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.

I knew you'd say this... I know I need to go and talk to the dr about this but oh I don't want to. I think I've been saying to myself oh well, it only happpens in X circumstances, it's not serious, it's all fine really - when of course I know that it isn't really all fine at all.
I also don't want to admit this is happening to anyone: not to myself, not to DH, not to a doctor (not because I mind specifically about doctors, but because going to see someone about this means it really is real, if you see what I mean).

So, what do I do: do I go and see the GP sometime next week, or do I wait 3 weeks and talk about it to the womens' health physio at the hospital (have a follow-up appt with her) and get her to back-refer me to the gynae people (ie is this a gynae problem, or is it a totally different area? the gynae thing is a birth injury clinic anyway)

bright autumn sunshine outside
two sleeping children
life feels bleak

I can so relate to the don't want to. It took me over 2 years. I've had a couple of appts and tests but after missing one appt I have dropped thro their net. I know I need to call the clinic and get another appt but its easier to ignore it...as you say then its not real..

BUT - the good thing is you don't know how bad it is iykwim... The damage might not be as bad as you are fearing? Not really sure about the women's physio but if is a birth injury clinic it sounds like they could help? I don't see gynae but a colorectal specialist (aka bum doctor on this thread - love it)
The GP actually referred me to gynae and they passed the referral to the colorectal, again shows how little GPs know about this and how little its talked about.

If you have a GP you are more comfortable with then try and see them but if not leave it till your clinic appt would be my advice but others may be able to offer something more useful?

It is real but only you have to know about if for now, you don't have to tell anyone until you feel ready. I didn't tell DH for ages and still don't share a lot. Not because he wouldn't be supportive but because I just don't want to! Take it at your pace and use this thread - its a lifesaver.

Hi Thisishorrible. If your GP is good, go and see them. I hate hanging around waiting when there is the chance there is a easy solution to this distressing problem.

You probably need to go to a colorectal specialist just to get things checked out properly. There are exercises that can be done with biofeedback machine which make you strengthen the proper muscles. In a few short weeks you might be sorted and not looking at this website anymore! It could be and hopefully is a short term problem.

I'm always looking at the internet after what has happened to me and it does seem that these issues resolve themselves in many cases in the first year. It also seems that if there is something wrong, the quicker it is dealt with the better the outcome. Best of luck.

Hi everyone,
Welcome Thisishorrible. Agree with ThingOne (hope you're feeling better?), Bubblejet (hi! and hope DD is feeling better!) and RuinedandUpset (hello!) - though wish I could say just let it heal!
See the physio, speak to your GP if you can... you need them to get a referral... not sure the physio will be able to refer you if they think that's necessary.
I know it's of no comfort whatsoever but the temporary embarrassment and discomfort of these consultations is far outweighed by the relief and potentially result you'll get by either being given a clean bill of health, or referred on for a repair. I know this is easily said by someone on the other side of things (ie repair done now) but I can't tell you how fantastic it is to leave the house and know that I am not at risk of accidents/urgent loo stops or breaking wind unexpectedly... things aren't 100% with me but I experience NOTHING like what I used to.
Take care of yourself and keep posting!

Oh and with the doc as well - and it being 'real'. I wussed out on my first approach - I called them on the phone. I was hoping they'd tell me it would just sort itself out and I couldn't stand the notion of phycically sitting in front of someone and describing what was happening. For one thing I didn't have the well-developed arse lingo I have now! I was stumbling over 'faeces' 'vagina' etc! Anyway, the doc listened on the phone and told me I needed to come in. It was a lot easier going in when I'd offloaded the key facts by phone. HTH.

In terms of DH - I feel your pain. I was pretty open with mine. Maybe not about every single detail, but he knew enough to understand what was happening to me and why I wasn't feeling particularly vixen-like. I think he only truly realised the extent of the repair and my feelings about the injury after my repair op. I think I'd held a lot back in case the op didn't work and didn't want him to know how scared I was or how dysfunctional I'd be/feel if the repair didn't work.

