Rectocele & Repairs continued....

[CAZ1958]

Rectocele & Repairs...continuation

Hiya Ladies...
Don't know if this will work, above is the Subject Title
Don't want to lose my friends.
Will come back with a link if poss !!!
Fingers crossed
ZZZ

why go You have had previous TVT and repair so have an input xx and lots of ladies on here ahave a combination of all posterior anterior hysterectomy and enteroceles all part of the pelvic region thats my justification :) anyways you can keep up with old friends and make new ones xx
Hope all keeps well untils things are moving along for you x

Sure, what about if they were to remove the difficult stitches and put in some quick dissolving ones to keep you together for another week or two? I would consider that to be an ideal solution, the old ones are removed but you don't have that awful feeling of possibly falling apart. Xx

It never rains, but it pours!
I am in constant pain, and most of the time I can't even drive, stand, or sit comfortably, and am knackered from lack of sleep. I rely on manual evacuation (lengthy, painful, unpredictably-timed and embarrassing process), rely on 60 Anusol suppositories a month, just to ease it a little (can't take painkillers, as they cause constipation - more pain etc.), and the Benefit Service has decided that "although they don't think I am capable of working, at present, I should attend interviews/workshops to help me to return to work! If I was well enough for these, I would be able/glad to apply for jobs, and probably wouldn't need their help, as I used to place long-term-unemployed people for a living! Do they think the pain/other problems are going to subside at every specific time they want me to attend, and if they have the power to make this happen, why the b**y hell has nobody told me??? If the NHS was as quick to diagnose (as the Benefit Service is at trying to stop us claiming incapacity benefit), perhaps so many of us wouldn't be going bankrupt/depressed/sexless/unemployable/heading for divorce/unable to have a social or work life. How can we give a name to the cause of the problem (which we need to fully explain the situation to them), if the NHS won't use the technology (available for some years now!) to diagnose? I am so mad at both! Apparently threatening to starve me will make it all better!!!

Oh Nannasylv - sorry to hear you're feeling so and . What can I say other than "Don't let the b.......ds get you down!"

Take actio; make a list of things you are going to solve tomorrow i.e. talk to every pharmacist in town about laxatives (!), get a prescription for painkillers/anti-inflamatories or something, eat nothing but cabbage and nuts all day, drink 10 glasses of water (one every hour), keep a daily chart of BM's or urination .... anything to keep you busy and keep your mind off it.

I am lucky that with painkillers I have about 3 hours pain free out of every four so I can work which is a massive moral boost as I can forget about my problems and worry about someone elses (in my case SEN kids and their multitude of impairments) which is fantastic; but when I get home, I just have to go and lie down as that is when everything starts throbbing. So, really all i'm trying to suggest is that you must keep busy or you will surely go insane whilst waiting to get things sorted .... xxxxxxxx

Lots of hugs and keep ing x

Paracetamol doesn't cause constipation and is relatively harmless so I've been told (as long as you don't have existing heart/BP problems) - works for me at the moment really well. My consultant said to take it regularly every 4 hours to get the benefits of it properly x
Have you tried Lactalose - it is harmless and works a treat at softening stools but takes about 2 days to kick in. I take that every day but am in trouble if I forget. x

Nannasyl, I wonder if a Tens machine might work? Perhaps worth a chat with someone in your local chemist. Also, this is going to sound a bit mad, but last year I went to a wedding when I was in dire pain from the back end after the surgery and discovered that pear cider was amazing for relaxing me and reducing the pain. I'm not suggesting you become an alcoholic but it's worth a try just to be able to relax and think a bit without constant pain. No wonder you feel so down, pain is exhausting and you sound really down. My surgeon put me on Gabapentin this time around when I was waiting for the TVt removal, pretty powerful stuff. There are so many different types of painkillers that there must be something that will make you more comfortable whilst waiting for an answer. Where the laxatives and manual evacuation are concerned it sounds like your rear end is very sore and irritated. what would happen if you didn't assist for a day or so, would that give everything a chance to settle a bit? I hope you get some relief in the next couple of days or so just to give you a break. X x

Nannysylv so sorry to see that you still have so much going on & are in so much pain the likes of anusol & other OTC preparations wont help relieve rectal pain but I was advised by a pharmacist friend of mine to ask my GP for a script for Proctosedyl suppositories & cream which I did & found that they give immense relieve. The supps are stored in the fridge therefore immediately cooling but they contain local anaesthetic and anti inflammatory . Re pain I stopped cocodamol 2 weeks post surgery because of the constipation side of things but continued diclofenac replacing cocoadamol with paracetamol and take fruit & drink lots of water now BMs are fine.I remember right you are awaiting diagnosis ? or is it surgery for rectocele ? (sorry there is so much on here and I havent been on for a bit ) sounds as though you really need surgery :( I am now almost 7 weeks post op and cant believe how well things are going. Did Sarah Boseley not get back to you ? xxxx

