Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

It’s NOT enough. We need help!

Sad Teenage GirlSome days everything is just so hard, and it’s hard to be hopeful.  I spent the last few days trying to catch up on my meshmenot blog, Facebook page, and with current news surrounding mesh.  I realized I had new comments, both on my blog here, and on my Facebook page, that I had not yet responded to.  I don’t get that much traffic, really, and since I’m also working, etc., it’s easy to overlook or miss comments sometimes.

The comments I get, either sent to me privately, or posted publicly, are so often just heartbreaking.  Women saying things like,

“PLEASE SOMEONE LISTEN AND HEAR ME… I AM BEGGING FOR HELP. PLEASE….”,  
or one who wrote;
“I am suffering for 17 years now. I have pain all the time. I had the surgery twice. I went back a third time and my doctor refused to see me.”
and then there was;
“I’ve been living in hell after having mesh surgery for Sui. After going to 3 doctors who all said there’s nothing they can do, I found your blog”
and;

 “I truly am afraid I am going to die, I am looking like I am anorexic. I have never had an eating disorder. I am tired of being in pain, I am tired of being tired”

and then there’s this;

 “I don’t have a life, this is an existence. I haven’t been able to accept that I have been left disabled and that constant pain and incontinence is my life from now on.

“I am so suicidal. I have thought of taking my own life so many times over the past few months and have been prescribed anti-depressants.”

(from: https://meshmenot.wordpress.com/2015/01/14/i-dont-have-a-life-after-op/)

The keep coming… and they will go on, in detail, about all they have gone through.  It’s not only depressing, but downright horrific.  If I hadn’t heard most of it so many times already, it would be hard to believe.  But, I have heard it too many times, and I do believe them.

I tell them all they are not alone… and they are not. The really sad part is most of them have been made to feel that they are alone… or crazy… or both.  But, no, there are countless more like them turning up every day… on my blog, on other people’s blogs, in support groups, in doctor offices and ERs.   But, doctors frequently turn them away… and, many doctors just keep putting more mesh into people anyway, telling them they don’t use “the bad mesh“.  It’s so discouraging.

I know those of you in the mesh complications support groups hear it every day… and, hell, many of you reading this live it everyday.

Doctors must hear it too, yet so many respond to women having complications as if they have never heard of any problems.  This is becoming more and more difficult to believe.  Women are routinely reporting that they were told that, “they are the only ones”… or that their case is extremely rare.

The mesh complication support groups are growing and growing.  They are usually run by those who are dealing with complications themselves.  They are a great resource and support to many.  However, the injured can barely help themselves, much of the time, let alone help anyone else.  And really, what kind of help can we, the average person, offer?  There are no easy answers…  no quick fixes for people that are just plain desperate for help due to mesh complications.

Normally, you tell someone that is dealing with major medical issues to go to their doctor.  However,  most of these women have been to doctor after doctor, only to wind up getting worse and worse. Some are even refused to be seen by their doctors.  By the time they find my blog, many of them are so desperate for help, they may have had several surgeries. They may even be suicidal. 

And, what can I tell them?  I’m not a doctor, and I can’t fix them. I’m not rich, and I can’t pay for them to go get fixed by one of the few experts that may or may not be covered by their insurance.  That is IF they still have any insurance at all.  So many have already lost their jobs, insurance, homes, husbands, and all that goes with that (self-esteem, independence, etc.!).  Yet many doctors will say complications are “non-life threatening”, and “manageable”, and keep advocating for the use of mesh. How is this being allowed?  Why is mesh even on the market?

I do try to answer every comment. I want to help.  That is why I have this blog.  But, all I can ever really tell anyone is to try to get to one of the few doctors that are experts with mesh removal and non-mesh repairs, like Dr. Raz, or Dr. Veronikis,  and to try to get all the mesh out if possible… and, point them towards support groups.  I can tell them my own experience…  and share information I’ve learned.

