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.

Hi guys,
I havent been on for ages, But Happy New Year to you all, hopefully this one is better!

Not alot has changed with me, my lil one is 21months now, i havent had sex since i was pregnant, i am starting counselling in the coming weeks, my gynae consultant is talking about injecting botox into my levator muscles to try to relax the muscles so i might be able to have sex, my A-R consultant was talking bout injecting something into my sphincter to stop the small leakage i still get, and the womens physio wants me to all sorts of crap (no pun intended); Oh yea and last night i got hammered and decided to try and have sex (with my husband of course) thinking if i was hammered i wouldnt feel anything but I did and it didnt work!

What a disaster.

IM SURE 2010 WILL BE BETTER!

Cyee, glad to hear all is well with you, Ive only read the last few messages but it seems that your pregnancy is going well and you have a date set! Congrats

Please can anybody help me? Wish I could read all of this thread but have a screaming colicky baby who lets me have only ten mins at a time. I am 8 weeks post birth, was induced, 4 hours and then 9 minutes of pushing and a 2nd degree tear and there she was. However, and this is the embarrasing bit (feel so bad didnt even mention it to doc at 8 week check today) , having googled my problem I am pretty sure I have a fistula (if that is the correct term, sorry). When I break wind about half the time I feel it on its way out and then it disapears and eventually comes out vaginally. This mostly happens when I lie down. I am feeling so anxious about this. My questions, if anyone can help are;
Will it get worse if I just leave it? Everything else feels fine down there, just the wind problem.
If I do want it treated is surgery the only answer?
I have not had 'relations' with dp since birth. Should I avoid sex? Can a fistula become infected?
So sorry for the tmi. Have not mentioned my problem to anyone in real life. If anyone can advise I will be so grateful, thank you. X

Ella go to your GP and get referred to a colorectal consultant and also obstetric physiotherapist. I had a 3rd degree tear and still have problems. That is why I went on to this post to ask for help/opinions, then I saw your thread and didnt want to leave it unanswered. I have what you have too. I have already been to a colorectal guy and he said there was muscle damage in my sphincter inner muscle but that surgery wouldnt help it because it was classed as mild incontinence and so might only get worst if they went in an operated.
Its pretty unsatisfactory really...I find it hard to control wind at times, and if I pass it when sitting down then it eventually comes out vaginally, and very noisily, BLOODY embarrassing.
PLUS (and sorry for TMI) whenever I have a bowel movement, in the couple of hours between it and next going to the loo some poo seems to leak out and when I wipe myself at the back there is always some there..which is a HORRIBLE feeling, you never can feel it happening and though its only a time bit its enuf to warrant a good wipe and its really getting me down depressng me and making me go off sex cos I feel dirty.

Should I go get a second opinion? I cant believe I have to live with this for ever..

Ella, just a quick post but I'll pop back later. I had this sensation after a 3rd degree tear and was worried about the same thing but after examination was told that all was well its just that wind can sort of travel up the front so it seems like it's coming out the front.

Obviously you know your body best and if you're worried see your gp but I wanted to offer some reassurance. Apparently, the sensation is not specific to a tear, just a vaginal delivery I think.

Brief update on me, I haven't been doing very well at all since I last saw my colorectal surgeon. I just feel like I have cried for months, the counsellor was rubbish and made me feel worse ("think of how your dh feels, he probably doesn't have anyone to talk to") and I think I might be a bit depressed but am far too scared to see my gp incase they think I'm in no state to look after dd

sorry had to post, dd hit the keyboard and my post went a bit odd.

Anyway, I am still waiting for my interstim trial. I have found a private therapist who's going to help me work through all my issues and hopefully save my marriage as I have become a moody b*tch.

Sorry for the dreary post, I'll post something cheerier later. Mat leave ends this week and dd starts nursery so thats on my mind.

I'll catch up on thread later. Hope you're all ok.

Hey DMCT and Hulla - lovely to 'see' you both That counsellor sounds like a cow bag Hulla, better off with someone new. That's outrageous what she (he?) said - as if you're not concerned about your DH. Grrr.

Welcome Ellaeleven and Nikita09. Sorry to hear about your experiences. Ellaeleven, I can echo what Hulla has said about wind - while I'm no doctor, feeling wind from vag doesn't defo mean fistula. Have you had any poo come out of that hole (how lovely)? That's how I knew. I still get fanny farts now, though panicked the first time it happened after my repair op. Agree that best to see GP and get referred to be sure. I had a fistula and in brief, no they rarely get infected and there's no reason to avoid sex. They do tend to partially close over and then open again but this is normal (ie avoiding sex/tampons won't make them heal) as they pretty much never heal themselves due to the nature of the beast.

