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

Lawyer Ads are NOT Enough. We need HELP!

Lawyer Ads are NOT enough. We need HELP!

I was moved to tears again last night while  reading a letter a woman emailed me.  It was 3 pages long, and detailed several surgeries and a myriad of problems she has had since having a mesh implant for minor problems with incontinence.   I am not a doctor, and I had never met or talked to this woman before receiving her email.  But she is desperate for help, and she hoped I might be able to help her, find help.  Finding help, it turns out, is much more difficult than it should be.

I began to read her letter, as I sat beside my husband on our couch watching TV.  I suddenly realized my husband was no longer watching TV.  Instead he was staring at me, worriedly, as he watched the tears roll down my face.  “What’s wrong?”, he asked me?  I shook my head.  “So much is wrong”, I thought.

I tried to explain I was reading a letter from someone – another person suffering from mesh. A stranger that had contacted me through my blog, telling me about their mesh problems.  My tears were not for me…  or even for anyone I knew.   They were for this stranger, and for their situation…  but also they were about so, SO, much more.  My husband gets it, because he has had to endure this mesh saga with me since Feb 2012.  I am so lucky to have had his understanding and support all this time.  Many, are not so lucky.

meshI am no longer surprised

by the horror stories I hear about mesh complications.  Women telling of surgery after surgery they have had to try to remove mesh.  Or about doctors telling them they removed all the mesh, only to later have another doctor remove a little more… and  a little more.  I am not shocked anymore to hear of dismissive doctors and un-diagnosed and mis-diagnosed medical problems that often go on for years.   Life-altering complications that often just keep snow-balling into other issues.  I’ve heard from far too many women who were told “it’s not the mesh”, or that they were “the only one” to have such problems.  Too many have complained that their doctor told them there was nothing more they could do to help… that they should just go to a pain management clinic and learn to live with it.   Worse, I’ve heard from too many women who were told there was nothing even really wrong with them – and that their pain must be in their heads. Some of them could not even get help for pain management.  Many, so traumatized by doctors not wanting to deal with them, or with mesh, that they in turn are afraid to go to any doctor.

No, I’m not a doctor.

I’m not a medical expert at all.  I make that clear on this blog over and over.  I’m also not a lawyer, and I’m not affiliated with any law-firms or doctors.  There is not a lot I can do to help women who contact me, really.  I try to be supportive, and let them know they are not alone.  I try to share information & resources – not just my opinions.  It hardly seems like enough.  I wish there was more I could do.

But, there is one thing I do:  I believe them.

I believe these women who contact me about their mesh complications, because I had my own problems with mesh, and because I have researched this a lot, and because I was appalled at all that I learned.   I also believe them because I have heard similar stories before from too many others.  Far too many.  I know they are telling the truth about going to doctor after doctor, specialist after specialist, and not getting anywhere but more hurt.   There’s TOO many saying the same things for it to be some kind of lawyer-ad induced frenzy.

alone-gNo, this IS happening.  And, I feel their frustration.  I feel their pain as they describe not only their physical pain, but just how hurt they feel emotionally.  They will say how they no longer feel like a good wife.. or mother.  The word this woman used in her letter, and is very fitting, is “broken”.  They feel broken.   They are often desperate for any real validation and help.  Desperate for any relief from their pain.  More than a few are even suicidal.

I remember how I felt when I was at my worst.

How broken I felt.  I hated feeling like a burden to my husband and children.  I hated feeling like some old, decrepit woman, when I was only in my forties.  I hated feeling dependent on anyone.

In a post wrote called, “Never Forget“, I shared things I had written when I was down, like this:

“I do not consider myself a weak person, at least I never did before recently – but now, well? Now, I’m not myself. I hardly recognize myself. I HATE this. When did I become so freaking weak and useless?? I feel like an invalid. I’m 46 and I can’t freaking walk my son’s homework up some steps and into his school if I need to…. WTF? =(”
 – DebC  (from, “Never Forget“)

Yet, even though I had a good taste of these feelings, I do not think I went as far down into that black hole as many of the women I’ve talked to have had to go.

Still, I can relate, and when I read things like this woman’s letter –  yes, I cry.

A Cry for HELP

The woman who wrote me recently, gave me permission to share parts of her letter.  There was so much in the letter…  Details of her ongoing, and surmounting, health issues, and just how debilitating they are.  Things I would not wish upon my worse enemy.   Surgery after surgery. Doctor after doctor  – simply not helping her.

