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))

[bearmama]

God you lot are brave. I have been whinging about about post CS constipation leading to pain and a bit of bleeding.
I will now shut up and count my blessings.
Well done to OP for raising this.

[FiBee]

Have just seen Solo's message about the Cleo - if we get a web site going maybe the manufacturers of such devises might sponsor the site and/or offer a discount?

This is a bit cringey but I borrowed mine from the hospital - the bit that came in a sterile bag is the bit that you insert (sorry - a bit grim). I wonder if anywhere does some kind of rental thing so that the only bit you have to get is your own probe?

[spub]

Also willing to post anything useful about my own experience of this (though as I previously said, I feel very lucky that I got off so lightly by comparison).

You are right, it's just incredible that this type of injury and incapacity can be possible giving birth in the twenty first century. Seems barbaric, doesn't it? One of the midwives who attended me 5 years ago said that midwives were genuinely shocked and saddened to see 3rd and 4th degree tears. I still have no idea whether an episiotomy would have helped me or whether the fact that it was so quick and they had to break my waters at 8.5cm dilated had anything to do with it.
I really and truly hope that things improve for you all and that you get every aspect of your lives back. The sex thing is absolutely terrifying but whoever said that they were going to go back to "teenage experimentation" is on to a great way of testing the waters, as it were.
Very best to you all. I'll lurk and post from time to time but as I'm now pretty much through this (thank God) I'll step back and let you all support and help one another.
Big hugs all round and here's hoping for healthy sphincters!

[winegumss]

Hello there, I sympathise with everyone here as I had some of the same problems. Cutting a long story short!!! after 3 children and problems with each and some surgery after each!!! the best thing I was given was Lidocaine ointment 5% which if i recall is prescription only. But it numbs the area (same as bongella and infact same ingredient), you put it on the scar tissue if walking a long way, wearing a gstring for a party or about to have sex. It numbs the pain and you can not feel your scar hurting. I used it for quite some time and was really helped by this. I had lots of stitches each time and had to be 'redone' properly after the last. After the second i had too much cotton left in there making a big painful lump which had to be taken out! Any how i would always recommend that you go back and get it sorted as things like this dont heal on thier own. i saw a fab lady based in london and would always recommend her. i also saw a lady with one of those pelvic floor machines to register muscle strength and to increase muscle with an electic toner,and she gave me the weights system in cones called Aquaflex which tho good and i did use at the beginnning i found too time consuming with 3 little ones to run around for! Take a look at both these lidocaine and aquaflex. Apart from that it still hurts in certain positions and i still find having a poo difficult sometimes as i can feel it trying to go through the weakened muscle and i have some nodules protruding from all the bad stitching! Dont panic tho as it is a whole host better than it was! Good luck all and dont worry.x

[solo]

Well with the Cleo, if you recommend a friend, when they buy it, Cleo sends them a cheque or voucher (£17)for their trouble. I've been recommended by my friend and I'd be happy to recommend one of you ladies too...we could get a kind of discount chain going that way couldn't we?!

[solo]

Sod it! I'm just going to order it! NOW!

[DaisyM]

Hello everybody, its so lovely that more people are joing this thread though it goes without saying I wish we didnt have all these issues...
Sweetgumss hope you dont mind me asking but I'm intrigued about what you said about having to have lumps of cotton removed? Does this related to undissolved sutures? I am worried I have something similiar, have been told I could have some little sutures (apparently the ones they tie off from the main sutures, whatever that means...) left from my repair which are causing inflammation and itchy skin.

[winegumss]

Daisym, yes I think that was it. My gyne lady said that way too much thread had been used and was left in a big lump. She looked horrified and was amazed that there was so much. At the time I dont recall feeling itchy - it was just a dull pain or a big pain if I sat down on it incorrectly, I remember perching on chairs! I hope yours gets sorted out.x

[Cyee]

Hello everyone, and thanks SO much for the supportive words and offers of help for the site.

