It’s NOT enough. We need help!

By DebCNY • 2015/01/05

Some 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:

OPEN/PUBLIC Groups:

• Mesh Me Not (OPEN/Public PAGE)
• Mesh Problems (OPEN/Public Group – Open to ALL, including professionals, family members, doctors, etc.) 

CLOSED Support Groups:

• Fighters and survivors of hernia and all vaginal pelvic surgical mesh (Closed Support Group)
• Mesh Me Not-Upstate NY (Closed Group)
• Women’s POP/SUI TVMesh Complications Support (Closed  Group)
• MDND – Mesh Medical Device Facebook Group (Closed)

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

• Mesh-Injured People: NOT rare. NOT going away. NOT getting SUPPORT!
• Are you a GOOD mesh? Or a BAD mesh?
• Searching for Docs Experienced with FULL Mesh Removal, and/or NON-Mesh Repairs
• Partial vs. Full Mesh Removal Surgery
• Were you told that you were the “only one”?
• Patient Profiles (MDN)
• Top 10 Myths Woman are Told Today about Pelvic Mesh
• Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI

==============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: 

• Women’s POP/SUI TVMesh Complications Support (Closed Group)
• Fighters And Survivors of All Transvaginal Mesh And Hernia Mesh/Plugs (Closed Group)
• Mesh Problems (PUBLIC/OPEN TO ALL, including doctors, etc)
• More resources listed on the footer/main page of this blog!

===============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!

Tagged as: American Urogynecologic Society, AUGS, Bladder Prolapse, bladder sling, desperate, Dr. Raz, FDA, FDA warnings, greed, help, hope, incontinence, Mesh, mesh complications, mesh survivors, need help, not alone, only one, Pelvic Organ Prolapse, POP, Stress Urinary Incontinence, SUI, support, surgical mesh, TVM, TVT

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

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