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))

I'm sure Cyee or Jacksmama will be along soon to reassure you.
But from reading this thread from the beginning,it appears to me that your tale(or Tail-excuse the pun)is a familiar one.

The Diarrhoea coming out vaginally seems if not common,then "familiar" to some peoples experiences on here.

I can't really understand why "cancer" comes into all of this,and why anyone would be scaring you in this way,insinuating that your symptoms are linked.

If you have a Fistula,or a recurring one,then this is a "communication" between the bowel and your Vagina,that has occurred through the trauma of your labour.

Having Faeces in your vagina isn't ideal obviously,but plenty of people on here have had Fistula's and no-one has talked about them being Lifethreatening or linked with Cancer.I understand the risks with infection will be higher,but if you were unwell,you would be admitted and treated for this.

Is there any GUM Clinics nearby,at your local hospital maybe (the clinics that deal with STI's) they will have a Female doctor,who I'm sure will understand and listen to your fears,and treat you gently.

Also in terms of the surgery,read or re-read Jacksmama's posts,as she had a similiar experience in terms of being in alot of pain etc after childbirth.

One thing I think we have all agreed on,the discomfort after surgery is minimal compared to the pain caused by traumatic births,thats the honest truth.

You need to get referred to an expert in this field,and Cyee/Jacksmama will have the correct info about this.If nothing else you need to stop listening to all the "scaremongering",and hear the positive and accurate info from a surgeon who specialises in this field.

Sawyer64, thanks so much for your reply (at this hour, I thought no one would be around!). It helps to get some perspective from people who have actually been through similar things. I have thought about visiting my local GUM clinic - its just plucking up the courage to do so...
Can't believe I've even thought about trying to get hold of metronidazole over the internet to see if that makes the problem go away.

Sawyer - hope your infection clears up soon,

Jmontan - that all sounds a bit scary. I did have cancer (a large lower rectal tumour) when my second son was born and apart from a very strange feeling as he passed it on his way out my birth was as normal as it could be. Didn't even have any pain relief but that wasn't by choice - MW didn't turn up!

The passing wind vaginally is such a typical sign of a vagino-rectal fistula. You do need to see your GP, even if they are male. You need to explain your anxieties to them clearly before they examine you. There will be a female chaperone in the room when it happens. You clearly need a referral to a consultant so do not leave until they agree to it, and chase up the surgery every week until you have your appointment. Illness has taught me to take things into my own hand.

Don't be embarrassed - though nobody likes it - the doctors have seen it all before.

And me - I now have my first appointment with the plastic surgeon, in late June. Good thing I pushed for it in January! I've nearly finished my chemo. There's less than 24 hours to go - hallelujah .

sawyer hope you "mend" soon

thingone maybe i need to re read the posts but if you dont mind can i ask what you are having in terms of plastic surgery??

jmontan hi although we have different er whats the words "problems" down there i too am the kind of person that would not go to see a doc for embarrassement. Being on here and after having to see docs and have the op have made me realise that it is muc more common than we actually think.
I understand for the docs that they have seen it all before but for you i can see that "revealing" it and lying down is terrifying. All i can say i speak to them about your worries and fears but do go to see them.

I had my rectum removed as my tumour was so low down. The posterior wall of my vagina seems to have healed onto my sacrum. I've had a few abcesses (owww) and one of them made a sinus hole in my perineal scar. My surgeon wants the plastic surgeon to mend it as it's a tricky job. I understand he'll need to take some skin from my inner thigh to help mend the hole. I'll find out more in ten weeks!

At the moment it's all held open (to prevent infection) with a drain wrapped around the back of my vagina and through the sinus hole. Glamorous it is not.

cor blimey sounds er complicated

have to admit to not being er a little unsure of what the sacrum was but have googled it and now know

it sounds like it must be quite painful.... is it?

i must sound nosey but im just interested hope you dont mind i think its because i have not heard of this before.

I'm only the second woman it's happened to in the ten years my surgeon has been a consultant at the local hospital. so not surprising you haven't heard of it. He's a bit gobsmacked too.

