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

Sure, this is going to sound a bit odd, but since the birth of my son, now 21, I have been literally hanging on for dear life. I think my pelvic floor control was probably very good as generally I was okay. I did have times where I would leak and realise that I had to concentrate on the exercises as I had let them slip. In the last couple of years it became more difficult to control, I don't know if it had anything to do with the other problems as everything was heading south? Anyway, I had a few incidents of leakage, very inconvenient. One was when a colleague and I were hanging onto the legs of a young man who had tried to leap out of a second floor window head first and was literally falling out. Basically I completely wet myself with the effort, but as it was life and death it didn't seem significant. I had other times when it would happen, normally when I was shocked, such as when I was searching for a man in a house and opened a wardrobe to find him standing there stark naked...I wet myself with the shock, I was bitten by a nasty 16 year old junkie, the same! Again the same happened when I got into the wrong car and looked at the driver to find it was somebody I didn't know. I don't know if i was being delusional, my urogyny nurse thinks so, but I had convinced myself I was all right. When I did the urodynamics tests I wet myself everywhere and she said that I had a real problem and didn't know how I had held down a full time dynamic job with such an issue. I am very good at hiding problems! In retrospect I did have a problem as I had to wear a pad everyday, I just didn't acknowledge it to myself. Anyway it was decided that I had to have the tvt and I went along with it.
However, when it goes wrong it is extremely painful and ruins quality of life. Having it removed was almost the best thing to happen to me EVER, that is how bad it was. I don't want to scare anyone but it can be a real bad problem. I can honestly say I would rather leak and manage that on a daily basis than have the tape. I know it is easy to say when I am not leaking like a sieve but it is true. Please give the exercises a go, if they don't work then you may have to think again. My surgeon made me a little ( well not so little actually!) buttress which supports the urethra. It has it's own little idiosyncrasies but it is effective and I don't leak at the moment. I am doing pelvic floors religiously as well. Maybe that is the way forward for you, I would like to think so. I can give you the name of my lovely surgeon if you need it. Xxx

Still waiting!
Hope you're all ok

XX

Nannasylv, that's rotten. You would think they could get a move on as you're desperate to know.

Jackie, a very eventful life then. I don't envy you finding naked men in wardrobes (unless they're someone I want to be there!)

Jackie - thanks for your reply. When did you realise the TVT had gone wrong? How soon after? And what were your symptoms???

I feel I really trust this second uro/gynae as this is his speciality and he is genuinly interested in fixing us poor souls!! He managed to 'fit me in' so that I didn't have to be seen by my original consultant for the urodynamics test and was very very honest about outcomes, worsening problems with the onset of menopause (another of his 'areas') and the pros and cons of tvt. He did say it had to be my decision so I asked him that if I said ok to it what would be his opinion then and he said 'a good move'. Actually today I have been leaking all the time - standing up, coughing, sneezing, going to the loo, etc. etc. as I am about to have my period, which is when symptoms do get worse so he said, and are similar to how things will be post menopause. I have spent all morning researching this so I reckon I now have a double degree in Urogynaecology and vaginal repair surgery!!! lol!

Oh, what to do?? I also plugged myself into my pelvic floor machine for a long time last night but that doesn't seem to have made any difference today! Wouldn't it be nice to know 100% the outcomes of all this surgery?

Having had your tvt removed how are things now? xxx

Bye the way - my second lot of stitches have completely gone and I seem to be totally pain free now (at last!!!) so I think the uro/gynae was accurate in his prognosis which makes me trust him even more. I think I am trying to convince myself that this is what I need to get done next! x

Sure, it was obvious that it had gone wrong from the start as I couldn't wee at all. I had further surgery three days later to loosen but that didn't help either. Eventually I began to wee on my own. About three weeks later I was reducing my pain relief and began to realise that all was not well. There were many types of pain, very bad. The worse was to come though as the tape moved and cut, at the same time as it was contracting, so it was moving sideways and along it's length. It is sharp with crunchy edges and ends so that it embeds in the tissue,so when it moves it is very painful.
I really don't know what to say as I honestly can't recommend the tape but you do seem to be in trouble. As the tape lifts the urethra to prevent leaks, a buttress may be a similar but more body compatible solution. I think your consultant needs to speak to mine. At least if that was done and you still had problems you would know that the TVT was the only option.
Lots of love to you xx

Sure, sorry I forgot to say that I am doing well now. I am 9 weeks post op. I have very little pain, I am still swollen in the right pubic area which is uncomfortable and lumpy. I seem to be fully continent, even fell down the stairs and didn't wee myself! The buttress does feel warm and a bit weird, but, hey, that's so much better than excruciating pain. I do have occasional weird things like being suddenly feeling weak and hot and being sick in the museum on Thursday! Generally linked with doing too much. Random!
Xx

