Mesh Removal Blues

There are times when I wish I could reach out and give women a big hug. Today is one of those days. You see we are all so messed up from our mesh complications and sadly for many of us it has been years in the making. What is always so hard for me is the fact that so many more women are being injured from bladder sling mesh every day and yet many more are suffering from long term complications and have no clue. No one is minding the store and no matter how hard I try I cannot stop the flow of the tears and pain that medical mesh can cause. There are times I want to scream at the world “Wake up, this is happening all over the world and women are being made handicapped because of these products.” We seem to be ignored and lost in a quagmire of other world issues and no one is hearing our voices. That is not good enough!

Today I want to tell you about how it is to go through complete mesh removal with so much hope and then wake up with issues from the past and perhaps more due to the downhill of our immune systems. We all go through it. We have to hang in for so long just to get it out and the damage may be permanent. However, never give up! The body is amazing in how it can recover and a lot has to do with your mental state and how you tackle your life.

Please understand that what has been done to us cannot be undone instantly. The longer mesh is in the longer the recovery and YOU HAVE TO TAKE CONTROL to try to get well. Even if it has only been in you for a year, you will still need to take charge and do whatever you can to help yourself because no one else will do it for you or for me.

Recovery is a process. We all know about the baby blues and accept that the body has to come back after childbirth. For some women it takes a lot more time and help. WE ARE ALL DIFFERENT. Doctors however do not view us that way so we have to do things we may never otherwise think of. THINK OUTSIDE THE BOX.

There are no guarantees with mesh removal. No one not even God can guarantee you will be well again. BUT if you give up and give in to accepting you will never get well then you won’t get well. It really is that simple.

FIRST HAVE A DAM GOOD CRY! It’s okay to feel that emotion. THEN GET BLOODY ANGRY! It’s okay to feel that too. We are human. THEN GET BUSY AND DO SOMETHING TO HELP YOU. We have been duped, lied to and ignored. But regardless of what has happened to us, we have to get up and fight. Not immediately. You have to get well slowly. When family or friends say to you stupid things like “I thought you should be up and running now it is out of you” get bloody mad! They have no clue what it is like to be ripped apart in their organs and if they don’t get it, scream until they do. Don’t hide from it. Don’t cower in the corner and let them get away with this. They need to be educated too.

What you have had is major surgery of the worse kind. Mesh has been ripped from every part of your internal organs and has been untangled from muscles and nerves. It is a HELL surgery and they NEED TO KNOW your suffering. You won’t bounce back in a week and be normal like they think you should be. It will take months and maybe longer!

So look at your situation and try to figure out what you can do. For me it was the fact that I would rather spend all the money I can muster on supplements and things that could help me improve and I have written many blog about this fact. I have lived through other bad times and got through them with this kind of thinking.

Your immune system has been sorely attacked and if you have taken many antibiotics you have to fight a good fight with out of box thinking. Start reading. Start learning. Get up and make a change whether it be before or after removal surgery. In the past I won the war on what has happened to me and now I do the same. Your immune system will need rebooting. Try something new. Here are some links for you to start a new education.

Have you thought about something like Rei-Shi mushrooms? When I was very ill four years ago from an allergic reaction to a prescription drug I did exactly that.
http://www.naturalnews.com/021498_reishi_mushrooms.html

If you decide to take this, take this product too. http://www.umm.edu/altmed/articles/astragalus-000223.htm

Now start your own learning process. These things may sound weird but they have been using them for centuries in other countries and they do work. DO WHATEVER YOU CAN TO HELP YOUR BODY HEAL. I took both of these for a year after I was ill from that drug. I don’t care what you do, but do something to give yourself a fighting chance at a new life. Not the old you, but the new you. You deserve it!

I know I cannot give you a hug on your bad day, so this is my virtual hug. Information!

10 Comments

  1. Leslie

    Linda,
    Has anyone else thought about starting a petition on We The People? I think it takes about 25,000 signatures to get a response from the whitehouse. It is something to think about. I think we could get 25,000 signatures very easily, which is very sad, but an unfortunate reality.
    I relate to your post because I am recovering from Mesh removal surgery and it was the most painful surgery I have ever experienced. The hardest part about this travesty is that no one understands what we are suffering. I have also had to explain why I am not bouncing back from surgery. I really think that if men were the ones being castrated and raped, the news media would be all over this medical criminality. Because that is what this is. Washington is advocating using human beings as guinea pigs by turning a blind eye, all in the name of profits. I am sending out hugs and understanding to all the women, men and children that suffer from this mesh mess!

