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The Voices Today on Messed up Mesh (TVT Mum)
Help and support to both men and woman who have had the medical device TVT Retropubic, TVT-Secur, TVTO and TOT, synthetic polypropylene mesh for hernias, prolapse, stress incontinence and bladder and bowel disorders. You're not alone!

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frequently asked questions

Dated: 29 May 2011

What is TVT mesh erosion?
I have uploaded a webpage to give some understanding on mesh erosion www.tvt-messed-up-mesh.og.uk/mesh-tape-erosion-symptoms.html >>>

What is TVT mesh surgery?
Please visit this webpage www.tvt-messed-up-mesh.og.uk/mesh-surgery-what-is-it.html >>>

Why are we called complex?
Please visit this webpage www.tvt-messed-up-mesh.og.uk/tvt-complexity.html >>>

Is 'vaginal tapes' the correct medical term?
No, there are different shapes besides the 'tape' please view this webpage for more information for the term 'TVT' in the Medical World www.tvt-messed-up-mesh.og.uk/tvt-medical-term.html >>> and the term 'TVT' used for our Support Group www.tvt-messed-up-mesh.og.uk/tvt-our-support-group.html >>>

How do I find out what medical device is in my body?
Accessing Your Medical Records Under the Data Protection Act 1998, you have a legal right to access your health records. If you want to see your health records you don't have to give a reason for wanting to see your records. For full details on how to access your medical records please visit the NHS webpage medical records, please visit this external link www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160 >>> or you can contact your GP and consultant they might tell you what medical device you had put inside your body, although you will need the full information including the manufacturer and the name of the medical device. You will need this information when you put in your adverse report to the MHRA.

Why isn't my original surgeon available to treat me?
I hear this so often, unfortunately many surgeons who put these TVT medical devices in us often do not have the experience on mesh related complications and will often refer you on to another consultant who they feel has the expertise to deal with the problem. Plus another reason I fear is this is another way to avoid putting in an adverse report on the faulty medical device plus fear of being sued, loosing their job. The only person really to answer this is your original surgeon, ask them why.

Why hasn't the MHRA released a health warning?
Very good question, we have communicating with the MHRA since early 2009 to get a public notice out in the UK and for Europe, to see recent update on this please visit here www.tvt-messed-up-mesh.og.uk/news-from-the-mhra.html >>>

Do you have a National register?
This is something we are working on and is in the pipeline. As you can imagine this is going to take some time to produce. Thank you for your patience, in the meantime it is advisable to report your adverse event to the MHRA on this direct link www.mhra.gov.uk/Safetyinformation/Reportingsafetyproblems/Devices/index.htm so we can safetly say we all added our experience with these faulty TVT medical devices although we are very disappointed they have not been quick to act considering the FDA and Canada have released this notice www.fda.gov/MedicalDevices/Safety/AlertsandNotices/PublicHealthNotifications/ucm061976.htm

Is it possible to have a full mesh removal?
Yes it is possible, however, it really depends on how long the TVT mesh has been in your body, the earlier the procedure the more acceptable to have full mesh removal, the longer it has been in ie: years this will be a very complicated and serious operation and definately needs an expert surgeon. Some people opt for partial removals to relieve the discomfort. Please visit here for recommended expert surgeons www.tvt-messed-up-mesh.og.uk/mesh-complications-recommended-surgeons.html >>> and another good read is here www.tvt-messed-up-mesh.og.uk/tvt-complexity.html >>>

Is it UK Law to have a fully informed consent?
Most definately, as quoted by our medical expert - In English law, all patients should be told about these risks whatever the success rates and skills of the individual surgeon. Even if the risk is low, the unpleasant and serious nature of the complications is a relevant material matter in assisting the patient on whether to give valid consent to proceed or to decline.

An informed consent can be said to have been given based upon a clear appreciation and understanding of the facts, implications, and future consequences of an action. In order to give informed consent, the individual concerned must have adequate reasoning faculties and be in possession of all relevant facts at the time consent is given.

