Finding the Will to Live

Every day I check my blog for comments and answer them. The last blog I wrote was about a cancer causing drug that pregnant women took many years ago to stop from miscarrying their baby. However, that drug known as DES has caused long term damage to the babies of these women and heart break for the mothers. I heard from women, both mothers and daughters and although I can’t share what they told me because the messages were private, they were heartfelt and thankful to me for bringing this forgotten drug to light after a long period of darkness.

What I learned was that the aftermath of any drug can going on for a lifetime, just like the aftermath of mesh. It takes away people’s lives, not just the victims, but their families. In the case of DES it stole so much from mothers and their children and left a wide path of destruction and devastation.

A couple of days after I posted that blog I heard from a woman who wanted to tell her story. She posted a very long comment and two other shorter comments on other blogs. I began reading them and I felt a deep sadness for her. I believe she is afraid she won’t be here much longer, so I wrote to her a personal email. She did reply and told me where she lived and that she was waiting on the results of more tests, but was very afraid. I wrote back but have not heard anything else as yet. I will try to stay in touch with her so that she has some support and will know she can let loose, all her sadness and frustration on someone who understands.

As I read her comments I realized that some women have such a strong will to live and regardless of what they are going through, they still want to get the word out to help others. When you read her story you will be touched by how hard she has fought to live and it is because of what she wrote that I believed it deserved a full blog. This blog is to give her a voice.

You may read this and think what you are reading is quite rare, but sadly it isn’t. I know many women who have lived like this for a long time and some have had as many as twenty surgeries. I honestly don’t know how they deal with the PTSD of many, many surgeries and all the mistakes by doctors that happen to them, let alone the refusals of being helped by other doctors. It is beyond my comprehension as although I went through refusals of help by doctors when I was in serious trouble two years ago, this woman has gone through the same many, many times.

hippo2What happened to the oath doctors take? Did they remove most of it for a new generation of doctors? I have asked this question in other blogs because I have wondered about this many, many times when I read what happens to so many women across this country. The U.S.A is a country that many people envy because it looks as if living the American dream is marvelous. However, when you are down and out, other countries do not realize that money speaks volumes. This woman doesn’t have money and her story is more typical than you would think of people living in America. She is fighting for justice in a country that ignores justice when it comes to the medical world. This makes me very sad and yes, very angry.

Now you can read her story in her words. I did edit it to make it clearer because she is in so much pain, she struggles to write.

“I wanted you to know I have been following your page before you had your mesh angels and were doves I love doves, but your daughter’s design for Mesh Angels is more meaning full so I wanted to let you know how much your page means to a lot of women thank you.”

I want to interject a few comments in-between her words because she is the reason my daughter spent so much time designing the logo and continues to design for the future. When Kim and I spoke about the design we talked about all I had learned from women over the years and how they felt about their bodies. I wanted women who did not feel beautiful after so many surgeries, to know they are still beautiful women. Hence the female body shape with angel wings.

“I want to help educate women also so no one ever should have to go through this and also the families of women who go through this. That it is a life changing nightmare. So here is my mesh horror story.

It starts out with I was diagnosed with stage 3 rare cancer and told I had 30-50 percent chance to live and I was scared for myself my beautiful family. I said to myself ok I can beat this I’ll go through treatment and surgeries and lots of praying. One of my prayers was to see my son graduate and watch my daughter start high school. God answered my prayers on my 5th year and I was still barely kicking. So about a year later my platelets crashed and I just about died and it took a week for me to be coherent enough to know what was going on. The doctors said I needed to stop my chemo because it was killing me so I stopped chemo.

A few months later I was diagnosed with Graves’ disease and was told it wasn’t the chemo but a thyroid storm so after going back to chemo I started vomiting really bad couldn’t keep nothing down no matter what nausea meds they give me. My new pcp (personal care physician) said are you pregnant. I said doctors told me between chemo and radiation I wouldn’t be able to have kids and my husband I were ok with this because we have 2 beautiful children. My nurse was saying I know they told you this but let’s do a pregnancy test and sure enough I was pregnant. I was worried and scared and I did everything known to man to make sure she would be okay. God answered my prayers again with a healthy little girl who is now four years old. My chemo was a pill so doing all the vomiting was God’s way of keeping the chemo away from my little girl, so at three months pregnant I stopped chemo.

Now here is my mesh horror story. I prolapsed and my bladder was hanging out of my vagina so I went to a women’s health doctor and they told me I needed a hysterectomy and that I had a 3cm cyst on one ovary so they removed that ovary and left the other one. Little did I know there was a 6cm mass it was attached to the ovary removed and it was never discussed with me. I read this in op report and couldn’t discuss this with the doctor who did the surgery because he retired. So now I began looking for a new doctor. Eight months later I had a second prolapse surgery and the doctor told me he had problems and as he was closing, everything fell out and he had to fix everything because my walls had eroded from first surgery. While in recovery I was very cold and my teeth were chattering out of control and I was just about convulsing, so they had to do a blood transplant. As I was in my room I was having pain in my right butt cheek and couldn’t even lay on my side The doctor thought it might be a blood clot and said they’d keep an eye on it. I could still feel the lump but they couldn’t, so I was sent home after recovery time.