    Reply
  2. nadineb

    I believe the thought of petitions has been thought of and possibly done with no help as far as I know because the final say is in the FDA 501K loop hole letting these products in just for the simple fact that some other defective product simaluar to the new was there before. This is the reason we suffer, why so many defective things get put inside us and estroy us inside and out and our entire family lives. I have written for Linda many times been postted here and written about but now I must mostly remain enonomous and i did not have a hystorectumy but a rectocyl and cystocyl and TVT mesh sling inserted where my bucher left in my IUD which I now have found to also be a defective device due to my law help. I must be careful what I say from here on out on the enternet but all I can say is this is the first day of a new year! We must fight with tears anger hope and belief that one day we all will recieve the help we need and those that have caused us sooooo much injustice will too pay for what has happened. I know bills are out to be votted on and doctor conventventions to stop the butchery the only problem is that Mesh slings are still thought of as a Gold Standard and 100% safe, or so my doctor still sells me every time i see him. Just have fith be angery if you must scream cry and have hope that one day we will all get the help we need. Miricals do happen with the help of God. I know some of us do not believe but I have seen him in the eyes of my son the first and every time since that I look into his eyes even though I only see him once a week. Febuary is apon me and then hopefully with the help and knowladge I have things will get better even if my health fails each day and every week I recieve more bad news. I have faith in the fact that others are out there like me and we all will get the help and justice we deserve even if it will take long to recieve never give up!!!! I won’t neither should any of you and i have had more unjustices done to my body heart soul and life in a small matter of 6 months at age 31 and now 32. Believe or take mine and i give you my hope and my love and my joy for a new and better year!!!!!!

    Reply
    1. lavalinda

      Only speaking out about the horrific reselts of these surgeries will make a dent in this issue. It is HELL for women like you and will be hell for many more. Someone must say enough is enough, but who? That is the question that has not been answered.

      Reply
    2. christina

      thankyou so much .this welled me up thankyou ..im due surgery 27th august ,so idont know what to expect.imgoing to see miss elneil 30th june.then 15th august pre op.then 27th to have it out.idont know what to expect or how they remove it .do they cut you open .idont know yet.im scared but with everyone here im sure god will help me through it ..i hope you are feeling much better .keep us updated .and yes with being on so many antibiotics my immune system needs help..can you please update on what you take ..thankyou so much .iknow this monster mesh has to be removed .love to all ..thankyou hugsxxxx

      Reply
      1. lavalinda

        Christina here are some blogs that will help you understand what I do to help myself. This blog is a general run of supplements. http://teapapers.com/bladdersling/2012/09/mesh-my-wellness-plan/ These have been very important for me to stay well and not have infections. http://teapapers.com/bladdersling/2013/05/mesh-my-triple-three/ If you have any heart issues check this out. http://teapapers.com/bladdersling/2013/04/the-importance-of-magnesium-potassium/ This one will help you understand what can happen without probiotics http://teapapers.com/bladdersling/2012/11/mesh-surgery-yeast-infections/ I know you can buy this in the UK but probably only on line, but this stuff is fantastic for spraying incisions or sore and damaged tissues after surgery. I still use it. http://teapapers.com/bladdersling/2012/11/mesh-surgery-yeast-infections/

        Reply
  3. Leslie

    Thanks for the responses. I just thought a petition started on the much promoted Whitehouse feedback website might serve as a kick in the pants to the people in charge. Did anyone notice that Warren Buffett sold most of his stocks earlier this year in Johnson&Johnson? He reportedly said that J&J had messed up. He really should have said “Meshed up”! http://www.philly.com/philly/blogs/phillypharma/Warren-Buffett-Johnson–Johnson-messed-up-in-a-lot-of-ways.html

