Continued support for SPHINCTER INJURIES, FISTULAE and other CHILDBIRTH INJURIES - the Ragged Bits Thread

[Jacksmama]

Hi all,
old thread here.

Cyee started this thread in May 2008 after her op, and it's been a haven of support for so many of us who have injuries to our bits from childbirth. Especially with respect to sphincter injuries, fistulae and incontinence after childbirth, there seems to be such a lack of support for women, and the entire subject seems to be taboo. It's as if most MD's think that "a certain amount of damage is to be expected after birth and you just have to live with it". Well, that is simply not the case - and this attitude is unacceptable.

There are all kinds of Ragged Bits stories on this thread. Be aware that THERE IS NO "TMI" HERE - this is the one place where you can spill it all. If you read through the old thread, which is nearly full, you'll see that someone, somewhere, has probably experienced it - whatever it is! So don't be embarrassed or ashamed... we'll tell our poo stories if you'll tell yours.

And also - there are success stories here. Several of us who have been through the medical mill have been successfully "repaired" and are "fully functional", so to speak or even expecting again. In those cases, please join us for Pervwatch - the "after action" report for anyone who is once again venturing into marital relations!

Welcome everyone. We're sorry you had to find us, but we're glad you're here.

Good luck - I think you are very sensible to find out what's going on there before you put things under any more strain. Nope - it hasn;t been a picnic for me at all! Just got to hope that things will turn out OK. X

pps I replied to your other thread on types of stitches. I definitely had two types....

Hi all. Hope everyone is doing well. I had my investigations under general anaesthetic done last week. Really grim but finally got some results. A fistula has FINALLY been confirmed with extensive damage and scar tissue resulting from the undiagnosed tear 3 years ago. Have a 65% chance of success without a stoma, up to 85% with one. Looks like I don't really have an option. Pretty stressed about the whole thing. Can anyone give me any advice on living with two small kids and dealing with a stoma? And just dealing with a stoma full stop?

Hi flitterfly,

Im in the same situation as me maybe we can support each other? I see my surgeon in January by then it would have been 7 months from my last visit this is stressing me out I know how you feel.

when are you having your surgery?? I have chronic pain but no fistula im terrified as well im having another infusion which is 2 months on a waiting list if that fails injections into the area, will be next I have an older child and my baby is 7 months now I can see how you would be worried. I have met my stoma nurse she is not much use you need to get in touch with the colostomy forum for support ostomyland is very good also im seeing my doctor gp that is with a list of my problems and will ask why I have not been given support for this my head is about to burst.

Hi Soapy. Have you had your surgery yet? How did you/do you cope with your little ones - mine are a similar age; 3 years and 6 months. Surgery is looking likely to be the end of Feb, just waiting for a new date to come in.
I am trying to be positive about it and thinking the post surgery pain is going ot be like having my elcs. Its the only way I can deal with it. The stoma is a whole different issue - mentally coping with it and physically. I keep thinking i should be grateful that it will only be for a 3 month period - but then i think I am only 36 and this whole thing was completely avoidable. Its the anger surrounding how it happened and that it was never diagnosed, despite repeated consultant appointments. I am about to speak to my doc about getting some counselling, partly to help with the mental aspect of the stoma but also to help with relationship with dh. He is brilliant and really understanding - but I am shrinking more and more away from any physical contact - and I hate that. I don't want to be like that at all and it really upsets me that I am.

Hi Flipperfly,

I have no date for surgery date !!!! seeing my MD in March the chronic pain I have is horrible and mine went unnoticed as well how the heck does that happen did you seek legal advice???

I suppose we have to this do and give us a chance to get some of our life back!!! we will never be the same again im also chasing up therapy after being ingnored for months my husband is in turmoil over this

And same here the anger and being ingnored and being humilitied every time I was told it looked ok down there it make me sick

Hi Soapy4
Yes - I have sought legal advice and it is being pursued at the moment. I am just waiting for the clinical assessor to come back after looking at all my notes but solicitor thinks there is a good case in my situation. She has also advised to organise some counselling which I am in the process of doing at the moment. I am sorry that you are in so much pain - surely the docs can speed up the process if you are in so much pain?? I am lucky that I don't have any pain now after so long, just the horrible side effects on a daily basis.

Hi Flitterfly,

Got mixed up I see my surgeon in Jan and seeing Doctor next week to chase up support/infusion I cannot wait any longer when did your pain go??

Im in the same process as you reguarding legal advice how long did you have pain? and when did it go? and you managed to have another baby oh I will never think of sex again !!!

