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.

Laine4kids thank you thank you for your posting. I am crying as i post, pathetic or what, so strange because last night after I was told it was definitely not cancer, I was told I could resume vagifem and sent dh to doctors to collect prescription. Started again today am hoping it will help and your posting filled me with hope.

Its just two weeks since Hysterctomy but i decided today to start a new life, so i am up, have put on proper clothes and am trying to take control of my life again. I am on the way up. I am hopeful.Thank you again. flymttm which stands for fly me to the moon bizarre but i could not think of anything at the time.

Just like to say sorry Cyee spelt your nickname wrong.

Hello there fmttm and Laine4kids - nice to see you here but as no doubt you know, sorry you have to be here at all.

fmttm - I think it's a great name and it's great that you're feeling more up for it today. You've clearly been through such a lot, and over a long period of time. I can only imagine all the feelings you've been dealing with around the fibroid, potential cancer, hysterectomy etc. While I know it probably sounds strange, I completely get how getting an 'all clear' from cancer may not bring complete relief when you are still dealing with horrible symptoms day to day.

I guess all I can say is that I hope you have great people looking after you both medically and at home. Keep posting on here and tell us how you're getting on. Even from your 2 posts I can tell you are a lady of steel - though I appreciate you maybe don't feel it right now. Take care of yourself and thanks for your good wishes

C

Hi everyone,

I haven't read the whole thread (though have lurked on & off for a few months now). I wanted to ask whether anyone has been diagnosed as having a 'gap' in their perineum. Recently, 6 years after the birth of my youngest DC, I took myself to the GP and he diagnosed this. He's referred me to a hospital based consultant for further investigation & reparative surgery, but I wonder if anyone else has had this. Is surgery effective?

At the moment our sex life is nonexistant because I can't really feel anything down there, & though DH is too reticent to say so, I think he doesn't find it as satisfying either. It feels a bit like the blackwall tunnel! Can this get better? I couldn't bear to think that our sex life is doomed forever.

Hi Missimac and everyone. Missimac I am not really able to comment upon your gap in your perineum but I should think someone who watches this thread will be able to do so. Dont lose heart though because if you read back through the posts, you will read that many woman have had successful vaginal repairs.

I am now 3 weeks post hysterectomy and taking all pain meds for nerve pain following TVT and vaginal surgery last september. I must say today i feel much better have been for a walk around garden and went a bit further than yesterday. Belly still swollen from operation and dreadful wind. The nerve pain is still there but sort of humming in the background. I am a bit dippy because last night took three of wrong tablets (i am taking 5 different ones but had best nights sleep in ages.

Have not had sex since August,last night was watching film which had a really lovely sex scene and in my mind i was really angst ridden that i will never have that again. I like sex and i am fear i will never feel sexy again. but i am hopeful that when i have fully recovered and the spring changes to summer I will feel up to it. The trouble is my vaginal area feels everything as pain. Kinda freaky heh. Its because of the nerve pain. But the meds are working and once the pain messages are switched off in my brain then the area will become desensitised and behave more normally. At the moment even when i sit I can feel the lump where i was repaired and it feels huge. But in time the consultant says i will become pelvically neutralAt the moment is as if I am on constant vaginal alert. I just have to be patient. Luckily dh is wonderful. I think it will be worth the wait it will be like having sex again as a virgin heh heh. Hope i am not giving you TMI

Meanwhile i get my final test results Monday. Definitely not cancer but have no idea now what they are testing for. Hope everyone else is ok where are you all?

Hi. I haven't had the heart to add any messages for a while now. Hello FMTTM, I'm sorry to hear all your problems. Is it your pudendal nerve that has been damaged? It seems to effect people differently and I can understand about nerve pain changing your life completely. It sounds like your condition is been taken seriously by medical professionals. Have you looked up Pudendal Nerve help sites at all? I know of one woman who has pain from similar surgery going wrong so you are not alone. My damage is from a forceps delivery 2 years ago and I cried non stop for months and months.
Hi Doombar, I used the electrical muscle stimulator. It didn't help me but hopefully it might work for you. It is very difficult to use it as it is so invasive and alien but if it works it will be worth it. It was most upsetting for me because I couldn't feel it at all. Give it a good shot.

