got on with it and pretended I didnt care but I was so embarressed. Finally went to recovery and got to see my baby and was then taken down to the ward a little while later. I felt like they couldnt wait to get rid of me and that I was an inconveniance. Everytime a doctor came round he was followed by a whole hoast of students who wanted to have a look and by this time I was so fed up I just wanted to go home. They didnt give me any food, my exp had to bring it in and No body even bothered to explain why it had happened.
I left hospital the day after ds was born and the fun really bagan. I was in agony. I couldnt sit in a comfortable position which made bf hard. Going to the loo was just like hell on earth as it felt like I was passing pieces of glass and I kept getting infection after infection. One night I could no longer take the pain anymore. I had no support from those who knew anything about it in rl so I decided to search for some answers online and thats when I found this place.
Fast forward to the following june and I was about to pop with dd.... I was totally petrified about giving birth again and was convinced that the same thing was going to happen again. Lunkily my midwife knew what she was doing and made me feel confident in myself. I had dd with a 2nd degree tear but left it to heal naturally as I could bear being man handled again. Once again alot of the problems returned and I was in agony again. This time i was on my own with the 2 kids and even the smallest of tasks seemed impossible. Went to the doctor who put it down to an infection and week after week I would return to only be given more anti-biotics. I would need the loo and be in hysterics because I was so exhausted and could no longer take the pain. I gave up on the doctors, started taking laxatives and have gradually come off of them but I still have problems now. I dont think my body will ever be the same again. Sex is awful and I dont really get any pleasure from it and I have a lot of issues around going to the loo. Like when I realise I need to go I have to get there fast.

The one thing I wish is that someone had propperly explained what had happened to me, even if it had been 6 months later. I could just have done with that closure to give me some understading of the whole event.

Sorry... tis majorly long!

Notnewbutshy sounds so similar to what happened to me. they gave me an episiotimy only for me to tear.

I think i need a gynae referal really to have a look and see whats going on but at the mo I cant face the humiliation of it.

Just so you know I had dd after the crap with ds and although I did have problems afterwards with her they were no way near as bad.

Sorry to hear about your experiance.

Thanks spooky our experiences do sound similar, I totaly identify with your experience i theatre, legs akimbo with all and sundry walking in and out. I remember at one point there were two male ODP's at the back ofthe room with the door propped open just having a chat about the weekend!

I was also a bit shocked there was no type of screen up. I looked to the celing, the floor anywhere but 'down there'. They bought my partner and dd in which was lovely but i get telling my dp not too look, but he did (he told me afterwards curiosity got the better of him) but basicaly the surgeon was sat between my legs with her hand up my flu, dragging big chunks of my placenta out and dumping it on a tray!

I know its necessary but why didnt they put a screen up? I dont understand it.

The more I write on here the more I think I should write a letter of complaint, there are so many things they could have done differently to make the whole thing a better experience I think.

O I thought I should clear sometihng up. I started annother thread about this but in my paranoia not to be identified I put that I had a 7 month old ds!

Ill be honest I have a 6 month old dd!

Ha ha Im so ashamaed of whats going on Im going to far in my 'disguise'

Its daft isnt it, its just difficult to talk about.

Hi there notnewbutshy(great name!) and spookycharlotte121 - welcome but sorry you have the need to be on this sodding thread of course. Don't be ashamed! though I know what you mean. I changed my name when I first posted on MN about what had happened to me.

Spookycharlotte121 please do go and see your doc/gynae. While it is horrendous to be poked and prodded (esp when sore and traumatised) it's worth knowing what your future options are. The 'gotta go quick' feeling can be linked to a weakness in the pelvic floor and exercises do help with that, they have in my case anyway.

This is only short as I'm at work (sooo easily distracted!) but notnewbutshy, there's no reason why you have to have a VB for any other babies. In my case they've defo said have a planned CS. I would talk to someone about it maybe?

