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))

mehgalegs Im sorry, just re-read post and Ive called you merrylegs Ill have too blame the coedine, it does strange things to me!

Wish you better Flourybaps!

Sounds like you are "in the wars"!

Let me know how you get on with the Antibiotics,as I'm on Day 4 of them,and discharge hasn't let up yet!

Hugs to Flourybaps - that you're feeling so rough!
at "merrylegs">

I've finally got some news. I saw my consultant this morning. I'm going to have to wait a bit but I'm in the system now.

First off I have to have an MRI of my pelvis, which should be within a month, then I need an appointment with the plastic surgeon. He's based in the next city and only comes to us once a week, but that should be about a month after my MRI. He won't operate until at least three months after I finish chemo, which would be the end of June, but it may well be longer.

And I have to lose some weight as flap surgery is less effective in the squidgy. I have put on a lot of weight in the past 6-12 months going from a normal weight to technically obese. I had to buy some size 16 knickers the other day . I'm hoping I can lose at least a stone before I see the plastics man and then another by the end of June. I told him I'd already stopped the chocolate!

Hi ThingOne, that's good news. Well, not so good news having to stop the choccies, obviously. How is the chemo going? Are you feeling dreadful from it or doing ok?

I feel dreadful for five days after chemo and not good for a few more. Then I feel fine-ish but tired for the rest of the fortnight. I keep chanting not long now not long now.

Is it one round of chemo per month or how often do you have it? And how many more rounds?

It's meant to be one cycle every fortnight but sometimes is 17 or 18 days instead, for various timetabling reasons. I've also had some bad coughs and colds (I have asthma) which means I've had to delay some. I will have 12 cycles in total. I had three last spring and I only started my remaining nine in October. I knew it was more likely to be a six month affair rather than 17 or 18 weeks.

I start cycle number eight on Monday and number nine three weeks later .

Best of luck on Monday!!

Good luck today thingone.

Thank you for the scar tissue advice. And LOL at merrylegs, I quite like it, wasn't she a foal or something?

My internal stitches are starting to dissolve, feeling a bit livlier this week.

How's everyone doing today?

How do you know your internal stitches are dissolving?

I can see one or two of mine,and feel them but they seem to be still in place,except for that one piece of mauve cotton that came out last week.

Hi all,
Lots of posts to catch up on. Hope you all are ok - or start to feel better soon. When I started reading I was like 'who's Merrylegs?' LOL!
You're nearly there ThingOne! Hope the next few cycles go pretty quickly and hope today's was ok
Take care all,
C
PS Yes, we were all talking about perineal massage and it is helpful I think
PPS I was at a hen/bachelorette do this weekend... I just caaaan't take the strain. I am exhausted now!!

Sawyer. I have been having looks with a mirror, I could see a couple of really dark, thick stitches just inside, they have faded to grey now and when I wiped myself I saw two bits on the tissue (initally i thought they were worms and nearly fainted!!)

I also feel slight twinges now and again which I assume is the scar tissue healing.

Oh right thanks.Sounds similar to me with the twinges.

Think you are slightly further ahead than me though,as looking back you said you were 21+ days on 3/03/09.

I was 20 days that day,so I'm 26th day today.

Hello Cyee,hope you are well.How's you FIL?

Wonder how Flourybaps is getting on?

Yes, I sahll be 5 weeks this weds. It's actually gone quite quickly. looking forward to driving again. I have been spoilt with friends cooking for us and taking my boys to school. i have well and truly put my feet up. Have gained too much weight though, need to sort that out next.

Ooh yes I have that problem too,no exercise and plenty of rest,not much good for the waistline!

Yes another one here for the fitness crusade. I have that wedding in 6 weeks, so my target is to tone up and astound my fellow hens with my svelteness

....that said I just wolfed down my dinner. having previously thought 'I'll just eat half of it'. Zero willpower...

Hey Sawyer64 - thanks for asking about my FIL. He has actually just got out of hosp. We're hoping he gets to see the oncologist on Friday but he's absolutely delighted to have escaped hospital so fingers crossed the momentum continues in this positive direction