Hi to everyone else. Just back from a week in the sun (bliss!) and baked (BAKED!!) a banana and date loaf which I've just sampled. OMG YUM maybe there's a domestic goddess inside me afterall!

Take care all

Hello people, and thank you for being so helpful. I felt very down about things on Thurs-Fri last week, but have been v distracted over the weekend by nice family things.
Am still dithering about what to do, and what I think is wrong - ok, it's silly to try any kind of self-diagnosis on this sort of issue, but it's hard not to...
I guess that, reading more of this thread, I also feel like a bit of a fraud - I just don't have ANYthing to complain of compared to some of you. It's just that you do expect your poo bits to work perfectly, don't you...
Oh well, have only got the baby tomorrow, so I might try the GP -referrals take so long that I might as well go in two directions at once (via physio as well)
well i now have two needy children on lap/round knees: this isn't a good subject to think about with them present (older one watching every letter I type...)

Thisishorrible - glad you had a good weekend. You're not a fraud at all. I'm the one who started this thread and arguably my ailments weren't/aren't remotely as severe as many on here. In my humble opinion it's not the severity but the extent to which it interferes with our life and our sense of self that matters. In much the same way as some shave their legs every day and others every month (year?!) we're all different and our feelings, our need for support are all different too. So no need to feel like a fraud at all! Hope that example doesn't trivialise by the way - just wanted to say you can't 'rate' your experience in my opinion - some people don't seek medical advice for the most drastic (in my view!) symptoms while others seek out help for seemingly less minor issues. No better or worse, no right and wrong. At the end of the day it's all crap when your bits don't work - no matter the degree of damage. Keep posting!
Rant over

thisishorrible its like you are writing exactly what I think! When I first found this thread a while back I offloaded when I had got myself a referral but then I really felt like I had nothing to complain about. Nothing to do with any of the lovely people on here I must add - I was given lots of supportive comments! But when I read through the thread everyone's problems seemed so much more severe.
I have had a missed 4th degree tear and things aren't as they should be but it doesn't affect my sex life and my 'problems' are in some ways manageable. So i've ignored the fact the colorectal clinic have lost me and just lurked around on here.....
But Cyee is right (as usual!) it's crap that our bits don't work!! Some posters have talked about physio and treatments that I haven't been offered so I really think I need to get my next appointment and push some more...
If I do it will you??? Let me know

Hi everyone, I've not been on for a while. DD will be napping sometime in the next hour-ish so I'll come back and read/post then.

Hi there everybody - hope you're all doing well and had a good weekend

Hi. I have recently had surgery for an internal rectal prolapse, after eight years of symptoms, after the birth of my second daughter. Only diagnosed a year ago, as GPs would not listen to my symptoms and insisted on treating me for IBS. Just wondering if anyone else has had this surgery, and what their experience was as I am no better and at my wits end. I basically have no sensation of when i need to poo, and can only go when I use suppositries. Also lots of tummy pain and bloating. I feel surgery has made this worse, and although it sounds dramatic, I feel it's ruined my life. Can't go out in evenings, at least 2 hours in loo every day - I could go on, but I have been long winded enough! Just feel so alone. Thanks gramber

Hi there - I've posted this under it's own title but had no response so was hoping you lovely ladies might have some advice?

Sounds like I may be looking at this thread for a while still!

I have had problems with excessive granulation of the scar tissue from where I tore with DS 19 weeks ago.

So far I have had 5 rounds of ab's as they though it was initially an infection because of discharge, then 5 rounds of silver nitrate cauterisation to try to shrink the tissue down. This week I saw my nurse again for the sn treatment and she told me she doesn't know why I am still getting discharge so swabbed me for infection again

I have to ring on Friday for the results to see if I need another round of ab's.

Does anyone have any information on excessive scar tissue growth? Has anyone had it?