It hardly seems like enough. 😦

Where is the help from the medical community??

WHY??

Why are more doctors not being trained on FULL mesh removal?  Why are so many doctors who can NOT treat mesh complications, and do NOT have any answers, STILL putting mesh into people?  WHY are these products –  that are responsible for maiming our bodies, and ruining not only patient lives, but the lives of their families –  STILL being aggressively marketed and sold?  Why is MAKING MONEY taking precedence over peoples lives!?

How is this being allowed??

I really want to know.

If you are feeling alone, and in need of support, please check out one of these support groups, or one of the other many ones listed on the bottom of this blog:


==============Related Blog Posts================

==============Support Groups================

Perhaps even more helpful than articles, is talking to a variety of others who are suffering from mesh complications, and are in various stages of treatment.   Three of the larger support groups I found helpful are: 

===============MORE COMMENTS from those hurt by mesh============

Here are more comments from women in the CLOSED support groups, which I am sharing with their permission:

“I had just turned 40 when I had my mesh implanted, and was a fitness nut, walking/biking/rollerblading every day. I was the healthiest I had ever been in my life at that point, other than the slight prolapse and SUI.  Feel so bad for my husband (and myself) that our sex life had to end when we were barely 40 years old – not to mention the loss of all those years of my income that we now face. It shouldn’t matter how old we are, everyone’s life should matter equally, but maybe people would listen more if they realized it happens to women in their 30s and 40s, too. I think there are even a few in their 20’s in our group – horrible!!”   – Janet, May 2015

I was only 37, now 39 and I’m ruined for the rest of my life.  I was also a health nut and workout freak. Incredibly fit before mesh. Trained 3 times a week with trainer. I was so active. Now I’m bedridden. …Most I walk is around my garden some days.” – anonymous, May 2015

“I just found out today that a friend who had prolapse after her miscarriage, had tvt mesh put in 2 weeks ago. This was after her talking with me and saying she will never get mesh in her body after seeing what I have been through. Well guess what? Her surgeon talked her into getting it, saying that I was not a “reliable example” and that my situation is “rare”. Well guess who was in the hospital today with extreme pain and infection? Yep my poor friend who is in her 20s. She said only 2 weeks after tvt mesh was put in and she said I wish I didn’t listen to that doctor.  She said she knew she shouldn’t of had it done, but her doc told her it was only alternative. I feel sick about it.”  – anonymous, May 2015

I hope more people add their comments below, or feel free to email me if you do not want to have your name or information posted but would like your comments to be recorded here.  My email is meshmenot.wp@gmail.com.  Thank you!

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Categorised in: Doctors Who Don't Use Mesh, Mesh Complications

16 Responses »

  1. Oh Deb, I so agree! It’s desperate that we cannot get the expert help that we all need … It’s desperate that women are still being put at risk everyday by unscrupulous doctors out for their ‘jollies’ !! …. I am so sick of it all …

    Liked by 1 person

  2. I live in Eastern Idaho and right now my surgeon who removed my sling is the only URO/GYN in our state the other two are in SLC, UTAH. I know my surgeon travels a lot to teach others about this. However, at my four week visit and since nothing had changed – – meaning I still was in pain most days – – he said “It’s not longer a GYNO problem” He wanted me to see a pain management doctor – – -I refused because I did research online in connection to this and pain management doctors and I’m sorry – – – I don’t care to have botox injections. If I’m having botox it’s going to be on my face (lol) I’m now in a couple of FB groups that are truly great – – I appreciate the support and infor I’m getting and just reading and finally understanding I’m not alone…………however, that doesn’t stop the daily pain. I’m going back to my family doctor soon to discuss something I read on one of the groups an old old anti-depressant and a muscle relaxer – – all I’m taking now is Hydrocodone and I’m a zombie………I’ve never slept so much in my entire life. I glad I found this blog via one of the groups!! Thank you for having this. I’m signed up to follow and I will. Thank you for reading and anyone has anything of help to tell me please do. Thanks, Judy

    Like

    • You’re right, Judy. Knowing you’re not alone does not stop the pain. 😦 I did the pain meds to, but drew the line with percocet. That was what worked for me the best, but even that didn’t help after a while. They wanted me to try morphine next, and I was like, no can do. I stuck with the Percocet till I could get the mesh out. Luckily, I no longer take any pain meds.