    I got on the “We the People” site myself and tried to see if there were any petitions in ref to mesh but I could not find any. It will probably take a famous person with the same affliction to promote our cause. It is such an embarrassing topic and that is why most women are afraid to share. I know I do not share my experience as openly as I should because I fear labeling and just don’t like people picturing my trauma. Somebody came up with a great moneymaking idea by promoting this mesh to solve an embarrassing affliction, (shared by most women who have had kids) and then they are able to continue selling it because we women are too embarrassed to talk about it and describe what it has done to our bodies. Nobody understands but us.
    I try to keep a positive attitude but it is difficult some days because I just get so tired of being sick and having to rely on others all the time. I have become a burden to be around because of a wretched piece of plastic. 🙁

    Reply
  4. lavalinda

    You have to stop thinking you are a burden to others. They love you dearly and do not want to see you sad, angry and in pain. I have plastered web sites, talk show hosts and I wrote to the Presidents wife. No one cared. I never stop trying but I do get tired of all the responsibility. Famous people do not want to talk about such an embarrassing subject any more than most women. It takes courage to speak out and wisdom to know if we don’t more women will be injured. That is why I keep writing.

    Reply
  5. Robin Robbins

    Hi, Linda, I needed to read this because I am in the DAMN angry stage now at my PERSONAL family physician and SO tired of reaching someone who will look into this or that and never getting back to me. I’m RR the mesh sufferer who went to CA twice with my husband driving and had my entire mesh removed after having one for almost 12yrs! I had tried a “loosening” of it one year later by a different doctor, Nazi torture tests and an experimental operation that had NOTHING to do with the problem which was the MESH that had brought me the worst pain since childbirth, I could not sit down without feeling those pains. And at least with childbirth it IS over eventually! Dr. Raz was indeed a light from God showing me there was someone who FINALLY believed me after 12 yrs, several doctors and stupid plans and of course some who thought I made it all up.

    So as the story in this blog 12 yrs of Mesh Hell-Now a Beacon of Light tells my story-ONE day in 2001 during an operation for another procedure by my gynecologist for an entirely different thing!, the urologist was just supposed to “stand by” if he was needed and decided to put the GOD AWFUL mesh sling in me that from that day one disabled me more and more. I had to retire from teaching after almost 20yrs, during the next 12 yrs I saw Doctors who tried to loosen it after the torture treatments of the first, but then I had to take guardianship of my elderly parents with my husband;s help for 5 and 6yrs. Neither of my sibling’s would, only griped at me having to be the one to go through when neither of them went to court!

    After my Mom passed in 2008 and Dad who lived with us and had Alzheimer;s died in 2009, I decided to look back to see if ANY solution had been found. The stress of caring for my parents, having to retire, getting my pension and then the long process of getting disability who I would recommend for ANYONE. I had an attorney who was A. a woman! B, had a nursing background, C. was very experienced in getting disability approved once a person was turned down. They told me in the office the first time I would be turned down and to hire a lawyer, the man said that 99% of people who applied were turned down the first time. That was back in the days before applying online. And lawyers for that do NOT charge until you get disability.
    So I contacted my old PT who was very knowledgeable in women’s pelvic issues and suggested another Dr. to me who was familiar with Pudendal Neuralgia which is what I had but was CAUSED by the sling strangling or putting pressure on that nerve from day one. That doctor gave me shots in the hospital into my Pudendal nerves on 3 occasions, each made it numb about an hour. He then said “WELL that proves you have Pudendal Neuralgia NOW! you need to go to a Dr. I know who operated on your back and releases or severs the Pudendal nerves and others to your bladder. There is a 60% chance it will work and it takes TWO YRS to find out because nerves take that long to heal! EVERYTHING in me said NO and I told him I would get back with him. I have a cousin in the same town as this Dr. who has a Daughter who is a nurse and found he had MIXED reviews. So after the last FDA report that NOW included MY sling I got 12 yrs ago (One yr before it was approved by FDA) i went to the Dr. again and asked if the Dr. he wanted to send me to would LOOK at my sling. He was mad and said that my sling had been completely absorbed, that lawyers were making these up to scare woman etc. That it all was a lie and my ONLY choice was to go to the Dr. he was trained under. THIS time I listened to my intuition that told me 12yrs ago I really DIDN’T think much of the urologist OR his bedside manner and paid for it severely. So I just asked for my records and told him thanks for his services and left!