Nikita09, I don't care whether they categorise it as 'mild incontinence', it's absolutely horrible when your bum isn't working properly isn't it? It made me feel awful, unwomanly, unclean etc. Have you been referred to women's health physio? I think you should get a referral to one and for a second opinion colorectal. If they can't operate and if it's 'mild' then I'd expect that expert physio support should improve some of the symptoms you have. It's more than just doing kegel clenches. The pelvic floor supports vagina and sphincter so getting that in good shape should be a priority. At least then you'll know to what extent the symptoms are manageable. Keep us posted on how you get on.

Thanks Cyee - So great to be able to talk freely about this on this forum, its a Godsend!

I did have obstetric physio after DC3 when I had the bad tear. They gave me biofeedback treatment which helped. I went back after my last baby 18months ago but this time she said it was not so weak and only needed pelvic floor excercise treatment though I would have preferred the bio feedback.

I must confess that I am not the best at remembering to do the pf excercise, and sometimes get downhearted as I know that even when i do them every day, there are still those symptoms there, which though minor compared to many of the posters here do impinge on quality of life and self esteem.

I might go for a second opinion anyway..it cannot hurt, and in the meantime resolve to pelvic floor exercise EVERY day, its the only way to keep the worst of it at bay.

Thanks for the support and suggestions. I will keep you posted.

Thank you so much to everyone who offered advice and shared their experience.I really appreciate that first you take the time out of your busy lives to read my post and then try and help. I am going to pluck up the courage and see my gp. I am so sorry that any of us should have to go through this but what a difference it makes to know there are wonderful women out there feeling the same things, if not worse, but getting on with it. X
Nikita09 While I'm new to this just wanted to say go and get a second opinion. You shouldnt have to accept that you will have to live like this now and in my own experience with another health problem in the past I didnt give up seeing doctor after doctor until the problem was fixed and I felt happy again. Good luck to you and I am with you on the 'must do pelvic floor exercise every day

Hi

I'm not sure if i should be on this forum, but i don't know who else to talk to. Since having my dc 8mths ago i have had no.1 problems with my no.2's, specifically very little warning when they are about to occur!

had a very looong labour (contractions for over a week) but a very short 2nd stage (2 pushes) as had emergency forceps when my ds got into major difficulties (was being prepped for em cs.) Had small tear and a large episiotomy and was told 2nd degree. These problems happened immediately; as soon as i sat down on the toilet for a wee i would feel as if i needed to poo - but i never mentioned it at the time as i thought it was normal after an episiotomy.

It has got better since in that can go for a wee without needing a poo, but it's just the urgency which gets me. I get maybe 2 mins warning max and i needa loo very,very fast.

It's not so bad when am at home, and can plan daily activities like shopping by scheduling after the morning crap and making sure am home in time for the evening crap, but i have to return to work and am, pardon the pun, crapping myself about crapping myself at work.

My job couldn't be worse: dealing with members of the public for home visits and high level meetings with local politicians and civil servants et al. Sometimes there can be 25+ ppl in meetings which have to chair. Just having the urge to go in this situation is scaring me sooo much!!

Plus sex is v painful at first with other half. We have managed it twice i think with lots of lube. It's just initial pain but that's another great after effect!

I haven't talked about this to anyone else, and it was only coming across this forum that gave me the confidence to tell dh what have been keeping secret. He was very supportive and told me to see my gp.

What i want to know is - should i see my gp, is there anything that can be done, or should i wait some more time in case it is one of those things that just gets better?

And...we would like another child. But could preg and vaginal birth make this worse??

Looking back at your so brave posts has made me realise that my problems are in no way as bad as a lot of people here. x

Funny thing is i used to be very toilet shy and never go except in my own loo but now i have no shame and now take a dump anyplace. What a welcome house guest i must be !

hugs and kisses xx

Nikkita so sorry I missed your post. Your symptoms sound much the same as mine; internal sphincter damage causing incontinence of faeces & flatus. It's wrong that nothing can be done. I have had a colorectal surgeon take my problems very seriously. I had bulking agent injected (DMCT I have had probs since mine - it's helped keep faeces in, not wind & some of it has moved to my vagina & gone hard causing pain) which is straight forward & can help some. I am now looking at a sacral nerve stimulation trial. They tend not to operate on the internal sphincter because to get to it causes damage to external sphincter and is not very successful in a follow up repair.