Hello ladies,
How are you all? Warm, warm welcomes to all those who've joined. I have not been checking back onto the thread as regularly as I would like to. Thank you to all the stalwarts who ensure they're here to respond (Hey JM ;))
I have scanned many of the most recent posts and want to say how much I feel for you all. While each of us has had, or is having our own personal and unique experience, I think we all share the horror and isolation of these injuries and the emotional as well as the physical impact. It's bloody shit in a nutshell!
I started the precursor to these threads under a different name because I was so embarrassed... I still don't know whether to be happy or sad that I have since got to know so many other people who've had similar experiences.
One thing I have detected over time is that there seem to be more and more options and procedures available, and slightly less of the puzzled WTF (from midwives/docs/surgeons) that was more familiar a few years ago. I reeeeally hope that for those currently in the grip of consultations and operations, this is a sign of better treatment and better understanding of what you're going through... I really do.
Take care all

Hello,
I've detailed all my problems on here before and just wanted to update that I have a surgery date for 21st november at kings college.I'm going with their recommendations for a "job lot" and having a vaginal hysterectomy,cystocele and rectocele repairs and I can't remember if they are doing some perineum repair too.
Not sure if anyone can remember me but hi anyway

Hello all,

Just popping on to say DD2 was born at home 3 weeks ago. I skipped the ELCS that was offered (unusual, I know).

I had a 1st degree tear which didn't need stitching and I didn't actually have any pain from.

I have had some pain in my bottom since bit this seems to be passing now so fingers crossed the gamble paid off.

Just going to read back over thread x

Hi Kellykettle congrats on the safe arrival of your baby daughter x

Kelly, huge CONGRATULATIONS!!!
I'm so happy for you!!! [hearts and flowers emoticon]

14k, good luck with your op - will be holding your hands in my thoughts.
How's everyone else?
I'm sorry I've been absent from the thread, have had a challenging summer - not physically so much, more emotionally. Huge recurrence of anxiety and depression. Better now, will try to be around more.

Kelly ,thats just wonderful.And proves it can be done.
Second birth was best for me,I think it often is.Even though my third and fourth were C sections I've still managed to end up in this state.

Lovely to here from you,jacksmania. We have had a shitty year too,with fil being diagnosed with an inoperable brain tumour in may and being dead and buried by september Then I've had ear infections for a month which takes us to last couple of weeks when I've had a breast cancer scare to the point where I was told I wouldn't be able to have my gyne op.I can't say I feel recovered from all this stress but I want this sorted now.
I don't usually suffer from anxiety or depression(although I have in the past)but I feel like I'm hanging on by a thread at the minute.
Did anything set you off in particular?hope you continue to feel better.x

I wish I knew what set it off, then I could work on addressing the cause. But no idea. Just a shitstorn of anxiety, panic and not coping. Meh :(

Anyway - better now.

I'm sorry about your FIL :(

l4k - i do remember you. Lovely to hear from you. What a crappy time you've had this year. I understand a bit of what you've been through with your fil - similar experience with fil and mil - 6 months and 6 weeks respectively. I know how much it takes out of you; how utterly draining it is to handle... along with ensuring some semblance of real life goes on. Have you had the all-clear on the breast cancer scare?
I hope the op delivers everything you need it to, and I hope your recovery is swift.

KellyKettle - great news and thanks for popping in to let us know - CONGRATULATIONS!!!

JacksMania... :( Lovely to see you here, but sad to hear about the recurrence of the depression and anxiety. Have you found anything that helped? Have you been able to work or incapacitated by it all? I can imagine it's utterly overwhelming (((Hugs)))

hello again cyee,yes thanks,the biopsy came back benign much to the consultants amazement.He had already told me he expected it to be DCIS(early cancer).Just got to go back in 6 months for another mammogram.
So sorry to hear about your inlaws,so unfair for your family.

So finally I'm getting my bits put back in the right place!! apart from the hysterectomy bit of course,but everyone agrees I will certainly need it at some point and prof Cardozo is adamant that for all repairs to be successful I need it now. I absolutely don't want any more children and my periods are irregular.Last one was 3 weeks since previous and lasted 13 days!!

I am wondering how long I'll be in for and how much of a perineum repair she will do.Haven't had much of one since birth of ds1 16 years ago(10lb baby,blood transfusion,a lot of internal and external stitches).
the worse progression of symptoms has been with sextbh.it just doesn't work for me anymore.I can barely feel anything now and thats sad for a38 year old.

Jacksmania,if you can't work out the cause-turn the page and enjoy feeling better.It's always good to hear from you. your support goes way back on this thread and is always both kind and extreamly helpful.

Aww thank you 14k, that's very kind of you! I had so much help from Cyee and others when I went through my own difficulties that I feel I need to pass that on. Your advice is very good - if I can't identify a cause then simply move forward.
Will be back later.

Cyee -

Hello everyone, I just popped on to say what a great thread I think this is, - but I'm sorry of course that people are going through all these traumatic problems.

I had my children over 20 years ago, and had various problems afterwards, they've been largely sorted, but it took a hell of a lot of fighting with medical professionals, being dismissed - 'this is what you have to expect after childbirth' type responses. It made me feel depressed and very alone.

