Mesh is a Journey

My daily emails are filled with women who have somehow navigated the world of Google to find this blog. For the first time in perhaps many years they at last have hope because of what they read. Many have followed this blog throughout my journey dealing with mesh. I have shared even my most delicate and embarrassing details to help women understand the pitfalls and fears of dealing with getting mesh out of their bodies. I did it for a reason. When I began my own journey, the path was unlit. As I wrote, women offered me a few guiding lights and I began taking steps to a better future.

It took quite some time before I could begin the removal process as I waited for Medicare and my sixty-fifth birthday. In the meantime I shared other women’s pain and stories. In turn, women left comments here that made this blog real. They made the journey and agony of mesh real. I am forever grateful that they do this because it helps other women begin the removal journey for themselves. It is because of them that even more women begin their journeys to a better life.

Women have amazed me. Many have lived in pain for so many years and their bodies have almost given up. But their brains are telling them don’t! They hold on because of children, their faith or just the will to live. Their tenacity and strength comes from a greater source than me.

I write as I listen to women over the phone give me wonderful stories of women helping women. Last night I took a call from a woman who is about to take the first step of her journey to wellness. She is boarding a plane from her State to Los Angeles for a consult appointment with Dr. Raz today. She called me to share her anxiety and I did nothing but give her hope and a simple message. She is doing something to help herself before she can no longer work and lose her insurance. She knew that of course, but she just wanted to hear my voice and she felt calm again. Then she shared another part of her journey. She told me she works at a school and when they heard about her story, two teachers gave her money to help with the first stage of her journey. That is the gift of women helping women.

I’ve heard many stories before of small church congregations doing benefits to raise money to help a woman get out to UCLA. All it took was for women to stopping hiding behind pride and shame. You have nothing to be ashamed of. By speaking out you will help many other women who have had so many issues since a mesh implant. But they, like thousands of others are told it is not the mesh. The saddest part of this is that women’s journeys should not be fraught with anxiety and pain. Doctors should admit that it could be the mesh, so that women do not go down into a life of illness and despair like the woman whose email I posted yesterday.

She needed help a long time ago and yet she is now so seriously ill, she will die without the proper care and help she needs. Not just trips to Emergency rooms, but the information given freely by doctors that although they cannot remove all the mesh and there are a few doctors who can. If that happened there would be fewer women who are begging for mercy and death as this woman has done.

This blog is written to provide many links to other blogs I have written that will take you to doctors and my own journey through the mesh darkness. Your journey will be different than mine. However, there will be many similarities. I hope these blogs will shed some light and will help you through your fears and give you a light of hope.

Each has a description of what the blogs have in the way of help. Don’t just sit back and give your power away. You can help yourself by boosting your immune system or keep it from leaving you without any defense against infection. You must stay as well as long as possible so that you can begin a new journey.

I call this part of my journey Chapter One.

The doctors of UCLA.
Please watch the video and learn more about the kind of doctors you are dealing with and their expertise. http://meshangels.com/2012/08/so-much-hope-for-mesh-removal-surgery

I know the facilities where some women had their mesh implant surgery closed down and some women wonder about how long medical records should be kept. If anyone has any kind of implant in your body, you may want to get the records from your hospital with name and number and store them with your other important papers.  Many implants get recalled, sometimes years after they are implanted and your family may wonder what they can do to help you.  It is best to have this knowledge for peace of mind.  http://teapapers.com/bladdersling/2013/03/medical-records-law

Another good surgeon. A few days ago I wrote about another doctor who can do mesh removals. This doctor made it easy when he answered questions in writing for me to share with you. This made him a man of good character in both mine and many other women’s eyes.
http://meshangels.com/2013/02/conversation-with-dr-twiss

My consult appointment. I shared many of the costs involved and some of the things you will encounter when going to UCLA. The top question I am asked over the phone is “I am worried about getting out there and no one believes me. Do you think he/she will?” Yes they will and you should stop worrying. It truly is the least of your worries.
http://meshangels.com/2012/06/mesh-dr-raz-u-c-l-a/