Thanks for your advice ThingOne and Kentmum. Wish I knew what I was going to do about this. I have seen my GP for the anal fissure because bleeding and pain were unbearable so I wanted reassurance that that's what it was, but it's the vaginal examination that's scaring the hell out of me.

I have been googling this subject (fistula) a lot recently, against my better judgment, and I was interested to read that for patients who develop recto vaginal fistulas with Crohns disease they often don't do surgery. I wonder why?

Kentmum - are you actually from Kent? I only ask because I live in Kent too.

Thingone - I've read a lot of your posts on this thread and just wanted to say you sound like a really strong person. Really glad you're coming to the end of your chemo!

Hi all,

and welcome jmontan, I'm so sorry for everything you've gone through!! That sounds horrible! I'm fairly in awe of anyone who manages to birth a baby with a head circumference of 39 cm! In fact, I'm crossing my legs for you as I'm typing this [ouch emoticon].

I'm with everyone who said go to a clinic with female doctors and have a thorough exam. You can't continue to be in pain like this. And definitely, faeces in your vagina is A Bad Thing.
You will most likely eventually need surgery to repair your fistula. (I am honestly gobsmacked that you were refused a C-section - that is simply heartless.) But I promise you - while surgery isn't nice, and you wouldn't want to have it every week [tongue in cheek emoticon], the recovery is nothing like what you're going through now. You'll be sore, and you will need help, especially as you have three little ones (I only have the one and my mum came to help), and you'll be t-i-r-e-d... but in terms of pain down there, it's nothing, nothing like recovering from tearing at birth. You'd need to take your pain pills, rest a lot, not carry anything heavy, and have 2 or 3 salt baths every day, but within four weeks, provided there are no complications, you'll feel so much better.

So, here's my update:
I saw my lovely surgeon yesterday, and she's very pleased with me. As previously, she handed me a mirror so I could see when she examined me, and oh my gosh, even I can see the difference from when she examined me pre-op. What she thought was a polyp (more on that in a sec) is gone, and so is the ragged ropy scar I had. What I could see of the mucosa is healthy and pink (instead of red and sore), and I could not really determine where the new line of stitches was. My vaginal opening gaps a tiny bit, but not how it used to, because she took the incision all the way to the opening and repaired that, too. I apparently tore all the way along the episiotomy and deep into the muscle. And the muscle either wasn't stitched, or opened up again later.
I flinched a few times when she examined me (well, at first, every single time she touched me) but it didn't really hurt - it felt like I expected it to hurt, if you see what I mean?
She did say I still had a bit of healing to do, and so (poor DH!!!!) we're not cleared to do "the deed" for another 6 weeks at least. AND... ... because she had to excise quite deeply to get all the scar and the supposed polyp, things are, ahem, quite a bit tighter than they were, all the way down to the opening, so I have to either have some more physiotherapy, or buy a set of vaginal dilators, and stretch the opening myself. Otherwise, she said that sex would most likely be painful, and, in her words, "if that goes on too long, marriages break down". (She is quite the doctor - I've found few who focus on both the mental and the physical.) She also told me that she was a bit concerned by how much I flinched every time she touched me, because she sees that in women who have been severely traumatized, and that it might be a good idea to go see my counsellor again if that continued.

Now, about the "polyp" - she sent all the tissue she took to pathology to have it analyzed, and what I had is called a "traumatic neuroma". Basically a lump of hot and screaming nerve tissue that proliferates (grows) when there is severe physical injury. So that would explain why I felt pain all the way up inside me any time I sat down or walked too long.

I talked to her about registering a complaint with the College of Physicians and Surgeons, about the fuckwit OB who butchered sewed me up after delivering Jackbaby with forceps. It sounds to me like she really did a poor job. My surgeon said I could, if I wanted to, but to be prepared that it would be very difficult to prove that this was due to poor technique rather than poor healing. She said she was more concerned with the midwife who discharged me at 6 weeks post-partum without examining me or referring me for post-trauma counselling. At the time, the MW said she wasn't doing an internal because I was still hurting too much. I see the reasoning, and at the time I was relieved, but now, with hindsight, I have to say that that would be a prime reason to examine someone, if she was still hurting so badly.

