Patient-Safety-Learning

The comments below were all shared by members of Sling the Mesh in response to a call for the worst things that have been said to patients on their mesh journey. If you have had mesh surgery, please add your accounts of interactions with doctors and other healthcare professionals in this thread. Transvaginal mesh Hubby said "It’s really painful for her when we have sex." Dr replied, "Have you tried anal?" and then winked at my hubby. I thought my husband was going to punch the surgeon. My surgeon emailed me to attend mental well being therapy classes, as in ‘it was mind over matter’, for my pain and agony that I was suffering 12 weeks after insertion! You can only imagine my reply to her 😡 …10 weeks later she discovered under another general anaesthetic that the Mesh had cut right through my bladder! "You will have to learn to live with the pain… Drs are not miracle workers." Mine said, "l don't know why women over 50 want to have sex anyway!" Top urogynaecologist: "don’t worry you don’t have cancer" patting my knee. Surgeon said no way is it the mesh you are reading to much crap on the internet, it’s working that’s all you need to know. For a whole year, I was told by my implanting surgeon that the razor blade/ hot knife feeling cutting into me was all in my head… his registrar discovered that the mesh was cutting into my vaginal wall. When I questioned about the "tape " I was told it was not mesh & don't believe everything you read in Newspapers . Also my pain was in my head! It’s your menopause not the mesh 😡 “I just don’t understand why you have all this pain, Anatomically you look beautiful” followed by a laugh!! Mine told me I probably need hip replacements. Surgeon punctured my intestine during mesh surgery and said “well it’s probably good that happened because it caused you to rest in a bed for a month.” Uh… a hospital bed in which I almost died because he refused to admit he did anything wrong. My family had to demand an independent team come in and evaluate me… I would have been dead within hours if they hadn’t. I was SO relieved to find Sling The Mesh support group after hearing about it on the news (after the Cumberlege review) I wouldn't wish this sh*t on my worst enemy but I was SO glad to discover I wasn't going mad, its not all in my head, I wasn't the only person with complications. That evening I cried hard! Such a relief and source of support 🥰 What am I moaning about, your husband should be very pleased! I’m the only one to ever have anything wrong, it must be my body not the mesh! Your like a 21 year old down there now! Where would I start 🤔so many gems to choose from! .. one of my faves is.. "DO YOU HAVE ANY OTHER MENTAL ILLNESSES??" My surgeon told me that it definitely won't be the mesh that's causing my problems. I have learned since that he has received 6 figure sums from the mesh manufacturers for promoting it! I had a “specialist” that actually said to me “ look shit happens ..and it happened to you.” Don't be silly mesh doesn't cause leg pain. I have had 2 partial removals, drag my leg around daily, hip wear and tear, urine infections, have had E/coli infections in mesh with 7 times daily antibiotics. "It's all in your mind, maybe you need to speak to someone. " Yes a lawyer you fool. My surgeon said my mesh would last about ten years I asked what do we do then , he said we will worry about that when the time comes ! My urologist told me to stop looking at Sling the Mesh on Facebook 😂😂😂😂 and to believe the professionals!!! I stood up and walked out before I did him damage!!!😂 My surgeon said Chin up and have a glass of Prosecco. I was told "Surely it's a good thing when sex hurts a bit" After telling him for five years my new urinary issues were due to the mesh, I eventually got it removed due to erosion, but at my follow up being angry at not being listened to, he suggested I had PTSD and got referred to the psychiatric team! That is an insult to the poor people who do have it , I don’t I just had anger and vented it! One of the doctors at my surgery said “your to complicated, I cannot help you. Book another appointment to see somebody else” I was told that my GP practice could not help me as my problems are too complex. Looking at me, he said "I just don't understand how you could be in pain, I will refer you to a Psychiatrist". To my partner, he said "I've made her nice and tight for you". It’s your weight try exercise, when u can’t even walk. I asked my surgeon, is there a good mesh and bad mesh! He said there is NO bad mesh! Mine told me it was all in my head! That maybe I had a low pain threshold. My gynaecologist said stop 🛑 listening to the hype !!!!! 😡 Mine said, "You’re too fat for your hips." Has this all been brought on by the Mesh nonsense in the media!!! The first doctor suggested my problems were I needed more foreplay or a lubricant during sex after I said my husband feels something sharp when inside me!!! My original TVT had 'slipped'. My gynae surgeon said he would do a TVTO, a pelvic floor repair and a posterior pro-lift. At no point was the word mesh used and in my ignorance I thought he knew best, how gullible was I? It is in your head by so many over the years that you feel you are going mad 😡 as you know the pain your in. All in my head and then your too complex you must be imagining things you can’t be in that much pain. Your back has nothing to do with your vagina so how can your back pain be linked (female consultant). I have TOT mesh implant. Suffer with groin infection and fistula. After I had infection drained (unsuccessfully) I was seen by the gynaecologist, I mentioned that the infections were the mesh incisions in my groin ... he told me not to be silly .. that mesh is in the vagina not in the groin area .. he obviously only knew about tvt mesh not TOT.. I told him to go away and do some research... I didn't see him again!!!! I got told it’s not the mesh it’s were it should be and doing it’s job 😡. Also got told to stop looking and reading stuff in