Taking a Break from Mesh

I have known for awhile that the stories I listen to day in and day out about women who have been injured by mesh, have haunted me.  Terrible stories of lives cut short of women of all ages.  I have been contacted by women who have huge complications from mesh, from ages 21 years to 90 years.  I have spent over two years learning and gathering information to help myself and other women to get through these complications.  But the stories never stop and I am losing hope.

When I faced that reality this morning I knew I had to stop.  I tried to change things by cutting it down.  I tried to speak less hours on the phone to these women, but none of it has worked.  It has taken over my life and over my mind.  I hate the word MESH!  I hate hearing it, seeing it and reading it.  And yet mesh is still in my body hurting me every day.

I knew this morning I had to make a full stop change so that over the next few months I can change the four letter word ‘mesh’ in my head into another four letter word.  Hope!  This can’t be done while I listen to more terrible and terrifying stories of mesh injuries.  The change has to come from me.

I tell women all the time that there comes a time in your life when you have to put yourself first.  Not your partner, your children and not your grandchildren.  You!  As I have spoken these words over the phone, the words come right back at me.  I have to do the same.  This means taking a break from all that is hurting me in both my mind and my body.  I have to change my thinking to prepare for my own upcoming removal surgery.  I can’t do this if I do not have hope.

There is still others out there who are trying to change things and are helping women through this terrible tragedy.  I am going to put this information here so that you can contact them yourself.  But it does not matter how much information you receive, phone calls by others to help you, you are the only one who can help yourself.  You have to find a way to travel to a surgeon who can remove the mesh successfully. If this means you cutting off the help line to others while you find your own version of hope, then do it.  People will only love you, if you love yourself first.  If they don’t then this means they never loved you anyway.  Sad I know.  But I have faced this before and got through it.  You can too.

The following is the name and information of a doctor that women who are in this predicament feel is the best surgeon in the world.  There are others I am sure, but this is the surgeon I have chosen to give me hope. There is also a link to a couple who are working on setting up a nonprofit organization to help women in the future.  All this takes time, so please do not expect miracles.

First, I have written many blogs to help you.  The information was gathered from other women who are going through what you are going through and from my own efforts to try to stay well enough until I could get help.  Take from them what you wish and do what you like.  This is your life we are talking about, not mine.

If you do not know what to ask of any doctor/surgeon before you have mesh removal, these are questions that could help you.  http://meshangels.com/2012/02/questions-to-ask-before-mesh-removal/  Print these out and take them to ask your doctor what you need to know about your complications and his skills.

This blog is about a test that can detect where your mesh is.  Dr Raz of UCLA designed how to read this test to help find what is happening to women before surgery.  He will answer any questions from your doctor and help them use it.  http://meshangels.com/2012/02/mesh-complication-education/

If you are having serious yeast infections because you are taking antibiotics due to constant infections, I wrote this blog  http://meshangels.com/2012/05/bladder-slings-uti-infections/

If you decide to go to a doctor who your insurance will not pay for, learn more what to do here.  http://meshangels.com/2012/03/mesh-your-insurance/

Please tell women to read this BEFORE they have a hysterectomy.  I wrote this blog for the Hers Foundation because they did not know what was happening to women.  http://meshangels.com/2012/04/221/

A couple who knows what mesh can do to women have started a new organization http://www.tvtno.org   You can email them here.  info@tvtno.org

By writing this blog over more than eighteen months, other women have helped me with what happened to them and how they coped.  While they shared, I learned.  I will be forever grateful. The one thing I learned is that there is a really good surgeon in this country and I will be travelling from Texas to California on June 4th and have my first consulting appointment with him on June 5th.  This is his information.  Please understand that this man is swamped with mesh removal surgeries.  When you call the new patient number, be nice and be patient.

Dr. Shlomo Raz  ………………………new patient hotline  310-794-7700.  UCLA Medical Center Urology.  200 Ucla Medical Plaza Suite 140 Los Angeles, CA, 90095

So now I will switch my mind for awhile to find my own hope.  I hope you will find yours.  I plan to share that hope with you some day when my mind is ready.