Hi Jackie - how do they do a buttress? What does it consist of? Also, did you have a cystocele fixed or not - a part of me feels that if they did the cystocele first then maybe I'd be ok (and at least not have anymore bulges) but they say the cystocele isn't too big and seem reluctant to touch it - why would that be? The bulge looks big to me and makes me feel like I possess the Grand Canyon down there! x

Hi all - another query... Does anyone know the different success/failure rates between TVT, TVT-o, bladder neck suspension and the new mini arc sling?? Just doing my research before tomorrow!!! And has anyone had any of these procedures? xxx

Sorry to ask again, but how much pain did you ladies experience? I have had constant pain now for 6 weeks ( unless I dose myself to the max on paracetomol and codeine which I really don't want to do all of the time). It's driving me mad. It is now getting far worse with any kind of activity like housework, carrying any kind of weight etc. I'm SO tired all the time as well and considering not going to work as I feel I can't function. (I actually told a parent about the wrong child recently because my brain seems to have turned to mush...) I just don't know what to do.

Fengirl1- Had a lot of pain just prior to surgery, terrible dragging pain in bowel and lower back if I was standing for too long...kind of similar to period style discomfort. Also suffered terrible hip discomfort dont know if this was related? .
Sure- TVT-o 17 weeks ago, from what I read rates are 85/90% improved for both TVT and TVT-o dont know mini-arc as relatively new. Apparently the succes is measured subjectively in that would you recomend it/are your symptoms improved/quality of life ???. The rates of complications are a different matter it is very dificult to get this quantified and I think this may be in part to the relative newness of the proceedure. As complications can apparently occur as far as 7yrs post proceedure. It is actually a maze when you try to research answers a bit like krypton factor lol xx

Hi Fengirl - I had a very dull ache radiating from the inside out in the whole area, front and back, and for some reason also had terrible sciatica type pains in my right hip which sometimes made me unable to get up/sit down at all. I guess this is related as I don't have that any more. Also back pain, so that when you are standing you find yourself sort of arching your back and rubbing your hands over the lower part without realising (someone asked if I had a bad back as I kept doing that which was news to me!). If I did too much then I felt like I was going to throw up unless I sat down, and sitting down the only relief was actually sitting on the protruding bits rather than my buttocks!!! LOL! When can you get 'seen' by the doctor? Hope you can get sorted very soon xxx

Happy - thanks for the help with this. The mini arc sling sounds quite good as it is similar to TVT but without external ends so I might ask for more information on that. x

If you search for 'True analogy TVT devices' on the Internet it comes up with a site which explains the devices with photos of them which I found very helpful.
I had dreadful dragging pain in my back end before the rectocele surgery. It helped to lie down in front of a wall and put my legs up the wall, a classic yoga position! Sometimes I just wanted to groan and on occasion I actually did at the most inappropriate times! A warm hot water bottle or one of those wheat bags you heat up in the microwave used to help as well. X

Thanks for all the replies about pain - its useful to know other people's experiences. Interesting that hip and leg pain is mentioned as I get pain in my right groin and down that leg.

Nannasylv - how are you? Any news?

Still waiting!
Hope you're all ok

XX

I'm in pain, depressed, feel insulted by the system I paid into! Sorry, not very good company at present!

Likewise Nannasylv, have had to take day off due to pain and feeling sick. Called surgeons secretary to ask if they had received a letter from my gp (which asked if they could bring my date forward). She told me it would make no difference. I know I will be very unpopular at work if I keep taking time off and don't relish the idea of waiting at least two more months feeling the way I do. I'm not thinking straight at the moment - gave a wrong report to a parent last week, called my daughter's teacher the wrong name (have known her for years) and today tried to pull off in my car when I hadn't started the engine. Feel close to tears all the time....
Really sorry to hear you're feeling down. Hope you feel better soon. X

fengirl1 - I'm sorry that you have to work, as well as suffering this, I am totally disabled by it, today, and most days I'm barely functional. I cannot understand why the NHS is so slow at diagnosing, although I believe part of the cause is the prevalence of male specialists, who have no idea of the devastation it causes. I'm going to call the specialist's secretary again soon, but I'm afraid they will just get fed up with me being a nuisance. I'm hoping that the Orthopaedic surgeon I'm seeing on Wednesday, will be able to access both the scan he arranged, and the one the Urogynae chap arranged. I'm desperate!

Sorry to hear both you Nannasylv and Fengirl are in a sorry state - big hugs from this end!

I've just got back from work to find two letters - one from the post-op clinic last Monday with a report of the op/post op consultancy and another from the Urodynamics test on Thursday with the results and suggested future operation. What a difference between this consultant and my original one. With the first consultant I heard absolutely nothing from him from the first meeting (end of July last year) to November 24th (after my insistance) having had the operation on November 3rd!!!! Shocking! Now I know how the system works when people are doing their job properly I realise that I was completely taken for a ride by the first consultant and no wonder I found the whole experience so traumatic and upsetting, not being informed about anything at all. I am going to take this further as I now have proof between the two on how things should/should not be carried out!!! Watch this space, !

