Transvaginal Mesh: Stories of Anger

March 18, 2013, by Jane Akre ~ Recently a doctor commented about mesh-injured women by saying “These are angry women.”

I was taken aback. You trust your doctor. The doctor sells you on a minimally invasive procedure that will “fix you right up.” Some women were told nothing - no consultation, no discussion on complications, the lack of long-term studies or the impossibility of removing mesh after it’s implanted in your deepest place.

“These are angry women."

Many doctors turn their back on women saying they've “never seen this before," or they offer some antidepressants because the problem, after all, must be in your head. Of course these women are angry. Anyone with a remote sense of justice would be and a doctor who deals with these women everyday should have some understanding of that, one would hope.

His words sparked this dialogue from a few "angry women."

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Ah, the anger stories. Mine stems from the very doctors who installed my mesh who refused to believe or admit it was causing the problems. It seems like that's where many of us had the most frustration. Every time I think I've got a handle on the anger, something will stir the pot again. Like most I'm a work in progress.”“I will never trust or believe any doctor without researching it myself online. I am still amazed that doctors lie. If they don't know, they should refer it out.”

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“I think mesh injured people go through Elizabeth Kubler-Ross's "Stages of Death and Dying", like others with cancer or other serious chronic illnesses. It's a loss of health, womanhood, sex and intimacy for some, active lifestyle, jobs and insurance, etc and development of pain and other uncomfortable symptoms. It's normal to vacillate between grief, anger, bargaining with God, depression, and finally, hopefully, acceptance.

As one of my mesh friends says, "Find peace in the place you are in."

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“We joke that we are a small village of women who do this. It takes a village and thank God we've established one. We need our own zip code. We do need a convalescent place for women to stay and have a little counseling. Counseling would actually be simple. They just need love and validation. Most of us were able to fly home soon and xx had a son near there, but even she had to stay for awhile because some of these surgeries, including hers are very serious. We could work with the surgeons who know who needs to stay longer. I know L.A. is expensive, but we need it near there so that women do not make that long flight home too soon, nor too long a drive when they get out of hospital. I know it is only a dream but it needs to happen.”

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One woman writes after being sick and losing her job:

“Needless to say, I was completely, totally, and absolutely in shock and I'm certain that it contributed to the "clinical depression and PTSD- both health and work related" diagnosis that I ended up with.....So that's my thoughts on anger at the medical system.... The anger used to ooze from my every pore but I realized that I was only hurting myself more by letting that happen. Yoga (and being/living in the "here and now") helps A LOT!”

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“Walking is my salvation. I also just came off a 5-day water fast which helped not only my anal fissure but my mind set. I plan on doing a 20-day juice cleanse this summer. For me it not only clears my body but also my mind.”

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“Yes, I guess we ARE angry women. When I was in my worst pain and could barely walk I was crossing in a crosswalk while a car impatiently waited. I faced the car with arms opened and yelled "Go ahead make my day!" At that point I would have welcomed a speedy demise. I don't know what the driver thought, but that sticks in my mind as one of my lowest points.”

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“Yes, the anger was affecting my marriage too b/c I was constantly taking it out on my poor husband... In a weird way, I was trying to push him away b/c I no longer felt "worthy" as a wife, woman, mother, partner....That's when I started seeing xx, a licensed mental health counselor (LMHC), also a nurse before going into mental health. I just needed someone, not family, that I could cry, ventilate with, get all my feelings sorted through... Betrayal, anger, sadness, loss of self, job, activity level, sex life, peers at work, anxiety...She helped me SO much! Without the drugs that I didn't want.”

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“I agree with you- that's one of the biggest things that mesh-harmed ladies (and men) need is to talk, talk, talk, be heard (after being denied again and again by medical professionals and even their own families), talk more, and know that someone is listening, believing them, and that they are being heard.”

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“I agree xx...I was angry at my doctor, for letting me suffer for months, denying it was the mesh, then the first surgeon who agreed it was the mesh and couldn't find it, when I asked her for a referral to UCLA, emailed me back that was nothing more she could do for me physically! This was after I told her the infectious disease doctor told me I could DIE....what happened to the oath, "Do no harm"? I sent her the angriest email I have ever written.”

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“But it is all about the money/insurance...a life is last consideration, if any at all. I thought I had released this anger against Doctors, till I wrote this email. I am still angry, healthy and healed, but angry that there are still hurt women that can't get help.”

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“My husband bottled it all up. He was more panicky than angry, trying to get my meds, being there to support me, etc. I don't think he felt the anger, because he didn't feel the pain. For example, your friend can have cancer, but you really can't relate, because you have never had cancer. You can be there for her as a support, but you feel more like crying for her than anger.”

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“Much of my extreme anger at my doctors, hospital, anesthesia group, peers that I thought were "friends" that weren't there for me after I was no longer working, healthcare in general, and later on the FDA and Big Pharma, ended up inadvertently being taken out on my husband. I was literally oozing anger to the point where it made me mad to see other people smiling and "happy". I'd NEVER been that way my whole life- how very sad!"