      Are you sure your doc removed all the mesh? I ask because so very few do. That is why so many of us travel far and wide to go to Dr. Raz or Dr. V. I travelled from NY to CA to get my sling removed because the local expert UroGyn told me it was impossible to remove the parts in my groin where my pain stemmed from. Pain management is one thing, but often until you get the mesh out, things don’t get better. Please read; https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/

      I am glad you found this blog and the support groups. Thank you for sharing here, and please do keep in touch.

      Like

      • Dr V will not respond to me. Don’t have the money to get there anyway. Trying to get loan on house but husband said die bitch die instead.

        Like

        • Collena, Please contact Ucla Urology. Those doctors can help you. Please read about them. 3107947700.
          They DO Not need records before they see you. Make the call.

          Like

  3. For most of the people around a mesh injured women on a daily basis skepticism is still present even though they have watched a once vibrant active women deteriorate before their eyes. Our lives are consumed by pain that is hard to describe in words for there are none. We are isolated, hidden by a Medical Community that has been in denial for over a decade. Our Government and the Agencies that are in place to protect us have failed to do so. Legislators who regulate and oversee the manufacturers and protective agencies have control of both. Health and Safety and Commerce. Conflict of interest? Millions of Women have been implanted with these Mesh Medical Devices that were untested causing permanent injuries and No one will acknowledge the harm these devices cause. Conspiracy? It is unconscionable that the brutality continues, Human Experimentation, Greed over the Safety of Women. Sadly, we have had no help only from the support we share and give to each other. Thank Heavens for that.

    Like

    • Janis, thank you for commenting here, and for all you are doing to try to make a difference. It really is so difficult for anyone to understand the pain if they have not lived it… as well as difficult to grasp how this could be allowed to happen, and to continue, without doing some research and reading. That is one of the main things that bothers me so much… it’s all so…. AVOIDABLE.

      Like

  4. Mesh complications and unbearable pain has just about taken my life. I live with physical pain and can nearly walk. I have no energy. After numerous infections , the last one left me visualy impaired and a sloe brain. Due to the fact that it spread to my brain. Not to mention the coma, seizures , blue coding twice and a Pulmonary embolism and kidney failure .
    We need help.

    Like

    • Thank you for your comment, Nancy. I’m sorry you have dealt with, and ARE dealing with so much. Infections are very scary to me. They get deep into your system, and affect so much – everything! It’s not like the mesh problems are only right near the mesh. That is something many do not understand. It’s so so sad what mesh is doing to you, and so many. ❤

      Like

  5. I too have been afflicted with MESH in the form of a tvt tape as it was sold to me. I had not idea at all that I was getting implanted with Mesh and since first surgery 2 years ago I have had a further 5 operations and still have mesh implanted within me. I have no life at all now, just a shell of an existence. No money, no ability to get any kind of work and awful financial stress. Words fail me as I attempt to describe the rage I feel at having my body mutilated so badly. I look like a drug addict and am skeletal thin now due to pain and inability to eat or keep food down. I seldom leave my home these days due to the awful frequency with which I have accidents with leakage from both ends while out.
    These manufacturers and doctors truly need to be given a damm good thrashing for the agony they leave us in and then they have the bare faced cheek to tell us that is in our minds….

    Like

    • Teresa, I’m so sorry. =( Please do not go through this alone. If you haven’t already, please join one of the many support groups for women with mesh complications. And, is there any way you can get to one of the few experts? Like Dr. Raz? He can often help, when other doctors can not/will not.

