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.

[bronnie98]

help - where is the new thread for this topic?

[Jacksmania]

NEW THREAD HERE

[Jacksmania]

And, I'm sorry I forgot to say this earlier, but OMG and HOLY FUCK at what happened to you!!!!!!!! I'm so sorry. :( and

[Jacksmania]

I second posting on the prolapse thread, I have, as well - it seems to have picked up where this one has faded away a little, and it's very active - you don't have to wait days for an answer.

[cardamomginger]

Oh yes!! XXX

[WhodveThought]

Thank you! I will take a look at that thread too. As much as I hate what I am going through, it's strangely comforting to find this thread and see that I am in good company (even if we would all rather be somewhere else talking about flower arranging!).

[cardamomginger]

And you might find it helpful to post here:
www.mumsnet.com/Talk/general_health/1591334-Any-old-prolapse-Uterus-womb-prolapse-rectocele-cystocele-enterocele-urethrocele-incontinence-pelvic-floor-anterior-and-posterior-repair-TVT-etc-part-7
XXX

[cardamomginger]

Don;t have any advice on those tests. But wanted to bump for you and to send you lots of love. XXXXX

[WhodveThought]

Unfortunately I find myself here and nodding along in sympathy and understanding to a lot of the posts. I hope it's ok to join in.

Short story in bullet points (as I can't stand thinking about it too much)

I have one daughter, she is 2 years old.
Difficult delivery after a 5 hour second stage.
Failed ventouse, then neville barnes forceps used for a mid-cavity delivery that left me with my smaller labia torn off, deep tears down both sides of my vaginal walls, a large second degree tear and an extended episiotomy.
I did not consent to this delivery which adds a big emotional tangle.
Episiotomy tore at 10 weeks post partum.
Surgical reconstruction of my vagina and all scars at 6 months post partum.
Nerve damage that means I have no sensation in my bum or vagina.
I am now incontinent (bowel, not bladder).
Vaginal wall has prolapsed, possible bladder prolapse.
Impending invasive tests include a pelvic ultrasound and a defecating proctogram to determine the best course of (next round of) action.

I am tired and stressed and very upset. I feel mangled. I am sick of coping.

Thanks for listening. If anyone has advice about these tests I am waiting on I would be grateful for any information.

[flitterfly]

That's a tricky one. I think I would have still gone through with it with the urgency as it was getting so bad. I have just been really unlucky that my two fistula repairs haven't worked and as a result have days where I think, Is it all worth it, as all the symptoms are just as bad and the leakage through the fistula from mucus is worse than it was before. But, the surgeons told me that all my original symptoms would just get worse as the pelvic floor muscles stop working so effectively with natural ageing. The colostomy/ileostomy issue is a big thing to get through mentally and emotionally. As far as living with it, it is a pain but you just get used to it. I just keep telling myself it isn't forever. My sphincter repair has been successful and I think that the recovery of about 3 months is worth it.

[Cloudsinmycoffee]

Thanks so much for the replies.

Flitterfly, that's really helpful. Do you mind me asking, would you have gone through the surgery if you hadn't been incontinent? It's just I'm not, I've never had any accidents, only urgency and feeling like I don't have much pushing power. My OH asked me the other day how I would quantify the impact on my daily life, and I said about ten percent. I just don't know whether it's bad enough to warrant such drastic surgery. And I'm terrified of the colostomy issue. But then I suppose I could get much worse over time, the colo rectal surgeon seemed surprised my symptoms weren't worse.

Still waiting on Manometry appointment, I imagine I'll know more then.

[flitterfly]

Hi cloudsinmycoffee. I had a sphincter repair in March and had an ileostomy (similar to colostomy - different part of the bowel) at the same time to maximise the chances of success. I was given the option of having the ileostomy done at the same time or before the sphincter repair. I opted to go for the whole lot all together to minimise the amount of time i was in hospital. My hospital stay was a week and my recovery was about 6 weeks of not driving and 10-12 weeks of not lifting anything more than a full kettle. I have to say it was a real drag as I also had one 3 year old and a 10 month old. I had a lot of help from family and had to get someone in to help with cleaning and a bit of childcare.

