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.
I 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.
No, 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 problems – leaking 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.
Since 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?
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?
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.
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 (firstname.lastname@example.org). 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.
==============Related Blog Posts================
- It’s not your fault.
- Are you a GOOD mesh? Or a BAD mesh?
- Are you Sick and Tired of Lawyer Ads about MESH?
- Doctors Promoting “New” Mesh
- It’s NOT enough. We need help!
- Mesh-Injured People: NOT rare. NOT going away. NOT getting SUPPORT!
- 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”?
- Top 10 Myths Woman are Told Today about Pelvic Mesh
- Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI
- Mesh Not Alone (Public Group)
- Women’s POP/SUI TVMesh Complications Support (Closed Group)
- Fighters And Survivors of All Transvaginal Mesh And Hernia Mesh/Plugs (Closed Group)
- Mesh Me Not – Upstate NY (Closed Group)
- Mesh Problems (PUBLIC/OPEN TO ALL, including doctors, etc)
- More resources listed on the footer/main page of this blog!