Tips about going to UCLA. Other wonderful women made the trips before me and shared tips that could help you. http://meshangels.com/2012/09/mesh-going-to-ucla/

Things to take with you for surgery. Once again, experiences of others play a large role in sharing. http://meshangels.com/2012/10/things-to-take-with-you-for-your-mesh-removal-surgery/

Tests before surgery. Many women worry about what will happen the day before surgery. I wrote my account of what the tests involve. http://meshangels.com/2012/10/ucla-tests-before-mesh-removal-surgery/

About the translabial ultrasound. When I wrote this blog I had not had the test done, but I wanted to share as much as I had learned from other women. The ladies of Canada took the bull by the horns and asked Dr. Raz about this test. They want help for women in their country who also suffer. You can read Dr. Raz reply to their questions here.

http://meshangels.com/2012/09/mesh-removal-the-translabial-ultrasound/
My surgery. One of the hardest things to do is write when you are still recovering from surgery AND answering so many emails from women suffering. However, I knew it was so important that women know I made it through. http://meshangels.com/2012/10/ucla-my-bladder-sling-removal-surgery/

Travelling home after surgery. Flying out to UCLA is a huge and difficult decision for us all. However another big fear we all have to face is flying home after surgery. I encountered things I never thought of before embarking on this journey and I shared them with you. My aim is to make your journey easier and with little stress as possible.  http://meshangels.com/2012/10/mesh-removal-ucla-travelling-home/

Stop worrying about incontinence after mesh removal, it may never happen! I wrote this blog because countless women tell me their biggest fear is incontinence after surgery. No one can guarantee that won’t happen, but all I can share with you is this. By not having the mesh removed, you could wind up in the shape that the woman who who managed enough strength to send me an email yesterday. Read the post before this one. My aim is that women get the help they need before they are close to dying.

http://meshangels.com/2012/10/mesh-removal-incontinence/
It takes time to heal and sometimes you will feel very down after surgery. Expectations are high when we finally have the mesh removed. First by ourselves because we are sick of being sick. Then by family, friends and acquaintances who have no idea that removal is MAJOR surgery and it takes time to recover. Not only that, but many of us will still deal with major issues because of mesh, even after removal. No one has a magic wand. Mesh is the terrible gift that keeps on giving. However, the fewer partial removals you have, otherwise called revisions by some doctors, the less scar tissue you will have along with many new complications. The truth is we do the best with what we have. None of it is pretty.

http://meshangels.com/2012/12/mesh-removal-blues
You have got to stay well while you wait for surgery. This blog will give you ideas and help with infections that do not respond to continuous use of antibiotics and other supplements you can take to stay on the path of wellness. It is all about self help. http://meshangels.com/2012/09/mesh-my-wellness-plan
Beware of vitamin D deficiency. Believe me I learn from the many women who contact me and I found out about this problem because of them. http://meshangels.com/2013/02/running-a-mesh-marathon

You can pay cash for surgeryhttp://meshangels.com/2013/03/paying-cash-for-surgery

Money issues. I know you think you cannot make the journey because you don’t have any money. But….People will help you if you ask. If you have fought the battle and now have Medicaid, you can go out to a surgeon at UCLA and they will take your Medicaid card. You will have to pay for expenses and consult, but others will help you if you swallow your pride and ask. http://meshangels.com/2012/11/mesh-removal-no-money

Report your sling to the FDA. I left this link until last and yet it is probably the most important thing you can do. Like everything else on this journey, it is fraught with complications. But… This is your vote to stop this from happening to other women. So when you feel well enough, take the information about your mesh, one, two or three types and report each one to let them know what has happened to you. It is the least we can do for others.
http://meshangels.com/2011/01/report-to-the-fda

Soon I will begin what I call ‘chapter two’ of my journey. In April this year I will go back to UCLA and have a sling made from my own tissue to help me with the severe incontinence I now have. Just like you, I have my fears and I have to conquer those fears. Last month I took the first step and made the appointment for surgery. By the time I have this surgery; I will be six months from my mesh removal surgery. Dr. Raz did tell me I could have the surgery three or four months after the removal, but I deliberately wanted to give my body more time to heal. I have had to be patient before while I waited to have the mesh removed and I wanted to give myself the best chance at getting well. Now I will take it one day at a time and I will write about this surgery after I am recovered enough to do so. Not because I have a great desire to share my most intimate details with the world, but because I know it will help others.