Hi all,
Just a very quick and selfish post to let you know that gorgeous DD2 arrived safe and well by CS on Thursday morning. She weighed in at 8lb13oz or 3990g in new money. So I'm quite glad she didn't come the standard route!
The CS was of course not ideal, but it was fine, not traumatic and I'm home 48 hours later and MUCH more well (less sore etc.) than I was post repair op.
Take care all and I'll be on here properly soon, Cyee

Cyee!!!!
CONGRATULATIONS sweetheart!! I'm so glad your section went well. I've been watching for your announcement... so glad you're well and happy, can't wait to hear more. And what a good size for DD! I hope everything is going swimmingly for you.
xxx!!

Dear Cyee, we dont know one another very well but sincere congratulations on the birth of your daughter, how wonderful. I am just getting over hysterectomy three weeks ago so accept all help you can get with your children so that you can give yourself chance to heal. So pleased you had a C section.

Hi all, ruinedandupset thank you for your advice re nerve damage/pain, at this stage the doctors dont think its pudendal damage its chronic repetative nerve pain. As well as a GA for my hysterectomy i had an epidural but it would not work but since my op have been taking gabapentin as well as amytriptline three times a day plus a host of other painkillers and anti inflammatories and i am happy to report that have three days with hardly any pain just numbness. Still a long way from sex but sympathise with kentmumtj and DMCT cos find it hard to accept my vagina has changed but this week managed to touch myself a little hope that`s not TMI and did not go into a panic, I live in hope. Get final test results tomorrow but know already its definitely not Cancer.

Thanks Jacksmama (hello!) and flymttm for your good wishes. All's well here and I am utterly amazed at how well I feel following the csection. At this point, by far the worst aspect is not being able to drive/lift.

Flymttm, it's not TMI at all! And it's great that while not a 'good' solution, you're not in pain at the moment. What did your test results show on Monday?

Cyee thanks for asking about my test results. Well good news i dont have cancer as you know but i do have a very rare disease/condition called intravascualr leiyomatosis. Some of my fibroid has spread into my veins. What this means to me as yet i dont know am now waiting for consult with another specialist but i dont think its life threatening. On a positive note the gabapentin seems to be working for my nerve pain and i have managed two walks this week but now i am concerned about long term.

Very embarrassed to ask but girls has anyone had anterior and posterior repair and tvt and had positive result in terms of penetrative sex. When i feel down there there is a point just a little way in which feels very small. I have even bought a you know what from Ann Summers and tried it. It hurt was very sore until it passed that point then it was ok. can anyone offer me encouragement. I am not up to it now but i hate to think this part of my life is over

re c section and vaginal delivery , now i have had my hysterectomy definitely going to recommend planned c section to my dd xx

Hey flymttm,
Hope they can so something for your very complicated sounding condition and very very glad it's not life threatening.
In answer to your question, I haven't had the same repairs as you but I know that penetrative sex does take some time to ramp up to... I also tried the you-know-whats before actually doing the deed. It was tender and felt weird, but with some lubricant and high quality.. ahem.. warm up...(!) it was ok. Still is quite tender if we don't take our time. Hope someone comes along with more specific experience, and hopefully positive as well.
Take care

Hi,
I am new to this thread, just wanted to introduce myself.

I was only recently diagnosed with complications following the birth of my 9lb 1oz son in July 2008. I had a vaginal delivery and 3rd degree tear.

I assumed things would be different after having a baby and, as a result, felt too embarrassed to mention some of the problems I had.

I am currently 31 weeks pg and the pg has been complicated due to bleeds and cholestasis. As a result I had extra and internal scans to check my cervix, during which they identified a prolapse to my bladder.

