TVT Operations....How many of you have found this successful?

Hi Denise.

I had a tape fitted in 2012 abd for first 2 years felt great, sadly a different story now.

Like you I feel as though I have 2 bladders, empty one and 5/10 minutes later need to go again.

I've had endless uti's and been back to see surgeon who fitted it to be told take methanimine hipperate to prevent an infection and oxybutinin to stop muscle spasms for frequent urination oh, and given that I'm pre-menopausal (46) apply estriol cream to help with symptoms.

I also feel a dull ache in my lower abdomen and as though my urethra is irritated & swollen and find lasting discomfort if I sit on a hard chair for any length of time.

I've asked to be referred to different hospital.

I'm that fed up I would rather pee myself than go through the 3 years I've just had.

How are you now ? X

Hi Denise,

I had my op in 2004. I have the same urinary problem of having to go to the toilet twice, I thought it was just me! My hubby can't believe that I need to go to the loo after just going. I also am getting recurrent Urine infections. I would have said that it was the best thing I've ever had done, but only realised recently that all of my chronic pain and other problems probably all are because of this op.

Sorry Elaine, for not responding earlier. I'm afraid that I'm worse. I have had burning urine like a UTI for the last 5 weeks and the 4 courses of antibiotics have done little so I went to Emergency at the hospital where I saw a doctor who said he knew all about mesh. As he thought I had mesh migration he referred me back to my doctor who sent me to the Mesh Clinic that has recently been set up. I was admitted to hospital for some tests and told that I don't have an infection and that the pain is coming from my urethra. I'm being re-admitted to hospital next week for day surgery so that the doctor can have a better look under anaesthetic. I think that I need to have my mesh removed but I'm petrified because it's been growing into my flesh for almost 14 years and I have been told previously that I would risk damage to my bladder and urethra if anyone tries to remove it. Many women seem to be very incontinent following removal. The doctor indicated that she would remove any mesh that is causing problems but that would mean partial removal, which I know causes more problems in the long run. 

Thanks for asking x

Hi Jo, I have just seen your post and tried to reply to you at the same time as Elaine. I didn't realise that my post would go below. Please see what I have written as it's meant for you too.

I hope that both of you are on the UK Facebook page "Sling The Mesh" or if you are In Australia the Australian Mesh Ladies page. Due to all the complications, I think that every country now has a mesh site, where women affected share their issues and any assistance found. 

I hope Jo that your bladder issue has settled and that you are fine? However, in writing that, I need to be honest and admit that I often had problems that would seem to disappear for months at a time, which left me feeling unsure if my TVT mesh was really the culprit but this has meant I haven't done anything and it's just become progressively worse over time. I wish I had, had it removed straight after surgery when it was too tight. 

Good luck xx

 

That is frightening. In my case it's been a month and the surgery did not work. I saw my doctor who said being so young this is very rare he wants to see me in another month which is the 2 month mark, the normal time to  see patients after surgery. He mentioned medication..but really? Then I would like to remove it if it doesn't work and I could just use medication to control it which by the way...I don't want to use. I have to be honest I didn't do my research about the long term risks because I really really wanted this issue to be over with. It's horrible the suffering you are going through. I will speak to my doctor about this...I don't know if he would consider removing it. But my argument is It did not work so I want this mesh out. I'm still wearing tena and each time I go to the washroom I'm reminded. that I'm still leaking almost the exact amount.  I had heard stories about how successful many people's surgeries went...and that is why I did it. I thought it would be successful. My doctor said it works in 90 % of his patients. 

