NO MORE MESH!

Before I write this blog I want you all to know the FDA has now changed the status on Pelvic mesh. However our work is NOT finished.

Read how to report your injuries at the bottom of this blog AND I will give you the link to the new statement the FDA just announced. Keep it up ladies! No more injuring women and telling us it is not the mesh! IT IS THE MESH! However, we have more work to do because this DOES NOT cover bladder slings.

Without YOU reporting your complications from these slings, nothing will change.

We are REAL women! We are not made of plastic and therefore plastic should NEVER be put inside our bodies!

Today is World Mesh Awareness Day and the reason I am doing this blog is because my mesh injuries stop me from going out onto the streets to protest. BUT I can do something and so can you. I can yell to the world that mesh is hurting women far more than it helps us. First though I want to thank all the women who sent the last blog to all their friends to let them know that pelvic mesh is detrimental to our health. I appreciate all those emails telling me you shared it and YOU WILL BE PART OF CHANGE! That is the power of women coming together and I appreciate you all very much.

The following three comments were left here by women who are too afraid to speak out in public but they want the world to know that they are injured. There are hundreds more throughout this blog you can read if you go through it. I am grateful to all these brave women because by writing, they helped other women understand that they had similar stories and it was the mesh that had been affecting their health. Because of this blog, hundreds of women have been helped and that includes me. I have been grateful to all the women around the world who told me things and because of their experiences, I learned what to do and what not to do. Yes I do have problems but without their knowledge my life would be far worse.

Some Real women are doubled up in agony because their internal mesh is infected. No amount of antibiotics will cure them and their only hope is to travel to a surgeon who can remove it all.

Here is one woman’s story

“I am writing to affirm that what Linda says is true. Someone reading her blog might think she is just one of the few unlucky ones; that a surgical procedure so widely accepted as the “standard of care” by the medical community could not possibly be so harmful. Let me share my story. As a nurse, I knew the responsibility of a doctor to explain the risks of surgery before I signed the consent form, so believed the TVT to correct my longstanding incontinence was a benign procedure, with fewer risks than hysterectomy. I agonized over having the hysterectomy itself and put it off for many years, but finally found it impossible to cope with the weeks of uncontrollable bleeding and decided to go for surgery. I was so pleased that I would be able to take care of my worsening incontinence at the same time. All went well, I recovered quickly and felt great–and was amazed to be able to RUN with my teenage son without leaking urine–something I had not done in years!

I cannot begin to describe the nightmare that began a few months later . . . being awakened in the night with astonishing pain . . . the horrible symptoms of a severe bladder infection when lab tests showed nothing . . . going to a succession of specialists to be met with stony looks, pats on the back and being told I was “fine” . . . the humiliation of being told “categorically” that it “cannot be the mesh,” “the mesh used in TVT is too small to cause any problems” . . . the horror of being told “it can’t be removed anyhow, it’s permanent” and being sent to physiotherapy to try to “manage” the pain. I refused to give up, and went to a GP who listened and searched for other possible causes of pain, eventually to recommend a psychiatric evaluation to find a presumed psychogenic basis. I felt trapped in an unending cycle of medical denial, and increasing and unrelenting pain. Thankfully, I hope my story will end well, thanks to Linda and an amazing support group of women who have been injured by this procedure. The GP listened to the evidence I collected and has finally recommended a referral to someone who can help. So many stories have no happy ending, so along with Linda I caution everyone who may read this: Do not do it! Save yourself the agony and heartache! There are alternatives!”

Some women cannot sit due to damage of their Pudendal nerve. They miss all their family passages of life while they lay in bed in pain all alone. It is scandalous that this can happen to once healthy women.

Here is another woman’s story.

