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))

Sounds like the NHS could do with running a few "fistula awareness" training courses for some of their employees. Thanks for the info MamaBL - interesting that your prof reckons it could sort itself out. Mind you, not believing in pelvic floor exercises seems a bit bizarre! Having said that, I saw an obstetrician when I was pregnant who categorically stated that babies could not get hiccups in the womb and that I must be imagining it!

Hi DMCT, I was hoping to contact you by email, I've often used these type of sites but its always so upsetting for me, I'm desperately unhappy. I live in Ireland as well and am finding it difficult to get help. The main answer I'm getting is its not that bad and you can live with it. Its impossible to hide my anger about the forceps delivery over 18 months ago now. I have lots of nerve damage with bowel problems(the opposite of everyone on this thread, I can't go for a week sometimes even with the use of daily enemas) lots of pain down there, prolapsed everything and no sexual function at all. I wonder who you got to help as I can't afford to leave and pay for surgery abroad.

Hi RuinedandUpset - welcome to the thread but so sorry to hear what you've been through and are going through.

I hope DMCT will be along shortly, but I can answer one of your questions on her behalf (hope this is ok DMCT!). She had her treatment in England as she was living there when she had her baby and the injury. She has since moved back to Ireland.

I am so so sorry to hear you are getting such a terrible response and I can completely appreciate how angry you must be. Do you live in a city/town or rurally? Have you been referred/treated already? I'm also Irish so know the system a bit. Really feel for you if they're behind in the times with this and you're suffering as a result.

Take care of yourself and hope DMCT comes along shortly as she knows the system better than me.

Hi RuinedAndUpset - you emailed me a few months ago... I'm so sorry I wasn't able to help you. I hope someone else on this thread can.
((((((HUGS)))))))

And btw folks - this thread is taking ages to load and I have the time since DS is napping so I will start a new thread for us. Will post link in a mo.

NEW THREAD HERE

hi, not read all the thread but would like some support, i gave birth 7 wks ago it took 2 hours, was encouraged 2 push due 2 baby in distress resulting in a 3rd degree tear, was taken 2 theatre for2.5hrs, suprisingly i had no feeling but was urine and faeces incontinent, a week later my husband saw my "wound" and noticed it had burst open, the mw sent me straight back 2 hospital, they decided 2 let the wound heal naturally due 2 the depth of it,and gave me an appointment for 3 months time. The physio says i have no pelvic floor muscle control and can not start helping 2 correct this till my wound is either stitched up or healed. i also have an appointment with a colcrectal specialist coming soon i still have no feeling in this area, even when they are inserting things in my anus,i dont know what 2 expect or what questions would be good 2 ask please help x

Hi melwoods - we've moved to the second sphincter support thread because this one was filling up. Click on the link in my post above and it will take you to our new home. I'll copy and paste your post to the new thread so the rest of the Ragged Bunch will see it.

Congratulations on your little one. What happened to you is horrible. All of us are feeling your pain!! I suspect your physio is right, that the wound has to heal before she can help you. It took me about 6 - 8 months before I had proper feeling in my bits again and before the incontinence was gone.
I'm so sorry this happened to you.

I am so glad I found this thread! I thought I was suffering from something so rare there was no one else out there. I have tried to find information about peri-anal fistula resulting from childbirth and it is really difficult. No books or websites even mention it! It's like a cover up conspiracy!!
I gave birth to my baby in Feb and had an episiotomy that extended into a 3rd deg tear. Within a day or two I knew that something was not right as the pain was increasing and I noticed stool particles on the paper that were coming from somewhere they should not be. I also felt gas escaping from the stitched area. The whole area became infected obviously and the stitching all gave way. I think that my labour was mismanaged and the repair was substandard but as I live in the Middle East I doubt I will ever receive acknowledgement of this and suing isn't really an option.

I became very depressed, lost weight, couldn't keep up my breastfeeding and had a crap doctor who seemed afraid to give me any bad news in case I had a breakdown or something! He attempted to repair the problem after 6 weeks which I now know was way too early as the tissues could not hold any repair. I knew straight away that it hadn't worked. I changed doctors and they said that nothing should ever be attempted until at least 3 months after the infection has cleared.

Now it is 8 months since I gave birth and sustained the injuries. I am going tomorrow to have surgery and I am ill with nerves. They will put a seton thread in place that will basically cut through from the fistula outwards, slowly over a number of weeks. As I understand, the thread will form a loop going through the fistula, into the anal canal and out through the anus. This will mean it will cut but heal as it goes and will be less dodgy that cutting the whole thing open. I am terrified of losing continence and although my doctors speak very good English I am never 100% sure of what they are saying. I am not really happy that the thread will cut through so much healthy tissue but I suppose I have to believe in the doctor, although that is hard after the experiences I have had.

I read that many of you have psychological damage from all of this like I have. If I even think of having sex I start to cry and panic inside. I only managed to insert my own finger this week and it made me feel ill. I don't know how my marriage will survive but it has been to rock bottom and got better since then. I am lucky to have an understanding husband but he has also been changed by all this.

The one blessing is my beautiful daughter. She amazes me every day. Love her! I thank you all for writing about your experiences on here as it has stopped me feeling alone and given me a bit of courage for tomorrow.