Monica, as you say if it isn't working then why have a piece of plastic floating about your body for the rest

of your life for no reason which at some stage years later could start causing you even worse problems. It takes approx 6 weeks for the mesh to 'knit' with your tissues so getting it out asap would be my recommendation. My procedure worked straight away for my problem so I'm not sure what another month would do? There are non mesh alternatives like the burch colposuspension and the autologous Sling which uses a piece of your own body tissue instead of plastic. These are equally as successful as the TVT with no risk of foreign body reaction. I'm not saying they don't have certain other risks like any surgical procedure although my mothers worked out great. I think the plastic is pushed more as it is less expensive and is a simpler procedure (and call me cynical but the manufacturers of the devices have a vested interest in keeping the surgeons sweet). You may not have any issues in the future with the plastic but it's not a risk I would take. If you are on FB please join the Sling the mesh group for lots of info and advice from women who are in a similar situation (it's a uk based group but there are women from all around the world on it). All th best hen and I hope whatever choice you make works out for you xxx

Hi Sue, do you have any pain or recurring Urinary Tract infections (cystitis)? If you're on Facebook please look for Sling the Mesh Campaign as there's lots of advice on there xx

No jackiedee, nothing like that, it's just that I'm leaking again if I do anything like vacuum or bend. I will look that site up thank you xx

ThantThanks Vauxhallgirl, mines defiantly worsening 😢

I am due to have my tvt done next Monday.I am really concerned

about the risks but as I am 52 and have had my problem 10plus yes

decided to try it.Your story is reassuring and hopefully I can post

one later like yours.

Hi Sandra, I'm due to have mine tomorrow and I'm going in to say "no thanks" I've had stress incontinance since the birth of child one 30 years ago and I've managed it. Its recently been exsaerbated by an excercises course but hec, I can live without jumping jacks and still raise a pulse! Have you tried the Elise? It is the same as the Kengel 8 probe but it's a cheaper company and they are really supportive. I've had mine in a drawer for months and it doesn't work like that does it!!? So I am now on a regime of the Elise, plus pelvic floor ( will attend hospital clinic nurse for it too) and mindefulness in the area. It is proven that thought affects matter. So the tissue is strained, we know that. But it's still capable of excercises and strengthening. This is the route ( along with Pilates ) that I am going to take, comitedly and for the first time in my life. ( you and I are the same age). If I succeed, I will share my regime honestly with this community. Good luck with your choice. As someone on the 'sling the mesh' FB page said to me!! It's really hard but don't be afraid to say no to this if you're not sure. Xxx

Hi Kitty

What is the Elise and Kengal8.I have never heard of either.I have never

joined a forum before but really wanted to speak to others for their

views.If I was offered another option I would give it a miss.

When I asked at the hospital if I could have the old prodecur I

was told it was no longer a option .No one has discussed pessaries

either .Will you contact the hospital or tell them when you get there

you are no longer interested.I thought I would go next Monday and

tell them then.

Oh my Sandra. I'm horrified that you have been told that the non mesh procedures are no longer an option. I know this is totally your decision but I would seriously do my research and try and find out where you can get those other procedures done. At least then you could make a proper informed decision. With mesh you could be one of the lucky ones but if not then it can be life changing and most definitley not in a good way. My TVT is in 12 years and I'm only seeing about it now as I didn't know anything about potential complications. Have you been fully informed of the risks by the surgeon?

Hi jackiedee

Yes they explained the risks apart from the severe pain that some

people mention in their legs hips etc.I already suffer from lower back

pain and joint pain so wouldn't want the pain to be any worse.I was

not offered a alternative.I take Vesicare which helped very slightly.As

As far as I was aware there was nothing else.

Sandra, there are a couple of good alternatives which cost more than the TVT procedure and are more specialised with longer recovery period compared to the TVT so I would say that is the reason why they push the mesh procedure. The autologous Sling uses your own body tissue to create a Sling meaning that there should be no foreign body response as it's not plastic and the burch colposuspension which is the hitch and stitch which is what my mum got 25 years ago (and going strong). If I could go back 12 years I would do my research and I would most definitely NOT get this TVT. It's like Russian roulette. I also have to say that until a couple of years ago I would have recommended the TVT procedure to anyone as it didn't give me a lot of problems until 3 years ago (albeit I had sore legs but it was manageable). Im heading over to England from N Ireland next week to get a specialised scan as no one here will accept there is a problem. I am having to finance this all myself. The medical profession do not want to accept there is a problem as in america there are over 100,000 litigation cases ongoing and in scotland the procedure has been suspended since 2014 (although I have heard a few stories of women still being given it). I would just advise you to be fully informed as this could affect the rest of your life xxx

I also live in Northern Ireland and I am not surprised I was not offered

anything else considering the state of the NHS.I already cancelled

the procedure May 2014 but the problem became worse so asked to

to be reviewed again.I really hope you get the help you need when you

go to England.I will seriously have to rethink whether to have it or not.