    THEN the Lord led me to LINDA and she led me to another lady having the same trouble & symptoms and having the same surgery on same day with Dr. Raz. Her family was SO KIND to offer my husband and I a place to park the RV we had bought for the 2nd ride for the operation from OK. It was like the Lord found a family for us who let us park our RV, lent us a car, PRAYED for us and their daughter and gave me more peace and serenity than I had had in years surrounded by her and her loving family.

    Dr. Raz the next week operated and said my operation took 2-3 times the regular amount for such an operation because of how long I had had the sling and ALL the growths and damage it made. HE removed my catheter the next week and said it was OK for me to go the long way home again. But after I had the operation I found I could immediately walk! I had lost the use of my right leg just the 6 months or so before the operation. The family we visited were thrilled to see the miracles, Dr. Raz was thrilled also. I had a growth on each side of my mesh, the one on the right side had started getting into the tendons and muscles of my right leg that last so many months. I feel since it had been affected the least amount of time I had indeed got there to save the use of that leg in the nick of time! I still had BAD spasms in that leg where the extensive growths were cuts out of the muscles and nerves on that side and on the other. The MESH itself, metal and all had became as thick as Dr. Razes little finger and had wrapped around and around my urethra like a snake. NO WONDER I COULD NOT SIT FROM DAY ONE!

    So when I got my catheter out he was showing what had happened to several other Doctors. He had originally told me on the pre-op visit when he put his hand on my arm and said YOU HAVE BEEN THROUGH TOO MUCH-TOO YOUNG-FOR TOO LONG AND MANY TIMES FOR UNNECESSARY THINGS! YOU WILL NEVER BE 100% BUT I CAN MAKE YOU BETTER! i CRIED AND CRIED TO FINALLY! HAVE SOMEONE KNOW WHAT WAS WRONG AND BELIEVE ME AND TRY WITH ALL HIS MIGHT TO UNDO 12YRS OF DAMAGE!
    .
    So I was prescribed pain pills for the long ride home, a slightly different dose of a slightly stronger pain pill like ones I had taken for yrs that the last two years the first two did NO GOOD 4 hrs apart and the last two helped 20-30% each time 4 hours apart. Then in the night if I woke up out of pills I could not sleep. Unfortunately that is what has happened tonight! WHY?because as soon as I got home and I ran a fever every single day the first 3 weeks and took 3 rounds of antibiotics, My personal DR I have had almost 30 yrs I gave the post op papers to, he glanced at them and put them in my file. I showed him what Dr. Raz had prescribed and told him my elation that those type of pills at that strength at this time of healing had allowed me to sit in a diner for the first time in YEARS on the way home, WALK some, sleep etc! My DR. looked at the RX and said You don’t need to take that kind and I Will NOT prescribe you that dose! You will become addicted! I said WHAT KIND OF ADDICT TAKES PILLS FOR SEVERAL YEARS TAKING THE 1ST ONE-NO DIFFERENCE-4HRS LATER-2ND ONE NO DIFFERENCE-4 HRS LATER 3RD PILL 20-30% HELP AND 4HOURS LATER TAKE THE LAST PILLS WITH THE SAME OUTCOME!? THERE IS A DIFFERENCE IN TOLERANCE AND ADDICTION! I HAVE ALWAYS TAKEN JUST WHAT YOU SAID WHEN YOU SAID FOR 12 YRS! I FINALLY talked him into letting me take the KIN DR. RAZ said after I had him READ the post op report before I talked to him because of course he HAD not read it and just said SO?He asked what good the trip had done if I was back and still in so much pain two months later!? I SAID I CAN WALK! AND WOULD DO IT ALL OVER FOR THAT! And told him those type pills were needed as said by Dr. Raz because they help more! but he still cut down the first time, this week I was due to get another script and asked the nurse if I had to pick up the paper script of see the Dr. She said on his notes it said CUT DOWN AGAIN! I would not have felt so adament if not able to do things I had not for YRS with the right script and right amount and have it yanked away after 2 weeks! I told my Dr. that my leg spasms have lessened, my fever happened only when I overdue it, and Dr. Raz emailed me twice telling me why I HAD TO HAVE THE right pain pill-right amount while healing and the healing of all the muscles and nerves that had been affected so many yrs WAS going to take longer than usual!