My symptoms have been:

-growth of soft tissue at the scar site
-extreme pain to touch the area
-bleeding from the affected skin
-v discharge constantly

I have not been referred to gynae team yet as they wanted to see if the sn treatment worked but I have not had a full pelvic exam as they are worried about hurting me.

19 weeks after the birth I am now getting very frustrated with constant pain etc and (due to anx/dep problems) keep thinking it's something more serious than it seems.

Sex is out the window still and despite a very kind and caring partner we are both fed up with not being able to get back to the maritals!

I really hope someone out there can help!

Thanks

Hello there can'tspell,
Sorry you're going though all that, sounds horrible.
I can't help with most of what you've written, but have a couple of things to share that might perhaps be helpful.
I had something that might be very slightly similar after the birth of DC1. Tore quite nastily, though apparently only 2nd degree, and it got infected and was v painful afterwards. I also had a sort of over-growth of soft tissue too, which was at first extremely alarming, but resolved itself pretty quickly.
(look away now if you're squeamish, very very tmi coming up)
My period came back at about 11 weeks, and when I put a tampon in I felt, to my great alarm, something resembling a cherry inside, near the opening. Was DEEPLY freaked out, even more so when, on removing tampon, it tore off (was only attached at a point - a bit like a mattress button, if you see what I mean). Dr had a look, said couldn't see anything wrong. Next month it happened again, just the same - another cherry thing, also came off. Even more freaked out. Dr also, this time. Was referred to clinic, but in fact it never happened again.
Does that sound at all similar to what's happened to you? I was never offered SN treatment, and it did clear on its own (ie after that 2nd time I didn't get any more 'growths' - though I did have another with my first period after DC2).

On the discharge question, I've also had hideous amounts after the births of both children, really disturbing. Was swabbed both times, but nothing ever showed up. And after my periods came back regularly, that disappeared completely. Dr this time said it was hormonal, but I found it v distressing this time as it was so copious, and he couldn't give me any hope that it'd ever stop (though it has).

I'd push really hard for a gynae referral, as mine took months to come through, and it's horrible having to wait and wait - why not at least get the ball rolling? Can always be cancelled if you turn out not to need it.

Hope that helps...

(still have head in sand on my own 'issues' - am considering going to the GP this week; I have to go without toddler in tow, and that means there aren't many options...but thank you all v v much for support)

thisishorrible thanks for your reply, it is so good (in a bad way I guess) to know that there are other women out there in a similar position. It's not something you really want to talk about with RL friends in detail so it's good to be able to come here and feel I can talk about how I feel without anyone being put off their dinners!

It's interesting you mentioned the hormones with the discharge - I might mention that as all previous swabs came back unclear so I was only given ab's as a cover. I rang for my latest swab results today but they are not back yet - that's what I get for living in Cornwall I guess

I wasn't told the degree of my tears in hospital but I do know there were severe enough for the midwife to fetch her senior to do the stitching as one was a 'tricky' tear. I had multiple 'grazes' as well which I guess are small tears. It took about an hour to complete all the stitching. Unfortunately I think I tore on top of the episiotomy scar from DD. They had talked about cutting me again to prevent tearing but DS decided to arrive in 2 1/2 hours and they just about had time to catch him as he came flying out!

I know what you mean about the 'cherry' feeling lump and yes, I guess mine is a bit like that but very well attached. It is a lot smaller now but still feels (and looks) like a skinned cherry.

I think I will push for a gynae appointment if this swab comes back negative.

I know what you mean too about trying to fit in an appt without a toddler in tow - not the easiest thing to explain to them if they have to be there

(TMI)
On a positive note DH and I managed to get a little closer to the maritals last night and things went ok. I can tell there is an awful lot of scar tissue around the opening in a sort of crescent moon shape which feels incredibly tight and is very sore to touch. I have a feeling we are going to end up doing some sort of perineal massage - weirdly after the baby has arrived! At least DH is very patient and understands when I suddenly yell!