      Like

  6. Best article I have ever read ! Your explanation of this horrific device is spot on. A judge should read this and just automatically award us a settlement that will afford us some comfort to live our lives.. Now that our health was stollen from us for free.. We didn’t asked to be maimed ! The worst part for me is knowing they aren’t stopping this.. In fact I just went to a seminar of my implant Dr. Sponsored by AMS. To over 100 in the room. Said he has done thousands over these surgeries and no one has problems 😡😡then he remembered I was in the room, and commented, oh, unfortunately I do have one patient that had had complications… Yep you heard it 1!! 1!! Yep I’m the only one who vagina has eroded away 25%!
    Again, wonderful blog 😘

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    • Dawn – Thank you for your comment… and for standing up to your implanting surgeon regarding mesh. It is just amazing that they can keep marketing and using this crap, when it is causing so much damage. Especially when it is NOT necessary. That is the most infuriating part of all this, I agree.

      Like

  7. I too am a mesh victim, your post is my nightmare. I had mesh bladder sling implant sept 09 @ only 26 after my 3rd pregnancy was twins. An active young army spouse of 4 young active boys. Since that surgery my life fell apart,I fell apart,I didn’t go down without fighting for my life,marriage and kids. I fought and fought and still fighting. Now I’m bed/home bound in need of homecare and assistance. Imprisoned by severe suicidal pain in which I have no hope in sight to continue to endure. Within 3 months my now ex husband started cheating became abusive, unsupportive and made my daily life a prisoner of domestic war. He set me up to take my kids all while tormenting me. I was helpless,hopeless, told everyone even NY family n friends I was addicted to pain killers and i was crazy. No one would help me. Actually child protective services had his back and insisted I but use opoids in my doctors treatments plan in pain management. I was haloing myself. I was the military lab rat that exposed mesh hell, I was happy,healthy active. Used to unknowingly to tests mesh. This is not ok. I did try suicide several times, as did my ex make attempts on my life. The hell he put me through ya nothing compared to pain n suffering of mesh. Sparc sling AMS.

    Like

    • Amanda,

      I am so sorry you are dealing with all this. =( You are not alone with how you are feeling, and how you’ve been treated. It’s not right, and yet – it keeps happening. =(

      Is there any way you can get to one of the few specialist doctors that deal with mesh removal and non-mesh repairs? There are not enough of them, and most doctors will offer a partial removal and/or pain management. Myself, and many others in the support groups believe that getting all the mesh out, or as much as possible, and having an further repairs without mesh are key. Unfortunately, there’s not many doctor that will do this. That was why I went all the way to UCLA to Dr. Raz. Many doctors will say they trained with Raz…. but, that does not mean they have the same experience/skills, or even the same opinions about mesh (since Dr. Raz no longer uses mesh, and most other docs still do). So, just be careful there.

      This blog post, and the links at the end of it may help: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

      Are you on Facebook? There are support groups with many others dealing with mesh complications. Please try:
      – The :Women’s POP/SUI TVMesh Complications Support” group (Closed group):
      https://www.facebook.com/groups/317477065098820/

      – And for general info in a PUBLIC/OPEN group, see:
      https://www.facebook.com/groups/meshproblems/

      – I also started a support group at: https://www.facebook.com/groups/MeshMeNotNY/ – it was intended for people in NY – but, there’s a few from all over. Feel free to join if you like. It’s rather small still, so I would recommend joining the larger groups too for feedback and info.

      I feel that it’s important to ask around and get feedback on any doctors in the groups. You can also search the groups for the doctors name using the search tool at the top of any Facebook group to see past threads, comments.

      Please do check out the links… and I hope you get good feedback from others in the groups too.

      I hope this helps a bit. Please hang in there!

      Deb

      Like

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  1. It’s NOT enough. We need help!

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