Surewoman, Jackie62, Maisied1959, and Footle, thanks for your advice, which I've partly followed, and partly already been doing(I already take Paracetamol). I was told to use daily laxatives, for quite some time, and then a nurse told me that they increase the problems (if you have slow peristalsis - is this the right word?) so had to only use them only in extreme circumstances. I increased the roughage, and fruit and veg, in my diet, to help. I have found that cider/fruit juice, last thing at night helps with the fresh waste coming through, but nothing changes the hard stuff (which appears to be coming down a separate, very narrow channel alongside my bowel) into the rectocele. I still think this is a fistula, the opening of which I can feel about 4" up (too narrow for a finger), so would be about level with where my bowel turns into the rectum, and the pain/pressure goes from there up to waist height, and across into both buttocks, hips, and down my left thigh. When the rectocele is full of these gravelly bits, what is inside my bowel can't move forward (sorry if this is tmi, but I know lots of you know more than I do, and might be able to advise). I no longer get the sharp pains in my rectum (since manually evacuating) but constant pain just where this small opening emerges. The fresh waste is soft, and moves easily, once this pressure is removed. I get a lot of soreness, and tickling, inside the flesh of my left lower back/buttocks/thighs, where there are lots of lumps which appear to be reducing, since the gravel has been coming out - any explanations/advice would be much appreciated. I sometimes pass clumps of mucous, dark mucousy blood, and small sharp bits of something resembling beige bone/stone fragments. Sorry to be so graphic, but (like many others on here) I'm desperate for answers!

If this is a fistula, will the scan, on Wednesday, show it?, do they need to use some sort of contrast material for it to show?
If I can't get an accurate diagnosis, I can't get fixed, I can't give the DSS enough information as to why I am unfit for work/unnecessary training (so will lose my Incapacity /ESA), I can't afford to pay my bit towards basic living costs (my husband is on a low wage), and the pain/stress gets worse.

I took detailed information to my DSS assessment, but have no diagnosis to back it up.

I need answers, and relevant treatment, before this bankrupts my life.
I feel short-changed, as I paid into the system for 33 years, so that the system NHS/DSS would be there to help me if the s**t ever hit the fan, which it has, BIG-TIME!

Sorry this is such a long post, but I really need your input.

Oh, forgot to mention, I tried Diclofenac, and Ibuprofen, but they caused stomach problems despite being taken with food - always). My Doctor just said some people can't take it (but at least he tried). My son has the same problems with it.

Maisied1959, This is her reply, after I re-sent the original email ;

Thanks for your email and sorry about the slow reply.
I did look on Mumsnet and I can see that these are medical problems that women are greatly upset about. I don't think it would make the home news pages where I usually write, but it's the sort of issue that the health pages might take up as a feature - Sarah Phillips is in charge of those.

With best wishes,

Sarah

Sarah Boseley
Health Editor
The Guardian
Kings Place
90 York Way
London N19GU

+44 2033533884

twitter: @sarahboseley

I then sent this to Sarah Phillips:

Dear Ms Phillips,
Please would you consider the following, and let me know if you are willing/able to look into this, for all of us women affected?
We are pretty desperate for changes in medical procedures, which would speed up identification, and correction, of something which is blighting our lives.
Thanks you.

I've had no reply. Perhaps someone else can try, as well?

Nannasylv, i am wondering if you have ever had a barium meal in the past? If you have a fistula, and it certainly sounds as if you have, then something like barium could pass into it, stay there and calcify? It would be worth sending some off for analysis at least. If it were me I would try putting some in vinegar and see if it dissolves and produces bubbles of gas in which case it could be something calcium based. I am amazed someone is not more interested as i have said before.
I really hope for you that the scan will show it. They may need to take images from different angles so it may be worth suggesting that to the operator. You don't want to miss out on the opportunity to have it there in glorious technicolor for the consultant to see. If he is not interested it may be worth asking who would be and asking to be referred to them. Once you have the right person things should move quicker towards a solution.
Keep calm and focussed. Doctors don't seem to deal very well with emotional people and you need to keep a clear head in order to make sure you have the right information and the right person to look after you, but make sure you have a plan of action from the doctor re tests and realistic timings before you leave the room. If it takes longer than he has got then tough tits...you are worth it.
Xxx

Hi all, I've been reading all the threads over the last few days and just decided to join! I'm 46 and a single mum with two kids (17 and 11). I went to see my consultant this week expecting to be told to clear off and keep doing my PFE's but was actually told I need anterior repair, posterior repair and have opted to have a vaginal hysterectomy due to uterine prolapse. I don't have continence problems but can totally identify with someone talking about BM's 'going round a corner' in a previous thread. My main probs are constipation and not being able to completely empty my bladder.... My waiting time to op is about 18 weeks (!) I have a question though - I had to do some lifting at work this week and since then I have bits of my posterior wall protruding. Should I try to see my consultant again???? TBH it's scared me in that I thought things were as bad as they were going to get - obviously not and as I have to wait so long I'm worried they'll get even worse. Sorry to ramble!!

Hi fengirl1 and welcome!!!

I hope my experiences will help ....

