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

Hi maisied
I am doing fine now , was so bad at your stage, wallowed in so much self pity I did not join in with posting due too the negativity I felt, although read everything everyday lol like a mad stalker. Like you I think I under estimated the way I would feel and was very hard on myself as some people seemed to be coping better, I thought I was being a wimp. Glad to hear you have got in contact with your consultant. I got I would have seen him in the foyer of the hospital and paid him for the pleasure (had op done on NHS) :) xx but thankfully he slotted me into his colposcopy clinic and was very sympathetic and apologetic that the merina had given me so much trouble xx

I do have one question if anyone can help? I have just had my first normal period (well the one I had 5 days post op doesnt count, and the one I had while on merina yeuck!!) and I have a terrible dragging feeling down below, not the usual pain more in the area of the cystocele repair and Tvt area, feel as if want to hold it up. I have had heavy bleeding and clots previously TMI so not worried about that and hopefully if I get ablation this will help. But the sensation I am experiencing is wierd , just wonder if anybody else had this ?? Again like most sssooo long since I felt normal dont know what normal is now lol Oh and when did others go back to using tampons?

Thanks again still loving the new me though xx Hope all stay well x

Hi Oldrmum - I have just been given the name of a good urogynae in london by a friend of mine, I'll copy the txt she sent me yesterday...here goes:

...urogynae specialist is called John Bidmead and he sees patients at The Lister Hospital next to Chelsea Bridge or at the London Bridge hospital which is very easy to get to (if you live in Kent like us!!). From memory he has afternoon and evening clinics but sees NHS patients in Kings College Hospital. His secretary is called Ann and the number is 0208 778 3646. If you google him you will get his profile and info on his special treatments. If you need the urodynamic tests he does them at the Lister. Not the most pleasant experience but all done in a very dignified fashion. Also recommended another friend who found him equally professional.....

Hope this is of use - I have no idea about him personally and only got this txt message yesterday so haven't had a chance to check him out .

Good luck with everything
x

Hello Ladies...lets hope that this morning finds you all as comfortable as could be expected & the Huge PMA to start this journey is still with you.
Dear Nan...my heart goes out to you...please just try to stay as positive as poss.
OMG Coco...words fail me, you have certainly been going through it
hope that all is still going well. Thankyou so much for wondering about me.
Went to the docs about the severe pain...had to have an internal & then a swab, just don't ask !!! The outcome is 2 infections !!! I have been so good !!! Course of strong antibiotics which consquently have given me horrendous diarreaha !!! It was back to bed for me...felt so ill.
Finally this morning, I am feeling brighter again, my downstairs regions are just very uncomfortable again instead of painful & my Num 2's are easing but only just !!! Only been 3 times this morning so far, deep joy.
I still think that mine is a positive story to all you ladies out there, this is just a minor glitch compared to other stories.
The relief from having it all put right is worth it in the end, just to have some quality of life & be pain free....plus who knows, perhaps a new woman in the end finally .
Keep posting ladies...there will always be somebody here to listen & try to help.
XXXXXXXXXXXXXXXXXXXX

1 infection not good enough for you caz? hopefully it will be cleared soon.

One question, the dr at the hospital on thursday said she thought my bowel had moved up, not down . Does this sound familiar to anyone?

I used to have IBS but no problems since my DDs were born, but it was much lower down (small intestine maybe?) I get a horrendous pain now up and to the right of my bellybutton which I presume is my large intestine. if I need a bowel movement I have to go straight away or I can't hold it in.

has anyone had similar? Hope you all have a good day and REST! x

Hi Coco - I get a similar pain to the right of my belly button but lower down, near where I guess my ovaries are (but they are apparently ok). Feels like intestine to me and I did ask dr if I could now get a prolapse the other side of my vagina as the posterior side is now all stitched up. He said he didn't think so.

On another note - went in this morning to hospital to have a general to find out why I'd been in so much pain. Just did all the paperwork and was about to put stockings on when the power went out! Consultant then came round and said hello, asked if the pain was any better, which it has been (still no results back from swab and urine sample) since about day 3 of antibiotics (infection for sure) and he said behind his folder so the others couldn't hear "just go home coz this is going to put everyone back and you probably won't get seen 'til late this afternoon - ring me Monday and I'll see you Thursday if you think you can hang on 'til then" - Well, nice surprise for my 15 yr DS who felt we'd all abandoned him on his Birthday!! . Skipped out of ward leaving behind 2 others, one for TVT and other for laparoscopic removal of ovary with cyst 10cm. Suggested to TVT woman to look on MN as she didn't know much re recovery process after.