This explains some of my issues and also led to a discussion about my bowel habits where I was able to talk about my main problem which has been a complete lack of sensation - embarrassingly I am just not able to feel the urge to pooh anymore and they suspect nerve damage.

So, that is me. Am having a CS in April and am terrified, equally terrified by the prospect of a natural labour too.

Hello Momdeguerre - welcome to our merry band, though sorry to hear about the post birth issues you've had. I too was of the view that things were 'just different' after having a baby. Hence it was a while before I spoke to my doc, as I expected them to just tell me to pull myself together. I guess because you are late in pregnancy now (congrats!) they aren't talking about repair? Or is it something they broached with you already?

I know we're all different, but 7 weeks ago I was in your shoes, terrified of a c-section but more terrified about going into spontaneous labour and my repair coming undone (I had mild contractions brought on by a UTI and was in hosp overnight at 35 weeks). I am now 11 days on the other side of the c-section and while I know we're all different and respond to surgery in different ways, I can honestly say that I am astounded by how well I feel and have recovered. I've been for a 45 minute walk in a park (yesterday) and barely feel my scar or anything when I walk around. I'm taking paracetamol only, but not even religiously. The major issue for me is not being able to drive for a few weeks.

Clearly I would like to have avoided surgery of any kind, but can personally say that it's not remotely as horrific as I was expecting. I may be quite fortunate, but I'm an average lady (not doing aerobics til 39 weeks or anything like that!) and didn't do anything 'in preparation' for the op.

Hope this gives you some comfort at least... keep posting and tell us how you're getting on

Cyee, great to hear some positive experience. I hope mine will go smoothly too, I hate the thought of having any surgical repair but I can't imagine the alternative either. Trying to focus on the positive - at least I won't go overdue!

No talk of repair yet. No idea what they might do for me either, they have already said the nerve damage is likely to be beyond any treatment so I think I am into the realms of management.

In a way I am just actually relieved they found out something was wrong, I thought I was perhaps imagining the problem.

At the mo I am just going to focus on the arrival of our next baby and how I am going to manage my toddler and a newborn!

Glad I found the thread, not really even felt I can discuss this with my DH.

Hi again,
I thought your name looked familiar and I think I read the other thread about to c-section or not? I suppose I was kind of lucky that I didn't have a choice! Well, I did in that I could have postponed my repair op until I had finished having children. I wasn't prepared to live with my symptoms though. I also have a friend who's wrestling with whether or not to have an elective section, following an emegergency one under GA last time. It's a bloody minefield and everyone has a view on it. By the sounds of it you have opted for the least worst option, which is the best one for you. Though it's not remotely helpful when the docs can't give you the real risk factors with any kind of certainty. 'You may or may not suffer additional damage'... wow helpful!

I can empathise with your relief at knowing there was a problem. I felt the same at the time... well a weird feeling of being relived and terrified/disgusted/concerned all at the same time. While I know your focus is on having your baby (yes to not being overdue and being able to plan care for other child/ren!!) it is worth saying that they can do amazing things repair-wise these days. Obviously you'll weigh up the intervention vs benefit to you, but they really can do a lot to help manage/minimise the symptoms.

Anyway, I'm waffling when I should be trying to knit a baby cardi for my SIL who has just gone for a sweep.

Take care and remember that the only person who has to be content with the decisions that are made is you. Everyone has a view, but it's your body, your future, your decision

Thanks again Cyee.

Both sad and glad that other people are in a similar position. Repair seems like a long way off, I am hoping that if my CS goes well then I can consider the next step. Am also not sure if this will be our last baby.

Decisions, decisions!

CS on the 6th April. Can't wait to get it over and hope my experience will be as positive as yours.

Momdeguerre,
Hi, i have not had a c section but i recovering from a hysterctomy and i echo what cyee has said. I am five weeks post op and as far as my H is concerned my scar does not hurt me, it looks as if it wont show in time.

Look after your self keep posting to tell us how you are getting on . BW coco

Cyee congratulations on the birth of your dd! How are you? I hope you're recovering well.