Anyway, the results of the Urodynamics test say that I have severe stress incontinence and also underline the procedure of suburethral tape and the risks that go with it. This is how things should be - everything in writing . Still, I am terrified now and can't help but think of Jackie's warning and problems and am not atall sure what to do. I think I will give the consultant a ring and discuss things a bit more.

Nannasylv/Fengirl - what about second opinions or finding someone who knows somebody in the business to hurry things along?? It has made a huge difference for me xxx

surewoman - how I envy you. I have had to fight for several 2nd opinions to get to this point, been fobbed off with physio (years ago for my vagina, then, more recently, for Plantar Fasciitis - at which the physio said "this isn't your back, it's your bowel", about 4 years ago!). I'm so knackered with the pain/lack of sleep, I could just curl up in a corner and die sometimes.

I spoke to the secretary of the Urogynae chap today - he's off, and she doesn't know when he'll be back, so she said she would ask another passing chap to take a look at the notes, to see if anything can be identified yet. She was so nice. The only thing that gave me hope, was that my notes were in the "queries" tray, so not a straight fob-off this time (I hope!)

Hello everyone- I have lurked for a while and you have all been a great source of information, humour and comfort to me. I was diagnosed with a cystocele and rectocele 4 months after having my baby unceremoniously pulled from me, but the gynae said it was fine and I'd be ok after a year and discharged me. I went back after a year and my GP was lovely and referred me to Stoke Mandeville, I got an appointment 8 weeks later and they then re-referred me to uro-gynae but said I was really too young for surgery due to the risk of re-occurrence but did not explain how this risk reduced as I got older, why its acceptable to wait until I am older and why the surgery cannot be repeated. However, today I got my urogynae appointment and the Dr was very nice; totally understanding of how my quality of life is affected and how it impacts on my work and offered 3 courses of action- do nothing, insert a pessary (but then said no more sex for me if I went for that course) or surgery. Said fine when I opted for surgery and said I'd be scheduled in. They are going to do an anterior and posterior repair. I can concerned that the cystocele may be masking a problem as I am pretty sure I have a urethrocele too and forgot to mention that as I have no issues stopping the flow of wee or with incontinence unless I have a massively full bladder and do lunges .

I was also (possibly irrationally) upset to discover I have a mild uterine prolapse which she says she'll leave alone. I feel like my uterus has let me down! Every other exam before said it was fine. I am also upset and angry about how the birth of my DD has left me at 34 as she was delivered through a trial by forceps and no one told me she was in distress. This makes me angry as if it had gone wrong, I then would have had to have had a CS and I am livid that they were willing to take the risk to my baby to go with forceps. I also had syntocin (spelling?) to add to the informal survey that it seems not to help on the prolapse front and no one tells you that.

I am delighted to have been taken seriously and my heart goes out to those of you getting the run around. For me a 16 month wait to get to this point seems so long, but its nothing compared to what some of you have gone through. Would anyone mind if I stuck around to add my 2 penneth?

Glad you've joined us HuggyPomBear, a big welcome to you from the "fallen fanjo" club!! lol! xxxx

You might find that with the anterior/posterior repair done, your uterus will be better supported and stay put for longer? If the cystocele is masking other problems then you could always have a TVT or something to hold the urethra up afterwards.....???!!! Gosh I sound like a uro/gynae now - shows how good this thread is for knowledge on the subject!

Happy - quick question; how big was your cystocele bulge before they operated on it? I still don't understand why they won't touch mine as I am sure it is the cause of all the bladder stuff? Would rather have a line of stitches than a piece of tape, especially after all the problems I have had with stitches that wouldn't dissolve in me and my vagina spat them out (so to speak!) - yikes, what would it do with mesh???! x

Hi sure - sorry for this discription but this is the only way I can picture it and dont laugh promise lol xx It was about the size of a large fat pork link(sausage) that was tucked up there lol cant believe I've likened my Fanjo to a pork link lol haha. It actually used to chaff against my knickers and I always thought I had thrush but at times no amount of treatment helped, in retrospect I realise it was just irritation from constant rubbing, I could not understand why they did not think it was bad enough at initial consultation with first gyn consultant and it was the second one who performed op that felt it waranted treatment . But I do think my rectocele supported it as this was grade3 xx
Cant believe how different it all looks and feels and every now and then take DH shaving mirror just to reassure myself it is still all up inside and not the gaping grand canton of before :). I used to dispare of how ugly it all looked xx mad I know xx But DH admitted for the first time after the dreaded deed that it all does feel much tighter but in a good sense. OMG I am sober and discussing my Fanjo on a forum lol fabulous xx

oops meant grand canyon x

Oh and welcome Huggypombear x