I got a copy of the operative report, and reading it made me feel a bit sick and weak... I still react that way to this sort of thing, which is something else to get used to - I used to be so tough mentally... and yesterday when I got home, I was only relieved that I was healing well... but today I am so angry again, that all this happened, that I was at the mercy of these two idiots (MW and OB), that no-one who was with me (DH, mum, friend) spoke up to intervene when my labour went pear-shaped... I feel like crying and punching something, and most of all, I feel so helpless with anger that this just happened to me, and that things like this are allowed to happen to everyone who's posted on this thread, and countless other who feel alone and don't know whom to talk to. Feeling quite low at the moment, actually, and am trying to focus on the fact that I am nearly well again, and that Jackbaby is healthy and lovely...

Crap.

Hi Jacksmama glad to hear that the Check-up went well.

I think the Anger you feel is definitely warranted and directed well at your MW and OB,but I would think it would have been extremely difficult for you Mum/DH/and friend to "speak up" for you and change the events that happened.It is natural to feel "let down" by those we love not "protecting us" from all this harm that is done to us,but in reality it is hard for anyone to really know that the "health professionals" are making wrong decisions.Its even hard for us when we are the ones suffering.

Hindsight is a wonderful thing,so they say,but at the time decisions get made,perhaps wrongly,for all the right reasons.

At least in my Birth experience with DD1,I was ready to make a complaint,and was angry and upset.But after going through my notes and everything with my "Community" MW, even though she said she would have made different decisions,like letting me labour for longerits very differnt being "on the front-line",and the "Buck stops" with the doctor,as she put it.She said even with all her experience and knowledge,she wouldn't like to be the one who has to have the final say in the course of action needed to try and ensure a "good outcome" for Mum and Baby.

I cried when my MW left,and ripped my letter of complaint up.I thanked God for a my lovely DD1,and was amazed that she survived all "the events" that were unknown to me at the time.

I'm sure you know all this,and your story is different.It does sound like counselling might help you deal with these feelings,so you can "move on" and heal both physically and mentally.

Hey everyone and welcome Jmontan27, though (as always!) sorry you have to be on here.

Few quickies:

• ThingOne - YEY for finishing your chemo and the date for the surgery!
• JMontan27, not sure if this helps, but I was equally mortified about speaking to the docs and I didn't even have the oh-so-unhelpful insinuations about cancer that you've had to deal with. So my first approach was actually to have a telephone appt with my GP. For some weird reason I found it easier to say it all on the phone than face to face. So when she told me to come in, at least I didn't have to go through it all again. In my case my doc hadn't seen it all before (my fistula was tiny and so not feel-able plus my birth was totally not traumatic therefore no obvious signposts). However I do take some comfort in knowing that any poor person that sees her again won't have to go through that - someone has to be the first! Again, in my case I had an untreated rectovaginal fistula for 10 months, and I didn't have one infection. It's clearly not good for us, but our bodies are generally pretty good at looking after us (anyone with DDs on here will know poo gets where it shouldn't get and we're told not to clean it as vagina is self-cleaning). So yes it needs to be seen to and yes it's good that doctors are looking at all possibilities (including the scary ones) but please don't panic unnecessarily. That said, when I was in your place I wasn't as rational as I might seem now, so I do understand how horrible it is to have this situation day to day, and how incredibly embarrassing and awful it is to have to speak to people about it - it's just not pleasant is it?
• Sawyer - hope the new ABs sort you out. How annoying for the infection to go on and on
• JacksMama - what an emotional roller coaster you've had over the past few days. In my view, you have nothing to lose by sending a letter to your care team outlining what has since happened to you, the impact on your life and what you feel should happen in similar situations. Personally I feel a letter of complaint is always met with defenciveness in this litigious day and age, however to me you seem to be more interested in them understanding what their carelessness and lack of skill has meant for you. I'd therefore consider writing the letter from an 'this is my story' point of view, and you know, if they take the learning out of this then great, if they don't then it's probs fair to assume there's nothing you could have done to get it through their thick skull. On the otherhand you could just go for it - both are totally valid responses and only you know which (if either, or even whether there's another way) will deliver you some sense of closure/satisfaction. While I am not glad about how you're feeling, I am glad you have brough this issue up again, because it's something I did consider at the time but have not done... and there's still time!