I know this may sound a bit glib, but I was thinking of names for the web site... and thinking of something like:

• ChildbirthCanBeABumDeal or
• DontSettleForABumDeal
• ItsABumDeal (my fave - but not entirely descriptive)

Not particularly catchy, but want to try and find something that is light, isn't going to make people think they've found some anal sex paradise !! And of course that isn't very medical/offputting etc. Ultimately I would like it to be a community site and a resource for people. Who knows what can spring from there.

Any volunteers for helping out? I am probably going to delegate some of this to my dad (he doesn't know this yet!) so would be great to have some compadres to share ideas with, check text, round up people to contribute... Any takers? Will of course keep posting here too.

Thanks again. I felt so alone through much of this experience and while it is crap what we've all been through, I do derive a great deal of strength and comfort both by the strength and courage of everyone on here, and of course the positive stories from those who have lived to tell the tale. I would love a web site that helps and empowers people like us to live (well/better) with and hopefully cure/address/improve these injuries. I remember being so gutted and feeling so alien when my Google search on 'fistula' threw up the Fistula Foundation which proudly announced that fistulae have been all but eradicated in the western world and now only happen in developing countries and in difficult/obstructed labours. I could really have done with the wit and wisdom of the women here present back then.

Please make sure that I stay on this soap box. I would really like to see this through, but know that life, work etc. can take over. So you're all in charge of kicking me up my.. ah.. my (poor, damaged but much loved) arse

Hope you all have a good evening.

[Cyee]

OK - now that I got that off my chest can I welcome the newer posters today and also express my thanks for the tips and sharing your experiences. The Lidocaine one is a corker - who'd have thought! Please stay in touch.

Solo - I want to hear all about the Cleo when you get it

Also - on the web site name - I didn't state the obvious, but your ideas/thoughts for the site name would be great.

I really am going now. A glass of white calls

[chequebookjerry]

I tore and had stitches with my pfb, was reading this thread more out of interest than anything else as eventually hope to have a second.

and basically can I just say how much I flipping respect all of you on this thread and well done cyee for starting it

you have tremendous courage to talk so candidly about it as IMHO it is a taboo

good luck to all who have suffered and have/ are undergoing treatment

xx

[winegumss]

Strangely enough, I have never mentioned any of this to my friends- other than the fact that I had lots of stiches and pain afterwards, however am more than happy to tell everyone here all of the details!!! Good old mners!!

[Cyee]

Bump

[barey]

Hi everyone. I have been reading this with interest. I have two DCs. DS is 3.5 and DD15 months. In the last couple of months I have experienced fecal incontinence and am finding it quite traumatic - only had one accident. I had 2 easy labours, DS was OP and got a bit stuck coming out but there was no intervention and I only had 2nd degree tearing. Labour with DD was a breeze in comparison, it only took 3 hrs and she popped out in a few minutes. Had a few stitches which midife said were only to make me comfortable and not really necessary. Anyway, I went to the doctors and she doesn't think that my problems are anything to do with childbirth as I had relatively minor tears. Blood test and stool samples are clear and am going back to the doctors on Tuesday, but suffice to say, am pretty traumatised by it all. I really can't see how this doesn't relate to my 2 labours as things certainly haven't been the same since then - when I have to go I have to go! Am sure that is the same for most women though. But what could it be? So we shall have to see. Think I will probably be sent for a colonoscopy which seems delightful. Sorry for the outpouring but was so pleased to come across this thread - is has made me feel better that I am not alone!

[Cyee]

Hello Barey - thanks for posting You are definitely not alone!

Keep us posted on how you get on with the tests, and I hope the meeting with the doc goes well. It may be worth asking to be referred to a physio (in parallel with anything else they suggest) in case there's a muscle weakness that can be addressed through millions and gazillions of pelvic floor exercises.

