Mesh & the Hidden Illness

This is that time of year when everyone plays happy family. Graduations and summer barbecues are up and running. Everyone is celebrating a new passage of life. But for many mesh women, dragging themselves out of bed is extremely hard to do because they live in so much pain. They try hard to put on their happy face, when all they really want to do is stay in bed. Doctors call it depression. They hand out pills to make women forget they are mesh injured, but the pain in their bodies won’t let them. They often feel that everyone around them does not get it and the anger rises to the surface. Why has this happened?

Many women have told me they feel terrible when they blow a fuse, but they can’t control it. They feel angry that everyone thinks they should be up and running after mesh removal. They are angry that every special event goes by and yet they don’t care. They know they should care, but to them these events are small and insignificant in comparison to complications they are dealing with.

I just had a conversation with a woman who has been dealing with many partial removal surgeries over many years. Her life is about constant pain. Trips in and out of hospitals. Her husband is still in her life and tells her he loves her. He takes her to doctor’s appointments and does what a husband should do. But she told me SHE has changed. Years ago when this all began, she was unfamiliar with mesh complications and she let him do the talking for her in the doctors examining room. She said he thought her pain was trivial and as she heard his simplified versions of what was happening to her, she felt angry but couldn’t fight it. As the years went on, she became angrier at him. He began to believe the doctors that it was all in her head. The constant pain made it hard for her to fight back. Until one day she joined a support group and realized she was not alone. She was one of thousands of mesh injured sufferers. That gave her the power to fight.

As she listened and read what was said, she first became even angrier. All the years that had passed her pain had been dismissed by those around her. It was either go under with so much anger or fight back. She did the latter. Her husband did not know how to handle it. He thought she should go on antidepressants to calm her down. That made her angrier. She did not want to be calmed down. She wanted to express her feelings and make him understand how much she felt controlled by her pain and those who wanted her to shut up. She began bursting with her new found freedom. She spoke out about her mesh injuries and that made him more uncomfortable. When they went to doctor’s appointment she no longer sat there feeling ill. She had had enough of him speaking out for her. She took charge and told doctors how she truly felt and what they had done to her. He was horrified and she felt liberated.

She told me he is trying to make up for all the years he did not take her seriously. But the anger inside her rises up because she resents all those years she had to stay silent. She said he tells her he loves her but when they go for doctor’s appointments he sits as if removed from her. He doesn’t really like the outspoken woman who is now taking charge of her own health. She knows that he still loves the woman she was, but doesn’t like the woman that mesh has made her.

Mesh complications changes everyone in the family.

I was recently in a store with my daughter trying to pick up a few things I needed. I was hanging onto a shopping cart because I have constant leg pain. I’ve got used to it and have to adjust to living with it. But that day the catheter in my body was causing a lot of distress. Every step I felt a piercing pain in my bladder. I tried to concentrate on the things I needed to get, but all I could think of was the pain. When we left the store and were in the car my daughter said I just didn’t pay attention to what she was saying. The truth was I had not heard her because of the pain I was dealing with at that moment. I wasn’t trying to be annoying, but I was to her. She was used to a mother who was always lively and alert. I did not live like this and was aware of everything around me.

I knew she too has changed because of mesh complications. I can’t do the things we used to do together. I can no longer do physical things the way I always have. I get angry when I think about it so I try not to go there. However it lays dormant, like an erupting volcano.

Before each surgery I am a mess. Forced to fill out paperwork and take tests to make sure I can handle it. It takes me back to my world of anger and I can’t deal with it. It takes me back to the first surgery and all the pleading I did to get my doctor to recognize I was suffering because of the mesh sling that she had put inside me.

I try to leave it behind me but continuing treatments take me back to that dark place. Then I am forced to deal with current complications and more doctors who don’t care about treating me the way I should be treated. I have to keep fighting to keep myself healthy when the odds are constantly stacked against me. I want to scream!

As I listen to others and read their stories of anger at mothers who don’t believe their daughter’s are ill, I realize how bad this is. These women are stressed out by their very own mothers. They love their mothers but they want to scream at them because they are not believed. When they decide to go out to UCLA, it is the hardest decision a sick woman can make. Often she has run out of options and is more injured by many surgeries. When her mother thinks she is making it all up or it is all in her head, she feels the anger rising. At times she lets it loose.

She will feel bad after her outburst and then that makes her feel even more stressed out. Daily stress from family members is the norm. Women have told me they love their family members but when they act like this, they don’t like them. They want those in their lives to believe they have a serious health issue and surgery to try to help them is not small and simple. They beg me to write about this.