In two days it will be Valentine Day. I am a widow and my love is gone. But, I send out to the world my love and my wishes that you will soon embark on a journey for a better life. XOXO With Love.

When I was out there last time for surgery I wrote this blog about food.  http://meshangels.com/2013/06/ucla-food

Update.  For new information click here.  http://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/

18 Comments

  1. Dawn brown

    Happy Valentines Day to one of our biggest HEARTS !! Thank you for all you have done and continue to do. May GOD bless you and hold a very special place for you when your day comes to meet Him and be with the love of your life <3 I don't know what I would have done without your thoughtful words of wisdom Linda…

    Reply
  2. Cynthia

    I underwent a complete Hysterectomy done vaginally in February of 09. A Gynecare Secure System (TVT-O) was put in. Prior to this surgery, The reason for this surgery was uterin prolapse. I was 56 years old at the time, and had no history of any bowel nor urinary issues. Not the case anymore. I have not been the same since. I had problems ever since the surgery. When I came out of the OR from the surgery, I felt like I had been hit by a cement mixer. I was told that it was probably the postitioning I was in during surgery, and they gave me more Morphine. The pain in my lower back and hips never went away. I was then told it was probably Osteo Artheritis, given Celebrex and told to get more exercise. In July of 09, two days after I was in to see my Doctor, I was out walking my dog, when my left leg gave out. I broke both ankles, one needing surgery where a metal plate and several screws were put in. No one could figure out why this happened. I was sent to a Neurologist who did an EMG, but, still no real diagnosis for why the leg gave out, and still does. I now have to walk with a cane and sometimes a walker. I have constant pain to my lower back, hips and down my legs.
    The OB/GYN who did the surgery is no longer practices OB/GYN, and no longer in the State I live in. I have been in to see two Gynos, both of which refuse to admit the TVT-O is the problem. They only tell me the mesh is soft and palpable, but the prolapse is back. One told me I was “Screwed due to the mesh” and wanted to schedule surgery the next week, where he claimed he could remove all of the TVT-O. Thank God for the research I had done online, where I had read the horror stories of other poor women who had been talked into surgery. When I made a return visit to see this Gyno, he admitted that he could not get it all out, and then refused to operate on me. Not that I would have allowed him to. I went to Mayo/Rochester and saw a Dr. Elliott. He told me he could do the surgery to repair my prolapse and remove “part” of the TVT/O. I have insurance which would cover Mayo, as they are in network. But, the amount of money I would have to spend on lodging while recovery would be impossible.
    So, here I sit, not knowing where to go and what to do. Constantly sick, in pain, depressed and afraid. I am in Wisconsin, where there does not seem to be any reputable Doctors who might know what they are doing. I have lost faith in the medical profession here.
    Any info would be appreciated, as I do not know what to do,
    Cynthia

    Reply
    1. lavalinda

      I sent you links and a link to a support group and I hope someone will help you raise money to go out to UCLA. Removing part of the mesh proabably won’t help you for long or not at all. Then you will need to raise more money to go out there, so as hard as it is, it is better to go the first time. This link will take you to many links so that you understand the journey it takes to remove mesh and how important it is to go to the right doctor. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply
  3. Tracey Neubaum