Right - to work! So much for my quickies. I'd imagine you're all scared witless about me crashing the MN site if I ever get round to a 'longie'!!!

Sometimes I think the mental/emotional crap we have gone/are going through is just as bad as the physical stuff. For me, it is consuming my whole life and inhibiting my enjoyment of my children which makes me feel very sad for me and for them. Has anyone looked at the Birth Trauma Association website?

Cyee, I hope you don't mind me asking, but how long did your surgery last and how long were you in hospital for? I was wondering if repairs could be done under local anaesthetic (after all, the initial repairs are often done under spinal or epidural). I would rather be awake than put under a general. Also, I was wondering at what point you decided to see a GP about your symptoms (how many months post childbirth)?

Thanks

jacksmama how are you feeling today? sometimes when im feeling angry or upset i write everything down on paper, i know some may say its silly but it works for me also when im feeling that way i keep a diary of my thoughts and feelings.
Getting it all down on paper for me acts like a way of getting it all out. I know this isnt the answer but im wondering if it may help you with your own feelings/emotions.
Whether you are to make a complaint or not i really cant say what would be the best course of action to take. Discuss it with your dh. Maybe when writing things down you do your letter of complaint in rough just topour your feelings out.
Keep talking to people about how you feel get as much support as you can.
II agree with Cyee that your story could be used by professionals in any re training they need from time to time.

jontman yes i do live in kent

Hola - Jmontan27 - I went to my doc about 8-9 weeks after the birth I think. I don't think I'd noticed anything by the 6 week check.

I was in hosp for 2 nights (2.5 days) and I did have the op under GA. I think the procedure took an hour or so. I think they can do it under epidural though I'm not definite. I preferred to be totally knocked out! I was off work for about a month afterwards but had some great days within that time. However I wasn't consistently better for 4 weeks, and it took longer again to feel 'totally' normal. If my pain relief is any indication of the op, I was on a combo of normal paracetamol and ibruprofen when I came out. I took 2 or 3 Tramadol (stronger pain relief) but the above and/or the occasional cocodamol sorted me. I was quite surprised I wasn't on more hardcore drugs, but think the bruising was the worst part, not the repair itself. HTH.

oh er i have seen what i think is a stitch that must have er come undone a little its white a thread like about 1/2 cm long

had to resist the urge to pull it to remove it

Hi all, and thanks for all the hugs (although Cyee actually sent me big bugs, eeeewwwww.... ) and good thoughts.

I don't know yet what I'm going to do. I doubt I'll go ahead with the official complaint. I may, as suggested, simply write a letter to the MW and OB. Or not. The OB was a complete twat, and I doubt she cares. And my MW knows exactly how I feel, as I told her in no uncertain terms when I ran into her some time last year. To be fair, she said she felt terrible about my birth. But her "sorry" doesn't help me, either physically or mentally.

Sigh. Yesterday was a really crappy, tough day. It wasn't helped by the fact that I had to drag myself to a continuing education seminar after work, about nutritional supplements (something I have no interest in dispensing in my practice, but I needed the CE credits.) I was asking the speaker a question, and in its context, he told me that breastmilk is basically water after a year. What a twat. I laughed in his face and asked where he got that idea. After that, I pretty much tuned him out for the rest of the seminar.

Anyway - that's completely unrelated, just sort of capped my day.

How's everyone feeling?

Well I'm still happy at having finished chemo even though I won't be recovered for a while. But I'm now laughing at the idea of you laughing in a twat's face .

What do you do JackBUNNYSmama?

