People's thoughts on our work
We get a lot of emails and telephone calls every single week from people who show an interest in our work, we thought it a good idea to share some of the comments we receive. Please scroll down the entire page to view.
Email received 7 April 2011
Hi, Congratulations on your website. It is very important that patients are made aware of all possible complications and risks that any surgical procedure would entail, hence the requirement from medical professionals to obtain informed consent from the patient prior to commencing surgey. I do feel however, the information on your web site is very one sided.
You highlight any negative exposure to the use of mesh but nothing on how the treatment has successfully helped millions of patients worldwide. These ladies who have been suffering for years, not leaving thehouse through fear of having an embarassing accident. After their procedure the majority of women have had their quality of life transformed for the better. It would be nice to see a less biased view. This way your valid points would have a bigger impact on those you need to persuade.
Name and address submitted.
Thank you for your email and for the congratulations, trust me I never wanted to do this website or have this in my life, but since I am suffering from mesh tape problems since 2005 and I have to add nearly died I feared there must be many people suffering like me and believe me I get many people contacting every single week for help, advice and support.
Unfortunately we are not told the full facts on mesh related complications at our consultations so it is not a fully informed choice, they do not even recommend other alternative treatments.
You mention I am one sided on my website, you are wrong to say this as I have a webpage for the MHRA and also I mention throughout my articles how the surgeons are trying to help us plus I have a webpage of recommended surgeons to treat us, I always communicate with sensitivity and very sympathetic to both sides. Considering thousands are suffering at this present time from mesh tapes there is a need for the truth.
Concerning the suffering from stress incontinence and other bladder and bowel disorders I am fully aware of this growing problem and I too want the best treatment, you are so wrong to assume this procedure with mesh tapes has transformed their lives for the better, did you know it is fact it will erode from day one up to seven years later?
Please visit the website and see the recent expert articles on mesh tapes uploaded on 5 April 2011 click here to view www.tvt-messed-up-mesh.org.uk/pdfs/polypropylene-is-not-inert-in-the-human-body.pdf, it is very important everyone reads it. Unless you can give me evidence there are millions cured and happy with this procedure I would be more than willing to open a new webpage, and I have to say not one person has come forward to me and said theirs has worked.
I do not need to persuade anyone, I have many people approaching me daily. We will never stop in our work and we will continue to have our voices heard.
Remember this quote - Do not confuse Medical Marketing with Science.
By Lorraine Evans
A Reply from a fellow sufferer from Mesh Tape
I would like to say this to you it is very important that patients are made aware of all possible complications and all possible treatments available on the market to them. Unfortunately all the women who contact TVT MUM were neither told of the complications or given the opportunity to know about or decide on any alternatives that may have been a better treatment for them. They were simply offered whatever treatment their surgeon premoted as the the only option available to them. This was not allowing the patient informed choice on both counts on complications or availability of treatments to them. We as sufferers are only too aware sadly, be it all too late for us that such operations as TVT are quicker and cheaper therefore cutting down on the expense hospital stay etc.
What a false economy they make as it must cost them millions in repeat and revision surgery. As any good surgeon will know the use of such medical devices depend on many RCT'S and in the the case of the TVT they have been few and certainly not long enough to ascertain and long term complications or difficulties, yes we are your walking guinea pigs!! I am also aware that women have presented with serious problems as long as 6/7yrs later after surgery.
How naive it is of you to assume that on a website to support the thousands of women suffering form the complications of this surgery that you would read anything positive about these devices because we are all suffering as a result of them and the NHS has provided nothing in the way of support for us ladies to cope with it.
Ironically there have been no positive approaches to the website from anyone anyway you are the one and only and I may also question your motives and perhaps your integrity if you continue to use these devices. Then I suppose you do not have to live with the life changing consequences do you. The MHRA are even holding numerous meetings regarding such devices a fact no doubt you will be aware of and time is running out as the momentum of women who realise what is going on start to come forward.
The valid points we make ,make more than enough impact and for your imformation they do not have to be persuaded because believe it or not they are all intelligent human beings who given the correct facts in the first place would have been able to make an informed choice.
Thank God for Lorraine Evans who without her us fellow sufferers would have nothing, no one and nothing in the way of support surely you do not begrudge us that?
You speak of the many successes well we must be just figments of the imagination then, non-exsistant, telling lies or going mad, none of these are the case.
I strongly recommend that before you sit proudly on your smugeness that you do some research yourself because maybe your successful recounts of surgery are about to bite you on the bum!!!
Name and address submitted with permission to publish.
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