Twelve Years of Mesh Hell, Now a Light of Power

I wrote the following blog last night after talking to a lady who has had mesh in her for twelve years and will soon have it removed.  This morning I woke up and thought of her words. “They stole twelve years of my life.”  I had to relieve the bladder pain that I feel every morning and as I carefully hobbled to the bathroom, I kept thinking of what she said.  Hard core criminals would not be treated like this.  Yet our government, the F.D.A.,  does nothing to stop this.  Yes, every woman should report it but it is made so difficult.  How can sick women go to the hospital that did their surgery, stand in line and beg for their own records.  That is if they are available.  One woman told me the place that did her surgery is gone and her records nowhere to be found.  Why isn’t there a database where implants are entered at the time of purchase with all the details needed?  Isn’t that what they do with dangerous drugs?  Then all we would need is our social security number to make out the report.  This is an atrocity to all the women who suffer every day from bladder sling surgery.

This very lady apologized to me that as yet she has not reported hers to the FDA.  She has the implant name and number but forgot how to do it.  I told her I would send her the link.  I know she is so sick and the drugs by her own words have changed her brain to mush.  I can’t blame her for not being able to do it.  For most women injured by mesh, this is the least problem on their mind.  Now I will let you read how she is and what her plans are.

I just spent an hour and a half on the phone with a lady who lives in Oklahoma who will at last have mesh removal surgery by Dr. Raz at UCLA, one week after me, on the 18th October.  We were both laughing and joking, sharing our fears and our hopes for a better future.  This lady deserves a future.  For mesh has been creating havoc in her body for almost twelve years.  Now it is time to get it out and start a new life.

It seems so long ago since she made contact with me the first time and yet it has been a very short few months.  The first time we spoke she was overwhelmed at the fact that at last someone was listening to her.  Her history since bladder implant surgery has been non stop surgeries and tests without any answer that made sense.  None of it worked.  I told her that the only person I knew could help her was a long way away and it would be hard for her to go.  This because she had told me that she can no longer sit and she is mostly bedridden.  I knew as I spoke to her that this woman was not going to let a chance for wellness pass her by.  Dr. Raz WAS her last hope.

She made that  first consultation appointment immediately.  Her husband was also on board with getting her the help she needed.  He too has his own ailments including back problems, but when appointment time came, he drove her laying in the back of a van three days each way to get her there.  It was hard, but he did it for his wife.  Yes, the trip took so much out of them both, but they are both fighters.

For her to hear Dr. Raz’s words, it IS the mesh was like music for her soul.  It was worth every painful moment to get there.  He told her that he could not promise her he could make her completely well , but he could make her better.  He admitted that she was one of the worst cases he had ever seen.  She thanked him and said 25% to 50% would be better than she is now.  Her life had dwindled to a dead halt and no one had offered to help her before.  She said at times she had prayed for the Lord to take her.

So now as her own day is fast approaching, she just wanted to talk to me because we may not connect for awhile until we are both able and well enough to do so.  I knew too she needed someone to tell her that life could and would be better.  I told her about the blog I had written a day ago titled The Light in a Night of Mesh Complications, about another woman who has taken a year of chances with Dr. Raz to improve her life and at last she is reaping the rewards.  Life is returning.  Not the same life she once had but a new beginning.  A life of hope.  I told this lady I would send her the link so that she too could feel the hope for her own future.

So if you are reading this and you feel paralyzed with fear of mesh removal surgery and the long trip to California, think about how hard other women have had to climb Mount Everest.  They have done it and so can you.  This is your life we are talking about.  Someone loves you and will miss you if you don’t take that first step.  You deserve to have a chance of a new life.

Once again this lady will be driven three days each way by her husband who has to stop regularly for a rest or he won’t make it.  Yes, it is tough but I know they will be rewarded.  I finished on the phone by saying to her that I would love to share her hope with other women if she will keep a diary after removal as her life improves.  She said she will.  I look forward to reading her words and I will share them with you.

9 Comments

  1. Robin Robbins

    Dear Linda, I am in TEARS to have read the Beautiful page and Kindest thing anyone if my life has wrote for me! You wrote about me and my dear husband who does not get enough credit. Many men would have fled years ago. They say the divorce rate for couples with one who has debilitating pain and disability is 70% higher than normal. Because of my husband’s disabilities also and More So His FAITH-he has stood beside me.