mesh groups as everything isn’t true 🤬 My surgeon said "Oh, so you are jumping on the Mesh bandwagon?" When I mentioned mesh because of my endless infections to yet another doctor at my previous surgery he said ‘as long as you’re nice, we look after people who are nice’. I was so taken aback I just couldn’t even answer- I’ve never been anything but nice through many surgeries and issues. I was told -“Nothing more we can do for you so will discharge you” Worst one was sent for testing STDs When we told my surgeon I could no longer have sex because it was too painful he said I had a duty to my husband so I should just put up with it. My husband was furious he said do you really think I could enjoy sex knowing my wife is in pain. My surgeon told me he had only one women with mesh had problems and she was "neurotic"... Surgeon Quote “you can’t be in that much pain its a standard operation ?” Surgeon Quote “ It must be sciatic pain, I’ll get an orthopaedic doctor to look at you and send you home!” Another mesh specialist “it’s blue and it’s eroded but majority of women are fine I don’t understand why you can’t walk anymore your infections and blood in urine must be due to a bladder infection!” Diagnosis in 2018 Mesh cut through obturator nerve, put in to lateral too tight, too much pressure on urethra and permanent pain and damage. I was treated in a very misogynistic way even though I have my husband present. Just ignored every time I mention it, no matter who it is. “You are an awkward patient…” "‘You're to old to have pain there." "It can't be the mesh causing you pain, I've inserted lots of these and your the only one who has complained!!" (2017) mesh inserted 2014. “You can’t believe what you hear in the news about other people having mesh problems, after all, I am the trained consultant…” 😥🤦‍♀️ It’s just the menopause, you will get used to it. “Your mesh is the gold standard, it is the old mesh that causes problems.“ “Your mesh just needs time to seed itself in.” “ I don’t know why you can’t have a sex life, there is enough room for a penis.” My implanting surgeon's response to my second visit following tvt implant was to take a cursory look in my vagina and pronounce all was fine. I have learned this response is common amongst patients who've had mesh complications. By this time I was peeing to the left and pooing to the right like some sort of sick trick. I likened it to turning up at A and E with a broken arm and the doctor not ordering an X ray. I later learned the mesh and resultant scar tissue had pulled my organs this way and that. I've just undergone my fifth and hopefully final operation to remove excessive scar tissue, small fragments of mesh after two full removals and perineum reconstruction. Surgeon suggested I see a shrink because he thought it was all in my head. “Go home and try to relax more” 😲 Neurologist -if you go see enough doctors you will eventually hear what you want to hear. There are so many shockers, but the worst has to be, "Prescription pads are expensive and patients like you are not worth the cost of a prescription" "It's all in your head nothing has snapped or eroded, you have to be patient with the incontinence settling down." GP listened to me telling her the unbearable vaginal pain I was going through feeling like glass cutting into me. She looked at me and said, "But why are you here today?" The cost of your catheters is too expensive for the NHS, we would like you to change to washable catheters 😲 It's all in your mind, you need anti depressants, and motivate yourself. A urologist that I had sought help from privately having walked out/discharged myself from care of implanting surgeon, "I sit on a board looking at mesh but I personally don’t believe any of this stuff you read on the internet . Mesh cannot cause such problems.“ “You must just have been coincidentally prone to interstitial cystitis and retention” Eye rolled as she said, “You shouldnt believe everything you read on the internet. Mesh is perfectly safe…” "This is a gold standard operation, it will be life changing." Well yeah, it was life changing but not in a good way. When I told the specialist how painful it was when my husband tried to put his penis in to have sex, he said , "Is he putting it in right?" We'd been married 36 years. I was told to massage it better My implanting surgeon said she "fixes up other surgeons mistakes" after putting mine in too tight and having to loosen it a year later. Mine told me I had a "good quality of life. Just to go home and get on with it." Surgeon said my operation was Tape is like a FREE TUMMY TUCK…” My favourite, "it’s your body that’s at fault!!!" “It can’t possibly hurt every time you urinate, that's an exaggeration surely.” Mine said, “Off the record, if you complain about this no-one will want to work on you in the future” Surgeon said, "If the mesh is still in place its doing its job" 🤬 I only brought it up to my surgeon once. He told me “not to believe I’m everything in the papers. Some women are just after a payout.” Surgeon said, “In 12 years I have never had anyone else complain so it cant be the mesh.” Blatant lie in 2016 as another patient at end of communication tether was busy putting warning flyers in his waiting room. Said in an abrupt tone, ”I doubt the pain is from the mesh it all stories from media and internet.” “You have been reading too much on the internet.” Well yes I have because from 3 days after the operation when I said something was horribly wrong you were telling me to go away and heal or that it could not possibly be the tape… thank goodness I googled TVT pain or I would never have found this group and thousands experiencing similar pain and disgusting treatment like me. Implanting surgeon “you’ll learn to live with it!” Consultant: "I've been to a conference and told some of colleagues about some of your problems and they said poor you, we're glad she's not our patient." "There's nothing there, it's not mesh!" Saw somebody else who could feel the mesh hanging out straight away. 