Spincter injury, fistula - support eachother?

[Cyee]

Hi everyone,

Wonderful weather we're having

I am propped up in bed post-hospital and I was wondering if anyone out there knows of, or would enjoy/benefit from, a thread or support site for people who have experienced the above (sphincter damage, fistula etc.) as a result of childbirth.

In my own experience, this whole area is a bit taboo. In fact the consultants reckon there are many women who have some symptoms related to the above, who never seek treatment. The thought of women embarrassed to discuss these matters is awful, yet that seems to be the case.

So - this (while souped up on painkillers) is a call to arms:

• Is there a site out there for women like us?
• If not, would you like there to be?
• Would a thread on MN especially for this, be useful?
• Would it be useful to share experiences with consultants/physios/hospitals/procedures?

If these matters resonate with you or anyone you know, it would be great if you could point them in this direction. I'm going to post in the 'health' and 'childbirth' sections too.

I know too well the taboo around this. I posted on MN when I got my diagnosis and used a different name...

Hope to hear from some people soon.

Cyee
(successfully repaired as of last Wednesday (fingers/legs crossed))

Oh - have just found this thread.

I am again another sufferer of a 4th degree tear after my ds 10.5 months ago. I have to dive out now, but just thought I would pop in and say Hi!!

Hi Cyee, Yes I am the eldest of 3 maybe this is why I am so impatient?! Saw a different gp last Friday and practically sat there crying with the pain 'in the arse' as it were. She examined me said I had a lot of scar tissue round the bottom area and would refer me. she didnt understand why the specialist (colorectal) who I paid to see privately hadnt picked up on this. To be fair the specialist said he could operate on the original wound to see 'whats there' but when I asked he if was confident he could fix it I was to scared to go ahead as didnt (obviously) trust him. Anyway, I have been told by gp she is referring me to general surgeon. Not sure if this is the right person... Maybe they can do something with scar tissue? Had really bad night last night as was in so much pain, had a bath which helped but feeling down about it as like every other poor soul on here just want to get back to normal.
How are you feeling Cyee, and everyone else out there?

DMCT,

Been thinking about you today - tell us how it went when you have a moment. It is a pain in the ass - that is for sure! I hope the drugs work.

On that earlier post.. I am in no way rampant and ready to go, but I am honestly starting to feel more positive about the future. The op has definitely worked in terms of getting rid of the fistula and while it may take time, I am visualising my healed 'bits' and the prospect of being intimate again. I think it'll be a case of taking it slow and being a bit like kids again, but I'm determined to get my mojo back. If I can't, and if there's psychological damage to unravel, I hope I will have encouragement from my DH and the courage myself (you might not think it from the subject of this thread, but I am a very proud and private person) to seek some help.

I look forward to hearing about how you get on.

DaisyM - that's funny that we're both eldests!

I'm so sorry to hear about your GP appointment on Friday and that you haven't had much confidence in the people you've been seeing. It's so lovely that you were thinking of me and this thread when you've been having such a tough time yourself. The general surgeon may well be able to advise on the scar tissue as this is maybe more 'general' than the repair op itself. As I think I mentioned earlier on this thread, I have heard there are things they can do with scarring now. Hopefully they can also do this when it's in such a sensitive area. Do you know when your referral is going to be yet? My consultant mentioned that the scarring would initially feel 'hard' but that it would soften up with.. ahem.. use. I assume this means both toilet and intimate 'use'. I wonder if that's why the colorectal didn't mention it? Massage sounds like it's a way forward in the interim.

Hello SpecialOffer - come back when you can and let us know how you are. My LO also 10.5 months now!

Hope everyone out there is doing ok.

DMCT - just properly reread all these posts and realised it's your rectal appt today (don't know what appt I thought it was). FANTASTIC you got it brought forward. Oh really thinking of you and hope you are ok and the drugs knock you out. My equiv appt was my first rectal exam and I was terrified... Thinking of you.

Ok am back, had my son last July, and to cut along story short ended up in theatre straight away having had a fourth degree tear.