Note to all, warning from cyst lady, have a scan every year because she had absolutely no symptoms for her cyst which is so big that it might well be pre-cancerous and is being sent off for biopsy. She has had a hell of a Christmas worrying about it and ovarian cancer is the silent and v. deadly one she reckons.
xxxxxxxxx Bloody NHS organisation!! What a waste of a morning and pre-op nerves night before!! Plus had to farm off kids as am single mum.

Thanks surewoman, what a morning you've had!

It's all over my local news (N.Ireland) about the hospitals sending people home, the long waiting just to be seen and then waiting months to get an op . I never thought I'd be desperate to go back to work, but it would be better than this

Hello ladies!

Another new member here, and I'm so glad to have come across this thread...but sorry so many other people seem to be affected by similar problems.

A bit about me, I'm 33 and had my first baby, beautiful baby boy :-), in June last year. I started to bleed during the delivery so he was dragged out by forceps with a large episiotomy. Unfortnately the bleeding wouldn't stop after I was put back together and lost 3L blood and ended up back in theatre with various other parts of my birth canal being stitched up/ repaired :-(. A few weeks after the birth, when I finally got the courage to have a look down below, I realised something wasn't right and at my 6 wk check my GP confirmed I had a rectocele. I can feel the bulge, esp after going for a walk/ if I need to open my bowels etc and get that horrible dragging sensation if I've been on my feet too long. Also have very little warning before BM. The main issue for me though is I can't bear to be intimate with my husband as I'm so self consicous about it. He has been lovely and reassuring but I just don't feel the same and it I feel it is really affecting my overall self esteem. Don't know if anyone else has felt the same or if I'm just being daft?

Anyway, I've done the 3m of pelvic floor exercises but the physio has confirmed it hasn't made any difference to the rectocele itself, although the bowel urgency is definitely better now. I saw the consultant yesterday and he has said if I want a posterior repair he is happy to do so and I have a provisional date for the 9th Feb. Not sure yet if we will be able to go with that yet as we need to cobble together 6 weeks of help so I don't lift little one.

But my question is.. we still want to have another child. Ideally when my little one is twoish, although I know life never works to plan like that. The consultant warned me that I could get a recurrence of the rectocele during pregnancy, and that obviously next birth would be with CS, though this has been recommended in any case as the cause of my bleed was partly placental abruption. But he was happy to go ahead as he said it is possible that it would be fine in a subsequent pregnancy.

I'm really torn as I am so desperate for this to be fixed given the impact it is having on me and my relationship with my husband, but at the same time don't want to make a mistake by not waiting until after next baby either. Mind you it would take immaculate conception the rate we were going ;-)

Do any of you ladies have experience of similar? Anyone had a pregnancy after posterior repair? How long did you wait?

Sorry for mammoth post! Thank you in advance.

LL x

Hi Coco - just wondered how long it took for you to get the results of your swab and urine sample? My swab was on Tuesday (v.v. sore) which is why the consultant wanted to explore under Gen. but put me on anti b's anyway. He said this morning that he still didn't have the results back. I feel I must have had an infection as things have either shifted or got a little better as at least I can sit down now without hyperventilating!
Also, how long post op are you? I'm now 10 weeks but all the stitches are still there. How are yours?

Lubilui - Hi there. Sorry I can't be of much help although I have had a posterior repair but I have finished having babies (I'm 45) so don't know the answer to your questions. However, there is another thread on MN "continued support for SPHINCTER INJURIES ..." and there seem to be a lot of mums going through pregnancy with similar problems to yours. Hope this helps, XXX

Welcome maisied, as far as I can gather mesh comes in different shapes and Tvt is mesh in a tape form. Have you had a TVT or a TOT? Hope you get to the bottom of the pain x

Welcome oldrmum, I can recommend a good surgeon in Oxford, good luck x

Sure, thank goodness the power went down before you had your op and not during...! X

