Living in Mesh Hell

Dear Whoopi,

When women write to me directly, they do so because they feel shame and because they cannot find doctors who are willing to admit that mesh is causing their symptoms. They often live in agony for years and they are passed from one doctor to another, test after test that show nothing and offered surgeries they don’t need. It is a travesty of injustice. That is why I am asking both you and the ladies of The View to take up our cause to save women’s lives. Yes, it is that serious.

 

The following is an email I received yesterday from a young mother. She has been living with mesh complications for ten years Whoopi. Can you imagine that and having no one believe you? I am sharing part of it here so that you can understand what is going on with women’s health. I have removed some of her email and her identity. This is the first part.

 

I’m a 38 year old mother of three. The reason I decided to finally do some research is because I’ve been in a lot more pain than usual these past few weeks. When the news went public a couple of years back about the dangers of mesh, I am embarrassed to say that I purposely avoided it because I was scared to face it. Honestly I’m even more scared now. Mainly because I know that something is wrong with me I’m just not sure what it is.

How can I be 100% sure that it is the mesh causing me pain and problems. Especially after the doctor tells me everything looks fine. Last visit she did a vaginal ultrasound to see why I was hurting and she said the pain was probably caused from me ovulating. I don’t know who to turn to for advice or what doctor to trust for real honest answers. That’s why I’m writing to you now.

In 2003 I had a partial hysterectomy due to endometriosis and because I was having leakage issues, the doctor told me he would kill two birds with one stone. No worries he said, my female organs would be like they were before the babies. I was so stupid!

 

 

Whoopi, let me address this issue. First, women blame themselves when they feel they should have done more research. Known better before they trusted their doctor. Whoopi, isn’t that what we are all taught to do? There is only one hospital in this country that is doing a test called the transvaginal ultrasound. It is the ONLY test that can find and see mesh before a surgeon goes in to remove it. Without that test, a surgeon goes in blind, the same way he/she does in the original procedure of putting the sling in. Yes it is called a blind procedure. Can you imagine wearing a blinder during any surgery? But this happens around the most delicate regions of a woman’s body. Not only that but through the pathways of the nerves that control our very movements. Once those nerves are damaged, a woman will live on pain medications and have pain pumps installed, just so that she can get out of bed and try to do a few chores or care for her children. That is the legacy of mesh slings. This link will take you to a blog I wrote about the transvaginal ultrasound. Dr. Raz at UCLA is a pioneer of the test. Even the best surgeon in the world does not just rely on his own experience.

All about the translabial ultrasound http://meshangels.com/2012/09/mesh-removal-the-translabial-ultrasound/

I know women who I can put you in touch with who are alive because of him and his abilities. One contacted me after she was opened up when she was so ill, closed up again because there was so much infection and told to go home and put her affairs in order. She was left to die Whoopi. Then she found me and she now lives. I know she would love to speak with you and share her story.

 

More from the young woman.

After the original surgery I was in terrible pain but I also became very depressed. As time went on I think the doctor believed the pain was in my head because he put me on antidepressants. I never felt normal again and after a few months went by I was peeing on myself more than ever.

It was awful but I stopped complaining because I felt like I was bringing my family down by being negative. A couple of years later our insurance changed so I had to find a new doctor. I chose a female gynecologist this time. By then the leakage was so bad I was thinking about adult diapers. I was only 32 at the time.

So this doctor told me they had some newer type of bladder lifting procedure that was so good and easy to do and it should last me forever. She said it was like a little hammock would be placed under my bladder. I told her that my last doctor tried something like this already but she said this was different and I would have much better results this time.

Stupid me again!!!

I’m not even sure what 2 foreign objects I have inside my body right now. But I am sure that my bladder was never fixed. And as the years go by the pain is getting much more difficult to tolerate and it’s getting harder to do the things that I normally love doing. I’ve taken so much ibuprofen over the years that it kills my stomach now if I take it.

 

Whoopi this is the answer to every woman who complains of pain after the sling has been placed in her body. ‘Here are some antidepressant pills. It is all in your head.” Whoopi, I get angry on a daily basis because I know women should be helped much sooner so that they can raise their children again. You should also be aware that some women have two or three sings where a different doctor has placed yet another over the original. It is outrageous in my opinion!

 

More from the young woman. You will read the horror of what she has been dealing with for years.

 

Here are some of my symptoms:

 

My bladder will feel extremely full but when I go, only a few drops will come out, and if I hold it in too long, sometimes I will vomit.

The only way to completely empty my bladder is by getting in the bathtub on all fours.

When I cough it sends excruciating pain to my lower abdomen. And I feel like my insides are going to fall out.

It’s painful when I sit for long periods, or hit bumps while driving. No more four-wheeler rides with the hubby.

I saw people on your blog complaining of hip & groin pain, I have that too.