Are Sales Reps attending our surgeries? Yes, more information will be here at a later date, as I want to do another webpage concerning this matter.

I heard we are experiments is this correct? These mesh surgeries have been going on for many years and we are their experiments recently confirmed here, although we have other expert articles to show we are experiments too. Please click on this link to view more information Abstract: Dr. Anne M. Weber, of Pennsylvania, told the journal that a lack of information made it impossible for patients to give informed consent and suggested all vaginal mesh surgery be considered experimental.>>>

Have the manufacturers done any long term RCT's?
Unfortunately no, recent research indicates the manufacturers have their products approved through laxed regulations and is currently under investigation. To help you understand more please read this PDF: www.tvt-messed-up-mesh.og.uk/polypropylene-is-not-inert-in-the-human-body.pdf >>> and also visit this link for more information from the BMJ: www.tvt-messed-up-mesh.org.uk/british-medical-journal.html >>>

How can your support group help me?
Since 2009 when I first published this website we started with 5 people and since this time we have had more than 200 enquiries with 130 members in our support group. Although you will find a lot of the members wish to have their surgery details remain private which is fully understandable. We do have some members who are willing to share their experiences with each other. You will find useful information to all those questions you want answered. We are trying to bring awareness on the harms TVT medical devices can do besides affecting our health it also affects our quality of life. Please read through all the links located to the right navigation bar of the website.

Where are the surgeons in the UK?
Another good question, exactly what we all want to know, where are they? It was only when I contacted Professor Zimmern in Dallas USA he kindly provided the recommended expert surgeons in the UK, although I have to say these surgeons are now under enormous pressure and we fully understand during this time you will find sometimes they cannot treat you due to the growing numbers of people with mesh related complications, it is advisable however to contact one of them as they may give you a recommended surgeon within your local catchment area.

We are also finding expert surgeons from reliable and trusted testimonials from people in our support group who have been treated by their own surgeons for mesh removals and this list will grow over time.

What are the mesh complications?
Over time we have come across the most common complications as shown on this webpage www.tvt-messed-up-mesh.og.uk/important-issues.html >>>

Who do I see to treat me?
For Mesh Complications: Urogyneacologist, as he knows both the vaginal and bladder area. Urogologist for implanting although obstetrician Gynaecologist do this surgery too, however you need a urogyneacologist if you experience problems or unless the original surgeon has experience in mesh removals.

What are the mesh symptoms?
Again another good question, it has only been through our own experiences we have complied our own mesh symtoms list, you can find the information on this link www.tvt-messed-up-mesh.og.uk/mesh-tape-erosion-symptoms.html >>>

Where do I report my surgical complications?
Please visit this webpage to show worldwide registers www.tvt-messed-up-mesh.og.uk/worldwide-registers-reporting-adverse-incidents-for-medical-devices.html >>>

Who do I see to get the mesh removed?
Most definately an expert surgeon, make sure you have all the relevant tests,you need to ask your surgeon has he done mesh removal before, how many, were they all successful, you want the procedure put in writing and copy sent to you and your GP which is standard practise.

Why isn't there any media coverage?
Because it is all hushed up especially from the governing body MHRA, please view the recent dispatches programme, details are here www.tvt-messed-up-mesh.og.uk/dispatches-the-truth-about-going-under-the-knife.html >>>

Where can I find more help?
Advisable to read all medical expert articles on the website, do your own research, ask plenty of questions at your appointments, www.tvt-messed-up-mesh.og.uk/new-patient-advice.html >>>

I want to help your support group who do I contact?
Please register on the message board it is free to join. You will need a new username ie: first name and second surname initial. After you have registered I will need a brief on why you want to join us and I will then approve and activate your membership. You will have full access to all the forums. Direct link is here www.tvt-messed-up-mesh.og.uk/tvt-messed-up-mesh.org.uk/phpbb/ >>>

Why does my surgeon say it is rare to have complications?
To keep the truth hidden and secret, why? because there is huge amounts of money being made both in surgeries for implantation and for extraction, and of course the manufacturers are raking it in. You will have to research and read many articles to understand what is fully going on within the Medical World concerning TVT medical devices.

