Stress incontinence - TVT

[karmaz]

I am 52 years old. I was finally put on the list for this operation the other day. Had problems since the birth of my last child 10 years ago and twice the consultant advised me to have it done but I kept reading all the scare stories around it and put it off. The stress incontinence is now so bad and affecting so many aspects of my life that I have finally given in and am going for it. Then reading the Mail on line today there was yet another scare story around this procedure. 'Experts say it's safe. So why is this incontinence op leaving many women in such agony ?'. So once again feeling very nervous about it. Anyone out there got positive stories regarding this procedure . Especially those out there who had it done years ago. Does it affect your sex life ? .
Also the consultant told me that before the op I will have to see a continence adviser to be taught how to self catheterise myself after the operation as I might need to do this for up to 2 weeks afterwards. Has anyone any experiences of this ? Must admit took a lot for me to finally agree to this and I really have to have it done but now getting really worked up about it all.

[iggymama]

I had it done nearly seven years ago and it was very successful. Immediately after I was a bit worried as I seemed to be dribbling urine constantly but it soon settled down.

I can now sneeze, cough, run, jump and vomit without piddling my pants.

[iggymama]

Sorry forgot say I did not need a catheter. Can't comment on sex as I am celibate. I have since had a hysterectomy and this did not affect it at all.

[karmaz]

Thanks for that iggymama... it is good to hear about a successful outcome, and years after the procedure as well, hopefully I will soon be sneezing,coughing etc without piddling myself !...hopefully I will not have to self catheterise myself after it. Time will tell

[gingeroots]

I think that's incredibly mean to suggest you need to be taught to self catheterise .Are they trying to shorten their lists by frightening people off ?

Not suggested to me and I've never heard of this .

If you have a hysterectomy - usual I think with a TVT as if your family is complete they prefer not to risk undoing TVT op by any future hysterectomy ops - then you may find that orgasm feels different afterwards because you don't get the contractions which often accompany it and which come from the uterus .

Go for it ,incontinence is horrid .

PS Had mine 15 years ago.

www.mumsnet.com/Talk/general_health/2410008-TVT-surgery-urgent-advice-needed

[karmaz]

gingeroots....so far no talk of a hysterectomy. I had a novasure procedure about 18 months ago. It was fine while it lasted but now apparently the lining of my womb has completely come back along with my heavy periods.
Glad to hear of another success for tvt...when the doctor said about self catheterisation I was a bit surprised. He said it was whilst everything was healing and settling down if I had difficulties emptying my bladder it would be a good thing to be able to do myself rather than stay in hospital for 2 weeks. Most probably their way of getting people home and out of hospital as soon as possible

[gingeroots]

I expect things are different now though I can't imagine you'd be kept in hospital for 2 weeks if you were having trouble peeing .

I had hysterectomy plus some prolapse repairs done and then 6 months later went in for TVT op which was done as day surgery .
I couldn't pee after op so was sent home with a catheter and bag . Checked on by phone call next day . Went back couple of days later had catheter removed and could pee . I would have imagined that if I still couldn't pee it would be at that stage that self catheterisation taught .

But as I said probably all different now

[JustMeAnon]

I had one 6 years ago and it was fine, the worst bit was recovering from the anaesthetic, I was zonked for a week! Certainly no issue with weeing after. I guess at the end of the day the stats suggest some women have problems after but most dont.

[karmaz]

Regarding my original post . Out of the blue today had a letter and lots of information through the post today from the gynaecologist. He went on about 'there has been significant press in relation to potential complications of this surgery...I hope the info supplied has been sufficient for you to decide to go ahead with the surgery.' It says if I want a further discussion to contact him. Regarding the self catheterisation...he says it is because the urodynamics investigation showed an element of difficulty in emptying my bladder. 'This may be further exacerbated by successful surgery. Your name will be put on the list only after we have had confirmation that you can undertake self catheterisation. '
Must admit really don't know what to do now...it has put all sorts of doubts in my mind. Due to have my pre op at the end of this month

[Momma999]

If you have the slightest doubt about it please don't have the operation done. I'm 66 and had a TVT-O done over a year ago and haven't been free of pain and irritation since and it didn't work. In fact I'm worse than I was because on top of the continuing stress incontinence, I have vaginal pain which prevents any penetrative sex, pretty much constant irritation around the urethra where the tape attaches itself and sporadic groin pain. It's also changed the way that I wee so that instead of a strong stream, it runs out all over me and I often end up with a wet toilet seat and damp clothes.