I also get golf ball size boils on my inner thighs, which are also very painful, not to mention gross.

It hurts to lay flat on my belly.

I don’t have much of a sex life but when I do I just suffer through the pain and sometimes when we’re done I run to the bathroom and vomit. (Talk about ruining a romantic time it’s so humiliating)

 

Whoopi I am someone who they can reach out to when they are ready to accept the fact that it truly is the mesh doing this to them. Or they have done everything possible and nothing has relieved their symptoms. But they also need more than medical attention that just the surgeons at UCLA. These women need mental health, not because they are crazy but because they have so much to deal with. Loss of health. Lost of partner. Loss of children. Disbelief of those around them who have heard doctors say “There’s nothing wrong with her”. The loneliness and isolation when everyone gives up on them and decides it is definitely all in her head. This is why my blood boils on a daily basics when I read what has happened to women. It is a shame on this country and our medical industry!

 

More from this young woman.

Linda, you are the first person I am telling about some of these things I’m experiencing. Which is probably why my family gets aggravated with me, because they don’t know, they just think I never like doing things with them anymore. But the truth is I just don’t feel “up” to doing much at all anymore.

Do you believe my issues that I’m experiencing are from this mesh inside of me???

How do I find out for sure?

Also, to make matters worse, I have none of my medical records. I told you I was stupid!

 

Whoopi, this young woman is intelligent. She wrote a lovely essay about her situation and I answered her. I gave her link to where she can find hope and I begged her to make the call to UCLA soon. This is that link.

This link will take you to many links so that you understand the journey it takes to remove mesh and how important it is to go to the right doctor. http://meshangels.com/2013/02/mesh-is-a-journey Whoopi, I call this part of my journey chapter one. That is because it is not over. In April I will have another surgery and I will begin chapter two of this awful journey. I am praying that there will not be another one. But then I am one of the lucky ones. I went to UCLA to have it all removed by the best surgeons in the world. I am forever grateful.

 

 

Once again from the young woman and mother.

Whenever you have time, any info you can give me will be greatly appreciated. Thank you so much for starting your blog. It was the only thing I could find on the Internet concerning mesh other than the lawyers looking for clients. I’m not interested in a lawsuit, I only want to get my life back. I’ve been feeling so low lately and reading your blog gave me hope. I think it was the wakeup call that I needed, to face this and stop ignoring it.

 

Thanks again for doing what you do.

Love,

Another victim of mesh

Whoopi, at the end of yesterday, only one day after her lovely and yet distressing email, she sent me another. I was thrilled. However, now this young mother and her family will bear another cross. How to care for her children while she endures a long time of surgeries and healing. She should also be given mental health as well as meet with other women who have gone through this. So Whoopi we need the help of you and any women who could speak out and raise funds for the healing house I spoke of in my last blog to you.

There is a tiny village of women who joined me in talking to women over the phone. Getting them through on the worse days of pain. Giving them cyber hugs when they feel no one cares. We do all this, but we are stretched to the max. We need you. Please help us help them so that women can live their lives, raise their families and enjoy the simplest of things again. Right now they can’t. That is the legacy of mesh.

As I said, I heard back from this young woman late yesterday. Dr. Raz travels a lot and he is booked up for a few months so I suggested she would get in sooner if she got her consult appointment with one of the other women. She is.

Hi Again,

 

I just wanted you to know that I called UCLA today and registered to get my patient ID #. When I was done they connected my call to Dr. Kim’s office. The lady there told me to call back tomorrow to make the appointment because it takes up to 24 hours for my registration to be logged into their system. So thanks to you, I finally took the first step. I know you’re super busy helping everyone, so please don’t worry about replying to this email.

 

Whoopi, this made my day. I wanted to jump for joy that she will get help before she lays in bed day in and day out dying slowly and often alone. That is the legacy of mesh. Thank you for reading this.

7 Comments

  1. a meshed-up nurse

    Dear Whoopi, Linda spends many hours of her days and nights helping women get information to help themselves out of these horrible situations that are caused by synthetic mesh implanted in the body. She is doing this because women are not getting the answers or care they need from their own doctors. Doctors mistakenly think that if they don’t actually see or feel the mesh during a vaginal exam or see it in the bladder or urethra during a cystoscopy, then everything ia a-ok. Nothing could be further from the truth. The mesh could be infected or adhered to the wall of the bladder or rectum or in the wall of the urethra (tube that urine goes through after it leaves the bladder) and the doctors cannot see that. It has been shown that mesh can shrink 30-50% after being put in the body! CT Scans and MRI’s don’t show mesh- only the translabial ultrasound. As a nurse and mesh injured woman, there’s NO question in my mind that the young lady that Linda is writing about is suffering from mesh complications and that by going to UCLA she wil finally be able to get the help she so desperately needs so that she can try to get on with her life. Whoopi, there are so many just like her, but many do not have the insurance or finances to make the trip. Whoopi, please hear the pleas of your harmed and injured sisters. Thank you for reading Linda’s blog and this..