Imagine all those poor people sat at home who have been told such a lie, mesh erosion is a very common problem, the statistics are skewed through non reporting of faulty medical devices by the surgeons. Some people do not have internet access, there is nothing in the media, everything has been hushed up in the medical world, it is scandulous situation we are all facing.

As quoted by our medical expert: Most doctors do report drug side effects to the MHRA but surgeons seem to have a mental block about reporting the side effects of new medical devices. The latter may be related to the surgeons ' ego ' as they may worry that such problems reflect their surgical expertise.

Are you a registered charity?
Charity Registration was a subject in the newsletter dated February 2010. I mentioned we are going to register TVT Mum as a charity, however, after reading what it entails and found our charity does not have an income over £5,000 we do not need to register at this present time. We will do this at a later date if it becomes necessary to do so.

I wish I had time to set the charity up but found there is far too much reading for me and plus due to the other commitments running the website and support group and plus all the red tape to run a charity is just too much work for one person. I will need a full time person to help me, I am hopeful someone will come forward in the future and help in this area.

Can I help you with research?
Yes, anything you feel I should know is always welcome to help with the growing database of research, it is also helpful to share your TVT experience both on implantation and extraction to get a clearer and bigger picture on the truth concerning TVT and other mesh medical devices. It is good for the support group to email each other privately but we still need your input by sharing on the message board so we can too see how things are progressing with your health.

Is there any lawsuits going on?
Yes, please visit this webpage to see what is currently happening worldwide www.tvt-messed-up-mesh.og.uk/recommended-solicitors-statute-of-limitations-successful-mesh-claims.html >>>

Where are the N.I.C.E guidelines?
To view NICE guidelines please view this PDF:
www.tvt-messed-up-mesh.org.uk/pdfs/NICE-Consent-Procedures-Benefit-and-Risks-Uncertain.pdf >>>
To see new patient advice please visit this webpage:
www.tvt-messed-up-mesh.org.uk/new-patient-advice.html >>>

What other advice can you give me?
I would definately bookmark the website and read the latest news: www.tvt-messed-up-mesh.org.uk/latest-news.html

Is there an investigation at this time?
Yes the MHRA, BMJ, TVT Mum and the Medical Experts are all currently doing an investigation on these faulty TVT medical devices. Please visit the recent news from the British Medial Journal (BMJ) www.tvt-messed-up-mesh.og.uk/british-medical-journal.html >>>

Besides these places the dispatches programme also aired - Dispatches investigates whether in the drive for innovation, patient safety can come second. The programme reveals that although these medical devices save thousands of lives every day, there are questions from patients and doctors about the amount of testing that these products go through before they go on general sale. Please view here for more information: www.tvt-messed-up-mesh.org.uk/dispatches-the-truth-about-going-under-the-knife.html >>>. As you can imagine the enormous task ahead is going to take years to resolve, but I am very hopeful we will start to see some results some time this year.

You are the only support group I know of in the UK. Do you get any outside help?
I have been hearing this alot from people approaching me every single week for advice and support and I am amazed really considering they (the medical world) all watch this website as seen from the worldwide traffic report!

I have tried approaching the media, AVMA, NHS, MHRA, my Surgeon, not even any other organizations such as the Bladder and Bowel has stepped in to help me here I have had no results, in fact most of the time I do not even get an acknowledgement to my request for help. I have no funding, I am not government backed, I am disabled from mesh tape and developed Myasthenia Gravis and Diabetes since the mesh surgery.

I give my time freely because I care, I don't want anyone to go through what we are all experiencing with TVT's and synthetic mesh surgeries. Is this wrong of me to do this work? I also have another website I run to keep some happiness in my life and also I do have a private life with my family, how can I keep this website going without more professional help? it is becoming a huge task for me and this is why I hold back to get it out in the public domain due to the influx of enquiries, who is going to help me when that happens?