What I have realized by doing this is we all suffer a serious side effect of mesh than no one sees. It is called medical PTSD. It has been recognized in other forms of illness such as cancer and long term illness but no one takes mesh complications seriously enough and the mental strain of this illness is undermined. Women want doctors and their families to know they are suffering in many ways and they do not need added stress to deal with. It is hard enough t deal with pain and continuous complications as it is and they do not want to fight to get treatment, nor with their family members to be believed.

The following is a definition of what this is. Every mesh injured woman will recognize the signs and symptoms of PTSD but they don’ know how to deal with it.

posttraumatic stress disorder PTSD; an anxiety disorder caused by exposure to an intensely traumatic event, such as rape or assault, military combat or bombing of civilians, torture, death camps, natural disasters, terrible accidents, developmentally inappropriate sexual experiences, or life-threatening illness.

Characteristics include re-experiencing the traumatic event in recurrent intrusive recollections, nightmares, or flashbacks; avoidance of trauma-associated stimuli and a generalized numbing of emotional responsiveness; and hyperalertness with difficulty in sleeping, remembering, or concentrating. The onset of symptoms may be delayed for months to years after the event.

I found the following link to share with you what we are all dealing with and you will recognize many of these symptoms in your own life.
Signs & Symptoms of PTSD

A person who has experienced an extreme trauma may be diagnosed with PTSD if he or she has a certain number of symptoms from each of three symptom groups: re-experiencing the traumatic event, avoidance/numbing, and hyperarousal. These symptoms must last for more than one month and must cause severe problems or distress in personal life, work life, or other important areas of daily living.

1. Re-experiencing one or more of the following:

Images and thoughts about the event

Repeated distressing dreams about the event

Acting or feeling as if the traumatic event were happening again (includes reliving, such as having flashbacks about the event)

Strong mental and emotional pain when seeing people, places, or other reminders of the event

Physical reactions (such as shakiness, chills, heart beating fast) when seeing people, places, or other reminders of the event

2. Avoidance and Numbing – three or more of the following:

Making efforts to avoid thoughts, feelings, or conversations about the event

Making efforts to avoid activities, places, or people that are reminders of the event

Not being able to remember important details about the event

No longer enjoying or taking part in activities once enjoyed

Feeling detached or removed from family and friends

Having feelings of emotional numbness that others may notice

Believing that certain important life goals (such as marriage, parenthood, or growing older) will not be fulfilled

3. Hyperarousal – two or more of the following:

Problems falling asleep or staying asleep

Angry outbursts or being irritable

Problems concentrating

You can read it all here. http://www.mhaedu.org/ptsd.shtml

There is much more to the PTSD of mesh injured women. Even after they have had all the mesh removed, they find it difficult to believe because they cannot see inside their bodies. Some have had an additional translabial ultrasound to get the proof and they place those pictures side by side so that they can go on with their daily lives. Mesh is the erupting monster that lies under the surface of their minds. They live with daily fear that something will fall down and they will need another surgery. One woman told me that she can’t seem to move forward because she fears anything she does will result in a prolapsed organ. She said Dr. Raz told her to stop worrying about it, but it is easier said than done. At the time of removal he lifted her bladder and somehow managed to put it back up. She asked him how it stays there and he pointed upwards and said “Ask the man upstairs”. I had to laugh when she told me this, but I did not realize the depth of fear she has of her organs falling and how it has placed a hold on her life and her mind. I don’t know how to get her past this. I want to help, but I don’t know how.

Another woman just sent me this article written by someone who is clearly stating that there is so much more to mesh injuries than just the physical side. I know many of you need to read something that does not put your symptoms into the tiny category of simple and easy to fix. No they are NOT manageable.
http://www.justicenewsflash.com/2013/05/11/correction-transvaginal-mesh-victims-require-much-more-than-compensation_20130511111261.html Perhaps by sharing this blog your family members they will understand the magnitude of what you are going through and the fact that you do not mean to get so angry when you feel they dismiss what has happened to you, but they want you to know they need your unconditional love. I hope you will give it to them.