    Is it still true that UCLA is the only place that there is a qualified doctor who can totally remove the mesh? I am going to go to my regular family physician again tomorrow and show him this article and the fact that the translabial ultrasound is the only test that can detect the mesh and see what it is doing. With this not being something that people in this area seem to know anything about, (NW Indiana) will they be able to read the ultrasound to determine what the mesh is doing? My doctor sent me for a regular ultrasound and nothing was detected. I guess that means that the mesh hasn’t eroded into the vaginal wall but of course with this not being the correct test, it really hasn’t determined much more. As I said, it isn’t my doctors fault, he is a general physician and hasn’t dealt with anything like this before. I didn’t want to go back to the doctor who put the mesh in because at this point, I don’t know who to trust. In my reading, it was stated somewhere that there is a doctor in WI who removes the entire implanted sling. I’m not sure which site I found this information but have you heard anything about him. I have been doing a lot of research on this issue and yours is a wonderful site. If you could please write me at my email address to in fact tell me if the ultrasound will be able to be read by someone who has never done this type of test for this condition, I would certainly appreciate it. They will be scheduling the test soon because this is what I am going to tell my doctor tomorrow. I appreciate your site and all that you are doing to help the many who are suffering. I wish that I had never had this done!

    Reply
    1. Angels123

      Tracey…most of us wish we had never had this done Nd some of us were conned into doing it twice! What my question to you is …what would you do with the information even if..which there probably isn’t…there is a competent…competent and experienced doctor who knows how to read that ultrasound? Your doc sounds like one of the good guys…but his specialty isn’t pelvic reconstruction like Dr. Raz’s is. You will need someone very competent in both the removal of the sling and reconstructing things. Your everyday run of the mill ob-gyn will not be able to fix this properly. Their training in surgery is very limited. I think in my experience that is why most don’t want to take the slings out..because then they will be responsible for the reconstruction too. Just because nothing showed on a regular ultrasound does not mean there is no erosion. To tell whether it has eroded through the wall a cystogram must be performed. It is a camera that goes inside the bladder to see if there is a problem from the inside out. Even then nothing is certain till a competent and experienced doc gets to physically look at it during surgery. Your general practitioner can only get you so far and then you will need a super specialist..someone who spends every day removing slings. Do you really want to risk having more problems by going to someone who you aren’t certain can do the job? That is a question only you can answer. By the time I was where you are I had had enough and it was a no brainier. I wanted the best or no one because truthfully if you let the wrong doctor try to remove and they aren’t equipped to handle your case you can have worse problems than you do now. Just do your due diligence and don’t react based on geography…make sure you are choosing your next doctor for the right reasons! Good Luck to you!

      Reply
  4. DebCNY

    Hi, Linda K has been out of town. I think some of the info you are looking for can be found at:

    http://teapapers.com/bladdersling/2012/09/mesh-removal-the-translabial-ultrasound/

    Most doctors will not do a full removal. Please ask questions at your appointment:
    http://teapapers.com/bladdersling/2012/02/questions-to-ask-before-mesh-removal/
    and, this is also helpful:
    http://teapapers.com/bladdersling/2012/12/the-truth-about-partial-mesh-removal/

    There are a few docs that are now doing full mesh removals, but many women make the trip to UCLA because Dr. Raz is known as “the master” at this.
    http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/

    Reply
  5. Malinda

    Thank you so much. With the info I have already gotten – it gives me one hope… God Bless you all.

    Reply
  6. Regina

    Hi Linda,

    After suffering for six years, I recently had the sling removed by a Gyn in April, 2013. However, since I was still in pain, the doctor stated that she was afraid she was not able to remove all the mesh and referred me to a urologist who performed another surgery only to tell me that he could not see or feel any mesh. Shortly after, the urologist scheduled an MRI which indicated I had a “adductor magnus muscle strain with edema and enhancement at the origin from the left pubic ramus”. He was quick to say “I didn’t do this” and referred me to an orthopedic surgeon, who like all the other doctors, did not believe me when I said I have been in pain for six years and asked me “What did you do?” and referred me to pool therapy. In Nov. 2013, I lost my job.

    I still suffer from pain in my left groin area which radiates down my leg. I am afraid that the surgery to remove the mesh was not successful but I’m too scared to see another doctor who is only going to tell me I need more surgery.

    Do you have any suggestions?

    Reply
    1. lavalinda

      Regina this is very common and until every bit is gone and the anchors, you will not know what you are left with. I have no doubt the anchors are causing you a lot of pain. Go out to UCLA and get the translabial ultrasound done where it will show how much is left in you. Look to the right for the blog that tells you all this.