I am still living with an ileostomy. I can't say it is pleasant and I have found dealing with clothing one of the most difficult things. But there again I don't have incontinence issues anymore. It will maximise your chance of success if you have one. I think I was told that if everything is successful with the op you can have a reversal after 3 months - I have just been very unlucky with my fistula repair failing each time. If you want to talk just message me. I know exactly what you are going through.

[Jacksmania]

Sorry, I believe it may have been KellyKettle rather than ThingOne. But neither one of them would be upset if you PMd them, linked to this thread so they could see you've posted here, and asked a question.

[Jacksmania]

I've had no experience with a colostomy, but I believe ThingOne may have - she posted a bit earlier in this thread, you could PM her and ask? She's lovely and wouldn't mind. Or put a thread in General Health.

I have no answers for you, but wanted to bump this, hoping that some of the regulars might see that the thread's had a post. It's gone pretty quiet the last few months.

[Cloudsinmycoffee]

Thanks for the advice all, had forgotten my MN password, sorry for late reply.

I've since seen a gynaecologist, who was worse than useless, didn't have my notes and was obsessed with checking for prolapse. She also thought I'd had two normal deliveries. I was very upset after this appointment, and went back to my lovely GP and had a long chat about it all, and she chased up the colorectal appointment and made sure all my notes were in the right place.

So I saw a colo rectal surgeon on Tuesday, he said one of the layers of sphincter muscle is functioning not too badly, the outside one, but the inner layers are about 90% defective and have no tone at all. He has referred me for a manometry and an ultrasound to confirm what he suspects, and then he'll see me again to make a plan of action. He wants to do a sphincter repair, and explained it all to me quite clearly, he was positive and quite reassuring.

I'm feeling pretty terrified now. He said he would ideally want me to have a colostomy bag for two weeks before surgery, he's a traditional surgeon and even though some do it without this he always does this first. I'm hoping he'll consider without if it's not really essential. Anyone have any experience of this? He said he would recommend six weeks off work after the op. I'm just so worried about how we'll manage with two kids under three and me laid up.

[flitterfly]

hi cloudsinmycoffee. Sorry to hear your story - it all sounds so familiar. I had an undiagnosed 3rd degree tear after an undiagnosed footling breech delivery 4 years ago. Finally found out last year that I had a rectovaginal fistual and severely damaged sphincter muscle so I can completely relate to what you are going through. I had a full sphincter repair in March with a temporary loop ileostomy as well as a fistula repair. Unfortunately for me the first fistula repair failed as did the one 6 weeks ago so I am now about to start with a tissue transplant option. My sphincter repair was successful. Brilliant surgeon in the South West region - Neil Borley at Cheltenham GH. Have been under colorectal specialists so far but about to transfer to get the fistula sorted. All I can say is that the this is a huge emotional rollercoaster but for me the surgery has not been nearly as bad or painful as the original pain after the birth which went on and on with noone taking me seriously. Good close emotional support is important.

Have you had any tests done yet? I am sure the next stage will be to see the surgeons and for them to decide which is best to work on the repair. It sounds more like a colorectal area of specialism - I also had nothing much left except scar tissue in the perineum. I had a few tests including a flexible sigmoidoscopy (scope up the bum) and various ones to test the muscle strenth. You may also have an examination under anaesthetic - also fine. Let me know how you do - the number of times i have been in and out of hospital and had someone shove a finger, I am sure I can tell you what the next step will be!

[Jacksmania]

I can't answer that as I'm not in the UK but bumping for you and hoping one of the other regulars will be along.