Sorry it's been a while since I've been on. I sometimes like to MN and pretend I'm all fine so I don't stop by here for a while.

I am 1 day post op for my sacral nerve stimulator trial. The op wasn't too bad, I was fairly terrified but pain had been minimal. The wires are linked to an external battery pack so I can't move much or I risk dislodging the wires from my nerves.

It's too soon to say if it's worked but fingers crossed.

The hospital called today to say the (lovely) gynae that I saw has suggested I have a debrief so I am going to see a obstetric consultant next week to talk about dd'd birth.

So although it looks like progress is being made I feel miserable today. The other women having the trial stimulator fitted were really bubbly and excited at the prospect of it helping them. I cried post-op because I have this thing implanted, possibly forever and I feel about 100yrs old. I know I'm probably being a bit OTT -especially if it helps. I should be hopeful & happy, right?

I can't pick dd up for two weeks which is killing me & upsetting her. I can't shower or bath until the trial is over. My back is killing me & I'd love to soak in the bath.

Anyway, I'll go because this is a really dreary post. I'll let you know how the trial/debrief go.

Hey DB,

The SNS has been fabulous so far. I feel like me again. I can hold everything in and just after a few days I have stopped thinking about it now. I used to panic when I felt like I was going to pass wind because I can't hold them in or be discrete (horrible at work or in social situations). This has changed all of that, honestly, I am so amazed.

I am also more, er, regular now which is better.

The trial is a bit inconvenient because I have to be careful with the wires coming out of my back and I can't pick dd up. Pain has been minimal, I've taken paracetamol once but that was after a long car journey the day after the op so probably my fault.

How are you? Do you feel ok about trying SNS? If you get the opportunity to go for the trial I would recommend it. I was quite frightened but its been worth it to feel "normal" again.

of course DB, I remember your circumstances now. There was a woman having a trial at the same time as me. She had nerve damage from a spinal injury which left her doubly incontinent and no feeling in one thigh. I overheard her talking to a nurse when they turned her stimulator on. She was marvelling at being able to feel in her leg again after years of numbness. I thought that was lovely. So you never know, perhaps if it might get your orgasms working? Apparently a potential side effect is increased arousal (haven't noticed myself yet unfortunately).

I've been lying awake at night having the debrief in my head. I am so angry & upset that they didn't repair me when she was born. I hadn't thought of tissues but yes, you're right I'll need those.

I have lots of questions to ask, I just hope they don't fob me off. It sounds like you got some honest answers from your hospital. I imagine that helped?

Dh is really angry and I am worried that he'll shout and swear. I know he has a right to be upset so I haven't mentioned anything to him. Did you go with someone DB?

Can you ask your doctor for trial of SNS anyway? It is obviously more expensive than the conservative measures they try first but in terms of feeling like the person I was before it's a million times better. I just hope the hospital agree and let me have the permanent implant now.

Reading these posts makes me feel so sad, and so frustrated for you. I was very fortunate with my three deliveries, and I find the accounts of the mismanagement you've all had is heartbreaking.
I've only quite recently found out about obstetric fistula, and I'm walking 35 miles barefoot to raise money for the fistula hospital in Addis Ababa, Ethiopia www.justgiving.com/walkingbarefoot
please donate if you can- they don't have an NHS to help
It seems maybe a support network for women with obstetric injuries is needed for UK mums as well. Anyway, I wish you all the best.

Hi everyone. flymttm here. Feel so very very depresses. Still have significant neruropathic pain, still taking truck load of meds which have made me so constipated I had to TMI manually excavate myself. Now have piles. Dont think i will ever get better, losing hope of a normal life. Tried with a gadget from Ann Summers bits seem to work (huge relief) but its brought on all this pain. Hysterectomy has sent me into menopause suddenly and flushes are terrible. Cant take hrt cos of benign growths and intravascual blah blah blad. Really losing my grip. crying all the time, feel so exhausted , have no life. Been trying to avoid anti deps. Driving OH away. I am so sad. Has anyone out there got nerve pain in their pelvic floor. I feel like a freak