“Hi, my name is Valerie. I am so glad I found this blog. I hope people are still responding to it. Let me say first, I know what you are feeling, because I too am feeling these same things and my heart goes out to each of you. I am 42 now. I had a total davinci assisted hysterectomy in July of 2012. I had prolapse of pelvic organs and cysts on the ovaries. It was all removed. My bladder was repositioned and put in a sling for the incontinence. The gyno who performed the surgery is not helpful and has come to the conclusion all of my pains are in my head. He does not believe in HRT either, so I suffered greatly after this surgery with the hormonal effects. Anyway, my healing has been slow. I lost my job over the pain and inability to return to work. The Gyno has no idea why I’m not ‘getting better’. He was an azz and even proceeded to yell at me during an office visit. (Of course, to be expected in this town, where people have told me of doctor’s lying to wives about needing a shot because their cheating hubbies gave them an STD.) How is that even moral or ethical?
Well, I am constantly in pain in my abdomen, below my belly button. It’s hard to pee, yet no signs of UTI. I have been ill with flu and viruses constantly and on meds since surgery for one thing or another. Sex is out of the question. I’ve tried twice with bad results. First time, it tore my surgical cuff apart and second time I contracted BV overnight. Both were tremendously painful. Hospital told me it was PID too, BUT I HAVE NO FEMALE ORGANS! My PCP was in shock when I showed her. And, in fact, my gyno never sent her any record of my Hyst. She had to ask me everything. She seemed upset after my visit. I’m just so ready to get better. I don’t leave the house, I stay in bed now. It’s only gotten progressively worse. I just want to go back to having a life again. This surgery was supposed to take the pain away, not make more. I have no job now, no insurance, no home, no husband and maybe now, never a boyfriend. I can’t live that way the rest of my life. I will surely shrivel up and die inside and then out. There must be help. Pain pills don’t even take the pain away. It’s a constant ache and sharpness. Like bad gas after surgery in the same spot all the time. I don’t get bloated or anything, but I can feel the relief when I press and massage that area. Then it just comes right back.

I don’t care what a doctor tells you. DO NOT do this without doing the research. I live in Texas, near Fort Worth, but had the surgery in a small town full of docs with a God Complex. No choice at the time. I don’t even know what kind of sling he used or anything. I can’t get my records, I owe him money that I refuse to pay, because he refuses to treat me with dignity and respect. I hope others read these things and that we all get help in some way. God Bless, I pray for all of you.”

Other women like me have damage to their femoral nerve and walking is made difficult and painful. Most of us use walking sticks, but some wind up in wheelchairs and are permanently disabled.

And another story.

Hi, Sorry for the following novel, but I need some words of wisdom from anyone that has been thru this. I had a hysto and TVT sling put in in March 2011 when I was 39 (and very healthy). I had had 3 vaginal births, and had problems with prolapse. My gyno on the verge of retirement referred me to his partner who said that I needed the hysto and sling because everything was falling down. She determined that she would do the hysto and her urologist colleague would do the sling one big surgery. About 4 hours after my surgery, I passed out. I had internal bleeding, rushed into surgery to find the bleeding, and luckily by then it had stopped. While recovering in the hospital, I noticed it was very hard to urinate. They had me take a catheter home, I had to use it for a week. After that, I thought I was on the road to recovery…not so much. I had the urgency to urinate, but couldn’t go. My bladder would then get so full that I would wet my clothes. I finally figured out that if I hike my rear up in the air and contract my ab muscles, I could pee. I talked to the urologist about it, he said that the sling should loosen in time, if not, a 2nd surgery would be needed to loosen it.

In July 2011 (about 3.5 months after the surgery), I had a DVT (blood clot in left leg). My family doc discovered it after I had unusual pain in my left leg. My urologist said “no way did the surgery have anything to do with that”, maybe, but I’ve never had clotting issues before in my 39 years. I then decided to see a specialist at a very reputable clinic here in the U.S. He said that I should have the sling cut, but can’t do anything until I’m off the blood thinners from the DVT.

>In Jan of 2012, I went off the blood thinners and contacted this specialist. They brought me in, did a urodynamic study and decided that cutting won’t help, I just need to self-catheterize for the rest of my life, several times a day. I contacted my gyno (he didn’t do my surgery, his partner did), he said that didn’t sound right at all, and told me to contact a different reputable clinic. So, I contacted this other specialist. He saw me and said that I have to have this 2nd surgery to cut the sling, or else my bladder will give out due to all the straining. I go in this Tuesday.