I was in agony straight afterwards, on loads of painkillers etc to help. Got referred to a physio who helped my scar heal loads, and it appeared I had got away with any long term damage. Got released from Physio in Dec, and it all went well for a while.

In March I started to experience pain in "that area", it steadily got worse until sitting was painful. My DP eventually got me to go back to the GP, who referred my back to my consultant during preg. They have referred me back to the physio who I see the week after next.

Only problem is the pain has got worse and worse, and I take painkillers everyday. I am an active person and it kills me that I am in agony if I walk too far in day (2 miles????)

Anyway nice to know there are more people out there in a similar position, as I get the same as everyone else "but you have a healthy little boy" (well actually not so little)

Hi there SpecialOffer - yep mine is not so little now! Also a July baby - can't believe they're nearly one!

Hope the appt with the physio goes well. What did they do with you last time? How did they help your scar? Let me know as will go and ask mine to do the same!

So have they referred you to a gynae/obs consultant? Were they the people who did the repair job? Do you have confidence in them?

Really sorry to hear the pain is back. You must be so gutted especially after a few months of things going well. Is it primarily pain, or do you have any... ah... mechanical problems?

Keep us posted on how you go. Just re-read this and sorry for all the questions!

Hi again CYEE , had my appointment and the consultamt i was suppose to see didn't turn up, so i saw someone else.

Very enjoyable experience!?!?! ? not.
The drugs did help though and i have no fistula, so that's good, but sphincter (Ias & Eas) seem to be v bad. Have to go for a scan in nxt two weeks - it would have been nice to get it all done at once but no joy.

So it will be another visit and more drugs . The consultant i saw was ok, a bit flippant really, but then when he saw i was upset and that i knew quite a bit about what he was talking about- he was a bit better.

He talked about using the overlapping technique to fix it - dependig on what the scan shows?

Special offer what type of physio did you have (not sure if i really want to know - but hit me with it anyway!

Anyway better go as the little man is waking. Enjoy the weekend

Hi DMCT,

Glad the appt went as ok as these things go. It's good there's no fistula. No one could actually feel mine - they only knew it was there because of the symptoms and the scan.

The overlapping technique is what I had I think. Basically I think they reconstruct the muscle etc. that's left. The research I saw online seems pretty positive for the technique, especially for otherwise healthy people. Another good thing is that if they aren't successful first time, they can have another bash. Whereas with some surgeries you only have one opportunity.

It's a real shame that it's apparently so elusive for consultants to display both technical expertise and bedside manner!

Hope the next session is ok. Make sure to keep us posted.

Cyee

Hello everybody, hope we are all feeling OK, well as OK as we can do with our various ailments... Have got appointment through to see general surgeons on 5 June and already starting to panic. Worried that the usual thing wil happen- will get there, be seen my a very junior doctor who wont have read my notes, will have to go through the whole (now very long) saga again. They'll examine me, say theres nothing wrong and send me on my way. Dont know how I will cope if this is their attitude as the pain is really bad at the moment and makes walking difficult. Maybe I'm being pessimistic but my experience of the NHS since giving birth has been awful!

Hello DaisyM,

Glad you have got a date soon - but sorry to hear you're worrying about it due to your previous bad experiences. It's just not what you need is it? Sounds like they've really let you down. If you have the name of the consultant, maybe you could ring their secretary and find out whether you will be seeing that person or if other docs will be there? They might be able to give you some tips, or at least you'd know that you could say 'thanks but I'd like to see the actual consultant today' because you know they're defo there.

Is the scar tissue the main thing they're looking at for you?

When did you have your little one? What happened that cause the damage? Did you post this info earlier but under a different name? Sorry if I'm being slow!

C

Girls

I have just had an episiotomy repair, a TOT put in to support my bladder and a fissure repair done by a wonderful man in Blackheath London who works for the NHS and Bupa - his name is Mr Patwardhen - he is super - my life is completely different now - both in terms of being able to have sex and feel somethig and not peeing myself or being worried that my insides where going to fall out at any moment!

Mr Patwardhen is fabulous, very kind and gentle and understanding. He was so cross when he saw me at the crap job the midwife had done sewing me up after having DS - he truely believes that midwives should not be allowed to sew women up and it should be an obstetrician everytime.