I went into the op trusting the medical profession and believing them when they said the possible complications were minor and recovery would take 2 weeks. What a joke! Had I known about the problems people had had and that the operation had been stopped in Scotland I'd certainly have chosen to just put up with the incontinence and be pain free and able to enjoy sex.

It's been a battle to get anyone to take any notice of the problems I have had and it was only when I requested a form so that I could apply for a copy of my medical records that anyone at the hospital started to take me seriously. But more than a year on, no one has any positive news for me about corrective treatment and tape removal is such a big operation with few successful removals that I've heard of that it doesn't seem to be an option in case it just makes matters worse or just swaps one set of problems.

I didn't have to self catheterise and have never had the bladder infections which seem so common after the op but oh how I wish I could put the clock back.

I now travel to a specialist unit for consultations with surgeons who are used to dealing with ladies with problems from the tape. Compared to those who are now unable to walk and confined to a wheelchair because of nerve damage during the op, I'm lucky but angry at not being told the truth about all the possible complications.

I know some people are delighted with the results but I no longer feel that an operation which has only a 80% success rate and which can't usually be reversed is a risk worth taking. I could hardly believe my ears when it was suggested that I had a second tape inserted on top of the first one to try again to cure the incontinence. No chance.

Apologies for the long post but I feel very strongly about this.

[gingeroots]

karmaz - if it were me I wouldn't go for it .The assumption seems to be that you might have to self cathertise (sp ,sorry ) . How would that be a step forward ?

I'm not up on these things but can you ask what the alternative might be ,other ops ?

[Momma999]

As far as I know, having asked the question of several consultants now, the only other surgical option is a Birch's Colposuspension which has better long term success rates but is quite major surgery and might not be appropriate for more minor incontinence.

My incontinence, especially with a bad chest infection or a surprise trip or tumble, was described as 'gross' and yet the Bit=rch's op was never offered to me as an alternative to the TVT-O.

[gingeroots]

Could you ask whether you could have the Colposuspension instead of the TVT ?

I was orginally offered that ,put it off for a few years and then had the TVT . Which has been fine .

I do feel for you .It's horrible leaking all the time ,so degrading .

[VeryPoorFloor]

I had it done a year ago and it's been amazing - I've got my life back. Search on my name and you will find my thread.

I did lots of research and it seems that success is very much based on who does the op - it's quite a tricky fiddly thing to position the tape so you want a surgeon who has done several a week for 10 years or more rather than someone who just does several a year or who is inexperienced.

Whilst there is a risk with any op, I had got to a situation which I wasn't prepared to live with and I was willing to try anything. I am so glad I had it done as I can run, dance, jump etc. the recovery was fine, very little pain and just feeling a bit tired and tender for 2 weeks.

Do your research, but don't read the daily mail! It's not reliable scientific journalism.

[helsbeckham]

OMG VeryPoorFloor you clearly havent read the Daily Mail article, the woman suffering IS a journalist !!!!

[marchgirl2015]

Hi there
I was the person in the Daily Mail suffering since having the TVT mesh inserted for Sress Urinary Incontinence. Please fully research the risks of the operation before signign up for it.
If you would like more information do please join my Facebook support group called Sling The Mesh. The Daily Mail article was a very well researched and informed piece.
When it goes right this operation can be a success, but when it goes wrong it is devastating.
The pain of post op complicaitons is way, way worse thatn incontinence.

[debslostmarbles]

Please, Please go onto, Sling The Mesh - TVT campaign on Facebook. you can see the devastating effects this awful mesh can cause. This has ruined my life, I have had to go through 4 operations. I am waiting to see neurologist due to my tape snapping and causing nerve damage in my groins. (i am on crutches & have to use a wheel chair) there are alternatives you can have which are in my opinion far safer. we are campaigning to get this mesh banned. Do not let the Drs bully you to have this procedure or believe them when they tell you it is a simple safe operation. Before I had the TVT Put inside my body I was at uni doing a degree, I used to walk my dog for 2 hours a day played squash & Tennis. I am unable to do any of these things now. I am begging you to do some research before you decide.