Here are parts of what she told me:

“In 2011, had my surgery Transvaginal Mesh Implant.  This was after my 3rd child and I had started having problems with incontinence.  I was 33 years old.   After that my life turn into a living Hell.
…..
I couldn’t pee and the little I could was with a burning sensation, abnormal bleeding and my stomach inflated.  
I was given medication for infection.   I went back to the doctor that put the mesh implant in me and that doctor said they would fix it with another surgery.  He proceeded to loosen my bladder by pulling it down. After that surgery my problem got worse.  Now I could pee but couldn’t empty my bladder.  I kept bleeding everyday. Lots of pain on my left leg, pelvic area, lower back and swollen legs.  I  didn’t understand what was going on and I asked the doctor and he said that maybe my problem came from somewhere else and that didn’t have anything to do with him or his surgery.

“I went to the emergency department where they said they could not help me.
…..
I found a doctor that evaluated me and proceeded to do my 3rd operation and said that she would remove all my mesh
After the surgery I felt relief on my left leg, but I still continued with lots of pelvic pain.  I kept bleeding everyday.   A few month passed and my problems became worse.

Then I went to another gynecologist and I explained what was happening. He told me of a urogynecologist that maybe could help me.   This Urogyn told me that she’ll remove the mesh, for my 4th surgery.  She did the surgery and I asked the the doctor if she removed the rest of the mesh?  She told me she “cleaned” the left side but that I still have mesh on the right side.   She told me I should leave it like that.  
But, I still had more pain and leaking urine during the day, and still kept bleeding everyday.

After that I went to pain management they gave me 6 injections with steroids, my sugar levels went high.


Went to another specialist that recommended pelvic therapy to help with my leakage of urine  – but, it doesn’t help me.


I went back to my gynecologist again and he told me he’ll help me.  He did a 5th surgery that was a endometrial ablation that helped with the bleeding. .. but the pain continued on my pelvic, groin, anal and vaginal areas, and now even my stomach.


I went to a stomach specialist he did a colonoscopy and endoscopy and the only thing he found was a lot of scar tissue.  They said the scar tissue makes you feel pain but that he can’t help me with that…  
felt I was going crazy from all the pain.

It’s been impossible to have sex with my husband.
I’ve grown tired from seeing so many doctors, but the pain pushes me to look for help.

I went to another urogynecologist and I explained about my pain and scar tissue and the inability to have sex with my husband….  They did not think they could help me.


I found another urogynecologist and he did the 6th surgery on me and he told me he was going to find and remove mesh, and scar tissue.  He said there would also another doctor there during the same surgery that was going to inject Botox in my anal area.  After the surgery my stomach pain got better and the anal area as well, but the pain in my pelvic, leg and lower back became worse.   I went back to the doctor and he told me after a few weeks that all the pain was going to get better and better… but, a month later I have the same problemsleaking urine, spot bleeding and pain.  I asked him if he found and removed the mesh and he said he removed the scar tissue but there was NO evidence of mesh.  ?  I couldn’t  understand  because before that I had been told by the other doctor that they only removed the left side of the mesh, but not the right side. ?
He responded that it could be something else besides the mesh, and said  “not everything is the mesh’s fault”.   He told me he thought I had endometriosis.  He recommended yet another doctor to me.
….
I left his office crying.

~ Yudelka (who recently started a group on Facebook: Mesh Not Alone)

Update:  Yudelka has since gone back to her regular GYN and told them all that happened, and questioned the possible diagnosis of endometriosis, asking how they could have missed that if that was the case?  She said that her GYN doctor put his head down, and said, “it is not endometriosis.  It IS the mesh”.   Finally, she heard a doctor say, “it IS the mesh”.  She told him she had heard of Dr. Raz, and was hoping to go see him at UCLA, and her doctor told her that was a good idea and he would support her on this if she could go.

So, I’m asking –  WHY did she have to first go through ALL of this?? Why did she have to hear about Dr. Raz, or of the possibility of a specialist doctor for mesh complications, through her own research?  She still has to wait months, and find a way to travel across the country, etc.

It’s maddening how so many just get passed around and around from doctor to doctor the same way… and are told so many of the same things.  Like, “I can’t help you“,  “learn to live with it“,  or “it’s not the mesh“.

Many doctors just don’t seem to want to get involved with anything to do with mesh.  Why are so few doctors actually helping women with mesh complications?  Why are so many doctors still using mesh, and so many doctors still denying mesh is even an issue?  Many doctors genuinely do not know how to help.  Mesh removal is next to impossible since it was not meant to ever be removed.  But, the denial of the mesh even being a problem makes things so much more difficult on the one suffering.  This absence of validation of pain, or acknowledgement of the mesh being a problem, or a diagnosis, means there is also no real treatment plan.  Just “try this”, “try that”, and “go ask someone else”.

I even had a woman tell me that she wished she had cancer instead of mesh complications, because at least then she would receive real treatment and care. How sad is that?

Along with the physical pain, comes the emotional pain.

