Live Don’t Die


It is a very wet January morning and I am sitting here contemplating whether to spend my precious time writing a blog or to go and work on my creative projects which will help serve our dog rescue. My time is precious to me these days, but I cannot get the words out of my mind that yet another women left in a comment on this blog, so I have no choice but to write. This is what she said.

Hello,
I had surgery for incontinence in April 2009. I was told by the doctor I was going to have mesh surgically placed under my urethra to lift it up because I was having stress incontinence.

Just shortly after I noticed I had something sticking through my vaginal wall. Like a dummy I tried to tug slightly but found it painful. I immediately called my doctor who performed my surgery and made an appointment. I asked her why did you sew the mesh into my skin? She said she didn’t sew the mesh into my skin it was because I did not heal properly after surgery, and if I wanted it removed I needed to lose weight. Horrified I thought I just had surgery and I have not gained any weight. What the heck was she talking about?? So, I just left it at that.

In about 2011 I started having pain in my legs and I started falling when I walked. I never associated it to the mesh and neither did my PCP. My complaining to her went on for 4 years as my symptoms started to get worse and I fell quite often because I was getting weak in my legs and they were feeling heavy. My PCP was of no help to me until 2015 when she finally decided to refer me to Occupational Medicine which I thought was strange.

Anyway, that doctor gave me a shot of cortisone in my left hip but didn’t do the right because she wanted to see if that would help. It didn’t so I never went back to her again because she said there was nothing else she could do. I decided that after hip x-rays and blood work and my PCP having no solution I was going to go with a different PCP.

In February 2016, my current doctor after examining me and knowing my complaints and where I was having pain, which by the way had progressed quickly, he decided that I have Fibromyalgia. I was prescribed different drugs and I was sent to PT and a pain psychologist. I still had no relief. Here I am 1 year later and I am still in a lot of pain and I can’t sleep for nothing. I have been in email contact with my PCP and I went in to see him to discuss if the mesh was causing my pain, and that I was leaking urine because I cannot hold it anymore. I was referred to a different Urogyno because I did not want to go back to the doctor who performed my surgery because she made me feel like I was crazy.

Anyway, the new doctor called me yesterday to get an idea of what was going on I explained it to him and he said, ” I am 100% positive the mesh did not cause the pains that I have in my pelvic area and it would not cause me to struggle to walk” he said, and I quote, “you got the good kind” referring to the mesh. Hmmm there’s a good kind AND a bad kind?? I asked him about the removal of the mesh and he said he wants to examine me before he can make that decision. That’s understandable. He also said removal of the mesh could do more harm than good. What?? Well now I have to wait to be seen. He wants to do a cystoscopy.

This is not a good time in my life. I work in a school and I do a lot of walking and sitting, and this is extremely painful for me, my job is at risk because I cannot perform the job duties that is outlined for my position, even though a lot of it is not what I do. I’m terrified and so are my kids, they are adults so they can take care of themselves but they do a lot for me because it is difficult for me to do a lot of things, and I hate that! I want to go back to my old self before the surgery.

My quality of life has been in a decline and it’s getting worse. My legs gave out on me a couple days of days ago in the shower and I fell. I have a big bruise on my backside from hitting the spout after I got help getting out of the tub I emailed my doctor and he was kind enough to call to see if I was ok. I have expressed to him many times that the pain is so bad that you don’t want to live anymore because you don’t see any relief from it in the future. The sad part is that I have no one else to talk to about it, I stay to myself because I’m embarrassed to tell people why I can’t go out with them. It’s easier for me to avoid being in that situation.

This woman is smart and articulate and yet she is unable to stop for a few hours, look at what she has written and evaluate it herself. So, I am going to do it for her, to hopefully help her and other women.

She has been suffering since soon after her surgery in 2009 which is EIGHT years ago and yet she has learned to live with it all. Why? I suggest it is because of fear! You may wonder why I write this. It is because it is the biggest thing that holds us back from moving forward.

She said the mesh was sticking through her vaginal wall at that time which means she has been suffering for EIGHT years and no doubt she has been taking something for the pain. Not only has she now been compromised from the mesh, but also from whatever she has been taking which I am sure has been readily prescribed by the doctors who are happy to let her die.

You will note the doctor decided to blame the issues on her weight, however didn’t refuse to do surgery for the incontinence because of it. You will also note that she said she will remove it IF she loses said weight. Why is that?

Well, obviously, she was a lousy surgeon to begin with and left her patient living with a mess and did not try to clean it up. However, I can tell you that can be a blessing because had she done so or someone else ‘try’ to remove it, her life could have been in serious jeopardy.

Then she said she began falling, which is a huge warning sign. How do I know this?
You got it, it happened to me within a few months of my implant surgery and I wound up with an arm in a cast. Did my surgeon believe the mesh implant caused it? Heck no! Will any physical therapy or shots fix it? Heck no!

So, she changed her personal physician and what did she get? NOTHING!

So, then came the stupid diagnosis of Fibromyalgia. That diagnosis comes with a sign and a “I don’t give a crap attitude; I just want to get you out of my office”. This is where she wrote this comment on a blog I wrote about it a long time ago.

If you don’t accept their lies and bullshit, then you must expect these bad doctors will decide you are crazy and no doubt wrote it in her records.

So now she is in holding mode, waiting on a doctor who will undoubtedly only make things worse.

She states this is not a good time in her life, which I must say, there is never a good time in your life for any of this. I don’t know a single woman who had removal at a good point of her life. She did it because she had no choice and she wanted to live, rather than die a long slow death. I did the same.

So what can she do? She can continue messing around with bad doctors in her area or she can fight to live a longer life. If you are doing the same, then it is time to take charge of your life and make a change.

There is no good point in your life for any of this and neither is there enough money to do it. You just have to decide if your life is worth it.

Here are some blogs you should read.

http://www.meshangels.com/dr-kim-ucla/

http://www.meshangels.com/dealing-with-fear/


5 Comments

  1. davon

    linda, i have not commented in a long time.. i still read everyday.
    Here i am , almost 2 years post op total removal with Dr.Shlomo Raz at Ucla.. very thankful for YOU and Dr.Raz.
    This poor lady.. her story sounds so familiar. you know this.. She is not alone. i hope and pray that she will do whatever it takes to get to ucla.
    it.can.be.done…
    we have a very dear friend that stays in horrible pain, but yet she crawls in her car everyday to drive for uber to get extra funds. we also have another friend that does her own flea markets and fundraising to get her extra funds. I know there is more but these two ladies stick out in my mind every single day. they ARE DETERMINED. it takes that.

    dear school worker, i am very very sorry that you are living this life. it is a horrible life to live. i lived it. many many more have lived it/are living it. please don’t give up, fight your way to ucla. you will not be sorry..
    read this entire blog.. you will learn a lot.

    thank you linda. xo

    Reply
    1. Linda (Post author)

      Thank you Davon. Anything is possible if you don’t leave it far too late.

      Reply
  2. Pam

    God Bless you both ….Linda and Davon. I struggle but won’t give up or give in to the Mesh and its hell that can drag me down . I push myself to work , and whatever I can so I can make it to the sweet , wonderful , caring Dr Raz . Again if it weren’t you two I would not be where I am now .

    Reply
  3. Kathleen Benner-Hart

    Is there another option instead of Mesh? If so, what doctors do it?

    Reply
    1. Linda (Post author)

      Kathleen I wish there were great alternatives http://www.meshangels.com/sling-types-informed-consent/

      Reply

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