    Reply
  2. KETURAH J. PERRY

    THIS IS ALL THE VERY SAME THINGS I’M DEALING WITH. I’VE BEGAN TO THINK MAYBE I’M JUST CRAZY. THE FIRST SURGEON I HAD, 3YEARS AGO, JUST SEEMED TO THINK I WANTED A LAW SUIT. HE ACTUALLY STARTED TO LAUGH AS I TOLD HIM SOME OF MY CONCERNS. I AM BED RIDDEND, & HAD A FOLEY FOR A LOT OF YEARS.I BECAME SEPTIC 2 DIFFERENT TIMES BECAUSE OF INFECTIONS (UTI’S) & KIDNEY INFECTIONS. THIS WAS VERY WORRISOME BECAUSE OF MY DIABETES. I HAD ENDOMETRITIS ALL MY YOUNG WOMANHOOD, I WAS TOLD THE ONLY CURE FOR THAT WAS THE HISTORECTOMY. I DID THAT, I HAD A COMPLETE HISTORECTOMY.IT COMPLETELY HELPED WITH THE SEVER BLEEDING, SO I WAS SURE I DID WHAT WAS RIGHT FOR ME. THEN I REALLY STARTED HAVING TROUBLE WITH LEAKAGE,.AFTER A LOT OF TEST & TIME. DOCTORS FELT WITH ME BEING IMMOBILE, CATHERIZATION WOULD PREVENT BED SORES, & ANY INFECTIONS COULD BE CARED FOR BY ANTIBIOTICS,IF I HAD ANY. I HAD A LOT OF UTI’S & MED. NO LONGER HELPED ME ANYMORE, SO THE DR. @ UT SAID,’ A SLING & SUPRA PUBIC WOULD KEEP ME FROM HAVING SO MANY INFECTIONS & WOULD REALLY HELP ME WITH THE LEAKING. STUPID ME, I FELT THE DR.’S WOULD ONLY DO WHAT WAS BEST FOR ME, SO STUPIDLY, I JUST DID WHAT THEY SUGGESTED, I DID NO RESEARCH ON THIS, WHAT AN IDIOT! ONE DR. EVEN SAID, ‘IF MY MOTHER HAD LEAKAGE LIKE YOU, I’D HAVE THIS VERY SURGERY DONE ON HER.’ MASSIVE AMOUNTS OF PAIN, NO SEX LIFE BECAUSE OF PAIN, & NEVER FEELING JUST QUITE-UP-TO-PAR, DAYS OF FEELING BAD & JUST GETTING WORSE. FINALLY MY P.C.P. SUGGESTED TO SEE ANOTHER UROLOGIST, ONE THAT SAW ME ON ONE OF MY MANY HOSP. STAYS FOR UTI, DEHYDRATION, N&V, & GROIN & FLAKE PAIN. THE HOSP. STAYS HAVE BECOME MORE FREQUENT, NOT LESS, AS I WAS TOLD.IN THE LAST 3 YEARS I’VE HAD 5 OPERATIONS.I CAN’T BE THE PERSON I WANT TO BE. I’M TIRED OF BEING, SICK & TIRED ALL THE TIME, HELP ME, SOME PPL THINK THIS IS JUST TO HAVE A LAW SUIT,WELL ATTORNEYS HAVE SAID I HAVE A GOOD CASE, JUST SAY WHEN,BUT THAT’S NOT WHAT I NEED OR WANT, I WANT TO FEEL LIKE MY OLDSELF, I’M JUST 48Y/O, NOT 84Y/O LIKE I FEEL. PLEASE HELP ME!!!!

    Reply
    1. lavalinda

      Keturah your comment is invaluable. There are thousands of women suffering just like you and live in bed. This is why I write these blogs. We want no more of this.

      Reply
  3. Susan Thomas

    Yes, this is hell , it is taking my life away before my eyes… It will be ten years in 2015, ten years of having mesh inside me. I am seeing Dr.Raz for the first time this July, I have a bit of hope now, hope that maybe there is an end to all of this suffering.

    Reply
    1. lavalinda

      Yes Susan and I am afraid that this will be an epidemic without Dr. Raz to help so many women. I am just grateful for every day he is on this earth, doing what he does.

      Reply
  4. Sharon

    I too have been suffering from vaginal mesh and the sling. Please tell me how I can contact the view cast? I have searched the internet without any success. I would appreciate your help.

    Love,

    Sharon

    Reply
    1. lavalinda

      Sharon I kept dropping links in their Facebook page, but not one response. I finally gave up which is I am sure what they want. Networks are ruled by sponsors and money. We can’t beat the big boys. But we can use our voices and tell every woman we know and any we meet.

      Reply

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