I was told I needed posterior and anterior repair in July and the op was scheduled for November. At the end of August I had to move house, and put a lot of stuff into storage with the help of my sons (!?!) thinking that as I was already wrecked down below, doing more heavy lifting wouldn't make much difference - well it did! I ended up with a very large enterocele (with a hole the size of a fist) which meant that they didn't even look at the anterior repair during the op. I am still suffering now, so my advice would be 'don't lift anything heavier than a bag of shopping' as it will only make matters worse. Get others to lift for you forever more (which is the thing I find hardest, as being a single mum too i'm just used to doing everything myself). Every time you lift something heavy, all your bits are likely to move further down south!

The bits of your posterior wall that are protruding are probably the rectocele (rectum) which if you get constipated will be more noticeable, so eat loads of fruit and veg (also, ask at the chemist for something called Lactulose which is harmless and softens your stools, and you can take it every morning but will need to drink a lot of water during the day).

Hope this helps - Good luck and keep in touch xxxx

Jackie62, thanks for your input. No, I haven't been able to persuade them to do any sort of contrast scan/x-ray, they just keep saying it can't be that, without looking properly. If I can only feel this with my finger pushed right up to this point, and when the hard stuff has moved into position to exit, how can they possible feel it with just the usual digital examination?

Our MRI unit won't even listen, they just say they only follow the instruction for the type of scan ordered by the specialist (and then reduced an order for lower back + hips, to lower back only!)

Thanks Surewoman. Am already on Lactulose (was given Laxido/Movicol which I had to stop taking as it made my gut v sore) so am not particularly constipated - the bits have been there constantly since the lifting although thankfully the heavy feeling and aches and pain have pretty much gone.

It really scared me as I've laughed all along that I might end up 'slinging it over my shoulder' or carrying it in a wheelbarrow and while that's extreme I'm worried it might now be close to the truth.

I've been single for three years now, feeling rubbish about myself because of how my ex-husband treated me and just as I was beginning to think about launching myself into the dating market realised I have a woohoo the size of a battleship with lumps and bumps in it in all directions which there's no way I'd let any man near, so you can imagine how I felt when I realised it was worse and nigh on hanging out.

I'd just like it all sorted asap so I can actually start to get on with my life!

Fengirl - exactly the same reasons as me!!!! I had hoped I could start a new year hitting the dating scene, hence trying to sort all this out last summer... but ..... don't think any man would want to go anywhere near me right now, full of spikes! Still, when the time comes (with luck before I turn 50) - am 46 too - I will be like a virgin again!!!! Here's hoping x to us!

p.s. try a headstand against the wall, everything falls back into place,... amazing... (albeit temporarily)!

Surewoman - have just re-read your post and realised you said headstand not handstand!!! Was wondering how I was going to do it without breaking something in the house or on myself lol! Perhaps we should go out 'on the pull' when we're all fixed up...

Have been thinking for a good name for the posters on this thread who are post-op and think 'The Barbed Wire Babes' would be very appropriate .

To move on to something else, has anyone else on here found they've been really tired? I find I need to lay down for 30 mins when I get home from work for the last 6 months (before I even knew my prolapses had got worse). Wondering if it's just me and if I need to kick myself up the bum and just get moving.

One last thing - is the sensation of BM's 'coming round a corner' common or more specific (just wondering if it's an enterocele)???

Have a lovely Sunday!

fengirl1, I'm constantly shattered, don't know if this is the same for everyone.

Hi fengirl - think it's our age!!!! (the tiredness, that is!).

With regard to BMs - if you have an enterocele like mine, then there is often no way you even get stools in the rectum, although you know you should be having a BM judging by what you have been eating nothing seems to come out the other end!!

The feeling of BM's going round the bend could be the uterus/cervix pressing on your rectum just above the rectocele and basically squashing everything into an 's' bend. Post op it's amazing as all of a sudden you have straight poos!!!! I'd forgotten what those were like.

Which part of the country are you in? I'd be up for a night out !!!!!

Surewoman, to get the mundane out of the way, even though I feel full up to my teeth at times I still can't go because it's not in the right place iyswim. When this happens, I can only wait until it seems my gut is so full it's forced to move forward so I can get relief..... As for the age thing, I've never felt so tired in my life! (And my mother always says her 40's were her prime hmmmf.) Constipation seems to make it worse, but up until recently I've been pretty active - decorated most of my house over the course of the previous 18 months, gardened, done DIY, along with the usual day-to-day stuff.
I live near Peterborough, hence fengirl. Would be great if you're near enough to meet up.(Watch out fellas !)
How are you doing ATM?

Oh and Nannasylv, have been thinking about your troubles and the only way forward to me seems to be to take a whole BM (fragments and all) to be analysed - surely they'd have to take it seriously if you did. Hope you find some solutions soon.

and just wondering Nannasylv if you're diabetic?

Hi Fengirl - sounds like maybe you have got an enterocele; my worst symptom was that it felt like my entire crotch had dropped by about 10cm with the weight of all the bowel hanging between the vagina and rectum. I also went from 52 kg to 60 kg in a few days, so knew all was not well. And I was absolutely exhausted looking back on it - quite a few evenings my kids would find me lying asleep on the bed whilst waiting for them to clean their teeth etc. !!

Also, have you tried glycerine suppositories? - they work miracles

Nannasylv - how are you? you've gone very quiet; not good? Thinking of you x