Two weeks to a month later I prolapsed again. By my post op checkup, the doctor said I’m beyond his expertise so he referred me out to another doctor which then I couldn’t see me for 3months. Frustrated and tired of my insides hanging out I then found another specialist that was at what was supposed to be one of best treatment place in my State and people all over us go there for specialty care. It was where they did my surgery for cancer and I put my health, faith and trust again in a new specialist. My first visit the doctor said so you are referred to me for Lefort surgery and I don’t do that. I asked the doctor what is Lefort surgery? The other doctor never mentioned this to me and he said its where your vagina is sewn shut.”

This is Lefort surgery… when I read this I had to look it up to understand and I was reminded at what I had read during research about mesh complications. Doctors are told that if complications persist, the best thing to do is sew up a woman’s vagina. I was horrified. The reason I keep writing this blog is to try to give the women of the future a chance to learn all that if happening to women BEFORE they allow mesh to be put into their bodies. Women have no clue the depth of destruction that mesh can cause to some women’s bodies and I want them to have a fighting chance by giving the truth. This woman’s story is NOT RARE at all.

“Mortified my husband and I didn’t know what to say, and when the doctor went into it and said he didn’t know if he could do surgery due to the fact that he doesn’t take patients that will die on his operating table. So he would research and speak to the other specialist and get back to me again, so all I could do was to sit, wait and suffer. I had seen my oncologist and they did CT scan for their treatment and I got a call from radiologist because she said she thought I had had a hysterectomy. I said I hadn’t and that they left one ovary. She said “we see a uterus” and I said that can’t be possible. So she sent me a copy of the report to give to my third surgeon before the next surgery and that doctor put in his records in case the surgery didn’t go well. He agreed to do the surgery and he tied everything that was falling out to my tailbone and said I had a good chance. By this time my bladder had bleeding sores because I couldn’t keep it inside my body. After surgery, he told me I was fixed and to go home. Again two weeks to one month later, here I go again with the same problem, without knowing what to do next because this facility is supposed to be the best.

I was researching again and had been pretty much everywhere in my State for the right healthcare and I ended up back in the E.R because the lump in right butt cheek was so bad and my bladder was hanging out and I had a rectum prolapse. I couldn’t sit either so I stand or lay down. With a family this is very hard and no one can feel the lump but myself and my husband. We stopped having sex due to something scraping and poking him and now the ER were doing all kinds of tests trying to find masses. I was not sure what to do, so I had to go to a general surgeon for exploratory surgery because they had no clue what was going on. While going through exploratory surgery I had more complications and had huge hematoma and I had to have another blood transfusion and was diagnosed with pelvic inflammatory disease due to chronic mesh infection and frozen pelvis. I couldn’t get a culture done which messes up treatment because they told me I needed to have removal surgery and I would probably pee and have bowel movements out of bag. (Stoma surgery) They also said I needed long term antibiotics through a port and they consulted a disease specialist. He could not agree with the long term antibiotics and said I can’t be on antibiotics when they don’t have anything showing what kind of infection I have, so they released me from hospital with no recommendations.

While searching again now I’ve been following your page and know about Dr. Raz and I researched him as well but on S.S.I, funds are tight and I don’t live near his office. So like with most women I have to see a doctor who is covered through my insurance company and I keep being sent to doctors who don’t know what they are doing. I am having more problems and possible losing my family because I can barely take care of myself much less to take care of my family. We once did everything together and were very active, but now do nothing except seeing doctors, have hospitals tests and lay down.”

Ladies if you are on State care you can’t travel outside your State, so please fight hard to get disability and once you have Medicare you can go to Dr. Raz.

“What kind of life is this along with the feeling you’re a walking Frankenstein. Now for last few years I’ve been fighting to get to Dr Raz while still battling this. I got a little side tracked but know of only one of maybe three places I haven’t been to in my own State. I’ve seen a new doctor who said I’m beyond his expertise and referred me to another specialist and he said he is the best doctor for this in this state.”

I feel so bad for women when they say things like ‘I feel that I am a walking Frankenstein’, but unless you know what happens to women both inside and outside their bodies, you cannot understand what they mean. Mesh implants disfigure women’s bodies but because it is so personal no one understands the mental anguish they feel.

“Three months later knowing my insides are hanging out all the time and I know the mass that I’ve been complaining about is now draining out of my right butt cheek, and is draining yellow green puss and blood. I have to change band aids left and right and my butt cheek is now disfigured, skin scarred and rotting from this and I have been given antibiotics off and on which only covers part of the problem. When I take a break in-between antibiotics it drains again and I also have only one kidney and this is hard on me, plus I have liver issues. I’ve been told the lump is a fistula then told it is a staph infection then again a fistula and again a staph infection from various cultures, but none of these specialist say I have any infection. Again I am wandering of subject a little but just want people to understand the hell this causes women, in their minds.