      Reply
  7. BETTYE

    I have just found this site and pray that i will be able to find help here and support. I got my mesh for my bladder in 2003. Since then i have had so many problems and no one will say it is because of the mesh. But i know it is. i am now 62 and my life had been ruined because of this. I live in Memphis, Tn. i need help if anyone will or can help me.
    I have no money and have used what I had to go to the drs here. Most likely since i have had the mesh for so long it has grown into my surrounding tissues and can’t be removed without causing even more damage. I have to live with the pain for the rest of my life.

    Reply
    1. lavalinda

      Bettye, I have written a blog called mesh no money to let women know that there are things that can be done to help with travel. I know many women who live in Tennessee and I am afraid I do not know of any that can help you. I am the same which is why I travelled from Texas out to UCLA. It can be removed, but few can remove it.

      Reply
  8. SueAnn

    I am 40 years old. I was implanted with the mesh in 2009. I started having a lot of issues after that. I never put two and two together though. I have fecal incompetence (hopefully I am saying that right). I have several abdominal pains. I have had problems with my sex life too. It hurts to have sex. I have had back pains. I just learned back in 2013 that there was a problem with the mesh implants. I found in my records the manufacturer who my implant came from, and found out that they are one on the list. I am now trying to go through an attorney Motley Rice. I am not sure what will happen from here. I have had a lot of problems, and it would take all day to list them.
    What I would like to know is, has anyone gotten a new implant put in after having the old one removed? If not, how are you controlling your bladder. If you have, how do you feel and what is it doing to you now. I am so scared that I am going to make things worse having it removed, but I am also having so many issues right now, I guess it wont matter, but at least it will hopefully clear some of the things up. I am now on disability at age 40 and it is not fair. I used to bowl, ride fourwheelers, dance, play with my kids and just have fun. I recently just got married, and we have a special needs son, and my husband has to help him with things that I can not help him with. I get so frustrated and depressed and feel like I am not a good wife, daughter, granddaughter, mother or friend. I feel like I am letting people down all the time. I can not make definite plans to go somewhere or be somewhere, b/c I never know what is going to happen that day.
    Can anyone relate? I also would like to know what side effects that everyone else is having if you are able to share. Thank you

    Reply
    1. lavalinda

      SueAnn those of us who needed it, have a fascia sling done using our own tissues. Many women don’t need it, but it depends on the damage done to our tissues. No one can decide for you if/when you should get it removed, it is usually decided for you when things worsen. Slowly over time it does worsen. I have written tons of info on side effects, but you have to read through the blog and read all the women’s comments to know more.