    I used to read the Bible verse of the woman who had been afflicted by an ailment that sounds much like those that females have today. She had had it 13yrs! yet had the FAITH if she ONLY touched the garment of Christ she would be healed. She did make her way through the crowd and touch the hem of His garment. That is when He said “WHO touched me?” His disciples said “Lord MANY around you are touching you!” He said “NO I feel Power that has gone from me to someone else who is hurting” Then the woman admitted it was she who had done so. He told her that she was healed because of her great faith and to tell others.

    I used to think 13YEARS! How on earth could she still have FAITH?-I now KNOW! My reaching out to be healed was finally led to YOU who led me to Dr. Raz who I am SURE the Lord uses to heal others as the Lord does for other Doctors who are Honest with themselves and have Faith in the Lord above who gave them their abilities and not believe their talent is all from themselves!

    I am sending this beautiful letter to all my friends and family. I mentioned before in an email to you something you did not publish, and that is that the “boat” we have all been in has been BLESSED to have a Captain in it guiding the way for those who choose to remain in the boat to Recovery. YOU! Without you as a Captain, I and I am sure many others would be unsure of their chances of time it would have taken to find help if any. I feel the Lord has used and guided You and all of us, that is “my” personal feeling because HE has guided Me through many nightmares in my life before, some for a few days, some for years, MANY NOT involving Mesh, but all HE got me through to see the rainbow on the other side and Many Blessings,you being one of them on top of the list! We often forget to count our Blessings and focus on the negative instead, just turning on the news many times reinforces that and we need other Positive People around to build us up! and not Negative people to drag us down.

    A person may not see their growth in Life but IF they are continually trying, admitting their faults and trying to do better A day at a time, sometimes Minutes, and then following through-they WILL see it. As a tree you look at every day it doesn’t seem much larger than last time you looked, but if you have pictures of it a year ago or years ago you CAN SEE the growth it has taken. On the inside of trees are rings which scientists tell us tell us according to their width show exactly what kind of season they had each year, one of plenty sunshine and water, or one of drought and struggle. But all those together bind to each other to make a Strong Trunk that holds the Tree up steady, some may even be chopped down or hurt by storms, yet as so many have seen many times as I have that life coming back no matter how much they are hurt on purpose or by nature.

    I feel all of my fellow sufferers are like that tree. Their “insides” also would tell years of struggle, years of joy whether it is in their body or mind. Hopefully other “trees” will be strengthened by our growth and honesty and the sunlight the Lord provides each day whether We choose to seek it out or not. Even on days we do not see the Sun it IS there. I read a verse once where it said “FAITH is like the Bird in the early morning darkness-Singing because he KNOWS the Sunshine of the Morning IS Coming not because he yet sees it.”
    I tried to remember that verse on days I could see no sun and remember just because I did not see it did not mean it was not there, just as not “seeing” the Lord does not mean HE is not there. He is like the WIND, something you cannot see but CAN see the effects of Powerful or Gentle-It and HE ARE there even if you do not see Him. We just need to look around at evidence of the GOOD that is still in this World that also has the Power of Evil in it. The Lord did not make us machines and gave us free choice to take either side.

    I Choose for Today to Continue to look towards the LIGHT. Thanks Linda with all my Heart for being the Captain of the Ship going towards the Light! Together all of us who have decided to Stay in the ship ALL make it a stronger and more powerful one by building each other up. Blessings to ALL!,
    My nickname for today? “The Bird Singing in the Early Morning Darkness-Just Before the Sunrise!”

    Reply
  2. lavalinda

    You will be the inspiration for many to move forward. I can’t wait until you are living a better life.

    Reply
  3. debc

    In the last few months I have been living my own personal hell… getting weaker and less and less independent. Able to do less and less… while my husband and children have to do more and more for themselves, each other, and for me. It’s not a good feeling.

    I hate saying “I can’t”. I’m 46, not 96… and I’ve always been a very strong and independent woman, but ever since I had a simple sling for SUI just last February, there are more and more things I can’t do. Little things and big things. I certainly can’t go out dancing with my friends like I use to. But, I also can’t even walk my dog. Hell, I can’t even walk period without wincing, or without my crutch. I can’t get through a day without pain meds. I can’t get all my work done at work.. or my housework at home. I can’t go grocery shopping unless I use one of those electric scooters (ugh). School shopping this year was a joke. I can’t go to my kids sporting events. I can’t go to this or that event, period. Even with handicap parking, and even though I try to count my blessings on all that I DO have and CAN do – there is still so much I can’t do.

