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TVT mesh nightmare
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TVT mesh nightmare

How is the best way to find a surgeon who is a uro gynaecologist who has lots of experience in removing TVT tapes.
My nightmare began in 2004 when tape put it.    Immediate problems with pain, infections and tape erosion through the vaginal wall - surgeon kept telling me things would settle down but he 'guessed' I might be allergic to it.
My first experience was HELL - pain and nobody listening to me.  I woke up from the op with incredible pain in my left buttock which was and has been ignored ever since. - oh, sorry it must be nerve damage - 4 years on I still cannot sit down comfortably without 4inch thick cushions!    Pain in my groin, inside my thighs and under my buttocks still.

Second opinion sought - this surgeon says you cannot be allergic to it.  He said my infections were caused by eroded tape which he removed from the vagina as well as a small section of the tape under the urethra.   That was in 2005.

3 years on, I still have all the pain from sitting, pain either side of my pubic bone and a permanent itch inside my vulva area and the pain under my bottocks is still as bad despite being on amitryptylene.    

I know that one day I am going to have to be brave enough to have this tape removed.  I KNOW I AM ALLERGIC TO IT, IT DOES NOT WANT TO BE IN MY BODY.

I have found websites  medical mesh yahoo which has so many postings of similar problems and worse.   This mesh moves inside you, cuts flesh and tries to get out!     I know this operation has been successful for lots of people but there are also lots of people having adverse reactions.     I also know a lady who is having surgery at the moment, her tvt tape eroded into her bladder 5 years after surgery and she is really suffering.

I am so frightened of further surgery making things even worse.     How can I find the best surgeon who has experience of removing TVT tapes - where can I go for help.    My GP looks at me as if she does not understand, which of course she doesn;t, no one can  unless they have this thing inside them in the most delicate part of a womans body.    If feels like a tight, rough elastic band wrapped round the eurethra which pulls my flesh in two directions every time I sit down.


If you can help with any of my problems I would be eternally grateful.

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6 Comments Post a Comment
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599170_tn?1300977493
Hi, first let me expresse how sorry I am for what your going though, Secondly let me tell you , I believe you. Very very long story short I just went through something kida similar took me 3 years to get a dr to believe me finally resulted in surgery and I am healing ( involve neck problems)
It bothers me immensely when drs dont really listen or believe their patients, They are bombarded with so many pill seakers it seems to dull their ability to sometimes realise people are actually telling the truth.

You sound quite intelligent n it seems you are very informed on the tape allergy issue. you know the answer you must have it removed. There is no other choice.Your right anything the body does not want in it , the body will work to reject in what ever way possible,

I have another thougth for you something thats just jumping out at me from your post about the pain and not being able to sit properly. It may indeed have been caused from prior surgery. I think your needing to see a neurologist to get a work up and maybe hopefully get some help, It really sounds like it could possibly be treated maybe with cortisterodi shots or other options, i would investigate it though, sure would not hurt.

As far as finding the best surgeon. I have always believed in word of mouth from patients. If you should ask other doctors they usually recommend their buddies. Ask around every where you socialise, be it church, neighboorhood ladies etc,

If I can help in any other way do please let me know, please try a neruo consult,

Cherie
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Avatar_f_tn
I am a research assistant helping a journalist investigate the issue of bad outcomes after treatments/surgeries like yours. We'd like to hear what happened. If you're willing to talk, please email me at ***@****.
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Avatar_m_tn
I'm sorry you're having such trouble too.  I had the TVT put in and now I am self-cathing after many trips to the Doc's office and ER.  I have 4 little kids, am 42, and considering having it cut...I can't go on much longer.
Did you have your tape cut?  How did it go?
Did your surgeon recommend loosening it, or just cutting?
This is so frustrating!
Thanks.
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Avatar_f_tn
Hi,
I am also in the UK, I had a TVT in 2004 and in 2006 I started to get infections down below, I didn't connect it to the TVT tape, but things got worse, next I couldn't travel on a plane for longer than two hours, then in 2008 I couldn't have sex anymore I seemed to have a painful blockage. All this time I was going back to G P,s and seeing gynecoligists who looked vacant at me, I felt like I was going mad, its only been recently because I started to use a computer that I have realised its this tape. I feel so angry. I have been unable to sit down now since spring, I can't wear underwear either. I know there are surgeons in America who can remove some of this tape, no-one I have seen here have been any use. I would appreciate a recomendation of a surgeon in the U.K. If you could help, I can tell you who I have been to up to now. Thanks.
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2075601_tn?1331765674
please i need some advice please. i have pain down below, i had a all my women parts taking out.  everything out, 5 years ago it seem to never heal right, i went to hospital because of it they said its in my head no way, they send me home with 13 bottles of pills. pain meds. and more its crazzy, one is duiaudid so i went back to the hospital i had my sergery (surgery) done, the sergent would not touch me cause he dont want to be alible for law sute. thats crazzy i was so mad and up set. they are giving me strong zanax. i have never took all this mecine before. and this pain is so bad. the buring , it feels like something pulling down below. i n0o something is wrong for sure. i just wish and pray i can get help fast. i pray with my hole heart someone helps me cause i can not keep going like this no more. over a mouth is to long with this kind of pain. my name is christine longcor my number 973 670 1051
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Avatar_f_tn
Same exact problems, minus anyone beliving me and giving me meds eaglewomen. Im sorry, I know how painful it is, I have been crying all day, it's unbearable and no DR believes me.
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st. louis, MO