Please contact me if you are a professional and can offer your help Contact us >>> All enquiries are treated as strictly private and confidential.

Do you have a Data Protection Policy?
Yes, Please visit this link to view the details www.tvt-messed-up-mesh.og.uk/tvt-mum-data-protection-policy.html >>>

My Consultant says - Don't look on the internet, why?
Not surprised really as the medical world hate the idea everyone has freedom to self educate, as we all know knowledge is power and once we begin to understand and find out the truth on these TVT medical devices they start to panic!

It is known most GP's will search the internet on a health problem and this goes for Hospitals too, I have actually seen them do it, so don't take any notice, they are only trying to insult your intelligence and dumb you down and this goes for everything in life, learn, learn, learn and switch off the TV, also they (the medical world) know we are the only support in the whole of the UK! instead of dissing our website why aren't the helping us all here?

How is your website funded?
I fund the website mainly myself, however, occasionally I get a really kind person who offers a donation at their own descretion, which I can tell you is very much appreciated as it helps to keep the running costs of the website and maintenance, telephone calls, stationary, and other materials ie: mesh for the awareness ribbons and components.

How can I join your support group?
You can either join by direct personal correspondence by email or telephone or you can register and join the TVT Mum message board.

Do you have a petition?
Yes we have a couple of petitions going at this present time, one is from a mesh sufferer and the other is the offical TVT Mum petition located on the Care2 banner showing on the right hand side of the website. To view all petitions worldwide please visit this link www.tvt-messed-up-mesh.org.uk/petitions.html >>>

How do I use the website?
Advisable to read everything located on the right hand side nav bar of the website where you see the small green arrow, I would suggest you read a little each day and return back, do not spend hours and hours reading as it can and will overtake your life especially when you are trying to seek those answers to all your questions and trying to understand what has happened to you. A useful webpage to visit is the sitemap www.tvt-messed-up-mesh.og.uk/website-sitemap.html

How can I cope with this daily pain?

In my personal opinion if you live in daily pain and suffering I personally believe dwelling on ill health just makes you worse and depressed, I always try to think of things to keep my mind away from pain and health issues. Pain management counsellors are excellent you could ask to be referred from your consultant.

I often hear this question - I can't cope with it all, I am at my wits end, what advise can you give me? Through my own personal experience I know and understand how devastating and live changing this can cause, first we are in shock and try to accept it, then the anger sets in, then it turns to why me and we start searching for answers, then we begin to learn to balance our health within our daily lives, I have added some of my suggestions to help you get through.

Why do you use the rokeby venus image?
Good question, Venus, the goddess of Love, was the most beautiful of the goddesses, and was regarded as a personification of female beauty. She is shown here with her son Cupid, who holds up a mirror for her to look both at herself and at the viewer. To read more please visit: www.nationalgallery.org.uk/paintings/diego-velazquez-the-toilet-of-venus-the-rokeby-venus >>>

Another reason I chose the Rokeby Venus is the actions by the prominent militant woman suffragist Mary Richardson, she said, "Yes, I am a suffragette. You can get another picture, but you cannot get a life, as they are killing Mrs. Pankhurst."

The following statement, signed by Miss Richardson in explanation of her act, has been received by the Women's Social and Political Union: To read more please visit this webpage: www.heretical.com/suffrage/1914tms2.html >>>

Do the colours of your website have meaning?
Yes, I have chosen the colour pale salmon to represent the journey of the salmon. Comparing the salmons journey to our own life journey helps us comprehend why the salmon is regarded as the wisest of animals.

In general people with this power animal are tough and can persevere when others aren't able to. Often they pick a life filled with challenges knowing that within each challenge lies positive-ness and the opportunity for growth. They also have strong spiritual desires and work tirelessly to manifest them. The Salmon's aim is to overcome all obstacles that may present themselves.