[afg71]

Hi this sounds all so familiar which is unfortunate for us ladies!
I had my first daughter in 98 large baby and suffered a 3rd degree tear that was not picked up. The hospital also kindly gave me MRSA in the wound.Subsequently had to have a sphincter repair in 99 at st Marks and an anterior repair in 2001 in northwick park. Also have insterstitial cystitis. Was left with a lot of vaginal pain and a little incontinence. In 2007 UCH Hospital told me i need a posterier repiar and perineum repair as i had never had one done. This was done with SIS Mesh and i was left in pain for a year of severe pain. Now i have moderate burning pain that is constant in the vagina. Constant Burning. Sex too painful. They say it could now be pudendial nerve damage caused by all of the surgery and that it could be the mesh that causes erosion. They have laso told me it may be difficult to remove. My Gynae at this point did not know what to do and fobbed me off to the pain clinic. My GP is now going to refer me to a specialist. Finally someone who deals with things all together at a specialist centre. Before i was sent to all sorts of different hospitals rather than a specialist centre due to funding. I have been advised to see Abdul Sultan at may Day Hospital, Vik Khullar at St marys, Linda Cardozo at Kings College or Michelle Fynes at st georges. It seems she is on long term leave so it would have to be one of the others. I have heard they are all good. Does anyone have any advice on this?
thanks

[Jacksmania]

Hi, this thread is one of those that goes to sleep when not needed and is resurrected at need :)

First - I'm so sorry you had to go through all this :(
I am currently on holiday with very sporadic Internet access, will be home Sunday so will be able to reply at greater length.
I imagine what's next for you is a bit of waiting :( until you can see the specialists. In my experience it can take a while but I'm not in the UK so don't know what it's like there.
Do you have any specific questions you want to write down for now?
I'll try to answer as well as I can, and you can also PM any of the regulars from this thread - we all want to help.
Will be back when I can. :)

[Cloudsinmycoffee]

Hello all, not sure if this is the most recent thread?

I'm just tentatively sticking my toe in the water here, having seen a consultant gynaecologist today for the first time since my three year old son was six months old. I had a forceps delivery, third degree tear, and an episiotomy in a different area too. My stitches did not heal well, lots of them came away, but I was repeatedly assured by midwives and gps that it would heal naturally. I was told early on that I would need to have a section for my second baby, which I did nine months ago.

Fast forward three years from the forceps delivery and I have ongoing urgency and bowel control issues. I went to my GP last month, and she did the first exam since the early days. She was concerned about the amount of scar tissue and my apparent lack of perineum, and referred me to the cons I saw today. The cons I saw today drew me a scary diagram showing that I only have a quarter circle of what should be a complete circle of sphincter muscles. She's referred me to a surgeon (what kind I don't know) and to another gynaecologist, she anticipates I'll have to see them both separately ( they don't do combined clinics) and that they'll work together to come up with a plan for me. She did say it would be quite complicated surgery.

But of course, now I'm sitting here questions are spinning round my head, and a quick google has terrified me. So of course I thought of here, I used to have another username years ago and have rarely posted, but often look for advice. So thought this would be a good time to come out of the woodwork, and see if any of you could offer an insight into what might happen next? I'd be grateful for any advice.

Thanks x

[Jacksmania]

I still have moments. And occasionally I get really angry that four years on, I still have those moments. I teach pregnancy yoga in my non-existent spare time :o and went to a workshop this past weekend. I really do understand that not everyone who teaches pregnancy yoga has actually had a baby, and in that case, you should probably really know what that looks like, but I really hate watching birth movies. I used to get really triggered by them (PTSD triggers, flashbacks is what I mean), now it's not so bad, but I still get really stressed watching them, and I feel this sort of helpless anger that I was robbed of the kind of normal, uncomplicated birth that they show. It's really tough. :(

Anyway...
Thanks for asking.

I'm glad there's nothing really wrong with your bladder. On the other hand, it does completely suck to be wondering when this will get better.
Here, have a (((HUG))) and some . And a .