I'm a chiropractor. They've recently changed legislation here in British Columbia and we can now recommend and dispense nutritional supplements. Hence the seminar - although as I said I'm not interested. I don't want the added responsibility. But I needed two more CE credits and this was the only 3-hour sem before the CE period runs out.

I'm just now looking up research to email the twat to credibly refute his stupid statement. I did also say, "oh, water? Hmmm. That must be why my 13 1/2 month old, who could only be said to be experimenting with solids, is in the 95th centile for height and weight... must be those animal crackers and the applesauce."
Fuckwit.

Hello Guys.I'm ok apart from persistent stomach ache,and low backache.

I'm taking my Flagyl and Co-Amoxiclav like a good girl.

How thick was that lecturer?

If breast milk was only water over the age of 1 yr,how do the mothers in India etc. manage to feed their children.Its common practice to BF until they are 3 or 4,either there or in England.

Obviously its common knowledge that its not ideal as sole source of nutrition after the age of 1yr.What a fool eh?

Did you say you were an RN as well JacksM?

Oooh read the first bit about festive smileys,but they have the "letter" wrong

What utter (udder!) bllcks that breastmilk statement was. My middle son ate no solids until nearly a year old and was breastfed until 17 months, having always been on the 95th centile for weight and 99.6th for height. He would surely have wasted away if breastmilk was purely water once the baby turns one. Don't know where that guy got his facts from!

No they don't - you must be thinking it should be E for Easter but it's B for Bunny!

Hello, I'm new to this section and have been amazed at the courage and tenacity shown in these posts.

I'm currently in agony with an anal fissure + haemorrhoid and would love to hear from someone who's been through this.

DD2 was born 9 months ago- uncomplicated home birth, and I think I've had an occasional recurring split in the anal skin. It's never been enough to really bother me- you now how you just get on with things with babies to care for, and I only noticed it momentarily whilst passing a bowel movement.

But now it seems 100 times worse. I helped DH to carry a wardrobe down the stairs [slaps forehead emoticon!] 2 weeks ago and got a haemorrhoid in the same place. The fissure feels like a hot burning pain pretty much all the time. I find myself grimacing and being short of breath- it's so painful.

I saw GP at the beginning of the week and he Pxd steroid cream (I had tried anusol to no avail) but it's only fractionally better now.

Oh God, it really hurts.

Hi RinkyDinkyPinky
I can very much relate to what you are going through as far as the anal fissure thing goes. I first developed one after the birth of my 2nd child 3 years ago and it made my life hell for a year. Just like you describe,there was a hot burning pain all the time and going to the loo was excruciating. When you google it, a lot of sites say that the pain is only when you have a BM, but I found the pain was constant. Because I was breast feeding at the time, the docs couldn't prescribe much, but just said drink tons of water and eat lots of fruit and high fibre foods. TBH, I didn't do this. Eventually I was prescribed GTN ointment which is supposed to work in a lot of cases, but it didn't really work for me. In the end, my fissure resolved spontaneously after 11 months, 1 week before my appointment with a colorectal surgeon. I saw the specialist anyway, and they said they could see the scar where it had been. Anyway, if you read my other posts, I was desparate to avoid this recurring when I got pregnant again and wanted a caesarian, but the gynaes were adament that anal fissures could not be caused by childbirth (rubbbish!). So, after giving birth by ventouse 4 months ago, I now have the fissure again and am in pain all the time again. Have also fot a fistula which is even worse.

I would say don't be too despondent though. My experience is that they can eventually get better by themselves. If your steroid cream doesn't work, maybe you could ask about the GTN cream? Let me know if you fins anything else that "works"!

Hi jmontan, I did read your earlier post and felt v that you weren't listened to wrt C-sect. How awful to then have a recurrence and fistula. Can you fast forward an appointment with a specialist? Don't know what area of specialism- it's new to me. It seems to me that the sooner we get some kind of resolution with these problems the quicker we can get on with our lives and kids...

Thanks for the advice re GTN. I'll look it up. I'm aware that the steroid cream should only be used for a week anyway. And it hasn't made much difference.