28 Comments

  1. Kathleen

    EXCELLENT! This is all the information a women needs to start the journey of gettng help. Know that you have given all the tools to empower women no matter what Doctor they choose. It really is about making sure your understand details and options. Sacrifice and patience can make it happen. This is NOT a time not to ask for help from people in your life. Everyone needs help sometimes!

    We have come full circle on this learning journey. So much more to learn I am sure but now it is time for you to take a break for real. I am so happy you have made this decision. You need to put you first now just like you tell the other women! 🙂 Soon you will be on your mesh removal journey.

    Reply
  2. lavalinda

    Thank you so much. I can’t wait to be free of the stangling mesh inside me.

    Reply
  3. Nonie Wideman

    It’s high time sweety to look after you ! You have done so much, and provided the resources for women to be able to advocate for themselves and find specialists! You can lead a horse to water but you can’t make it drink….you my dear have provided the water. you are wise to take your own advice and there enough of us , thanks to you and the other pioneers of anti-mesh advocation, to carry on with the help with moral support and resource location. Take care of yourself, de-stress and prepare for your own explant surgery. there are not enough thank you’s we can say to you. Will enjoy your non-mesh postings! love from Nonie

    Reply
  4. Kathy

    Blessings, prayers and peace on your healing journey! Your on your way to being free of this nightmare, hopefully I’ll be traveling from tx to Cali soon! When your strong and healthy, let us know how that feels
    <3

    Reply
    1. lavalinda

      Thanks and I will. It takes us down so much and I hope I will be able to walk like a normal person again without living in pain.

      Reply
  5. DIANNE IN FLORIDA

    There isn’t enough words for the support and knowledgement you have gave to me about the bladder sling mesh. You are in my prayers and keep a positive attitude of being able to walk like a normal person, again without living in pain. You have chosen the MOST knowledgable DOCTOR IN THE WORLD, to do your operation. I am also looking forward to my appointment with him. IT IS LINDA TIME NOW !!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You have lead us through a journey of MEDICAL KNOWLEDGE that now we have to choose our own desting with this Bladder Sling Mesh.

    Reply
    1. lavalinda

      Thank you. I fly for my first appointment tomorrow and will see him Tuesday. I will write a blog about this experience late this week. Another lady I sent had her first appointment last Wednesday and they are now scheduling removals September which I fully expected.

      Reply
  6. Kathy

    Can’t wait to read about your experience Linda, I see dr raz august 1st. Will be driving, but at least im getting there.

    Hoping your getting some rest, that’s a long trip.

    Reply
  7. DIANNE IN FLORIDA

    Hope Doctor visit went well for you. Looking forward to hear about it. My and other peoples prayers are with you.

    Dianne

    Reply
  8. Gloria in Florida

    I am very proud of you for coming to this difficult decision. We are so angry that we were suffered such torturous pain and were violated, that we want to scream from the mountaintops to save others. However, it consumes our life and weighs us down even further. Your torch will never go out; as you will always be there for those, you pass by. You did a great job and now it is time for you to get well, emotionally, as well as physically. This decision took you one notch higher on the survivor ladder. For anyone considering surgery with mesh as a solution…. don’t!!!

    Reply
  9. Sherry

    Sherry from Wsconsin and Desperate

    Hopefully someone know of a Dr in my area to have my Mesh removed. Problem is I also have incontinence which was suppose to be taken care during surgery back in march 2010. The Doctor I saw is from Froedert Hospital in Milwaukee, Wisconsin. He thinks if it’s removed it will take of the incontinence issue but I had this problem before surgery, so how can this possibly be resolved. So now I’ll go back to wetting when I cough,sneeze and urgency on top of everything else. Does it Make any sense? I really need some advise.