[mrsm22]

Hello Jacksmania - Thanks for those links and for getting back to me. I did have a very long labour and a long pushing stage with no progress and the dreaded forceps etc. Yes it is really shit. Can't think of another way to put it. Anyway, just to let you know...I had an ultrasound scan last thursday evening on my bladder and whole pelvic area to check if there is anything wrong with my bladder or anything else that might be causing the problem (kidneys etc) and it was good news. Was told that everything looked fine and as it should. Interestingly, the doctor who did the scan (he was really nice and understanding), he pressed on my bladder and asked how my bladder felt at that moment and i said very full and that i was desperate to 'go', and he said that might explain things as my bladder wasn't even a quarter full, i only had 100mls in my bladder, so he said exactly what you suggested- overactive/irritable bladder that may be caused by a traumatic stressful labour (i mean stressful on the body). So although i'm not better, i feel relieved that the scan showed nothing abnormal. And hope like the doctor said that it is just a time thing. Thanks for your help. How are you doing now after your birth experience?

[Jacksmania]

Hi there,
sorry I've been away from the thread for so long, and I've name-changed back to Jacksmania :)

So my understanding is that when you have a very long labour and especially a long pushing stage, and then forceps, episiotomy and tearing, the pudendal nerve, which innervates the bladder sphincter, can become injured through stretch or tearing. This link www.pudendal.com/ is really helpful.

That feeling of always needing a wee could be overactive bladder, or it could be that possibly your pelvic floor muscles are so weak that everything is prolapsing a bit and your bladder is falling down slightly.

It's such utter shit, isn't it.

I found another article that might explain things:
www.medscape.com/viewarticle/758893

I'm sorry it took me a few days to see your post, I've been away from MN for a bit, RL getting in the way :) but I promise to be back and check to see how you're doing.

[mrsm22]

CaptainJACKSpareribs - I am new to this thread but have been active on a similar thread about 'any old prolapse, incontinence issues etc'. I am reading through this thread and found what you said interesting as it's similar to the birth experience i had 16 weeks ago. I had my first DS 16, nearly 17 weeks ago and i too had forceps, 3rd degree tear, stitches came undone and had to heal naturally (took 7 or 8 weeks to heal) and was practically bed ridden for 8 weeks. I had my postnatal check at the doctors at 8 weeks and was told all was fine...however i soon after started with a bit of a bladder problem and i wonder if you can help me? You mention that forceps can damage a pudendal nerve and the bladder. Can you please tell me a bit more? My problem, which may sound odd (only i wish someone else would have experienced the same) but i feel like i need a wee all the time! Not just frequently, but i need to wee from the moment i get up til i go to bed. As soon as i go for a wee, i still feel afterwards like i haven't been and still need to go. It doesn't go away. At first i did think it was a water infection but was tested for that and given antibiotics but they didn't work and my wee sample came back normal. I have been suffering with this for 8 weeks now. I went back to see my GP 3 times and they didn't do very much so i have privately been to see a uro-gynocologist but this sadly isn't going that well as she says my symptoms are a bit odd and rare! She did think it might be pelvic floor muscles that are weak and suggested physio which i have been having but no better and no improvement yet. The gyno doesn't seem to be too good. I'm terrifiied and worried and really hoping it is nothing serious and that it will go away. I have been put on overactive bladder tablets as well as having the physio but even they are not working. It's awful and really getting me down because i'm scared anywhere i go out, because even though i have a wee before i leave the house, as soon as i've been and anywhere i go i am walking round with the feeling that i need a wee. I did have a very traumatic birth, horrendous in fact, 28 hours, an epidural which didn't work properly, a lot of assistance with forceps, 3rd degree cut with episiotomy and tears, i was in agony for ages after. Can you please tell me more about the damage that forceps can do to your bladder? I'd be very grateful to hear more about what you have touched on above.

[Jacksmania]

Oh I'm so pleased for you!!! I remember my first pain-free poo. I was so damn happy I almost posted about it on FB. And then I regained my sanity and I think I posted about it here instead :o
Or I may have phones my mum :o
Anyway, that's lovely. Don't be discouraged if you continue to have the odd ouchy day. But there will be many more pain-free days than ouchy ones, and one day you'll realize you're completely healed and yours not sure when exactly it happened.
So happy for you!! High five!