Welcome, lubilu, I had my rectocele corrected in September by darning with many little stitches and it has been a success. Personally I would suggest that you go for the surgery, enjoy the benefit of being able to go easily and hope that any further pregnancy or birth does not disrupt the surgery. I am not intending to go for any more babies being 49, but I would go for it in your position. If the worse was to happen it would need to be done again. Make sure they check your perineal body at the same time as it may have been damaged during the birth and you need that to be strong for any future pregnancies x

Nannasylv, considering fistulas exist can your surgeon give you any good reason why there is no chance that you have one?! Somebody must have had one in the history of man/woman for the condition to have a name? He is going to look silly if the tests show you do have one...x

11kitty, if you go on the Internet and search for Miklos and Moore they have a video of laparoscopic TVT removal. X

Caz so glad to hear you are feeling better x hope you don't end up with trush all those antibiotics lol xx

Coco sorry to hear things not moving along for you, You just assume the NHS is the same all over the UK and that waiting times are being achieved . Obviously not!! I work in emergency care so it is very much a fast pace environment .I dont get to see much of the other side and I certainly have had my eyes opened. I was talking to my sis (compliants manager NHS) she says why not phone the consultant direct or his secratery if you know who you have been reffered to ??. Apparently they are used to it ( in scotland anyway). I know you probably have looked at all angles x hope you hear soon x

Surewoman my swab results took 48hrs for the ones done in hospital and well over 5 days for the ones done on GP surgery but this did include a weekend xx Our Gp telephones if the swabs are positive but does not if negative xx hope you feel better soon x
Jackie62 Are you feeling any better, hope things are progerring well for you too and sending lots of love xx

Sorry jackie took so long to complete my post Kids lol didnt realise you were on xx

Lubilui - I was told that if I had the operation I shouldn't have anymore children as it was likely the repairs would be undone by the pressures of the pregnancy. It is not an operation you'd really want to repeat, especially with a young child/new baby. I have finished my family anyway so decided to go ahead. (Should also add that had the repair over 6 months ago, and haven't had sex again yet as still too nervous so can't comment on post-repair sex!).

But can see your problems of becoming pregnant if not feeling comfortable being intimate because of the rectecole.
Sorry not to be more help!

Happy, thank you for asking! I am very up and down, and recovery is much slower than I was expecting. I am normally quite resilient and tend to bounce back, but I haven't bounced yet!
I am spending most of the day, amazingly, in bed as I have a lot of pain if I move around, particularly if i try to pick things up as I am very swollen around the middle and the pubic area. I am starting to wonder if this is normal (week 3) and I think I will phone my surgeon on Monday and just run it by her. There aren't very many of us out there so difficult to compare recoveries, but I am in contact with one amazing TVT removal patient and her story is fairly similar.
Having said that's it is such a relief to have got the tape out as the previous pain was unbearable, so I am thanking my lucky stars!!
I am trying to paint for a short while every day, currently painting a watercolour wreath painting with lots of coloured jewels hanging from it, for a charity Christmas card, 2012, so I will hopefully have something to say for all this time off at the end of it!
I am also nursing a very sore wrist from having a blood test required by the emergency doctor after i had a horrid fainting thing. The nurse caught a nerve and it tracked back and forth like acid in my veins just above my left wrist. It hurt so much I had to kiss it better!! I didn't half feel silly but it seemed to be the only thing to do!
The test revealed my thyroid hormones were all over the place so had to up my dose and have become a bit ' toxic' this evening with a very flushed face and cherry red neck! One thing always leads to another!
Good luck everybody, x

Someone asked for a recommendation for a private urogynae surgeon in London? I can recommend my surgeon Vikram Khullar. On the NHS he heads tertiary level urogyane centre at St Marys. Privately he is at St Marys, Harley Street and Devonshire Street. He is a superb surgeon and an extremely sympathetic man. He has always listened to and respected me and he has taken the time to discuss all the surgical options with me to arrive at the decision that is best for me - he doesn't believe in a one-size-fits-all approach at all. His secretary's number is 07500 334000

CAZ, glad to see you're back, and (hopefully) on the mend.
Jackie62, beats me why they keep saying it's not possible, (especially as I can feel a narrow opening in my rectum TMI?) I've given them a list of likely causes, starting at the age of 8, including car crash, forceps delivery, abuse in 1st marriage, previous vaginal repair, and stupidly strenuous lifting when renovating the houses. Perhaps I'm really Wonderwoman (so unbreakable - haha!). I would love to say "told you so" to each of them!, but I'm also dreading what they will find. However, I desperately want to know now, I think I've earned at least that.
I can't tell you all how grateful I am, for all the help, information, and advice you've given.
By-the-way, is medical help so much easier to get in the South? It seems like it's almost impossible, in the Midlands (no-one seems to know much about this anyway), I've actually read of 3rd world countries who are far more on the ball about this!