But I don't want to rabbit on about myself, I just wish there had been somewhere like this thread for me to go to years ago, it would have helped so much. And I think it's great that you are all supporting and helping each other, it gives people great strength to get the help they need when they know others are rooting for them.

Loads of luck to everyone with their treatments, and I wish all of you the very best

Hey Kurri, thank you! Feel free to talk about yourself any time. Are all your issues resolved now?

How's everyone else?

Hi everyone, Last week I posted on the other thread but as no one had written on it for ages I thought I might just have been writing into the ether. One of you was kind enough to message me to see how I was following my surgery, thank you for caring!
Last Thurs I had 2 procedures done - one was a second attempt to fix my peri anal fistula and the other to widen the vaginal opening after it had been stitched too tight. The plan had been to put a seton thread to tighten and cut gradually from the fistula out (see a better description on my other post) the thought of which was terrifying me. When I woke up I was happy to be told that they hadn't used this method as the fistula was straighter and more superficial than they thought so they have laid it open, taken out all the granulated tissue and left it to heal (hopefully!).

I have been in bed pretty much the whole time since then. The pain was pretty bad at first and everything was so swollen. The swelling has resided a bit but now the bruising is coming out so my poor foof still looks like it's done a round with Mike Tyson!! Now it's the itching that is driving me mad. Where the stitches are is so itchy it's waking me up in the night and I have to keep running cold water on it! I hope this is a good sign of healing.

By the way, The doc assured me that it would be fine now and in about 6 weeks I should not "punish my husband any more". Are you fucking kidding me??!! Typical arab male mentality or what. I think I know which one uf us is suffering more through all this!

The fistula...I don't know if it will be the end of it. I moved around a bit more (only round the flat and sitting in a chair for a bit) on Tuesday and since then it has seemed to open again. It has been draining (a kind of mucous like substance with occasional flecks of stool) a lot which worries me, because this was what it was like after the last attempt. I don't think the surgeon put any stitches to close the internal opening so I am wondering if after another 8 months of healing I will be in the same place as I was last week. I suppose only time will tell.

I have an appointment on sat to see the doctors so I will see how they think it all looks and get back to you.
Reading some of your stories...I really feel for you all. I hope we will all eventually be healed and happy and in a place where the nice weather will indeed be enough cheer us up!! I am lying in bed and can see from my 12th floor window a slice of sea in between the highrises that is twinkling beautifully in the sun. Yes, I wish I was outside enjoying the weather but I keep trying to remind myself that things can always get a lot worse and I am so lucky in many ways. In many other countries we would probably not be here to share our stories.
Love to you all xx

Hi JECC - I'm so glad I saw your post and that you found us here! You poor thing, you've been through the wringer. I only have a few moments (I live on the West Coast of Canada so I'm always 8 hours behind) before I have to get DS ready for preschool and myself to work, but I'll pop back and read through more carefully.
((((((HUGS)))))

Just saying hi everyone no news as such just waiting on another infusion if this fails then im having steriod injections for the pain due to an unnoticed 4th degree tear ....... anyone had this done ...... if so was it done in out patients???.... thanks hi jc and kellykettle etc

Hi everyone, Just thought I'd update... I saw the gyn on Sat and he said that the stitches where he widened the vaginal opening are healing well so he is happy with that. Looks a bit lopsided to me but that's the least of the problems, as long as it heals well and leaves me without skin across the opening then its fine.
With regards to the fistula, It is draining a lot still and I have had more stool escaping. Its only a little bit if I have to hold myself til I get to the loo which I suppose causes a lot of pressure. I will be seeing the doc on thurs and I will be asking a lot of questions. Like WHY can't they close the internal opening of the fistula?? I just don't understand. He said it was a shallow and straight fistula so shouldn't it be relatively easy to locate and close the internal opening? I understand that a deep wound needs to be left to heal from the inside out but how can it do this if there is constant drainage and occasionally even stool? Seems to me right now I am in the same situation as the last attempt and that all this expensive op has done is open it right up again in the 'hope' that it will close itself. I am trying not to feel down but am sensing nothing has changed.

Why oh why does the expertise in this field seem sot so expert??

Good luck Soapy4. Seems ridiculous that such an injury could go unnoticed. Hope you get some pain relief soon.

Hi all. It's a week today till I'm admitted for my job lot operation. I'm trying to prepare but I feel very detached from what's going to happen. I'm terrified if I let myself think about it all. Will be three hours from home and my four kids. Also the scariest thing is that I have a pituitary condition which means I have to take steroids daily as my body won't produce it. If they don't medicate my properly during the op and recovery I could actually die. I know that sounds dramatic and they won't let that happen but I'm still concerned.
Fgs. Why the hell ami doing this?

Some of you girls are in much more pain than me and my heart goes out to you.
I'm 38 now but things have just got steadily worse over the years.
Just wish it was all over.