Then I began seeing another specialist who was upset with what I’m going through and said “don’t worry I’m the one percent of doctors that is going to fix you”. So again I have to trust that this might be that one doctor. When she did her first surgery which was to remove the mesh, she removed a ball of mesh that she said was just sitting there and not attached to anything and she left what was tied to my tailbone. After this surgery I was in severe pain and still have infection which has now been draining for one and a half years and I can’t feel my bowel movements. I go in my pants without feeling anything so I have a new horror to add to existing horror. My bladder was hanging out so bad I went back to see my doctor before my next appointment and got her associate instead because she was not in at in this time. I had had thyroid removed so they wanted to make sure it was ok for me to have surgery. I had second surgery scheduled but a couple months out this specialist said she had never seen anything like this put me in for emergency surgery.

While getting ready for surgery the nurse came in and asked me if they could take a picture of the prolapse. I had had this surgery which she said went well and she added fourteen more feet of mesh which she said fixed my bladder prolapse but still had infection bowel movements in pants or I was backed up and dealing with partial to full bowel obstructions and severe pain in belly. I also had cramping nerve pain down my leg and hard times breathing while urinating and had had lots of weight gain so I looked normal one minute than nine months pregnant within half an hour so I used the emergency vac from the last surgeon because of this partial obstruction. When I didn’t get to see my doctor so requested to see her because she was the one percent who was going to fix me and then she avoided me. My husband who is concerned put me on liquid diet until I had bowel movement which I did, but I’m still going through this.

Now upon release of paper work I saw a bowel specialist that is her colleague and doctor was blaming obstruction on pain meds but I didn’t have any issues with bowel movements until her surgery. These doctors wouldn’t take responsibility for what they did so I went to see bowel doctor who tells me I have no infection because I was on antibiotics. This doctor also let me know that no other doctor wants to fix someone else’s mistake and she couldn’t help me so I now I don’t know who can.

I stopped taking antibiotics because doctors can’t see infection and I supposable don’t have one. On one of my trips to ER they wanted a urine sample which normally you need to pee in cup but for some reason they wanted to use a catheter so a nurse tried to put it in and said “just a minute” then another nurse and then another nurse tried and then they informed me they couldn’t find my urethra. I also found out that in past scans done, I have three hernias and an ileus and I learned this from reading my reports, not from the doctors. I am told that they need to use more mesh to fix me and I don’t want any more mesh so what happens from here. From hernia repair to infections to vaginal mesh removal and repair. I know this is a lot but just like yourself I want to help educate women also thanks for anyone who wants to read this and my prayers are with anyone else who has is now suffering. I want to say to not use mesh at all cost for any treatment. Jennifer”

On another blog she posted this:

“I’m right there with all of you, I’ve been in and out of hospitals\emergency rooms, been in hospital for six surgeries plus still it’s ongoing and I’m in serious condition with over 15 trips to ER for help related to transvaginal mesh complications. I hate even thinking of going to the ER again and I have been treated like the rest of you. Worse than an animal. No one wants to listen and none of us put ourselves in this situation, they did and I wish every doctor who has done wrong to all of us and insurance companies, the FDA and the manufacturing companies should go through what they’ve done to us and see what help and treatment they get. While still suffering and dealing with cancer and thyroid issues I made my own tattoo to look at and give me the strength to keep fighting since my hope is fading desperately. I decided from seeing the Mesh Angel’s symbol though not exactly the same, I am a Mesh Angel. I have the cancer ribbon for two types and dragon fly for spirit and for good to come my way to remind me to keep fighting, I want to give knowledge to people who ask about it. I’ve been going through this mesh nightmare for four years and counting and I want other women to know to hang in there as I know it is so difficult. That’s why I did a tattoo that is just for me, but maybe find something to focus on to give you the strength to keep fighting for yourself, family and friends who are also suffering.”

Then she posted this comment:

“I posted earlier on your page and not sure if it worked but I wanted you to know that I contacted you years ago and just posted today telling of my own horror story. My story is long but I also wanted to share that I gave my PCP my personal copies of op reports so I could get her help with treatment. She has been working on referrals for a month now and still no help, so I’m in bad shape. I just went through a toxic storm because insurance companies want to play games on which meds they fill, which was hydrocortisone for my cancer but insurance will only fill anxiety meds with no issues, which is not important. I would like to say I don’t know how doctors and insurance companies can play with your health care like this. How can they feel good about playing with people’s lives like this and get away with it. From prescriptions down to a simple hysterectomy I am now fighting for my life and it’s so unreal I’ve that I have been waiting 4 years to wake up from this nightmare. Jennifer”

It took some time for me to edit her words because what she is going through made me so sad the tears welled up. But she deserves a voice that is LOUD and CLEAR. This is what is happening to women! This is how women are left to cope! What has this country and out FDA government come to? I ask myself this question every day when I read women’s pleas for help.

This is the last blog I wrote about DES

You can get help with travel is you are low income. This blog will tell you how

2 Comments

  1. Linda Nachbar

    One woman is too many but how many and how long will this be allowed to happen??

    Reply
    1. Linda (Post author)

      I know Linda. It is hard to believe at times what has happened to women over their lifetimes. Why are women always the guinea-pigs just because they have the bodies to reproduce. It is all so terribly sad.

      Reply

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