      Reply
  9. Maria Beedetto

    Hello to everyone… I too am so glad that I found this Blog. There is so much to read but so far what I have from Linda ! And all the woman who have the Mesh Sling and the more I read the more I am AMAZED at all te issues all woman all over this world are going through what each and everyone of us are going through.. I too have so much too say about, the Doctors, your family and myself, but I want to read every single post, comment and website to learn all that I can.. I was told myMesh is a Skeleton, I don’t exactly know what that means, but also worried about getting second opinions from Urologists, Gyno’s etc… I had myMesh implant in May of 2007 I was 42 at the time.., I have had three Revisions since, ,so mind blowing to have heard that word from others, I didn’t even know I had them until my attorney told me that ,that’s what they were..I only had known them as being Cystoscopy’s… (Hope I spelled that right) … I am now 49, and have told indeed another surgery to stop Urinary Leakage and Stress Incontinence, I’m not even sure if they are the same things.. I have leaking all day long, cough, sneeze , laugh or just leaks out.. I guess that called Urgency, but also when I do release all that I think is out, I must sit there between 3-4 minutes and tilt my body so the rest comes out..and even after doing so, within minute, I may laugh or cough again, and more continues to come out, so it seems I’m never completely empty my Bladder, it has been 7 years since the implant of this thing they call Mesh, and last surgery for Revision was in 2011.. In 2012, I had to have a Hysterectomy.. In April 2014, the problems began again, I was annoyed, frustrated, depressed and not Phsically or Mentally ready to go back to my Urologist for many reasons,I also Have Degenerative Disc Diease in my Lumbar Spine, which also caused Nerve Damage in both legs.. I had a lLumbar Micro-Dysectomy in 2001 , way before I had Urinary issues, but now I’m not sure what is causing all my illnesses , I was told it could be from both issues… In August of this I started having Bowel issues along with the Urinary issues, so now I was starting to get nervous, more embarrassed and more depressed, not wanting to get dressed and go to family gatherings, parties and so on… So, I decided it was time to go back to the Urologist who placed the Mesh in, back in 2007, I was now somewhat Phsically and Mentally ready… That is when she told me with a demeanor that had changed since I first met her in 2007, that my Mesh Sling is now a Skeleton… I don’t know how a Skeleton can be removed if needed so I too must seek another opinion and just as I have so far read, Who and which Doctor’s can I trust.. I also thank all of you for sharing your stories, I have so much more I can say, but if want to make that pot of coffee , (rather than a cup of tea) and continue to read about all the woman who are going through so much due to this Mesh.. I only hope I can get some help before more symptoms occur due to this.. I read in one post it can start to effect you in many ways from 3,5, 7 or even 10 years later, I believe they are starting for me… until it write again, THANK YOU ALL AND MAY GOD BLESS ALL OF US… THANK YOU SO MUCH FOR ALL YOUR HELP, THUS FAR… MARIA

    Reply
    1. lavalinda

      Maria the cystoscopy is a test where they put a tiny camera inside your bladder to see if mesh has eroded through the wall. I wrote about it in the blog tests before surgery and you can look for it in the search engine. The reason she says it is a skeleton is because they cannot see it as the mesh has grown into your tissues. It takes the translabial ultrasound that UCLA does to find it. That is also on that blog. All these doctors will do is take you back to surgery and put another sling over the top of that one and then you will have more issues. Some women have had to have 3 slings removed at UCLA. While all this is going on any back problems you may have will be exacerbated by these complications and many women have had or almost had back surgery all because of mesh complications only they did now understand what it was. Many women also have bowel issues because the mesh moved or they put mesh around the bowel if they had a rectocele. Read your original hospital operative report to find out how much mesh you have. Your doctor does not keep these records, they are in your surgery notes and there is a blog about that too. Your doctor is just like all the ones every woman has been to. Once they know there is a problem they do not want to treat you so they are distant or rude to you, or just flat out deny there is a problem. I am glad you are reading and learning because your future and perhaps your life depends on getting knowledgeable.

      Reply
  10. Maria Benedetto

    So sorry, I didn’t know I posted that twice, I need to get more up to date with all this Technology, again I apologize..Maria

    Reply
  11. Tawnya Savage

    I had my mesh bladder sling put in, in 2012, it was one of the faulty one’s, it caused me a lot of pain and painful intercourse. Dr Gary Gregerson here in Nampa,I’d did the surgery to completely remove old mesh and replace it with the pig skin a little over 2 weeks ago on 3-2-15 so with 7 incision’s I am still in a lot of pain, he said it’s a 6 week recovery. Today he told me he just found out the pig skin he put in me had expired 2 days prior to surgery, and that there were several law suits due to that. What are my options at this time? What should I do? I have tried to do research on this and coming up with nothing. Thank you

    Reply
    1. lavalinda

      Tawnya I am guessing like most doctors he has no clue how to do the fascia sling using your own tissue and honestly I would never trust a doctor who put in something that had expired. Get hold of your lawyer or find one and tell them. Someone can’t read and why is no one checking the old stock. Smacks of irresponsibility. How was your old sling anchored? Did he remove those anchors? Things you need to find out and I will warn you many doctors say they remove it, but women find out they put another over the top. 2 weeks out, you should be improving and I can tell you another thing. No surgeon at UCLA would remove mesh and then put another in at the time of surgery. This is because of swelling and inflammation. Dr. Raz tells women all the time they have to wait 4/4 months.

      Reply

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