The colour sea green is water representing life. Like a tree planted in the water it spreads it's roots and has no fear, it's leaf is green and is not anxious in the year of drought, I interrupt this as: when things stop I will not be deterred and when the expected time arrives again I will continue to be more fruitful in life.

I really hope the above Faq's help you to understand what is going on with these TVT medical devices and Mesh surgeries.

The world would be a better place if everyone showed more empathy towards each other, I like to say we are all going through exactly the same emotionally but in different ways. Worry is a complete waste of time, I truely believe there is an answer to everything, our anxities are temporary and issues do resolve and eventually life proves fruitful and worthwhile.

Trust me I have been through some really harrowing times and the best way for me is to simply balance life out to the way I feel comfortable with, it does take time but eventually you will find a way to cope through daily life.

I always say too there is absolutely no excuse to be bored there is so much to see and learn in this world, even when incapacitated we can still pick up a book, use a PC and use the internet and explore, switch on the radio, visit places you don't even have to leave your house its all there on the internet, I could go and go I am never ever bored, if I can do it disabled and housebound you can too! Encourage a challenge and find that niche to continue living your life as full as possible. Above all family, friends, Happiness and Love is all that counts!

People say to me: Lorraine how do you cope with it all?
In brief it's mind over matter and living a balanced life that suits me around the 24/7 hour/day clock. Plus I have a wonderful, loving and caring husband who really is the perfect husband, my family, personal friends and all the meshie friends I have made throughout the years they too have given me help and of course all the medical teams.

I can assure you it is not an easy life, it is extremely hard living this way. Still to this day I continue to fight my health issues and I try to block it out the best I can as I want to make the most of my life. Life is far too short to dwell on health issues daily.

The hardest thing for me to accept is the fact a person did this to me it was not a natural occurance like an onset of disease, my life changed in an instant through the negligence of my surgeon who I thought was an experienced qualified surgeon to do the TVT procedure and later found out he was not, qualified yes but definately not experienced in the procedure, there were 3 of us that morning and 2 of us suffered at this mans hands although I don't know what happened to the other lady.

I am determined throughout the rest of my life although in ill health I will continue to get my voice and all the other people who are suffering from mesh related complications voices heard too, the Medical World owe it to us all to have a full investigation considering they have not only changed our health but our quality of life.

Stay strong and believe in yourself my friends.

TVT Mum website is a voluntary non-profit organization run by volunteers. The volunteers who give their help and support are sufferers themselves and there will be days where they cannot answer emails, telephone calls as quickly as we would like too. Thank you for understanding.

You will see and hear from people who decided not to go ahead with surgery after reading our website. They have been saved from harm!

For more information on our petition please visit here www.tvt-messed-up-mesh.org.uk/petitions.html >>>

Navigation links within the TVT Mum website

Hidden Disability Chronic TVT/Mesh Implant Inflammation |
Articles, Urology/Urogynaecology Conferences and Research from around the World |
Articles and Letters by TVT Mum

British Medical Journal | Dispatches Channel 4 Documentary 'The truth about going under the knife'

Advice and Help Guide on TVT, TVT-Secur,TVT-O and TOT Tape/Mesh Medical Devices | Alernative Treatments for Stress Urinary Incontinence (SUI) and Prolapse (POP) | Men's Health | Mesh Related Complications | Mesh Unexplained Symptoms | Mesh Surgery Experiences | Mesh Removal Stories | Synthetic Mesh Other Nasty Products | TVT, TVT-Secur, TVT-O and TOT, Medical Devices | TransObturator Tape (TvT-O and TOT) Medical Devices | TVT Medical Terminology

Medicine and Healthcare Products Regulatory Agency (MHRA) | Worldwide Medical Device Incident Reporting
TVT Mum Volunteers | The History of TVT MUM| Latest News |
Frequently Asked Questions | Press and Media | Testimonials |
Privacy and Data Protection | Terms and Conditions | Website Map | Links

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