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  10. Robin Robbins

    Hi This is Robin the person who;s had a sling for 11yrs and am leaving this Friday night for long drive to UCLA with my husband driving and me laying on mattress in back of van. I will see Dr RAZ. for exam on June 26th and probably won’t get in for months either thus a long drive back to OK and then another long one to there again for surgery. I am SO thankful Linda led me to an answer I feel has been provided by the Lord after 11years of CONSTANT CHRONIC PAIN like childbirth pain at the pushing stage when sitting,worse leaking which is continuance and having to retire at age 42 from teaching after 20yrs. I am now mostly BED BOUND.
    Just this last couple of months the damage has spread to my upper thigh through the sciatic nerve which Drs. here think if I get the sling out will perhaps lift pressure off my Pudendal Nerve which has been entrapped for 11yrs and is affecting sciatic nerve. Otherwise it could become permanent also! LORD I do NOT WANT to lose the ability to walk also! But with 11yrs I too don’t know outcome as all of us don’t but even 25-50% improvement would be success for me.

    PLEASE read my entry under Mesh Destroys Lives. Yes, I had a little incontinence before surgery but they were just supposed to do a rectocele and cystocele repair-knew nothing about what a sling was or how it would be put in or that it would be put in ONE year before ANY were approved by FDA. But I CAN tell you the incontinence would be NOTHING to put up after Chronic Labor like pains anytime I sit, my sling now trying to come out and the horror stories and DEATHS I have read about about these slings. PLUS I MISS greatly not being able to drive, have a full relationship with my husband who REALLY HAS TO LOVE these last 11 yrs which has diminished to ZERO in any physical way and am now mostly bed bound and hurting in bed now even~!

    I missed my son’s wedding last year because the sitting in the car to a town about 30 miles away and then sitting at the wedding and sitting back would have put me down for weeks and he did not want me to do it and understood. I also missed my youngest granddaughter;s first birthday a month ago that my husband did go to -those things are priceless.

    But I was able to persuade two women to NOT get surgery,one only 2 days before she was to get one and she is in her 70’s and this was last month. They are still doing them! This poor lady had lost her husband last year, had knee replacement and now they were going to do this. THANK GOD she had courage to cancel and said she would rather wear Depends rest of life than go through what she has seen me AND my family go through 11yrs when I told her ALL slings are BAD. But i told her of alternatives which are below.!!!!!!!!!

    There ARE alternatives to slings to help INCONTINENCE-PLEASE believe me. i was lucky enough to find one of the few practicing Physical therapists in the U.S. who is training others now and is also a professor at a medical college who has known me all these years. IF I had saw her first there are MANY ways to help you improve your pelvic area,strengthen muscles and help incontinence. PLUS my sister in law who chose not to get surgery has used a PESSARY-a latex type device that she can insert herself and remove herself. She said it works GREAT! But back in 2001 when I asked about one my Dr. told me they were just for old ladies in Nursing homes! BROTHER! I can tell you that is NOT true. Too bad more doctors do not mention these alternatives and still do these STUPID SLINGS. The lot number manufacturer etc of mine was put on FDA report in JULY 2011 almost 11 yrs after I had it put in and wish I could turn back time!

    I can tell you the name of the leading Physical Therapist for pelvic problems in the United States who is in my state and then when hopefully you can get your sling out (which is a crime they are still doing them)-you can contact me through this blog and i will give you my contact info and then contact info for the greatest Physical Therapist )in my opinion) who is a Woman for Women;s problems in the pelvic area,. She does manipulation, treatments etc inside and outside your body and believe me she KNOWS what she is doing.. Has done if for many years, she is the one who gave me name of my 2nd doctor in 2002 who knew my sling was put in too tight and tried to loosen it but at that time didn’t know he should have taken it OUT!

    Then many years later O found her again and she referred me to a specialist when I inquired with and he officially diagnosed me with Pudendal Neuralgia (entrapment of my Pudendal nerve from the sling) but his option for surgery to my SPINE did Not appeal to me as much as getting this darn thing OUT! But at least he gave it an official name and told me i was not crazy for the 1st time in 10 years!