Onward, and upward ladies!

Omg so many new post and new ladies :) Welcome ladies
Thank you 14k and happy, not sweating so much about the post op now.
Caz not had post op yet 23 rd...
Jackie love the list of words :)

Quick update, no bleeding discharge almost stopped. All meds stopped except 1 movical every other day, no sign of stitches coming away yet. Get the odd twinge if I do too much ( think its the tvt) but all ok.

Couple of questions, 1 have any of you guys been told its ok to start pelvic floor exercises yet? And 2 are we allowed to go swimming i dont want to run the risk of an infection (it's bloody boling here) i am dying in 90% humidity and 37 degrees. I will be 5 weeks post op tomorrow :)

Hi Bruffyj - I was told no swimming whilst the stitches are still there (now 11 weeks for me ).
I mentioned to my consultant at 4 wks that the pre-op nurse had told me to do pelvic floor exs. from the day after my posterior repair but that it hurt me too much, at which he said he wasn't surprised and mentioned that at my stage - floppy vaginal walls ! pelvic floor exercises would not make any difference as they only worked on muscle, not vaginal tissue. I have started doing them a bit now as I feel any muscular workout is a good thing (can't do any harm can it?). Prior to my op I bought an itouch device from Amazon for pf stimulation which was fab [happy] although I can't use it now with stitches . Hope this helps xxxxxx

Morning all Surewoman I've still pre pre pre op! I had a TVT and ablation 4 years ago, I'm now waiting to be seen for prolapse.

I'm now think that the pain in my upper side could be a glallbladder attack, my friend told me to look it up. It's a sharp pain up and under ribs on right hand side, pain between shoulder blades and nausea. I have all this so will watch what I eat for a while, it can be brought on by bowel problems.

Hope you all have a restful day (I'm still in bed) x

Hi Buffy
Same for me no swimming till stitches gone, these appeared to be away by 7wks for me and as regards pelvic floor was told to really get going with them at my official post op at 8wks. Also said I could go back to excercise and light gym work but Physio had said no to this (gym), till at least 3/4 mths post op ?? so delaying this at present . Will have to look at the michelle kenway site as I think it lets you know which excercises to avoid.
Just wish I could get over the obsession with bowels :) I am reluctant to cut down on movicol as so scared to put strain on bowel , so as it stands taking 2 sachets for 2 days then 1 next. Who would ever have thought I would be a movicol addict . Had to avoid it before as could not evacuate rectum if motion too soft. AAHH the joys.
Nannasylv Hang on in there and continue to be strong xx hope you get your day and TOLD YOU SO is loud and clear lol x And you are right there should be concise and defined national guidline on all of this, I know NICE.org define treatment strategies but it is all the other info that should be streamed, and from experience I know consultants all have there interpretation on guidelines (although I have not done too bad north of the border).
Hope all are as well as can be xxxx

Sorry should have read bruffy x

Hi Jackie62 sounds as if you are having an awful time and I do hope that you feel better soon!
I was to have a prolift mesh anterior repair but ended up having a Prolift Mesh Total repair (anterior & posterior) and a vault suspension of the apex.
I laughed out loud when I read your post where you lost the plot with the consultant.
I did the same just before I went to the theatre told the consultant i didnt want to tell him how to do his job BUT :-) I told him that at my appointment with him he had not read my notes, ignorned my concerns about my bowel, concentrated solely on my cystocele and I had left feeling very deflated.
I also told him that I was concerned that I would have an anterior repair but be back soon after for a further repair etc and basically had a rant.
When we next spoke he was patting my hand telling me I was correct that I had pelvic descent due to hysterectomy but he had corrected everything.
While at first I was relieved that I had the procedures done all at once I have become quite irate the more I read about this because seemingly pelvic descent is a "common occurence following hysterectomy" is a "complication of hysterectomy" etc yet I had to spend two years convincing my GP & two consultants that I had a prolapse.
On reading some of the postings on here I wonder why some of the consultants are in their posts and why they appear to have no time for people ??? X