7 Comments

  1. Maria

    Linda,
    Thank you for all your work and loving concern for all of us. I found your website 3 weeks ago and have not stop reading. All I can do is cry and thank The Lord that He lead me to find you.
    I began searching the web three weeks ago after an appointment with a Urogynecology, she told me the bladder sling/mesh I have has eroded and she can see 2 portions of it. She was still examine me saying, it is too tied, it’s eroded and it needs to come out now. Doctor offers only partial removal. At the time I didn’t know what to ask.
    I had a total hysterectomy in 2004 and by 2006 my bladder was not emptying fully cause it was folding the other organs were also prolapse and i had pain and incontenance. I trusted my doctor and he put in a BARD sling to hold up bladder. I was in horrible pain days following surgery and problems urinating. I had to self cath for a few days then my bladder starter working again.
    After I was told every thing would work itself out. Well, I continued to have moderate pain in groin/ pelvic area and pain during and after sex.
    About 3 years ago I began to have right and left leg pain, my feet burn, are numb and right knee and hip hurt continually, I live on Motrin. Doctors tell me it’s mild arthritis, hip bursitis, and I need to lose weight. All doctor gives me is anti inflammatory med and muscle relaxants.
    The hardest time is night when all is quiet except the pain and there is no comfortable spot to lay on. My feet burn so that I can’t stand to have heels touched by bed or toes by blanket. At times I sleep on recliner so I can hang my feet in air.
    After reading so many other symptoms that I also have, incontenance, stabbing pain while moving, walking, feeling mesh moving in there.
    Anyway, I called and have an appointment with Dr. Raz on August 6, 2013. I am very afraid of what he might find since I also have some problems with my bowels. Cramping and pain when I need to go then get relief after I evacuate.
    I have stop trusting doctors some time back so I treat myself with natural home remedies. I cleared my bladder infections but in last 3 months I get a cold that starts congestion, throws me into asesperated asthma and then a productive cough that last 2-3 weeks and does not clear completely. Oh and I did have an asthma test which came back normal. These asthma problem I have had 3 episodes all I get is antibiotics and prednisone. I’m concern about my immune system being compromise.
    I like to know from your experience how long it takes to see Dr. Raz, then have ultrasound and results. I live in Houston, TX and will have to travel to CA. How long a week, two weeks. I know for surgery I will have to wait months.
    May The Lord help all of us to get throw these painful and discouraging times.
    Thank you

    Reply
    1. lavalinda

      Marie, you are going to the best surgeon in the world and he has removed countless cases like yours. I live outside Houston and I will send you an email. I know other women in the Houston area.

      Reply
    2. Angels1234

      Maria,
      The pain in your legs and feet is most likely a condition called complex regional pain. Google it and see if the symptoms fit your profile. If so, you will need to find a good pain doctor to help you calm the sympathetically mediated pain down you are having. Surgery can make these symptoms far worse if this is the problem and your recovery will suffer as a result. Hopefully it is not, but if it is there are treatment options to calm the system and you will need to go I to removal as calm as possible. I have this condition as a result of mesh and I speak from years of experience. If you have any other questions, Linda can get you in touch with me.
      Good luck to you!

      Reply
  2. mmm

    Please be sure to warn women who think that getting a partial removal will take care of everything. I had a partial removal and the nerve issues were compounded once part of the mesh had been removed. I had a several days of no pain in my hip, leg and groin and then the pain became unbearable along my left side. I now I take pain medication three times per day to help with the nerve pain. I went to Dr. Raz this spring and am scheduled for complete removal surgery in the fall. He shared it is a much easier surgery if I had not had the partial removal. Had I known I would not have had the partial removal. This is just my experience and I want to impress upon others to ask as many questions as you can prior to any surgeries.

    Reply
    1. lavalinda

      MMM, you are so right. I had one too and it made things far worse for me. Then Dr. Raz removed it all.

      Reply
  3. laurajohnson

    Linda,
    My kids thought that i was crazy.. Just put a straight jacket on her. My handsome boyfriend had no clue as to what was going on. I thought “Oh my god.” I’m a hypochondriac. In my mind at the time is get out of bed and make sure kids graduate and boyfriend gets off to work. Well lost the boyfriend and my kids still are struggling with school. They should be in college at this point but my lack of the last eight years of mesh has messed up my children’s lives and the relation of my boyfriend soon to be fiancee. I miss the fact that i was sick with mesh for my children to succeed in their future and I also really miss my Ex. I loved him dearly as he was my best friend, I really miss him. My children still need me of course as that is a given in any mothers life. but it really sucks as they and other old members of the family think otherwise. My children understand now but my younger twins don’t as this mesh mess took them apart from me in a mother that cares and i could not be there for them when they needed me the most. I hope after all these years of raising my children and concentrating on them that i as most of us do forget about the pain within ourselves.One day the rest of my family will understand but i really think that they are in denial at this point. I have another family member that has mesh and a close friend that has mesh as well. Both do not know the danger as i do. I am taking baby steps for them to understand as u can’t force this information on anyone fast. It has to sink in for them to understand. Thank-You for your blog/website as i have followed you for over a year now to help me through mesh in my life. Thank-you for helping all of us. I hope you are getting better now.

    Reply
    1. lavalinda

      Laura I have heard this of so many women which is why I keep fighting to get the word out. No we cannot force recognition of mesh complications on any woman because it is devastating to realize what a mess we are in. It is the saddest thing to know how many families are affected by mesh and how women wind up alone and afraid and in the end only women who suffer really understand each other. My heart goes out to you, but you are not alone.

      Reply

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