    I won’t be back from CA for at least a week and then probably hurt even worse ( when I never think it is possible) so perhaps after the 4th of July you can inquire again if you want info from me, Best of luck and ihope you get doctor who gets sling out successfully thank the Lord because you would NOT want it left in! God Bless,

    Yours Truly, Robin an 11YEAR Victim of a bladder sling

    P.S. LINDA IF YOU CAN AT ALL-PLEASE CALL ME IN THE NEXT DAY OR TWO ABOUT QUESTIONS I HAVE ABOUT MY TRIP AND Dr, Raz I am excited (except for LONG ride) but have some questions and general anxieties as you can imagine!-your phone call would mean SO MUCH TO ME IF YOU at ALL feel like it before FRIDAY! BLESS YOU! ROBIN ROBBINS

    Reply
  11. Robin Robbins

    HI EVERYONE-Thanks for all the good wishes and prayers. My husband drove me to Dr. Raz from Oklahoma last weekend. We got home late Friday night after a nearly 3000 mile round trip to California in our van. I was laying on an air mattress he had a “bed” made for so I would be at window level. We are both still recovering from the long drive. My husband could only drive about 500 miles a day because of his physical problems which include a fused neck, shoulder surgery,tendentious in his arms, and two ruptured discs in his lower back he has had for almost 30yrs. So it was like the blind leading the blind but we got there!
    It was CERTAINLY worth it, Dr. Raz is the FIRST Doctor and surgeon to make sense in 11yrs. He looked at my chart and asked the intern in the hall, why did they do that? and that? and that? (because I had had MANY stupid doctors!) He came in and said I had suffered too long and was too young to have so much done to me wrong that caused over a decade of pain and problems.He said mine was an EXTREME case.
    He said my PELVICOL sling made by Bard indeed was like a mesh one because they put other materials in it beside the “pork’ products that DO NOT absorb into the body.. Plus the screws and anchors etc. in my Pelvic bones were probably infected as they often are in the bones and the ONLY answer was to remove the whole sling hardware and all. I agreed 1000% with him, since the day I got my sling in 2001 I have hurt and leaked continuously only to get even worse this last year with a rusty discharge which he said is probably from the sling trying to come out. This last year in addition to never being able to sit I also can never get comfortable laying down and just the last month or so my Sciatic nerve has been affected by the crazy nerves affected in my Pudendal nerve and who knows what else. It has caused my upper right leg to have stabbing pains that wake me at night along with the leaking and pelvic pain.
    He said I probably won’t be 100% again but that I WOULD see improvements. I said I would be thrilled with 25-50% improvement and he said that was VERY likely and he will know more once he gets in there for surgery. I had hoped perhaps to get in before October but was glad to just get a date, if they had gone by how long a person had had a sling I might have been at the front of the line! ha! But after over 11yrs I know I can wait until October 18th and now have REAL hope. He was a VERY kind doctor who really sympathized with all I had gone through. I took my medical surgery history-medication list and operative reports from all the operations I have had. They helped him to see the things that were done, many just unneeded torture tests for no reason but the original Doctor wishing he could blame it on something else! I truly feel prayers and God have led me to Linda and this site and cannot thank her and everyone else enough! I see a Shining light at the end of the of a Long Long Tunnel now. I will keep you guys updated-wish and pray for all that have suffered and that they find answers also. Trying to spread the word as much as I can and tell women to ALWAYS trust their women’s intuition and never be made to feel like an “emotional” female by a MALE doctor with an Ego! Thanks and God Bless.Robin Robbins 11yr victim of a bladder sling.

    Reply
    1. lavalinda

      Thank you for leaving other women this hope on our July 4th Holiday. The word freedom means far more to all mesh complication women who want the freedom of not having this product left in our bodies, and this day stands for just that. Many have asked me about you and they offer both their prayers and their love. All will be waiting to see how both you and I do after our removal sugeries. With that much support and caring how could anything bad happen to either of us. It is a long road for recovery but your great attitude gets you partway there. We will stay in touch and we will see each other through that next stage to a better life. Not perfect because non of us will ever be perfect after this, but better. I wish you joy and happiness and of course my love.