    But the Dr. here did not listen and Dr. Raz cannot prescribe out of state and said he is sorry about that being the situation. He ordered me to take a CT scan at the hospital here to see if the continued fevers were PERHAPS from a small remnant of infected material left in. (HE HAD REMOVED 3 vials-all came out benign THANK YOU LORD!) With the holidays I heard nothing though my Dr, and the hospital both said they would send a CD. I got my own having had bad experiences before and sent it about 1 1/2 weeks ago and KNOW they have received it now. I talked to someone in his office to see if he had read it last Thursday. They have still not contacted me.

    MEANWHILE because I had to go back to my Doctor this week for a refill he wanted to CUT DOWN again that I am barely making it with really having to watch what I do so I am not in too much pain to sleep etc., I took a friend of mine who is a RN and a long time friend of our family. She had visited since my Dad was still alive before 2009. She has saw how I became more and more bedridden. She and her family were SO excited to see me up and moving after being down for so long. SO SHE WENT WITH ME, let me say she is NOT one to mince words. When my DR. said I needed to cut down AGAIN! she spoke up and said DR. I am a friend and an RN I have seen your patient almost bedridden for 2-3 years, Not be able to walk for 6 months, WHY HAVE YOU GAVE HER PAIN MEDS FOR 12 yrs? and not tried to help her find an answer to the problem ever? NOW she finally found one OUT OF STATE and you are not going to back up the recommendations he told you.?
    But with my friend the RN she and the DR. WERE locking horns, at least he gave me the same meds and amount as last time. She told him before getting SO mad she had to go back to the waiting room MALE DOCTORS WILL NEVER UNDERSTAND BECAUSE THEY DO NOT HAVE THE SAME INSIDE PARTS AS WOMEN! (I myself always said if men had to see blood once a months as young women do they would go screaming down the street each month!)
    The only reason my husband was able to get him to write the first script of the correct medicine but at a reduced number was because my husband asked how he would like the equivalent of a mesh wrapped around a similar part of HIS body for 12 yrs?!

    I was a NERVOUS WRECK BECAUSE MANY TIMES I GET MAD AND CRY BUT DID NOT THIS TIME WITH THE HELP OF MY FRIEND THE NURSE BUT HAVE TO GO BACK AGAIN NEXT MONTH! She has a personal DR.she goes to who is NOT afraid to prescribe documented needed pain meds especially for people in their 40,s 50,s and up who probably really know what they are talking about and NEED them. I may have to change DR.s IT is a shame the Doctor I have gone to for almost 30 yrs with my children, my parents, my husband etc. and had helped many times, he used to as of last yr still had his PHONE number in the PHONE book! It is a shame I have to leave there to get the help I need but I am in a lot of pain still pelvic spasms wise, the leg spasms have improved some, the pelvic spasms have not and are as bad or worse than before when laying down. I am SLOWLY doing a little better sitting up for SHORT periods of times. I try to do something each day to regain some strength although there is NO RULE book! I thought I would try to drive part of the way when I went to the Dr. I had not drove in YEARS! Something my body told me I did TOO much of that night and today! With more pain and fever.

    Linda Please call me sometime to give me advice on what to do to see that Dr. Raz has got the CD he ordered, I have emailed him several times and called twice. I hate BUGGING him but NEED to know, so to know what step to take next and perhaps eliminate any possibilities that scan will show!

    I have not read every bit of the blog lately but will tell ANY WOMAN TO GET TO DR. RAZ WHO NEEDS TO!-ACT AS IF IT IS YOUR CHILD THAT IS GOING! YOU KNOW YOU WOULD FIND A WAY FOR YOUR CHILD TO GO GET SOMETHING DESPERATELY NEEDED DONE!-AND IF YOU KEEP PUTTING IT OFF YOU WILL BECOME MORE AND MORE UNAVAILABLE TO YOUR CHILD OR CHILDREN AND MAYBE EVEN WORSE!, WE HAVE STATISTICS PROVING IT UNFORTUNATELY! We sold a car and a house to have money to go. NOTHING is worth more than your health and Linda has resources to use. As soon as I got hold of her, my husband and I read what she said and others had said and we immediately put into action what we had to do, immediately had prayers going for us and went as soon as we could. In fact I made an appointment immediately after talking to Linda and a few others.l was at the point of doing ANYTHING and was so glad to have found her and even more assured after seeing DR. Raz and am SO glad I went with my instinct and research and DID not get my BACK CARVED ON!