Hi Gamber, I'm sorry to hear of your problems which sound so similar to mine in many ways. I tried to send you a private message but you are not set up to receive them, anyway it might help someone else to see this message, someone might even have a solution for us!
I have horrible nerve damage (pudendal nerve)from a forceps delivery and cannot feel when I need to go and sometimes cannot go for a week. I too get distended and am so uncomfortable that I can hardly move or eat. So nightmare interventions sometime help but not always.

Stop reading now if this is too much information for you or if this is not your problem! Not joking here.

Latex gloves - buy a 100 glove box from Boots for very little really (5 pounds or so)and while splinting (pushing the back wall of the vagina with your fingers or thumb) also digitally empty your bowels. Its awful but if you are completely full, it is a help. Also you can buy micro enemas, they help sometimes as well as glycerol suppositories. I find that larger enemas don't work as well and are more difficult to use. I live in a country where a device that has been recommended for me is not covered by any scheme and I can't afford to pay for it. It is covered by the NHS, it is called the Peristeen anal irrigation system and it just might help you. Ask your medical professionals if you could have nerve damage, ask if this system could help you and if you could have a trial. You use it every other day, supposedly get used to using it. I have chronic pain which is linked to the nerve damage, do you have pain?

I'm sorry that you are in the same boat as me. I'm not coping with it well at all and am finding it difficult to accept. I have cried myself dry over this damage. Even though this is terrible, I have also lost sexual sensation and yesterday was my wedding anniversary. We are still newly married. That really is the greatest loss for me. Anyway I hope my message helped even a little.

Hi Ruinedandupset. Thanks so much for your reply - although I don't wish this on anybody it is nice to know after years of suffering in silence, that I'm not the only one! I also had a forceps delivery, and although I haven't been diagnosed with nerve damage, I am certain that this is one of my problems ( as well as rectal prolapse, and intussception), as I cannot even feel to push when I go to the loo. I use at least 6 suppositries every day to empty my bowels, and it can be so painful and distressing. Enemas haven't worked for me, and although I've heard of splinting I haven't tried it. I never feel as if my bowels are completely empty. Are you able to give me a bit more info about the anal irrigation system, as I've never heard of it?

I wonder if consultants ever look at forums like this, so that they can understand how distressing it can be for us to have these problems? I find they don't really listen, and don't always think about the consequences of the treatments they offer. Sometimes, what fixes one problem, can cause another that's far worse. Also the emotional stress is often ignored. It's embarrassing to talk about - my husband doesn't know the half of it. I often have to cancel social plans, and forget staying at relatives or friends houses. How do you explain you might be a couple of hours in the loo!

I'm so sorry this is affecting your physical relationship with your husband - I can relate to that. I am usually too uncomfortable to want to have sex, and my sex drive has disappeared. I do worry that he will get to the point where he's had enough, although he is as understanding as is possible.

This problem really has ruined my life, and I can't see an end to it. I think there should be more education during pregnancy about the potential problems caused by intervention in childbirth, so that we can make an informed choice about the type of intervention we allow.

Thanks again for replying, it really does help to speak to somebody in the same situation, as I can't talk to anybody else this openly. If I hear of anything else that may be able to help I will let you know.

Hi again Gamber, I have talked to someone who had rectal prolapse surgery and it was a great success. Back to normal for her. I think you go back to your surgeon and discuss the outcome and options left for you. Perhaps there is something they can suggest to help you. Maybe it is early days for you yet and your muscles need retraining after so many years with the rectal prolapse? You mentioned that it was recent surgery. They will know about this anal irrigation system. It is commonly used by some wheelchair users and spinal damage people. Sacral stimulation is another suggestion for me. Try and get another appointment and talk frankly to the professionals. These forums are great in many ways but you (and I)need specailised medical advice to deal with this.

I've raided the thread bar again so will be brief but can I just give you two massive hugs. It's so hard. I really feel for you.