You can see your gp & ask for a referral to another hospital. Are you in the uk? I know two hospitals in the north where you'd be taken seriously.

Hi everyone and welcome Needaloofast,

It's definitely worth seeing your GP in my opinion. Needing the loo asap, or 'urge incontinence' as it's sometimes known is something I also suffered from before my repair op. I don't think it was the fistula causing it, just weakened pelvic floor muscles and also a damaged sphincter. Hopefully your GP will refer you both to specialists (probs colorectal and maybe gynae though my gynae was clueless and it was her that referred me to colorectal) and a womens health physio. As above the physios can do things like Biofeedback which I also had and found really helpful (it's like a machine that measures the quality of your pelvic floor efforts). At the end of the day having a tip top pelvic floor is a good thing regardless of what the specialists end up doing/thinking.

I too am appalling at doing pelvic floor exercises which is outrageous considering I'm such an evangelist on here about them! Let me share a cautionary tale with any of you who are/may plan more children. I get awful morning sickness and I didn't realise the state of my pelvic floor until I was pg again. My morning voms were made all the more awful by having to stand over the loo on a towel because the force of puking made me wee a little, no matter if I peed first. So that made me do them again.. though I confess I'm currently lapsed. Clench ladies!!

On the subject of future births, I am 4 weeks and 1 day away from a c-section. I'm having a section to prevent my repair op being reversed by a vaginal labour. I was given the option of waiting until I finished having a family to have the repair, but I wasn't prepared to live with the symptoms (urge incontinence, uncontrollable wind etc.) for years. Like you guys, I have a job to do that would be difficult/impossible/humiliating to conduct with these types of symptoms. My consultant didn't feel that future vaginal births would make things any worse for me or reduce the likelihood of a successful repair in the future.

Now, 18 months post-op I am not 100%. The odd fart escapes without my knowledge (though to be fair this is probs poor pelvic floor). However I am, I'd say, about 95% what I was. Only very very very occasional urge incontinence (put it this way, I can't remember the last time). I have a sex life and am comfortable with my body... though wouldn't want my DH to explore my bits with a head torch as I suspect it's not quite as well put together as before!

Anyway I'm rambling. As Hulla says, it's defo worth seeing someone about it, and demand to be taken seriously. Hulla, I think you and I had the same specialist, didn't we? It's important to get someone who understands the childbirth thing - you may even find your physio can recommend someone. Mine spoke highly of Mr Kiff based on previous clients of hers, so I knew he had a good track record. Some of the others are so focused on repairs following bowel or other cancers that they don't really 'get' our issues and may even think we're fine in comparison with some of their other patients. Wish they could live with these symptoms for a while to give them another perspective.

Hope this covers some of the questions that have been asked. Ask again if not!

Take care all

Hi Hulla
Thanks for that advice. I will look in to that, I am in Northern Ireland, and I went to see a guy in Craigavon, supposedly one of the best, but I think it would be worth getting a second opinion. The problem is described as mild, but it troubles me a little bit every day of my life, so from that point of you, I am always aware of it, and feel less of a woman because of it. For instance, I would never EVER let my DH go down on me any more becuase of the disgust I feel for my problem, and the face that I am never sure that it will be completely clean down there.

We still have a sex life, but it is much diminished in terms of positions etc as I tend to just favour missionary mostof the time nd being on top the odd time.

It is impossible to explain this to my DH becuase I worry that he would be turned off altogether. He knows about my problems but I think prefers for me not to discuss it with him in much detail becuase it is a sure fire passion killer.

What is this interstim trial I have read about on here? And would you recommend trying the bulking agent thing despite what happened to you with it?

Ellaeleven, just read your post and thanks for that, I will persist in getting further help, it's often the way that you have to go to a few docs before someone takes it seriously. And I will keep you posted and also hope that you get the help and treatment that you need. Best of Luck.