    But, I also know that my “personal hell” is like a walk in the park compared to so many other poor women suffering from mesh compilations. After all, I’ve only been dealing with this for several months, after one surgery. There are so many other women who have been dealing with so much more pain, from so many more serious complications than I am… and for much, much longer… years and years… often while having surgery after surgery.

    I am planning on flying all the way across the country to go see Dr. Raz for mesh removal surgery in January. Lots of people think that is crazy ridiculous. Then, I read your story, Robin,… and how you can’t even fly… and the drastic measures your husband and yourself are going through to get to UCLA, and I think … wow… I’ve got it easy! So, my flying to see Dr. Raz? Not so ridiculous!

    It just goes to show, sometimes you have to do whatever it takes. And that “whatever” could mean a lot of different things to a lot of different people.

    Thank you so much for sharing your story to help add perspective and inspiration… and HOPE! =)

    Reply
  4. teresa hughes

    Dear All
    Thank you for sharing your journeys of this dreaful mesh. These stories are so heartbreaking to read at times.

    This should not be happening to us and yes I to am a sufferer in England. and I to have to travel over 200 miles to London but by train. I am having my mesh removed soon but this mesh is like shrapnel in my body and has already affected other areas which need further operations and treatment after mesh removal..

    Robin you and your husband are such a bond and show such strength. I am sure that Dr. Raz is going to make things more comfortable for you as it would seem that he is a pioneer of mesh removal.

    I wish you ladies and gentlemen the best of luck and warmest wishes.

    Teresa Hughes United Kingdom

    Reply
  5. Robin Robbins

    Thank you for all the prayers and good wishes!!!. Congratulations to the brave women who took the many steps to get relief from Dr. Raz. My husband was again shocked TODAY when he talked to an acquaintance who he had not seen in a long time. He told her of what we were going to do. She told him her sister JUST had a mesh and she was horrified after hearing my husband’s story.. I am horrified it is STILL happening!!? I had informed her brother whom we know better about my situation several times. So perhaps he had not told his sister or thought to. But I keep wondering if he had, would she had been able to influence her friend not to!?

    But all I can do is tell everyone I know. Heck if I am on hold with a lady on the phone with a company I will tell those I don’t know at all about it! Some seemed amazed and shocked I shared something so personal but a few have actually listened and said they were going to tell so and so a friend or a family member of my story. SO THAT is why I tell, I have NO embarrassment whatsoever anymore.I have stopped 3 women I know of having surgery, one was just TWO days away from the surgery and she cancelled it. She was in her 70’s,just lost her husband and just had knee surgery all last yr. She immediately cancelled hers and I knew by her personality if ANYONE would she would because she had been led through things before by the Lord and probably thinks she was led to call me for a reason when she called and asked what “kind” I had had for almost 12yrs. I said DON”T have any put in! PLEASE! read these sites, see and hear what it can do! She did and she cancelled!

    I heard of a young man recently who had a hernia operation, I had known him and his wife but not well so don’t know where he got his info from but THANK GOD he was listening! He got into the operation room and they were going to have him sign forms to put mesh in. He said NO MESH-DO IT without IT! They said they would have to go get the Dr. and have him sign other forms. He said FINE-I DO NOT WANT MESH! Guess what ? they gave him a hernia operation that worked WITHOUT mesh! DUH! Proud this young man stood up for himself! And glad I or any others have reached anyone.

    Believe me when I was 42yrs old and been happily remarried for 7yrs I got my mesh sling during another operation without even knowing it would be done. It did hurt IMMEDIATELY as soon as I woke up in recovery-worse than labor pains and I have had two kids but you KNOW the pains WILL go away eventually! I had had MAJOR surgeries before like two discs in my neck fused, hysterectomy that I REALLY needed for Adenomyosis like my Mom had at the same age,same clinic same reason,same month something I did not know until later!. After the hysterectomy I did fine, Adenomysosis is opposite of Endrometriosis and the ONLY cure is a complete hysterectomy, your period stays mostly inside each month building up more and more poisons in your system and uterus that can eventually burst and poison your whole body and kill you. They cannot definitely identify it until after the hysterectomy when they take your “boggy” uterus out and the many cysts etc I had everywhere and then they KNOW you had it. Plus I has other major operations.
    So yes, you Do have to take it A Day At A Time,Look to the Lord to guide you and use others to guide you and think of yourself FIRST! You are worth it, we too had to sell some major items and still have questions about the future but I look forward to the little things in life again like walking down the road with my granddaughters and grandson, and concentrating on what my husband has to do to get better physically in several ways he has put on the back burners. But the light is getting brighter now at the end of this long long tunnel, the first time I SAW that light is when I saw Dr. Raz! You too who are going to him WILL also. God bless you all! and may God’s wings cover you next week during you operation Linda, as he whispers His knowledge into the ears of the Doctor HE gave it to!. Also Ruth you have shown me so much how God is working-I will see YOU soon also. God bless you and your family SO much!
    Blessings,RR