Hi - I am not seeing my consultant again until April. They want to see me in Feb, but no appointments! I will talk through all options, and it will be useful to go armed with some more info. Thanks for your suggestions. I wish I could do what everyone else seems to take for granted! It's such a help to offload here, and to have such helpful support and hugs! I have a feeling I will be checking this thread a lot! x

Oh gramber, I am sorry you're having such terrible problems. I don't have any advice to add, I am not that knowledgeable really but I do have lots of sympathy.

RuinedandUpset, it was really good of you to post all of that. I am sure there are women who read this thread but don't post.

Thingone hope you're doing better.

An update from me. For anyone that doesn't remember, I had a third degree tear which was misclassified and so not fully repaired. I have been left with a torn internal anal sphincter which cannot be repaired. I had some surgery using bulking agent into the internal sphincter to help slow down the faecal incontinence and wind but it didn't really help. Or rather, it has just exchanged one set of problems for another. Going to the toilet is amazingly painful. I can't go into the other problems. Its just to awful to even type it (and I know you don't know me, but still). I still can't control wind, or even be disctrete. Social events are a nightmare and I get pain in my bum and vagina. Long car journeys are agony but sometimes I just wake up with constant pain. DH thinks I should just explain to people so that they understand why I just need to lie down (rather than sit) or why I might fart really loudly but I really can't do that.

I have had to go in and explain to my boss why I have decided to reduce my hours going back to work and why I may need to work from home sometimes. She was very understanding but I just left the meeting feeling like I'd wrecked my career prospects. I don't have the confidence to do a presentation, for example, should the worst happen I'd be a laughing stock. My job is fairly specialised, its not like I could just go elsewhere really.

I saw my consultant today and he was very sympathetic. He seemed surprised and disappointed that the bulking agent hadn't worked. I asked him to be honest with me and he said that my problems will get worse, probably by my 40's. Further pregnancies will also worsen my condition due to the impact on my pelvic floor. He also thinks that I will have no real choice in the type of delivery - CS only.

He is recommending a trial of InterStim, a sacral nerve stimulator. Its an electronic implant which is a bit like a pacemaker for your arse. It stimulates the sacral nerve to give more tone and control to the muscles. If the trial is a success then I get a permanent implant. He said its a commitment for the rest of my life though which is why the recommend the trial.

I need to research it a bit first but I feel like I don't have much choice but to try it. I am really upset today but I'm sure once it all sinks in I'll be ok.

Off to have a good sob in the bath now. I'll check back later/tomorrow.

Although we have different problems Hulla, I can really sympathise with you. It's also the embarrassment factor, on top of the pain and discomfort. The impact of these problems on our lives is so huge. I hope there's an end in sight for us all.

I was really interested that you mentioned the sacral nerve stimulator, as this was mentioned to me by a registrar at one of my initial appointments. For me it would be to stimulate some sensation. I'd be interested to hear if you go for it. I think all these procedures are quite new, because it's only fairly recently that women have got up the courage to talk about the damage we suffer in childbirth. I think some of it is still fairly experimental - we're Guinea Pigs!

Lots of luck, and let me know how things go.

I really fear for the future gramber, on top of all of those. My consultant said he's seeing great results with the interstim; women in their 50's wearing continence pads who are back to normal afterwards.

It does come with some restrictions but my consultants view was I could have it now and get the maximum benefit from it rather than wait until things get really bad when it might just slightly improve things.

It costs £12k apparently so you have to have a two week trial with an external pack. If you go for the permanent one you have to go back in every 5-6 years for battery changes, re-programming and perhaps repositioning of the wire.

It just makes me feel so old all of a sudden. This time last year I was a healthy woman with a great career, social life and marriage. DH and I were so happy now we're trying to get an appointment with Relate.