Really girls if this is affecting your lives so muich go and see him and seek help - I feel like a different person (DH thinks I do too )

Good to know Twinkie1 that there are consultants out there that not only care but can do fantastic repairs from the botched jobs so many other midwives/doctors do! I paid to see a Mr Sultan who is apparently an expert in 3rd degree tear repairs and is a leading consultant in this field. Got my hopes up that he could help me but when I saw him his social skills were nil, he didnt seem to care and pronounced me fit and well. Yet I am skill having problems 2 years after giving birth... Thanks for recommending your consultant, definitely worth me looking into. Pleased you feel so much better too!

Cyee- I dont think I've posted under any other name though it is possible! Yes, the scar tissue is the main problem though another gp I saw said I could actually have sutures left inside which hadnt dissolved and it could be this causing the problems. Its difficult to know who to believe when you're constantly being told different things by different 'experts'. Sorry feeling a bit down about it all today.

Hi Twinkie1 -

Great to know you're so much better now - fab story!

DaisyM - sorry you are feeling crap today. I understand the up and down nature of it all. I had a really sh*t day yesterday morning but was great the day before. Some days I'm really positive about recovery, the next day I'm fed up with it all again.

I suppose these emotions are maybe to be expected under the circs, but definitely not helped by getting different advice from lots of different people. I REALLY hope the appt next week exceeds your expectations, because I know I took a lot of confidence from my consultant. However my sis in law (hosp doc) tells me that unfort the price that seems to be paid for technical brilliance is poor social skills... maybe a bit like that TV advert... the clever/dumb balance! So while I hope you do see someone with some empathy, I guess the most important thing is to get a consistent message and a positive plan for the future. I really really hope you get this and really do feel for you esp now this has been going on so long. Keep coming on here and keep us posted with how you're getting on.

C

Hi Ladies,
I haven't been through what you all have(thankfully), but I am having a few problems in that department.
I had Ds in 1998 and ended up in theatre having Kjellands forceps and therefore an episiotomy. I found that I didn't heal at all well for some time and when I eventually got back to a sex life, I tore every time he came near me. I saw a consultant(young Muslim woman and probably a virgin)and she too was rough with me. Told me to wash with aqueous cream not soap(I never use soap down there anyway!)and she prescribed some cram to apply which didn't help anyway. Anyway, I ended up being celebate for a long time and healed ok during that time and when I did get a sex life back, it was ok.
When I had Dd in Dec 2006, I only had a first degree tear and took arnica afterwards. Unfortunately for me, I've only had sex once since her birth, but I did tear slightly again. It was also very unsatisfactory as I cannot get my muscles back to being toned. I have a weakness in my anterior wall. I've been seeing a physio because of this and I too have to go when I have to go or I have an accident. Also I slightly leak urine, but usually only at night. She was going to refer me for a TVT, but then decided on something else(though I can't remember the name of it), which involved probes to see how incontinent I really am...I bottled it though and having spoken to the physio, I'm now going to buy a Cleo Q Discreet. She said that the hospital had had some similar, but that other patients had not returned them(never understand why people do that). I'll be ordering it soon and will let you know how it goes if you like?
Bio oil is very good for scarring, though I've never used it on my bits.

Hello everyone. Thank you Cyee for kicking this thread off since, as many posts here testify, the medical profession doesn't necessarily recognise the impact birth injuries can have on women's lives.

I had my little boy 3 years ago and had a 3rd degree tear. I have found the resultant faecal incontinence very difficult to bear (even though it doesn't happen very often thank goodness). I have been lucky in that I have been referred to see a colorectal surgeon and received wonderful support and care from a physiotherapist.

I'm sorry that others have not been getting such support and at least through forums like this we can offer information and help to each other.

Thanks again x

*cream, not cram.

Hi and welcome Solo and FiBee - Though of course I am sorry you have reason to post on here in the first place.