I have managed without it up to now and certainly down not want to

to have further complications on top of everything else.

Sandra, I have made contact with several women here in N Ireland who are suffering terribly as a result of the tvt. They are suffering constant Urinary tract infections and have been diagnosed with fibromyalgia (as have I) since TVT implantation. I also developed psoriasis after the surgery which has nearly driven me mad. One of the ladies I mention took herself off to get a scan in England in July after being told for years that her symptoms were all in her head and the scan showed that the tape has eroded into her urethra. The other lady has been palmed off for years and had decided to just live with it as she was getting nowhere. 2 other ladies in my town that I know of are also having issues. I did a freedom of info request earlier in the year to the NHS asking how many TVT complication procedure had been carried out and I was told there had been 14 removals or partial removals of the TVT in the past year. Thats not including the women who are seeing their consultants and are being palmed off (like me). My consultant actually blatantly lied to me about it but I had read so much into it I called her out and she had a change of heart and agreed to try and get me referred to England which was not successful. I was told that the mesh that is causing all the problems is not the same mesh as used here. That is a load of bollocks as it is the same companies involved and the same material (polypropylene). I will never look at doctors in the same light again. Good luck x

And that freedom of info request was for N Ireland alone (not the UK)

That's is frightening statistics.When I spoke to the consultant about

my concerns he said don't worry those complications are very seldom

and most women are very pleased with the results but off course

he would say that.I honestly think I will cancel it and tell them I am no

longer interested.Thanks for making me more aware of how serious

the complications can be.

I am very conscious of not coming across completely over bearing and I would never tell someone not to get the procedure but I think as long as you are fully informed then at least a proper decision can be made. I just wish I had had the same burch procedure my mum had all those years ago. It worked a treat and she's 74 and it is still going strong. I don't accept that there is no option for these procedures in NI. I would phone about to see who can carry them out. I know there are good docs out here but I honestly don't trust the medical profession any more. I've had my eye opened. If you need any more info I can respond this way xxx

Thankyou so much for your advice and I am glad I joined the for

It helps talking with people that have had it done and their experiences.

Thankyou so much for your help.xx

Hi Sandra, I wonder if you or any of the other ladies on this site know if the scan that shows whether the tape has eroded into the urethra is just a normal ultrasound or something more specialised? I have found the Vagifem hormone tablets inserted internally has helped my condition a lot and I'm also back on oral HRT. The doctor also ordered an ultrasound and I was told there are no problems and everything is fine. However living in a small country town and with the ultrasound being viewed only by the GP and radiologist, I wondered if they know what they are looking for? The constant uti like symptoms have now gone but I still have a slight ache in the region. Is there anyone in Australia specialised in assisting women to find out what is happening rather than just to sweep it under the carpet. Of course I'm aware that only people with problems research like mad and go on these type of forums. I felt a lot happier when the doctor said the ultrasound was fine but I just have this nagging doubt that she didn't know what to look out for. I would feel a lot happier if a gynaecologist or urologist was involved in checking and coming to that conclusion but there seems to be a reluctance to check. I guess this is why women from Ireland are going to the UK. Where can an Australian woman go? Thanks - Denise

Denise, an ordinary ultrasound scan would not show the tape. It doesn't show in MRI either so you are correct in saying that the doc wouldn't be able to tell.  The only scan would be the translabial scan which is the ultra sound but uses a different attachment than the ordinary scan. I am travelling to London next week as I can't get this scan where I live. If you are on Facebook at all I urge you to join one of the mesh groups as there are quite a few Australian woman on them (Slingthemesh or mesh problems) and a wealth of information