    Reply
  6. C.C Crane

    I am in my 10th year But the worst Has been the Last 2 Dr. after Dr. No help No anything but BILLS…I find it very misunderstood.And the pain is unreal..I have had 19 unelective surgery’s.NOT one elective.I know pain ..But this pain is so nauseating..I would so enjoy discussing our different circumstances .
    Thank you, Would feel so good to be more understood how disabilating it is.

    Reply
    1. lavalinda

      Hi, I’ve written a blog about a woman who had mesh in her for twelve years and it almost destroyed her life. Last week she had full mesh removal by Dr. Raz at UCLA and she is walking again. You can read about her here. http://teapapers.com/bladdersling/2012/10/mesh-removal-hope-for-you

      Reply
  7. dc

    Hi CC. You probably saw that Linda is going to be off-line for a few weeks, while she is finally getting some help for herself (http://teapapers.com/bladdersling/2012/10/my-break-time-for-surgery/)

    19 unelective surgeries? Oh my… I can’t begin to comprehend what you have been through.. but, I know you are not alone, and that makes it that much more horrifying. Any chance you could get to Dr. Raz in California? It seems that he is the one that truly helps women, even when so many others have failed. That is where Linda is now (http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/).

    You may also want to talk read this post – http://teapapers.com/bladdersling/2012/09/a-light-in-a-night-of-mesh-complications/ – a story of someone who also knows pain. And, if you aren’t aleady familiar with it, the MDNM

    Reply
  8. RR

    Hi Everyone, I wrote this to someone who had contacted me and also had an appointment today with Dr. R but I missed her. I am forwarding it this way to all those on this site and others who have suffered from mesh/slings etc.

    Hi, I was very glad to meet all yesterday the short time I did. Once again I was at Dr. R’s and I was down to my last two pain pills because my Primary Dr. in OK would never give me the Kind OR amount Dr. R. prescribed for me and said to continue with my personal physician once I got home. So after MUCH hassle on getting finally the right kind and NEVER right amount despite Dr. R emailing and calling himself to my family Dr. My primary Dr. would never give me what Dr. R did for pain and I had had for 2 weeks and saw for the first time in yrs how the right dosage and kind of RX helped me walk, SIT in a cafe with my husband and eat for the first time in a LONG LONG time etc. I was so excited and then to get home and my own Doctor immediately said NO and asked me what good had the trip been if I still was in pain!? I TOLD HIM I CAN WALK NOW! AFTER NOT BEING ABLE TO THE LAST 6 MONTHS!, THE SPASMS IN MY LEG HAD GOT MUCH LESS BUT IT HAD ONLY BEEN AFFECTED 6 MONTHS! My pelvic pain had 12yrs of a Mesh/Sling in it growing into a MONSTER of it’s own making masses that entrapped nerves and muscles etc.! No matter what ,he did not listen and last visit when I told him I was going back because Dr. R. had ordered a scan for me to have at home and as soon as he looked at it asked me to come back asap. My family Dr. told me “WELL HE BETTER FIX YOU THIS TIME BECAUSE I AM NOT GOING TO PRESCRIBE THOSE MEDS FOR YOU!” I even had to go to the emergency room once the pain got SO BAD!