Solo - Just had a look at that Cleo discreet - very interesting! I borrowed something called a Ferraris (vroom vroom) from the physio, which I think was more about measuring your pelvic floor activity than doing the contractions for you. I thought it was great to be able to do that in the comfort of your own home, never mind get help with the exercises. It would be brilliant to hear how you get on with this. If the tests were the same as the ones I had (anal probes and the like) they weren't remotely as bad as I thought they'd be (I very nearly bottled it as well, esp when I arrived to see what looked like a massive dildo It wasn't for me though!). So if the Cleo doesn't yield good results maybe they might be worth having.

Are you fully recovered now FiBee? Or are you still undergoing treatment? What did your physio's support involve? Sorry for all the questions!

It really is unbelieveably sad to read of the poor sex/intimacy lives that many of us have had/are having because of these injuries.

Hope you both keep an eye on this thread - great to have as many different people with different experiences as possible

Lol@ massive dildo make your eyes water under normal circumstances.
I will let you know how it goes. I used to be able to do pelvic floor exercises, no problem. It's just all gone to pot and I'm crap at them now.
Incidentally, I told my friend about the Cleo and she bought it and thinks it's marvellous! though, she didn't have any real trouble in that department anyway - lucky cow...:P

Ladies,

Me again. I am thinking of setting up an info/forum web site for people like us. It wouldn't be a big deal, just a repositary for info and hopefully some and facts/figures. In my dreams it would potentially also get funding to provide hospitals/physios with more kit or at least raise the awareness of these problems, which I think have been hidden. It would maybe also recommend/feedback on procedures.

If I did do this, would you help me populate it with experiences/feedback?

I am mainly posting this as a push to myself to do it, as I am passionate about these issues now and would have liked to have had access to this sort of info myself.

It would be great to know what you think. Thanks!

Cross post Solo Yes even in normal circs that would be a step too far!!

Great news about the Cleo. I see they do face stuff as well. I could have a whole makeover!

Hi Cyee, I think thats a great idea. What would really have (still) benefit me is list of physios, consultants etc who are sympathetic to our injuries and would be able to help either via normal NHS referral or privately. Its so depressing trying to find the appropriate 'expert' especially as all the gps in my practice seem to have no idea who to refer people to! and of course I'd be happy to help in any way I can

Thank you DaisyM. I'll add those suggestions to my (growing!) list

Yep, I'd be happy to.

I'm also trying to work out how I can afford the whole Cleo kit and kaboodle which is the reason I've not got my arse in gear and ordered it yet. You can get it on interest free if you are working though...I'm not atm, but said friend got it and she's not working...also, it's on special if you order the Cleo Q multi gym...saves a bit.

Cyee - I am sure Mr Patwarghan (spelt correctly this time) would be happy to come o here and answer questions - he is a leader in this feild and trains others doctors to do the repairs - he was shocked at what had been done to me and he said he is always trying to think of ways to spread the word that women don't have to suffer stress incontinence after childbirth or a crap sex life due to botched tear repairs!

Hi

I'd be more than happy to share my experiences (embarrassing though some of them are!) Personally I had no idea that in this day and age women could emerge from hospital with bottoms that don't work and pelvic floors that need scaffolding to keep them up.

As for my treatment, I was told at the time of my son's birth that I had a third degree tear and that faecal incontinence could be one of the repercussions but it didn't sink in till about three days later having been fed a steady diet of lactulose I exploded in the middle of making my way to the loo and had NO control over it. This persisted over the next couple of months so at my 6 week check (at which I wasn't examined - I thought I would be) I asked to be referred for physio. I had to use the Cleo type machine which was 'interesting'. I went for physio for about 6 months and it made a huge difference.

I also got the referral to the anorectal consultant and to cut a long story short was told that I could have a repair but since I hadn't finished my family it might be better to wait. He also suggested that I might want to leave it a while as I am coping at the moment, he also said (and I don't want to frighten anyone here) that the results of repairs have a limited life span.

I still have accidents and near misses (complicated by IBS)but its the mental damage I find hardest to deal with

Sorry - a bit of an essay there but like you I feel very strongly about this and I'm still quite angry that this happened to me - or could happen to anyone when we supposedly have all the technology available to make births safer.