    Hang in there everyone, Linda call when you can and I KNOW you have to keep taking time out for yourself to heal and are perhaps back at Raz again for a sling you had mentioned.. I too no too much about having something for YEARS no one understands, thinks you are nuts! you believe sometimes you are! and THEN people wandering why you are not to your old self. WE probably never will be 100% yet some act as if we had a tooth pulled! WE are pulling for you also. God Bless All! Thanks for listening, Reaching out and sharing my story helps me when I am depressed and reminds me of what I am lucky to have had happen so far this year! If I was never prescribed the correct pain pills at the correct amount as I was for two weeks I would not known it IS possible to get MORE help to make me feel MORE normal than I have in many many many yrs. Sometimes I wonder if that was a good or bad thing but then realize it was Dr. Raz who knew what to do not my Doctor here! AS USUAL! Then it was grabbed away and yes I got depressed. But feel for all of you, count my blessings especially my husband also who has his own health problems and has stuck with me these last HARD 12 yrs! We will remember all in our prayers! God Bless! RR

    Reply
    1. lavalinda

      Thank you R.R. I am now trying to get through to get an appointment for surgery at UCLA to have a sling made from my own fascia. (tissue) Without the women who come herre and leave there comments, a blog is just a one way book. The women who tell their stories through comments here bring this terrible book of injustice alive. There is hope but there is a wall of sadness because this is happening every day and going on forever. More and more women are being injured. And so few doctors who can help them.

      Reply
  6. nadine

    WOW! Robin thank you for sharing your story and the beginging is just like mine except I knew I would get this miraculous device that is permanent put inside me to solve the bladder prolapse and the incontinence. Btut the product for Gynocare is sold to you with a booklet that states some of the risks but not all and states that you should allways talk with your doctor to make sure your a right canadate for their products. Well guess what these doctor butchers don’t talk to you they give you papers to sign, tell you its a golden standard, its 100% safe, that its not the cause of your issues, and that more surgery to revise it will be the magic source to fix the pain and agony of the first that didnn’t work, my butcher decided two weeks later (and having done what he claims to be only 15 including mine removals_ to do a removal maing it 3 surgeries in 5 weeks leaving me with permanant damage to my bladder that will never heal, pelvic muscle myalgia which squeezes my uteres and vagin and bladder so tight each time my bladder fills and streches because it no longer sends signals to my brain or can squeeze out urine, rhat its a struggle of muscles and a ballon that deflates and inflates causing not only my body to go haywire but to also cause further nerve damage to bladder signals and our two most important nerves down there.
    I am now 32 and have won one small victory by getting a letter stating from SSDI that i am severly disabled which is good but now I have to meet non-medical requirements as well. But your story scares me. 12 Years is a long time and though i only have about 4 to 6 cm left inside me no one can find it but i know where a few pieces may be and all this happened within a matter of 5 weeks. So that goes to show how horrific these things are how dangerous and how unstable to have a sling erode and snake into parts of a younge abody so fasts. I don’t want to live with it in me for 12 years before i get it out or have someone finally say its mesh because i too get turned down by doctor after doctor, was told I am addicted and a drug addict by a court system who has taken my three year old when I took my meds as said and with no affect. After a while tolerance to any medicine is a fact and so too is it with pain meds. But no one cares for our hurts they to me are all meshers for my new urogynocologist had the same pampllet the doctor gave me before surgery.
    No one speeks out mostly due to law cases others are too shy yet others are too afraid or embarassed but trust me when its over everyone will hear my voice! I have not just lost my life at 32 now as I knew it but lost my son for who knows how long because of stereo typing due to a long ago past that is long gone and over with, i have lost everything and each day week second my body dies from within and i just wish to get my child back before it happens and than you can all tell my story LOUDLY and so will I.

    Reply

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