[VeryPoorFloor]

I've read the article now. I think it mainly says what I said - that who does the operation is key - an inexperienced surgeon can cause damage to surrounding tissue or not place the tape properly. Is it the tape or the surgeon that is the problem? I would argue it's the surgeon.

I am really sorry for everyone who has suffered such awful issues, they sound truly horrendous. I do think my incontinence was worse than some who have posted though which is what lead me to doing the op - i couldn't walk anywhere let alone play tennis. I couldn't get pads big enough to allow me to do that. I used to end up wetting myself in public - I once stood in a lift with wee running down my legs and into a puddle on the floor with the others in the lift noticing and I was just stuck where I was until the doors opened. I had no bladder control at all. The operation has changed my life and, whilst this might not be true for everyone, I thought an 80% chance of a normal life was a chance worth taking.

The main difference with this op and most others is that it is truly voluntary in the sense that it isn't essential to your health. Most operations have risks and side effects but they are often medically necessary. This makes it controversial as those who have it will potentially think they were better off before.

I just want to give another side to the tvt discussion - not a better or "right" view but a view that is equally valid.

[karmaz]

I haven't been on here for a few days...so just read through all this. I really don't know what to do. There are some very strong views here for and against. Momma999 your whole situation appears to be a complete nightmare. Your post has definitely made me think again. Think I will contact the gynaecologist and ask about any alternatives or for him to reassure me about it. Although he has always been very pro this procedure. I really couldn't handle it affecting my sex life or any of the other terrible side effects. As said I have turned this operation down twice before and it is only out of desperation that I am now considering it. I will have a look at your facebook page now debslostmarbles. I was more or less resigned to having this done...but now...well , really stressed and don't know what to do for the best. Thank you all though for all the very different opinions.

[karmaz]

Just had a quick read around. Why is it that Birch's Colposuspension has not been mentioned to me before by the consultant ? with the small amount of research I have just done it doesn't fill me with quite as much dread.

[karmaz]

I have today taken up the consultants offer that he made in his letter to me to meet up with him to 'further discuss ' the TVT . I will be meeting up with him this Friday. Has anyone got any ideas about what questions or queries that I should ask /raise. Very nervous about it and really don't know what to do for the best. I have my pre op very soon . I can't carry on any longer with the incontinence that I am currently experiencing and feel that if I turn down this TVT that I will just be left to get on with it as I am.

[Mummysar76]

Ladies, please consider this awful op very carefully before making your decision. I had my tvt 5 years ago and have just had major open surgery to remove it and to do a burch colposuspension which has cured my stress incontinence. This was my 10th operation since my tvt as my tape eroded into my vagina 3 months after I had the procedure. I had that sub-urethral section removed which unfortunately sent the rest of the tape on a painful journey around my pelvis. It had travelled through my ligaments and muscles and had to be removed/scraped off my pelvic bone as well as removed from other areas including in my abdomen and very close to my urethra. I have also been catheterised for a total of about 3 years out of the 5. I may now be left in permanent pain due to nerve damage but I won't know how bad until I've healed. Please visit the Facebook page sling the mesh to find out more and quiz your surgeons to make sure they tell you the real risks of this "gold standard" procedure. Sorry to sound negative but there are only two surgeons qualified in England to remove this tape -like getting chewing him out of hair. I hope you understand why I want people to know the other side to this op. X

[karmaz]

Following on from my last post I saw the consultant the other day. He still tried to 'sell' the tvt to me. However he did not disagree with me that some women have suffered due to it. I said that I felt that I was playing Russian Roulette with my health. I have told him that I will not have the tvt done. He didn't try further to persuade me otherwise. He suggested having Macroplastique injections and if that doesn't work to go down the route of colpsuspension. Feel so much happier now. After reading some of the comments on here and going onto the Sling the Mesh page on Facebook I just couldn't go through with it even though my stress incontinence rules my life.

[gingeroots]

Well done OP .So glad you had useful meeting with consultant .
Let us know how you get on ?

[karmaz]

Yes gingeroots will update when I have been 'done'. Had a copy of the consultants letter today . I still have to be taught how to self catheterise before I can have the macroplastique done though. He said in his letter that the tvt carried 'small but significant risks of chronic pain,tape erosion etc'
So he has taken my concerns seriously. I feel better in myself not to be having it done although I know many like yourself have had no problems with it.