😥 "It’s not mesh it can’t do this you’re wrong it’s your hip, go away and lose weight and exercise." Female GP after I’d read medical documents saying it can 😡 I was told I was having surgery with a dissolving hammock and medical records show no mention of MESH. "Oh it's you again!! I told you before it's not the TVT. You must be lonely or looking for attention." 😡 Surgeon said to stop listening to group (Scottish Mesh Survivors) as he was the expert with experience not a group of people who knew nothing!!! I asked why I was in so much pain and was told it was because I wasn't in a sexual relationship! "This has only ever happened to you. .... your body is to blame." Before I had my surgery (vaginal hysterectomy with anterior & posterior repair), the surgeon said he would sew me up "nice & tight" and actually winked at my husband!! Well, we haven't been able to have intercourse for 10 years since my op, despite physio, hormonal lubrication etc and I'm now on a waiting list (5 yrs so far) to see a sexual psychologist, cos it's all in my head of course. I ask him if the mesh he used was the same one they talked about on the tv program. He said no so I got him to write it down. When I got home I checked and it was the same polypropylene.. It’s got nothing to do with the mesh the pain is in your head 😡 My surgeons exact words to me, thankfully my husband was present... "I’m sick of all these women jumping on the mesh bandwagon. My surgery was a success. Your bowel is perfect. But if you think the mesh is to tight, I’ll open you up, detach the mesh from your spine, let it drop & put another piece of mesh over the top & reattach to your spine. You’ll be my first but I’ll give it a go!" Just to add, since removal of mesh I’m 80+% improved & my quality of life is really good. I was told I was one of the unlucky ones. He told me I needed to stop running all over the country trying to find a Dr who could help me even though He had not help me in five years. There is no cause for your pelvic pain! A pessary will fix you! Maybe stop going on social media! I’ve had a lot of problems since my removal of a TVT last August with extremely limited after care and no follow up appointments what so ever. When I did eventually get a telephone appointment I got upset because of the amount of issues I’ve had with no one to turn to for any help. Her reply was, "well you were warned that you could end up worse than before if YOU chose to go ahead with having it removed." My reply, "Yes I knew there was a risk of even more issues, as if I wasn’t having enough already… but what however was not explained was that there would be absolutely zero help with those issues if they did occur, no one to contact or answers to emails and voice mail messages…" She went very quiet after that. I was trying to find out if mesh had been used in my op & the surgeon said, "People see one Victoria Derbyshire program and panic." My female implanting surgeon told me she’d never had any problems with any other patients. She then told me it was a skin problem and gave me some cream then discharged me. She’d already discharged me and I asked my GP to go back and see her. My female GP kept telling me it was the healing process and to give it time. After months and months of me going back with pain and UTIs she started to get really sharp with me so I stopped going. Rectopexy mesh My surgeon said when I said my vagina was very tight and painful for intercourse that his wife would love an excuse like that not to bother. I got no referral elsewhere to investigate. Had no physical relationship for 11 years. Mine laughed in my face saying, "Don't be stupid I've done over 280 rectopexy surgeries and never once had a problem. This isn't mesh related." "If I take some of this out, you will HAVE to have a colostomy bag for life." No choice given. My implanting surgeon referred me to his colleague who was a pain specialist... the pain specialist said, "Its your periods you need to go into medical menopause." I was around 36 at the time. I was told it wasn't the mesh that was causing problems and to take ownership of situation. Mesh all removed now left with permanent stoma 😫😡 When I called my bowel specialist in agony and in desperate need of help. "Aww hun I wish i could just give you a hug." My GP said, "Some pain is unexplainable, you just have to live with it." 😡 Bowel specialist said you need rectopexy repair and don’t believe the hype about mesh. They said smoking was good for you in WW2... WHEN I QUESTIONED THE CHOICE OF MESH Hernia mesh On the day of my operation, the general surgeon didn’t want to do the removal, he denied my Physiomesh had been recalled in May 2016. I had to show the link on the government site, so my plastic surgeon believed my symptoms could be related to the mesh and agreed the operation was necessary. Mine told me these groups were filling our heads with rubbish. They are full of hysterical men and women. Was told I was the only one with these issues, never had issues like this before. Told me it was all in my head. Told mesh can't cause all of these symptoms. The groups have been the biggest support to me. I finally felt normal as in I wasn't alone. This wasn't in my head. It was a sigh of relief to find the groups. A hospital consultant said, "Hernia mesh can't cause these problems." (inflammation, autoimmune, joint pain, muscle pain, allergies, Lichen Sclerosis, etc.) "You're getting confused with vaginal mesh". "If hernia mesh were a problem, I would've heard about it and I've not seen one single case in my entire career... don't you think I would've heard if there were problems?" After I persisted in telling him the scale of the problem he then raised his voice and said, "You'll never prove it." And that spoke volumes! I guess he is still staying he has never heard of a single case. He also told me to stop believing what I read on the internet. “It’s not THIS mesh that’s on the news. THIS is a great product.” (The very next year THIS mesh was recalled).