Footle - thanks a lot for that link for pf exercises; v. useful x

Feeling really fed up - my cystocele/urethrocele is enormous now and the consultant didn't fix it at the time of my posterior repair as he said the enterocele was so large. (I bet it was a time-scale thing as they calculate one hour per patient). I suppose the rectocele was holding it all up, although being able to have decent BMs is one plus point.

On top of the trouble with my stitches I now have added discomfort from the bulge from my bladder pressing on top of the spikes. Ouch. I am getting very p....d off with all of this and just want to get on with my life, do some sport and not have to wake up 3/4 times every night to go to the loo.
Any advice out there to help me deal with this as it looks like nothing can be done in the near future . I just feel like sticking my Henry hoover up there and sucking absolutely everything out once and for all xxxx

Thank you all for this thread, SOOooo much I can relate to written here - I'm another thats finally on the road to diagnosis & surgery after 9 years -long & very frustrating story, but i'm not using my usual computer - struggle with this one, so won't go into detail - but basically finally got the rectocele diagnosis after insising on a refferal for heamoroids - 2nd appointment I took a phot with me & FINALLY someone listened - now waiting on proctogram test to see what else is going on, as he thinks theres more, but so far rectocele, fissures, heamoroids & partical rectal prolpase to sort out & suddenly it ALL makes sense - so many symptoms I can relate to here that I had no idea were connected

its a long thread I've read in bits over the last few days, but to the lady who described walking as having another person hanging around your waist - what a dfantastic desciption - that is it in a nutshell, I can't walk more than a few yard without feeling as i'm constantly running up hill - that got me an ME diagnosis

I'm mostly book marking so I can find you all again, as keep losing you, but I would like to ask though - to those of you that have suffered long term & its affecting your back & legs (or is that normal with this - do any of you also suffer with calf muscle problems?? - mine are now probably 5 sizes bigger than the rest of me, constantly tight & I'm prone to calf tears - this "feels" connected - is it???

thank you

happy2beme, I agree that NICE probably have treatment guidelines, what I'm worried about is the lack of diagnosis guidance. If so many can be fobbed off with just manual examinations, and no technology (MRI/CT scans) in this day and age, I think increased internal damage, more invasive repair, and longer/ unattainable -total-recovery is inevitable! I told the last surgeon I spoke to (who was very helpful afterwards), that I think telepathy/manual examination isn't enough, when you can have the accuracy of today's technology, which can look where fingers just CANNOT possibly feel. He actually said he disagreed with the previous surgeon's diagnosis, and tried to arrange the right (I hope) scan, there and then (I'm waiting for the booking to come through). My H keeps saying the inappropriate appointments have probably cost a lot more than the right, thorough scan would have done, and that the damage inside me would not have had chance to go so deep (however far that is - without the scan I still don't know!). Also, I should have been able to get back to work a long time ago, if someone had listened to my symptoms, then looked thoroughly. Sorry for spouting! (I'll get off my soap-box now).
rockinhippy 9 years is almost as bad as mine -16 years STILL NO FULL DIAGNOSIS!-, "rectocele, fissures, heamoroids & partical rectal prolpase to sort out & suddenly it ALL makes sense - so many symptoms I can relate to here that I had no idea were connected", how is it that those who are supposed to know what the symptoms mean, can't diagnose in all that time? I'm pleased for you, and I obviously need lessons in how to get there! lol
surewoman, I never thought Henries were so versatile! (I shall chuckle each time I use mine now)
maisied1959, I'm beginning to think we are the only ones who read up on it (my last 2 colorectal surgeons don't appear to have), and then we get told we shouldn't try to get answers from the internet but "rely on the professionals". Without all of you, I wouldn't have had a clue what to ask!
All of you post-ops, I hope it's getting better by the day (I'm still a little green with envy!)
Hope everyone has a good/better day tomorrow. XX