    I don’t do Facebook for legal reasons and some sad past family experiences that go back years and came to the point I decided to detach from my only two siblings both older by 9 and 13yrs. I found and came to the realization finally that no matter what my husband or I tried both my brother and sister were toxic people who would very likely never change, despite being family. It all came to an ultimate awareness where I took care of my Mom and Dad for 5 and 6 yrs and my 1 brother and 1 sister never came to see my Dad who lived with us and had Alzheimer’s for the last 6 yrs (or me). Thank God Dad forgot the hurt faster than I did when he tried to call them they would not answer and I heard him cry ror the many holidays they came to see Mom in a nearby nursing home about 1 mile away yet never came to see Dad once, send a card, call or anything for Holidays. My brother came to NEITHER funeral. So lots of bad stuff from them during that time I got legal guardianship of our parents and neither of them wanted it themselves, neither showed up to court, just wanted to gripe because I was the only one willing to take them both,one hated Mom, one hated Dad and they were a package deal! Having been married over 60yrs and I found out how much my Dad truly loved my Mom after almost doing himself in physically the last few years waiting on her hand and foot stubbornly. So I KNOW I would push on their Facebook buttons and those of most of their adult kids who took their sides also. Any old grievances about an 80 something yr old man about something that happened 50 yrs ago and he could not remember things 5minutes ago! I understood in NO way that thinking. Then found out the very thing he was accused of and probably did my Mother had also!

    So I KNOW now some people are toxic! related or not and just add stress to our already stressful lives! And I don’t need any more of that kind of stress of course and try to surround myself with positive people and people who have LEARNED from mistakes and CHANGED as my Dad very much did the last 6 yrs of his life, getting a closer relationship with God and showing me the REAL Dad I always had and 6 yrs of HIM teaching us to be more caring and calmer.

    So I wish I could have visited with you all but my husband really enjoyed visiting with all that were there and especially to be able to speak to other husbands and share. I talk to others though Linda the tea lady on her site at http://teapapers.com/bladdersling/2012/09/twelve-years-of-mesh-hell-now-a-light-of-power/#comment-793 and use initials etc. She is the one that God sent me to to find Dr. R. and the help he gave me.

    This visit yesterday we were at his office for over 4 hrs getting tests and then seeing him. He told me that although he got the whole sling and mesh out there were tiny pieces of it still in my nerves that could NEVER be removed and thus still causing the same CHRONIC CONSTANT PAIN. I have scheduled to come out to CA again June 17th for him to install an InterStem unit, a pacemaker type unit that he attaches to wires to my bladder muscles and you control the stimulation they get to turn off the pain signals by a unit they first keep taped on you for about 1 week and then if it works they implant it under your skin and you control the device for pain control. I probably said before I once had the 2nd Dr. who said he tried to loosen my sling one yr after it was put in try to put an interstem in me, but they were new then, he had not had much experience and only got it attached to one side which was not the worst side the pain was on where the largest growth was removed after a very difficult operation Dr. Raz finally did thank God last Fall. That Dr. wanted to try it again but it was at that time I was getting legal guardianship of my parents and I said NOT now, no more operations at this time. He then wrote me a letter soon afterwards saying I would no longer be his patient because he would not prescribe pain meds! I had never got such a letter before or after!

    After getting my ability to walk again after having Dr. Raz remove my mesh/sling and the growths it had made for 12 years and the mesh itself had got as thick as his little finger he said and had all the metal and mesh in it and had wrapped itself around and around my urethra. I NOW KNOW WHY I COULD NOT SIT FROM DAY ONE when it was put in me without my knowledge during another operation!

    And I know if anyone knows how to do these operations correctly it is DR. R. So I will return June 17th and be here for about 2 weeks. Looks like we are going to have to figure out some MORE fund raising methods again! This last time my husband had my son take scrap metal in several loads, our church helped us with money and I sold some things myself on Craigslist etc.!
    3 visits in 6 months and the many medical bills have really added up and keep coming, but we know God will help us figure out a way ONE MORE TIME! Just trying to relax today after the tests that hurt worse than I remember! I am going to see my 30 yr old son who was in the Coast Guard 8 yrs and now lives in Oregon going to college full time paid by the VA and his living expenses. He is flying down to see me tomorrow, will be the first time in over 2 yrs I have seen him! I am VERY grateful and excited about that! I am VERY bad with names, I have Adult ADHD which the pain has NOT helped and my counselor has assured me my memory and brain WILL get better as the pain gets better! SO I AM HOLDING ONTO THAT! Having taught school 20yrs with a Masters Degree I know I ONCE had one! Ha! But being almost housebound for many of the 12 yrs has really got to me. So please forgive me if I mix up names etc. Or repeat myself I AM SORRY! I do know though that we are all in this big ship or LIFEBOAT together perhaps in different compartments but all trying to go to the same place of Healing and a Better life.
    God bless you all! RR

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