 This feeling of being broken that this woman who wrote me the letter mentioned.    Here is more of the woman’s letter who contacted me. Tell me, how does this make you feel when you read what she writes?:

 

“Before the mesh implant, I was full of life, healthy with a wonderful marriage and beautiful kids.  …I gave to my family 100%.  My husband and I have a great connection, we enjoyed everything including, great sex.

why-women-crySince the mesh implant, my life has changed into a living HELL.  I am having trouble working and helping pay bills.  I remember one day that I had to help my daughter and I couldn’t because of the pain I had.  I kneeled on the floor while crying, and asked God, “why did you do this to me?.. and my family?”
“Before I tried to teach my daughter to have faith and to be positive against all odds, no matter how difficult the situation, and I wanted to make her stronger (because she has her own medical issues). Now I feel that I’m not a good example for her.  I heard my oldest cry, asking why his mother and sister had to be this way?   I have wanted to go to sleep and wished that when I woke up all of this is just a nightmare, but it’s not.”

“I feel that I’m broken.  As a wife – I can’t work, and I can’t have sex with my husband.  As a woman – now I feel insecure, with many health issues and unexplained symptoms.  As a mother – I can’t give 100% to my kids, the one’s I love the most.  I have cried so much and I have looked for help desperately, and have received a bad attitude from so many people.  I have felt like a piece of meat that nobody cares about.”

  ~  Yudelka (who recently started a group on Facebook: Mesh Not Alone)

Ultimately, many suffering from mesh wind up somehow feeling guilty – as if somehow this is our own fault. It’s not.  Bad things do happen to good people.  This really is NOT the patient’s fault.

 So yes, I cried.  It makes me so sad to know what she is going through.  Sad that I don’t have any easy answers for her.  Sad that this KEEPS happening!

More than sad, actually.  I am angry.

Angry that so many are NOT getting real help from their local medical professionals.   Angry that so many are still being largely dismissed by the medical community.  Angry that so many are STILL being implanting with new mesh that is actually still causing terrible problems.

The fact that this KEEPS happening is probably the most infuriating.

HOW can they STILL be putting these defective products into women left and right, and telling them they are safe??  Or not really explaining things at all??  HOW can they keep getting away with this?  WHY are so many doctors insisting the mesh you see in the lawyer ads is NOT what they use, and that the mesh they use is safe?  It’s NOT!!!

This is NOT the first time I’ve felt like this, and that is also very frustrating.  Depressing, even.  It takes it’s toll.

WE NEED HELP.

In another post I wrote, almost a year ago, titled, “It’s NOT enough. We need help!” , I wrote:

“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 current news surrounding mesh.  I realized I had a few 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 do get, either sent to me privately, or posted publicly are 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”

(Please see the full post at: “It’s NOT enough. We need help!”, for more real life examples, if your heart can take it.)

Why are the only ones paying ANY attention to this, the lawyers?  

LawyerAds

There are over 100,000 lawsuits against six different manufacturers, yet hardly anyone knows about this still.  Lawyers ads may help raise awareness, but they are not “news”.   Most of the people listening to the lawyer ads are the ones the lawyers are targeting  – those ALREADY injured.

Main stream media is ignoring all of this.

They don’t seem to want to run any real news stories on this.  Maybe because there’s not a celebrity involved?  Maybe they don’t want to tick off their own sponsors like Johnson and Johnson (who are also the ones involved in the Ethicon mesh lawsuits)?

 The FDA has failed us – first when they allowed these un-tested products to get on the market through the 510K process, and then by allowing this to continue as long as it has.   The medical community as a whole is failing us.   When will they stop MORE unsuspecting people from being used as guinea pigs?  Haven’t enough lives been ruined already? 

helpme

So many are suffering. 

Yet the media, doctors, & the government, are all conveniently burying their heads in the sand – while literally billions of dollars are being made on the suffering of patients.  

 It’s NOT right.

Help?

Please – if you are a doctor, or medical professional that is helping those suffering with mesh complications, and/or doing non-mesh repairs, please let me know.  Likewise, if you have gone to a doctor that has helped you, I hope you will also share this information.  We need more doctors that can and will actually help those in need, without using mesh.

Lastly, if you have a story you’d like to share on this blog – please comment below, or send me an email (mesnmenot.wp@gmail.com).  I am NOT affiliated with any law firms, or doctors, so there really is not a lot I can do – other than point you to some support and resources, help warn others, and get the TRUTH out about mesh by sharing our stories.

Thank you.

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10 Responses »

  1. Your words “so much is wrong” got me sobbing. I do not cry anymore I sob, grieve for all of my mesh sisters. Not one day goes by that I do not say “this is wrong, so wrong!!!”