“I kept (consciously and subconsciously) trying to drive my husband away because I felt like he was too good of a man to be saddled with a "ruined" wife like I had become, physically and emotionally. I thank God every day that my husband didn't give up on me or our marriage like I wanted him to. A testament to a wonderful man!”

“I try to NOT think back on what I went through at all, because it definitely makes me angry. When I think of everything I and others have endured... And for what? So some stupid big company can line it's pockets with money from the pain and tears and suffering of so many women! When I think of my Internet mesh nurse friend who didn't make it through her mesh insertion and removal complications, it makes me sad and very angry. That's why I'm still around. My anger pushes me to help others out of their horrific situations. All I have to do is remember how I felt when I was in so much pain, so alone, being tortured, nobody understanding, and it propels me to action to get others out of that same, awful situation.”

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“I was reading all your anger stories this morning and yes we could all write a book about anger. You could say I have keyboard anger. I used my keyboard with the doctor who put it in me and then said “I was the only one”. However, xx met a woman out in the waiting room while she waited for me each week to try to pee for two hours. That lady gave me my first clue that it wasn’t just me and we are still friends. She almost died the end of 2010 when she had partial removal in Houston and he clipped a vein. Eight hours later and the loss of 70% of the blood in her body and she barely lived.”

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"If you were to put us four into a room together it would be an explosion of anger. Dr Phil ain’t heard nothing yet! It’s a bit crazy but most of my anger is now at the injustice of what happens to all the women out there who cannot get help at all and they suffer in bed. Their kids don’t give a shit about them. The stuff I know could fill volumes of what is wrong with the world today.

“So yes I have a lot of anger issues which I suppress and actually switch to other women’s pain. Gotta do something with it.”

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“i AM DOING NOTHING BUT GETTING WEAKER . i HAVE NO CONTROL OVER BOWELS OR BLADDER AT ALL ANY MORE, SO GETTING THINGS HAVE GOOTEN WORSE SINCE NOVEMBER AFTER SURGERY. LAST YEAR.”

“ i do not understand , no doc. has even talked to me at all. but a self examination, the mesh is still protruding out , and infections still going on. . I AM DYING ANY WAY SO WHY WON'T THEY SHOW MERCY AND LET ME BE PUT TO SLEEP. STOP MY HEART, . I do not want to die alone here. I TOLD MY DAUGHTER SINCE i was used as a guinea pig, and will be as long as I LIVE, WHEN i DIE, GIVE MEDICAL RESEARCH MY BODY , SINCE THEY DESTROYED MY LIFE WITH THIS IMPLANT AND DOCS LIED.

"THE YOUNGER WOMEN MIGHT BE STRONGER THAN i AM, THAT ARE GOING THROUGH THIS , MAYBE THEY HAVE GOT HELP.”

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“All I could think about is that I did not want you to give up and die. I did not want you to die alone in a world that has been cruel to you. I had to do something but I was not sure what to do. As I lay there I remembered another young woman who is suffering from mesh. When I spoke to her over the phone, she was a compassionate and caring young woman even as she deals with her own health issues. I knew she would try to help you.

"At this point I am not sure what she can do to get the ball rolling but I spoke to her this morning and she is going to work on it. You see, we are all women helping women. You are right when you told me that the world does not care about mesh issues. You are right when you spoke of the cruelty of doctors who do not seen compassionate for women like us. But regardless of your anger, you must accept the care and help you are given. You need someone to care about you and you cannot continue to be alone at this time.

"We, the small village of women who do this care very deeply about what happens to other women in this situation.”

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“The problem with anger is that we do need treatment. xx admits she needs mental health but they have no insurance and no money. So how do you find the money when you have to keep a roof over your family’s head and raise children? Women have been so screwed up physically and mentally that they back away from the medical profession altogether, even when they are seriously injured and dying. The anger really gets in the way and we no longer trust anyone. We probably do need Dr. Phil and yet we would be hostile even to him. He is a man. How could he possibly understand the destruction of our organs and genitals? We are all defined by sexuality and it is a very sensitive issue, regardless of age.”

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“When I spoke to xx yesterday, the woman is so filled with anger because she told me when she reached to find out what was done in the partial removal surgery, she said she no longer feels like a woman because something is missing. She said she has a hollow area from where she was once a woman. I have heard that many times before. It isn’t that she is wanting sex. It isn’t that she is washed up either. It is because she feels they mutilated her body and never explained why.

“She said she exploded one time in the doctor’s office. That explosion of course has put her on the crazy list. We know what the explosion was about. They lie and betray us, then ignore us. She said they told her they were going to remove it all. Then afterwards she said they told her it was impossible to remove it all. It is since that surgery that the infections took over. She said up until that point, she could still do things.”

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“I am cussin and swearing!!!! over 30 years ago the put threads of PP into rats to test rates of degradation!!! could they not see the value of putting a filament into a prospective implant patient to test biocompatibility? bastards @#$%^&^%#!!! Subcutaneous implants of polypropylene fi... [J Biomed Mater Res. 1976] - PubMed - NCBI, http://www.ncbi.nlm.nih.gov/pubmed/993229”

Please Share your stories of anger here! Thank you.