      Reply
    2. Kim

      Robin,

      It is wonderful that you have finally found someone to listen..to understand. Didn’t you just love that moment when you felt like you and an actual member of the medical community connected. That y’all clicked and you were like..oh my he gets this. I did not go to Raz but when I went for my consult and the Dr pretty much said what I had been saying my emotions were that of joy, excitement, fear, depression and anger. While I have not suffered 11 years it was 7 years this past Januraury so I understand your frustration. I am just as happy that I have met Linda as well as others along this journey as I hate I had to meet them under these circumstances I do feel I have made some lifelong friends. Please have Linda give you my email address so we can keep in touch. You are on your way now. You are in my prayers.

      Reply
  12. Katrina

    From the bottom of my heart, thank you to all who wrote. The wealth of information you have provided is so comforting to me. I am traveling from Virginia to UCLA Medical Center to have all of my mesh removed by Dr. Raz on July 16, 2012. Just one week from today. Sure, I am scared, but I know that I am in the very best of hands.

    After my initial consult last month with Dr. Raz, and the many others involved in my care that day, I literally broke down and cried (my husband cried too). Finally, someone understands, cares and believes all that I have been through since my mesh was placed in 2005. Dr. Raz is the kindest, most compassionate and intelligent Doctor I have ever met.

    Best of luck to all of you. You are in my thoughts and prayers.

    Reply
    1. lavalinda

      This is why we are here. We are all angry and tired of what is happening to women and the only way we can deal with it is to help others. We are all so grateful to Dr Raz. Without him, many would die. Thank you for leaving your lovely comment.

      Reply
  13. Robin Robbins

    Thanks to all the supporters I have heard about on here and from Linda. Thanks so much for listening to me share, I just wanted you folks to know I appreciate your prayers and support.
    LOVE and BLESSINGS, ROBIN

    Reply
  14. Debbie

    Linda, kudos on your trip. I know you will be fabulous after surgery! For those people with constant UTIs and on antibotics, probotics should be help. It restores the normal gut flora the anitbotics kill. Previous to the sling, I always had problems taking antibotics. I’d get a yeast infection and diahrea by day 3. My Ent would prescribe lactobacillus. However, probotics are much better because they contain other forms of your normal flora. However, the most important thing to remember, probiotics must remain cold or the flora dies. Never buy anyone that is over the counter. The lactobacillus never helped because he would write a prescription (you don’t need a prescription), and the drugstore would give it to me in a warm bottle. If you are taking antibotics, you don’t want to take both at one. The probiotic will limit the effectiveness of the antibotic. I have been forgetting to take it. I ran out, and I didn’t feel well enough to go to Whole Foods to pick some up. I take blueberry. Taste pretty good. My stomach has been swollen like a bowling ball. It is difficult to find close. I have to go up a size. And I am taking Santura for the frequency and urgency. Likewise, I may be beginning perimenopause. So, I use premarin which I know is going to just give me another problem and lidocaine. I go every 3 to 4 weeks to get trigger point injections in my vaginal vault. She uses lidocaine, novacaine, and kenolog (cortisone). Not sure spelled correctly. Had 4 sets. The first 3 made me feel almost human again. This time, it hasn’t worked. Went to a pain management doc and he put me on vicodin. He told me to have that thing removed.

    He doesn’t do it, but some pain management doctors do pedundle nerve blocks. You need to find a doctor that is extremely skilled. The 2 pain management doctors around here don’t do those.

    And for the lady who was worried about becoming incontinent again, she can have a burch bladder sling. I am told it uses your own tissue. I don’t know more than that.

    My urogynecologist doesn’t believe this is my sling. She said my pain is not in the area of my sling. I have ureathral pain and my pain did not start until 6 months after my surgery. But my cervix prolapsed and my vaginal vault. I was find before the surgery.

    I have a suggestion. I can’t remember the medical journal I read this in, but they did a double blind study. Strangers were given the pictures of a sick person, another group just a name of a sick person, and another group told just to pray. Both groups of ill people got better. People praying were of different religions and said whatever prayer they wanted. They were just told to pray for the person. I propose we all pray for each other at 9:00 central every night. We have everything to gain. Unity, hope, and spiritual help! Maybe it’s not practical, but I don’t think we have anything to lose. I’m going to start tonight!