Hi everyone
Just found this thread and it's made me feel a lot better that i'm not alone or unusual..have been feeling like it.
I'll try and keep it short..
I had a long and difficult delivery but in short after being transferred to bigger hospital in an ambulance (v scary) they had to give me a rather long episiotomy to get my DS out as he was very distressed. He was quite a big baby, 8 lb 8oz with a big head and he just wouldn't come out.
Had to go back in for op to remove retained placenta after forcing myself on the midwives INSISTING that there was something wrong ( they told me that the stuff hanging out when i went to the loo was 'the end of my stitch' - um, i think i know the difference between a piece of thread and bits of human tissue! They sent me home.This shows their attitude) I went back in with a raging infection and my DP insisted they at least look at me again.
Anyway that op did nothing for my stitches either and they gave me iron tablets for anaemia as i lost so much blood which caused me to become constipated and tear my already weakened 'area'.
I was in so much pain, i couldn't even sit or lie down, it was such a deep muscle ache that could only be relieved by standing up - i have no idea why lying down didn't help. I was walking around my flat all day crying and having to BF my DS standing up. After 6 wks i got some GTN ointment which meant i had to stop BF'ing which i felt so guilty about.
Managed to get to see a consultant when he was about 4 months after phoning hospitals in agony as my gp referred me to gynae who told me they knew nothing about anal fissures and werent quite sure why i was there!!
Consultant then told me i didnt need to stop BF ing but DS wouldnt go back on .
Anyway they have told me to just keep going with the GTN ointment (Glyceryltrinitrate) and they may have to do a plastic surgery op to put skin over the wound. DS is over 6 mo now.
I am still in pain and it seems to me that the muscle tone around the anus is the problem - why it wouldnt heal in the first place - no blood getting to it as muscle in constant spasm, and why i keep getting recurring fissures...they said they would rather not do a procedure where they cut the muscle as they mainly do it on men (?) and it could mean i'd be faecally incontinent. But i can't see how things will improve as they are..its been 6 months. I'm in pain as i type this. Its hard because i cant see it getting better, i can't see how it can improve. I have been advised to have an early C section if i want another baby.
DS is a total angel though. I have been so lucky with him and he keeps me going.
I know how hard i have found it with the problems i have had, but reading some of the things some of you have had to go through my heart goes out to you. I can only express that i dearly hope you get some respite from the suffering you have so bravely endured. It is so horrible not to be able to enjoy life in the way you expected. Keep strong ladies.
Thanks for reading

Hi MistyGee,sorry to hear your traumatic story.

My experience was totally different,so I don't feel able to advise,but I have learnt from Cyee and Jacksmama,that there are definitely specialists in this type of surgery,and although Cyee and Jacksmama aren't in the UK,we have specialists here too.

It sounds like you need to speak to someone,who can explain things in a more positive way,I'm sure the people you are speaking to,to be so Negative aren't specialists.

I'm sure someone will be along shortly to add to this and help you.

MistyGee, I'm really sorry to hear your story. There is definitely a recurring theme about medical people just not listening in some cases.

I would strongly advise getting on your high horse and demanding better treatment. You can be referred to any hospital of your choice through your G.P so it might be worth going back to them and asking to be referred to a specialist centre. I now go to a hospital over 50 miles and although the treatment hasn't been easy (I've had 2 failed repairs) I'm confident that the consultant knows what he's talking about, has the required experience and will fix me eventually!!

I hope things ease up for you soon. x

Hi Misty - I am so and for you having to go through this. Do demand to see a consultant!!! I don't have much time now (am at work ) but will check in again. Remember that this is the "there is no TMI" thread and we're all here to cheer you on and hold your hand as needed.
xxx
JM

Oh Misty that's such a dreadful story.

Whereabouts are you, roughly? I'm based around Manchester and there are plenty of colorectals in this area (and I know across the country) who have done a lot of work (very successfully) for women with post-natal injuries of this kind.

It sounds like you have had awful care so far, so I would march back to your doctor, tell them about this thread if necessary and tell them to refer you to both a women's health physio and a colorectal specialist. At the very least they need to control your pain better.

Post birth your tissues are very fragile and that might account for ongoing pain - as for the standing up part - I was a bit like that too. I suspect it might be because the tissue is just hanging loose (!) and not being pressured by sitting position etc.

I wish we could do more than offer you advice (a hug might be good!). Please stay on this thread, especially if your medical team are a bit clueless because many women here have been round the houses and back again so you could benefit from their experiences to look after yourself as best you can.

Delighted your DS is such an angel - sometimes I think they just know I think. Take care of yourself and ask any questions you have. Nothing is out of bounds on here!

Cyee, glad to hear your fil is home.

Sawyer64, how is the infection? have the antibiotics worked? My swab came back normal so not sure what the discharge is will just keep an eye on things. I also bought some epsom salts and have been having daily baths which im convinced are helping.

Misty, welcome to the thread but sorry you have to be here and sorry you have been through such a rough time. I can identify with the frustration you feel towards medics, I went to my Gp with vaginal pain and rectal pain and difficulty pooing (can you tell this is the thread of no tmi) and she actualy said to me youll just have to bear with it, these things take time to setle down!

I insisted on a referal to a colo-rectal and gynae consultant and got both. The first colo-rectal consultant I saw missed my anal fissure grrrr anyway saw a second colo-rectal surgeon who specialises in post birth trauma she was fab, very gentle and understanding, really felt like she had seen it all before and knew what she was talking about.

Im 2 and a bit weeks post op from my posterior repair and im having diltiazem cream to treat the anal fissure and movicol to avoid constipation, which I would highly reccomend you try and get, it dosent cause awful wind or bloating as lactulose seems to.

I really think you need to go back and be refered to a colo-rectal consultant, it is your right to do this, pref one who specialises in pelvic floor/ post birth traumas.

Im not sure why they told you spincterotomy's to repair your fissure were usually done on men or what that has too do with anything tbh My consultant told me she is treating 5 women at the moment who have fissures post partum.

Very sorry this is war and peace isnt it!

Hope everybodys ok and im right there with the needing too lose weight people, Ive started weight watchers (again!) as we are booking a lovely holiday for June to cheer me up.