Nikita09 - completely know what you mean in the passion stakes. Sharing feels like the right thing to do but Jeez if we can't feel ok about it, how the heck are our DHs meant to? I was the same in terms of never feeling clean. To be honest I'm still a weeee bit funny about oral but find that red wine helps
Wishing you all the best with a second opinion. I'm originally from NI so know there's not masses of choice about specialists, so it may be that you want to see the person in Craigavon again and tell them that his counsel isn't stacking up with your research and would it be possible for him to discuss your case with some other colleagues, maybe in England. Edward S Kiff at Wythenshawe Hospital in Manchester was my consultant and he seems to have built up a bit of a rep for childbirth related injuries. His researchers are currently running a project with pg women in the area to assess their arse (sorry!) function before childbirth (first babies only) to see if they can id any trends/issues with the problems some people face after birth. I am intrigued to know how many perfectly healthy women volunteered for the anal probe!!!
Take care

Hulla, I had my secondary repair 5 months after having my baby, and still have slight staining, all else in that dept is fine. But i am half afraid of getting the bulking agent thing done - just in case as you said it could cause other problems. I have enough to deal with at the mo. So not quite sure wot to do.

Having difficulity doing the electrostimulation thing with the physio - really would prefer less interference!!!
CYEE you said you thought it worked well for you? Did you have the kinda symptoms I have now or different?

Nikita09, I also live in NI, I had my baby in England and had my ops done over there but have since moved back. I used this thread alot at the start. My physio here said there is one good a-r surgeon in Belfast, i am still going to cross the water to see the guy i saw in Leeds. My gynae is in Derry.

Anyway lil man waking up, must rush...

Hey DMCT
Is it biofeedback you're doing with the physio? Where you put in a probe (to vagina) and 'squeeze to order'? It was a bit like a gym machine with different levels of difficulty etc.? If yes, then I know what you mean about the interference. Ours had a portable one (called a Ferraris) I think (cue jokes about Ferrari cars!) that I was able to take home and do myself. I confess I was a bit lax about that, but it was great to have the option of doing it in private. In terms of symptoms, mine were around urge incontinence, difficulty wiping clean, controlling wind - so really just a crap pelvic floor. My op sorted a lot of that out, but am sure that going into the op with a stronger pelvic floor helped. Does this help? Ask away with the questions!
Cyee

Hi Cyee,
Yes biofeedback, but the probe is in the bum/anus (I havent done it yet as every time i go in i chicken out. Cant do it vaginally, due to vaginismus.

My problem now is wiping clean. After i go to the loo #2,I wipe, i think i am clean then go back an hr or so later and Im not clean. My op sorted out the urge incontinence & wind etc. But this is the last remaining prob (well in the back dept anyway). And its pretty annoying as you never know if you are clean or not - sometimes i think i am and i check - and im not. There's no real way of knowing. Its a serious prob when it comes to getting any way intimate (NOT SEX as you know)but any way close as i have to leg it to the toilet to check and then well you know.

Thanks for the info

My surgeon is in Leeds DMCT - Mr Jayne, he's very good, good reputation and has been prepared to help when the gynae dept at the same hospital just wanted to send me home to get on with it.

I think the bulking agent would have been great if my internal damage wasn't as severe as it is. I have nothing but a feeling to back this up but I think an awful lot of BA was used and so it was more likely to shift and cause problems. I have a 1.5x1.5cm lump of it settled in my vagina which makes sex painful but also causes general pain, especially if I have been sitting for a while. It also hasn't done much for flatus but definately has helped urge. On balance, I'd probably recommend trying it. I was more sore afterwards than I expected and wished I'd be able to stay overnight and get the good drugs but I am still co-sleeping & bf 11 month old dd so I had to go home. I understand it is absorbed by the body over time so its temporary.

And yes! on the sex stuff. The bulking agent makes sex pretty painful but oral stuff makes me panic because of my lack of control. Even if dh cuddles upto my back in bed, the pressure of his pelvis on my bum (& bulking agent) hurts me.

Nikita Interstim is sacral nerve stimulation.. I cant find the info for faecal continence but I think the priciple is the same.

hi Hulla, that really worries me, I dont know if i can take any more pain - i know it sounds wimpish but god are there no miracles out there??

My surgeons are also in Leeds - Mr Sagar (AR)and Ms Langdon (Gynae), and i do have faith in them, and they have done me some serious justice - i am so so so much better than before. Its just this last hurdle, i want to get the back area sorted but dont want it to cause the front any more pain/discomfort as I am having alot of probs in that dept. Anatomically my vagina etc are all supposedly fine, a bit too tight according to the gynae i am seeing in Derry, but she said the repair there was also very good and she wouldnt do/have done anything differently.