    Reply
    1. cathy

      me too!!!!!

      Reply
  15. maria a castillo

    Hi Linda: how are you, my prays for are bak? wish to talk to you I had gone truth so many appointments, examns, blader cattetering, sistitis, infections, antibiotic, suffer, etc. and the Urologist said that my problen is that i retain urine in the bladder because the mesh left it too up (sorry for my english) my bigest problem is that have no money and only medicaid because after that i had the mesh i never got any insurance had no job because my last 8 years had been with infections, treatments and pains. my mesh is of Johnson and Johnson, I paid to the doctor with my money because by the time the insurance company did not accept to pay for it, the Doctor do not have insurance, whom do you recomend to claim J&J.
    Thanks for helping so many people God Bless tiy

    Reply
    1. lavalinda

      I am so sorry. I too paid cash for all mine, then ran out of everything. I waited over 2 years for Medicare to start so that I could go for surgery. If you read up on my blogs I say who by and when I will have removal in October. If you have medicaid you can get some help with someone who reads and writes English so that you completely understand everything. If you can get disability you can go to Dr Raz in California. I understand about money, but other women have done fund raisers to raise the travel expences. I will contact you direct.

      Reply
  16. Lynn

    Hi-I am inquiring in regard to those of you who have visited Dr.Raz-My husband and I decided to do whatever we needed to raise the funds to travel to UCLA from Florida;,post scheduling a confirmed appt (I received the confirmation packet in mail) we bought the flight tickets, which were very $$ flying out of our region…then I received a call informing me that he has now made a descision to leave the country for the week I bought the tickets for…so weagain had to raise funds to re-purchase yet another pair of tickets for the updated appt…I suppose I am curious if this is typical or just a rare occassion? We are very concerned because it took us A LOT of planning along with funds for the first appt (my mother made arrangements to fly in from PA to care for our animals while we were away, husband with work, raising funds etc)and now we had to re-do everything again and basically eat the cost of the first pair of tickets(I didnt buy refundable bc it was 2000 extra-the change fee adds up to 300 plus airfare has gone up, so we went with an entirely different airline-the tickets are approx 1000 from where I live)..We chose to make this trip and do what is needed to get there in hope that he can help me…but Im very concerned that he may cancel again..I suppose Im just not off to a good feeling with the way things started…

    Reply
    1. lavalinda

      I have never heard of this happening to any woman but if you call the airline they may transfer the funds. I doubt if this is anything to do with Dr Raz, but perhaps it is in the office. I am sorry this happened but of all the women I have sent to him I can tell you it has not happened before.

      Reply
  17. Sherri

    Hi, I’m so thankful for you telling your story! I’ve made my appointment to see Dr. Raz this Dec. ’14. I’m running into some possible problems with my insurance since I live out of state. Would you be able to explain how you used your insurance? I can understand using the partial coverage, or paying cash. I’m trying to get approval like I normally would because Dr. Raz seems to be the only MD with the Translabial Ultrasound equipment. I think of this as a bonus but know that the “insurance Beast” has a mind all of it’s own. I’m certain that Dr. Raz helps in any way that he can to make this easy for us. I’m trying to understand as much as I can before I go. You have helpped me in that area so much and I’m so grateful for your kindness. I started with incontinance issues and have now ended up with both that and a prolaspe issue. I’ve waited a while to fix my problems and am looking forward to putting this behind me. Thank you for your reply in advance!!

    Reply
    1. lavalinda

      Many women had to fight their insurance company Sherri and they won because not only does UCLA have the best tests but also the best doctors. You just have to stand your ground and appeal. I had Medicare and bought a good supplement that I know UCLA takes. United Healthcare.

      Reply
  18. Suzanna Lafont

    Hi Lavalinda…. no need to spill my long story onto this page when it seems to be right in line with bits of pieces of these countless stories that has been posted before today, April 22, 2015.

    Simple question: Is Dr. Raz still up and running because I plan to make that phone call soon.

    Can you advise,

    Reply
    1. lavalinda

      Suzanna yes he is, going as strong as ever.

      Reply

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