I'm in Manchester too (though not at Hope) and cannot recommend the specialist physios enough. There might not be a specialist centre anymore but these (womens health, I think) physios are around and working out of hospitals and the community. My physio was my absolute rock throughout this whole time and was so gentle, understanding and helpful. The bottom line (sorry!) is that our pelvic floors are knacked (as are most other women who've had a less nightmarish birth) and that we need to get them back in shape. This only happens if you exercise them regularly and the physios are way better than reading a leaflet on Kegel exercises. So I hope you find out what your options are soon.

Your baby sounds like a dream indeed! Enjoy

Thanks for posting your experiences and stay around and let us know how any medical interventions go...

Thanks cyee so glad to hear that there are physios around that may be able to help, I'm not based at hope either but I spoke to a radiologist the other day after my proctogram and he said the only team of physios that deal with this kind of thing were based at hope so im really glad to hear that may not be the case.

How did you get refered? Through your GP or consultant? My next app is with my gynae cons in a couple of weeks so Ill let you know how that goes.

Yes my dd is so worth it but people will keep asking me, when are you having your next............

Hi there,
I am pretty sure it was my gynae that referred me to the physio (mind like a sieve!). The Gynae was based at Trafford General and at that appointment she referred me to Edward Kiff the consultant colorectal surgeon at Wythenshawe (absolutely fantastic man - so lovely and an expert in post-birth injuries) and to Liz Kirton the womens health physio who I think spreads her time around the various Trafford hospitals (I saw her at Altrincham). Hope this helps and hope you get some help soon. Cyee

Hi thanks again, My colo-rectal cons at trafford and Gynae at wythenshawe so opposite to you, small world! I have written those names down and will ask my gynae consultant about a referal when I next see her, thanks so much.

Wow that is a small world! I can't for the life of me remember the gynae's name, but definitely ask yours about Kiff. I didn't even know there was a colo rectal at Trafford! Maybe this one has more of a specialty in your area? Make sure to ask though - because I did think he was amazing and I know he's done loads of research in post-birth injuries. He also happens to be the least arsey consultant I have ever come across... he was great, which is high praise considering everything he did to me!!! Take care.

Can't believe I just described a colorectal surgeon as the least arsey.... so help me...

Hi all. Just got out of hospital yesterday. I didn't react very well to the anethestic this time plus they gave me an epidural. I was as sick as a dog! Hopefully things have gone well. They have put collagen over the hole on the rectal side as there wasn't enough tissue to cover it and patched up the vaginal side again. I've just got to wait and see now. If it falls apart this week, I've got to go back in and have a bag fitted. I say bring it on now if it's going to stop this madness...

I'm so sorry to return to more stories of trauma. The lack of communication never fails to suprise me. Most these awful experiences could so easily be eased by simply telling people what's going on.

Notnewbutshy, please don't be put off having a another one. Despite my experience, it hasn't put me off in the slightest as my pregnancy was very good - it was just the delivery that went wrong. The next one will come out through the sunroof and I'm sure will be a totally different, planned experience. If your pregnancy was good, seriously consider a CS.

Spookycharlotte, I know what you mean about not bearing to be touched. I had a letter recently informing my smear is due and I just laughed and thought I don't think so! I know I'll have to have it when things settle down but the thought of more prodding fills me with dread. You might consider getting your notes from the hosptital and getting a member of staff to go through them with you. I think most hospitals have a listening service so you can try and understand what happened. Also, I don't think you should have to live with continuing problems. Tell me to mind my business but maybe you should demand to be referred. You never know, it could be something that will sorted by expert help...

Hi Imnotalone, sorry to hear you didn't do well with the anaesthetic. I so hope this surgery has worked for you! I have been lurking on this thread because my own experience, while bad, wasn't nearly as horrible as yours, so had nothing useful to add, but have sent links to this thread to some other mums who have posted on other threads. Just wanted to say good luck with this repair!!
I'm with you and spooky on not wanting to be touched. I have a repair scheduled for Feb 09, and everytime I've had to see the consultant, the internal exam has left me sick and shaking. It's like my body still thinks that merely being examined is major trauma. When will this stop???
Bah humbug.