On top of all this, I still have major pain down my left side. It used to be my leg, now it is my arm as well. I saw 2 different neurologists, had several tests done. They can’t find anything wrong. I feel so confused and upset that I ever had this surgery in the first place. It has done nothing but caused pain and suffering, on top of all the work I have had to miss. If anyone has had this 2nd surgery to “loosen” the sling, please write back! Thank you.

I get up every day and read so many of these stories which is why I know medical mesh is destroying women’s health and lives. If you are not mesh injured, I cannot tell you what to do if you need any female surgery, but I want you to know there is a very high chance that in time you may have serious complications. How many women are affected? Without EVERY woman reporting their complications to the FDA we will never know. To read more about World Mesh Awareness Day click here.

To view the new FDA report on the problems of mesh, read here
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm395192.htm

To read more on this subject please go to this link
http://meshmedicaldevicenewsdesk.com/fda-notices/fda-announced-proposal-to-reclassify-pelvic-mesh/

Around the world news. You can Google mesh news stories and find many now. These are only a few.

U.S.A.
I have always been part of a growing movement to inform women of the dangers of mesh. You too can become part of a growing worldwide movement to stop this from happening to other women.

These are some of the growing number of women who are protesting around the world:

Canada
http://www.theglobeandmail.com/news/national/saskatchewan-urged-to-cover-surgical-mesh-removal/article5789099/
http://www.ctvnews.ca/health/health-headlines/more-women-seek-surgery-to-relieve-pain-from-transvaginal-mesh-1.1163700

England
http://www.dailymail.co.uk/health/article-2197850/The-scandal-women-STILL-arent-told-risks-bladder-operations.html

Scotland
http://www.dailyrecord.co.uk/news/scottish-news/mesh-implant-scandal-victims-urge-3273896

New Zealand
http://www.3news.co.nz/Mesh-sufferers-petition-Govt-for-inquiry/tabid/423/articleID/337200/Default.aspx

No one is keeping track and without mesh injured women reporting to the FDA, the numbers will remain low. Please, please report your mesh injury to the FDA and stand up and be counted. That is all I ask.  Thank you. Linda

Here is the link to report to the FDA.

I have stated throughout this blog that this is a World Problem so wherever you live, please report it to your own medical government.

6 Comments

  1. Bella

    Linda you are a true inspiration, I can be having a bad day, the worst of days and feel like I am on my last leg, like I could end this at any moment and read something you wrote and it gives me the strength and the courage to fight a little harder. You have always been a true friend to me and for that I will always be internally grateful and hold you close to my heart. I am also hoping that one day we will meet. this needs to get out there, you are right, so many needs to know about this. This needs to be in every single home in the World and I try to do what I can when I can. Thank you so much for being a voice when others are too sick.

    Reply
    1. lavalinda

      Bella I can’t take away your pain nor that of so many women, but I can keep trying to make other women understand how terrible these products are. I just hope women will search for a doctor who will fix them without the use of mesh. They are out there and it will be worth their time to search rather than to wind up like us.

      Reply
  2. Joleen Chambers

    Mesh Awareness Day is an indictment of poor FDA enforcement of its’ chartered mission, weak judiciary and profiteering medical device industry leadership. PREVENTABLE harm should be prosecutable to the fullest extent of the law.

    Reply
    1. lavalinda

      Joleen I hope some day it will be recognized for what it is. It is a heinous act to put healthy women in this much jeopardy and to turn them into disabled and unhealthy women. That is why I keep writing.

      Reply
  3. Fred

    Could you give us a doctors name for removal , my wife was diagnosed with a spot on her kidney, final straw after all the pain and fatigue, please let us know of the group of women trying to go down to la , we live outside Vancouver bc

    Reply
    1. lavalinda

      Fred I will put you in contact with a Canadian woman who went to UCLA.

      Reply

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