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  2. I was talking to a doctor recently that I went to for something not mesh related. I mentioned I needed another hip replacement soon, so did not want any other surgery too.. and, then he shared with me that HE had a hip replacement a few years back, and that it happened to be one of the metal hip replacements that are also all over the lawyer ads. He said he was not having any issues (yet) himself, but that he received a letter stating the implant he had was “recalled”. And that they told him they would compensate him (nicely) for this, as well as pay for his surgery to have the device replaced – if he did that within 6 years of his surgery. So, he was debating on having the surgery or not – even though he was not having any issues (yet). He seemed to be miffed that it was hard to “recall” a product aready surgically implanted in him, and his biggest concern seemed to be taking the time to go through another hip replacement to have it replaced. Sure, that is not an easy thing… but, I could not help feeling how this is so NOT fair.
    What about all of us with defective MESH products? Why are WE not receiving any letters? And, not having ANY recourse? Instead, we have NO admittance that the mesh is even a faulty product. No plan or offer to try to make things right?? In fact, they not only are NOT recalling them.. but, they continue to PROMOTE these products and put more of them IN people. ???
    WHAT IS WRONG WITH THIS PICTURE???

    Like

  3. It terrible what is happening so many suffering .. It al about money they manufacture this mesh So any surgeon can put it in .. Without any thought to thre person having these meshes put in our body’s it not a natural materials that the body excepts .. It’s Polypropylene. A very foreign to us so the body reject it it encourages adhesions and traps nerves.. It has no give… It should never had been passed by the FDA..
    I had an incisional hernia a very lg on in 2006 had hernia 8×4 mesh put in right across the large bowel … I have troubles eating as it passes the mesh after eating and getting terrible pain,some day you do not wish to eat knowing it will give pain .. It is also full of adhesions that trapp the neves and a lot of other thing that makes life difficult…it does not matter were they put this mesh in our body’s there is a lot of pain and some days I can not get out of bed…. We should be heard about the suffering that we have to put up with… And l hope there is a big law suit to stop this suff being made…we need a strong advocate to speak on our behalf… Enough is enough .. Stop this insanity…

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  4. Thank you, thank you, for the information and guidance. I’ll forever be grateful knowing I’m not just a chronic pain patient; that there is something real dying inside of me.

    Like

    • Hello. I’m glad if you found anything on this blog helpful to you. I do hope you can find some support and help from one of the few specialist doctors that are actually dealing with mesh complications, and mesh removal.

      Liked by 1 person

  5. Hernia repairs are different now than a few years back when this kind of mesh was not on the market … I was never told that this mesh was going in me .. l was not informed of its complications .. all synthetic mesh is basically made up the same but each manufactures put in a different chemicals and give it a different name but mesh is mesh no matter were it’s been implanted
    But all mesh has polypropylene which is a plastic and it’s the common denominator that is making us sick ..the chemicals after a time leave the body .. but the plastic does not and it is toxic and give s a foreign body syndrome and plastic is non absorbing.. so it a dangerous subsense not meant to go into humans ..so Hernia implants are no longer safe or easy
    If it be Hernia or Vaginal it’s all the same but with a small difference in pain
    and complications … Hernia mesh that has been implanted turns the digestive system into a nightmare we all have to eat drink and go to the washroom but this mesh has adhesions with pull on the bowel twisteing making loops and narrow the bowel with leads to bowel pain a obstructions
    and the pain in going to bathroom is unbelievable. And people should understand this we are suffering badly as well as vaginal mesh implants and that is terrible as well and it should have not happened
    If anyone wants information on mesh .. go to the Canadian consumer law group and find we’re people have filled a class action suit against the makers of hernia mesh .. and the Hollis law firm in the US and it gives all about mesh information . I wish that l could find a excellent understanding Surgeon to remove this mesh that that l was told difficult to have out …
    Many people with Hernias that need repairing are saying NO to SYNTHETIC MESH. Only to day a 85 year old man .. started having terrible pain he had mesh implant in 2012 … so you may not have pain at the time of surgery but years later. and his mesh was on recall… and not informed .
    The truth is coming out finely… May Ist was mesh awareness day.
    If it was not true that mesh save and ok …. then why is it that thousands of us have the same after mesh have the same symptoms and problems …. if it was random than that was just unfortunate… but it’s not …. A good surgeon would sit down and tell you about mesh and what might happen or give you a options … but no they say nothing just lead you to believe it’s done the old way …pulling the wool over your eyes 👀 we put trust into our Drs to keep us safe
    but no money is more important than patients now days .if you are thinking of having Hernia implants do the research … theirs is a lot of thing you do not know Canada wake up and find out for your self
    You may wish to have synthetic mesh but at lest you will be informed .

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