I have read back as far as i can to see what happened to you Hulla. Where did you have you baby? I had mine in Harrogate, 4th degree tear; combined op 5 months later with the two consultants above. ms Langdon was # really good, v understanding and supportive. As was Mr S.

Anyway am on the vino and am getting confused as to what im talking about. Will be telling you life story yet - better sign off. Cheers

Hi all,
DMCT I am a bit clueless about vagnisimus, is it something they can't do anything about? Just what you bloody need eh?
Glad you have good consultants at home and over in Leeds, it makes all the difference.
I've had an interesting 24 hours as have been in hosp! I had very light 'tightenings' which is exactly how I started last time, so went in to get checked out, esp as I'm only 35+3. This morning they decided it is probably a UTI (I keep wanting to type STI..! As if!). So I'm home and on antibiotics. As we all know, I'm having a planned section and was most concerned that they understood the sheer horror that would come from me going into labour in terms of my repair. Thankfully the midwives were all so horrified to hear about my fistula that they got the picture! Interestingly they said that they use my repair consultant (colotrectal plus general surgery) do 'do' their 3rd degree tears. Lucky ladies. I think that helped too, as they clearly know/rate him and wouldn't want to piss him off by having to send me back! Anyway, keep your fingers crossed that this little one stays in for a few more weeks. I've had the course of steroids nmnow just in case.
Take care all,

Howdy,
Cyee, they can and cant do alot about vagnisimus ( I think, or I bloody well hope otherwize im fecked). Some of it is mental apparently, some of it is physical. I personally dont think of it as mental, but it wont happen - so thats it. Apparently due to all the trauma and the horror or the birth etc that just the way it is for me.
Glad you are ok and IN GOOD HANDS!!!!!!! It is so very important. You will be fine, I wish you all the best and looking forward to hearing about the new arrival. D

Hi everyone, Just a quickie to say hello and find out how you're all doing. Any treatments, appointments, updates?
All fine here. Baby has stayed in (so far!) and I have started mat leave - hurray!
DMCT, sorry if I should already know this, but have you had counselling for the trauma of the birth? Regardless of whether it will loosen you up down below, I've heard really good stories about such interventions.
Right - I'm off now to re-organise a play area. The joy!
Hope everyone is ok.
Cyee

Please let me introduce myself and i am handing you a glass of virtual white wine nicely chilled. my story is different from yours but i suffer the indignities you are all going through and I have never spoken to anyone who has experienced what i have. I am older than you guys, my children are 24 and 21 and I had an anterior and posterior repair together with tvt last september. Since then i have suffered from nerve pain which has altered my life completely. My consultant dismissed my pain and eventually after wanting to die i sought a second opinion and in the process of tests to find the source of the pain was told that a fibroid that i knew i had was growing abnormally and the day before christmas eve my second consultant, a urogynacologist passed my case on to an oncologist. He is not interested in the nerve pain because the possibility of cancer is of greater concern. The pain i get is in my vagina and my bum (yes i to have been to see a bum doctor) no probes up my bum but i did have to go the the loo and have the whole process recorded on x ray with doctors in the room. Anyway two weeks ago i had a radical hysterectomy and yesterday i was told i dont have cancer but the histology has thrown up something else and i wont know the results for two weeks. BUT my main problem is coping with the nerve pain I am on a cartload of pills including tramadol, diclofenax, amytriptyline, gabapentin as well as paracetamol. My pelvic floor goes into a spasm and i have seen a womans health physio but because the whole area is so sensitive she cant do much. I cry a lot, I despair about never being the same again, I have not been out for a meal because i cant sit down, and now i have been cut open. Your thread has helped me to realise there are other people experiencing similar issues. I am worrying my vagina is too tight and that i will never have sex again. I feel like i am a freak but i am lucky i dont have to look after a baby while going through all this. And Ceee good luck with your baby

flymttm
I'm a long standing lurker on this thread with my own problems in this area and I just wanted to say - its not fair! you have been through quite enough already and now constant pain and test results to worry about.You sometimes have to wonder if you'll ever be well again,but dont forget you have just had major surgery,from which you are expected to suffer during recovery.I think this should be your lowest point which means the only way is up from here!
I know what its like to cry with despair and I have to say that I feel better than I did 6 months ago.Something I thought wouldnt make much difference has made my daily life so much more comfortable.Vagifem,a local oestrogen pessary,has stopped the burning,tearing,stinging pain I was having.
I dont know if thats any help but I hope they stumble accross a solution to your pain very soon
take care and stay hopefull xxx