In my humble opinion (and in my own experience) you don't have to have a bad tear to have muscular/sphincter damage. I had an unstitched graze with my LO, but it was the (unseen/unobvious) muscle/tissue damage that caused my symptoms and I didn't notice any of this until aroung 6 weeks post-birth. There could well be a different explanation for you, but it certainly isn't necessarily appropriate for your doc to reach such a definite conclusion purely on the basis of what kind of tear/labour you had. Though, as you can see from the posts above, many docs are not familiar with the intricacies of non-standard obstetric injury, particular when it comes to the impact on our lovely bums.

I really hope you get the care you deserve. And do keep an eye on the thread and post when you know your next steps.

[FiBee]

Hi all

Barey, don't answer if its too public here but I was wondering if you've ever had irritable bowel syndrome? This alone can cause incontinence even if there's no muscle damage present. If this is the case it can be helped with various drugs and/or changes to diet. I have it along with the sphincter damage so it can make day to day life a bit anxious!

Cyee - I'd be happy to help out with the site. I have a little bit of experience with HTML and Dreamweaver (though I'm a bit rusty!) Can't say I've got any inspired suggestions for a name though.

[Cyee]

Very good point FiBee - I also have a tendancy towards IBS and it certainly didn't help with symptoms and hasn't really helped with recover either.

Thanks for your offer of help!

My newest site name idea is...
www.yummumbum.....

As in yummy mummies' bums?!!!!! Is it the weekend of wine???

[Cyee]

Bum(p) ;)

[DaisyM]

Hi Cyee, how are you feeling, all recovered??

I personally like "childbirth can be a bum deal" it kind of sums it up for me and gets the message across that sometimes things do go wrong...

I would be really happy to help in any way I could. I'm actually thinking of writing to the hospital to complain about my treatment post-natally. Have been thinking about doing this for some time but havent felt strong enough before but I think now is the time to just do it.

[Cyee]

Hi DaisyM

I'm doing well thanks! I went back to work yesterday and it feels so good to be out and about. Still a wee bit tender, but definitely getting there

Thanks for your offer of help!

It's really good that you're feeling well enough to talk to the hospital about what happened. Have you used the PALs service? I have heard/seen posts from people who found this really helpful. I think it can be a first step before complaint and gives you the opportunity to find out exactly what happened and find out why certain decisions were made.

Take care all!

[barey]

Hi all - thanks for your messages. GP has referred me to a gastroenterologist so at least things are moving. Switch between feeling positive and that it is muscular and nothing a huge amount of pelvic floor excercises can't cure and that I am dying and children will grow up without a mother. (am quite dramatic...) Apparently it fecal incontinence is very common in OP labours which DS was, albeit 3.5 yrs ago. Fibee - don't think that it is anything remotely to do with IBS but I guess you never know...
Oh the glamour of it all!
Incidentally, I do see an osteopath for backpain - nothing serious, just the daily strains of carrying babies etc and she thinks it is all down to my core (in)staility and that she can rectify it. I just don't know...

[Cyee]

Barey - lol at the drama, I am exactly the same! I wrote letters to my DH and LO (imagine tears dripping on the paper as my trembling hand writes heartfelt platitudes) before I went in for this (really rather routine) operation We have to be allowed our moments though!

Glad things are moving and while it must be confusing when multiple people are claiming they can fix you, it's good they're all up for it. Keep us posted!

[FiBee]

Hi everyone - is it me or have we all gone a bit quiet? I don't get to come on here everyday so I'm a fine one to talk! Hope you're all OK

[Cyee]

Hi FiBee - I was thinking the same thing Perhaps we have MN fatigue!

Hope everyone's well. I'm off to bed. This is WAY too late for me on a school night.

[barey]

cyee a woman after my own heart!! Hope you're feeling ok. But it's all so unglamorous isn't it??! Off to see gastroenterologist on Wed so things are moving. I don't really have anything more to add at the moment which could be why things have gone quiet fibee. And also want an early night so can't get sucked into this...