I'll link to the Interstim brochure when I get home this afternoon. I am off to pick up my medical notes and visit a midwife friend for her opinion on what happened. She was going to discuss the possibility of home birth for any fututre babies but I think thats ruled out.

gramber I also think you're right about women getting the courage to talk now. My MIL has hinted that she suffers problems since giving birth to dh but she hasn't seen a gp.

Hi Hulla - I can really relate to you trying to get an appointment with Relate! I have been looking into couples counselling also. My DH is great, but I know he gets so frustrated with me having this problem, and my reluctance to tell him exactly what is going on. I don't think his idea of a happy marriage is spending the evening with a glass of wine, flicking through TV channels on his own, whilst his wife is upstairs trying to go to the loo! I almost feel I should ask him to leave to give him a chance at having a normal relationship with someone else. I feel so guilty for the impact this has on my family.

Hi Gramber,
perhaps you need proper pain relief? I have rectal and vaginal pain from the nerve damage and nerve pain relief does help as well as doing very little physically. Pain is very distressing. An absolutely horrible suggestion here but there are devices that you could use for short times such as a presentation - anal plugs. I spoke to a woman who maintains a state of bowel constipation with her diet to help with her incontinentance, God help us having to discuss these issues. I tell people I know what has happened to me and how it has effected me but they don't want to hear it, they think that I'm exaggerating. I feel very isolated and very different from the person I was before.

My first child was delivered by section and it was fine. I had no problems, some short term pain but nothing like this forceps delivery. This type of damage was always known about by the medical system, its just it could be continued as long as women stayed quiet. Forceps use is much cheaper than sections. Thats how I see it now anyway. No more children for us, how could I manage the pain and the discomfort of the pregnancy as well as the risk of increasing the damage even with a section?

Hi Gramber,
Somebody in Cardiff is doing a study on sacral stim implants for chronic constipation and is supposed to be having good results. (I haven't looked into it yet) I think that I was told that you will know within the trial if it works or not. I don't know any of the drawbacks.

R&U it's reassuring to hear you say that the pain of a CS is nothing like the pain of a forceps delivery. I completely understand when you say you feel like a different person. People don't understand. I don't know if posted this before but DH and I went to stay with his brother a month or so ago and I was in so much pain after the car journey (3 hours and we arrived at 9pm and having had no dinner). I asked if they minded if I went to bed just to lie on my side for a while because of the pain. BIL said fine but I had to come downstairs to eat and drink as they have a rule of no food & drink upstairs. I was really upset. I know it's their home I just wanted a little bit of understanding. I skipped dinner. The pain of sitting at the dining table would have made me cry.

Does anyone know if you can have an elective CS at full term or do you have to go in early?

I completely agree that the use of forceps is largely a cost issue. DD had awful bruises on her face for weeks if not months from the blades. I don't know how Trusts are rated now but when it was the star rating I am sure a high level of CS adversely affected their score.

I read my notes yesterday and it was really upsetting. My birth notes mention how I was requesting induction and epidural (I was 5cm and delivery suite was full so I was on antenatal ward for hours). They do not mention how I also asked if I could go to another hospital or have a cs because I was afraid of tearing! It seems they only included what they decided to go with.

DH and I discussed more children last night, we'd hoped to TTC next year but now we're not sure. I adore my dd and if she is all I ever have then I will be completely happy but I am sad that I will pay such a high price in order to have the family we talked about.

I think I mentioned that my employer has offered to pay for counselling so I called today to arrange an appointment and ended up crying to the poor woman who answered the phone. I turned out she was a counsellor herself so I think I got a bit of a freebie on the phone

Here the Medtronic link with a link to the brochure on the right.

Just a quick one from me to say that I feel so sad and angry reading these recent posts. Bloody awful.

Hulla, on the subject of elective cs, you go in at 39 weeks ish unless there are reasons to go earlier. That's what they're doing with me anyway. Also, even if you do go into spontaneous labour before the cs they will still do it, but are keen not to leave it too late as any kind of labour may aggravate the kinds of injuries/repairs we have.

Take care all