Living with Your Own Patient Advocate

Sometimes when you live in pain every day you cannot see the wood for the trees. Those who live with you also suffer and do not know how to help you but yet they truly care very much. I love it when women share with me when someone does something out of the blue and it makes them feel that they are truly cared for. This is why I am writing this blog this morning.

First please remember that mesh complications affect everyone who lives with you and those who love you but do not live with you. They often feel very helpless because they cannot take away your pain. You should also try hard not to take it out on those who are around you when you feel the agony of mesh complications. I do understand you will have many bad days when getting out of bed is truly difficult. However, we all have a better day from time to time and when these days happen, please take the time to share with your loved ones how much you appreciate them. Don’t fall into the bracket of ‘poor me you don’t understand what this is like’. You must understand that it doesn’t just affect you but everyone around you.

No one knows your true pain or feels the deepest destruction of your physical and mental psychological being the way you do. However, they have a different kind of pain. Mesh destroys intimacy and families. It takes away dreams of sharing and joy. It takes away plans for vacations and fun with your children. But remember…..you are alive. You may wonder what use are you to those around you but please do not take your life away from those you love. You are of value and importance to them, even when you cannot do the things you have once planned together.

If you can, give those around you a simple smile or a hug on your good days, and they will be searching for a way to help you get through the pain and live again. This is what one husband has done recently for his wife.

I did not know about this but some companies have outside contract companies that they hire to help their employees and their families with medical issues. They do so because they know that if their employees are stressed out, then they are not at the peak of their work ability. So one caring husband wrote a lovely letter on behalf of his wife to his company mediator to try to get them to understand how serious his wife’s mesh complications were and what she has been through for many years before she finally got validation from Dr. Raz.

She sent this letter to me because it made her so happy and it began with the following. You have to understand that she and other women feel that women alone are often not believed and sometimes if a man steps in with the right words it can change everything for them. I hope this will inspire other husband’s mother, daughters, sons or anyone else who loves a mesh injured woman to find a way to help and become their best patient advocate. Only those who truly love us know what this has done to our lives.

From the injured woman who had just read her husband’s letter. “Now this is someone who is in my corner !!
This is exactly what most women experience.  WE are not believable!!!!”

This was the latter he wrote about his wife. You should also know that this woman not only has a mesh sling that is causing her terrible pain but also is dealing with hernia mesh pain.

Hi,

I wanted to keep this message separated from the others, primarily to personalize this one and put my wife’s issue into some context. That being said, here are some observations/thoughts…

As you may already know, they (mesh kits) became “a solution” for many kinds of surgical repairs instead of using dissolvable sutures. It became a “quick fix” by pushing in a plastic piece of mesh into the herniated area, instead of addressing the issue properly, when suturing was completely appropriate and the mesh is truly unnecessary. In addition, the pain issues were dismissed by the surgeon post-operatively. My concern is this: every local surgeon/physician – except one – that has been consulted, dismissed her complaints of severe pain as d/t psychological problems or other issues. A surgeon actually told her that the hernia repair pain was due to low weight – I was in the room and am witness to hearing that statement. 

Bottom line: no one we’ve seen wishes to be accountable for what they did as discussed, nor help out. One local surgeon unequivocally stated: “I do not fix another surgeon’s mess”.  We only wish to have the damage repaired as best as possible. Kind of hard when nearly everyone tells you the problem lies elsewhere. No follow up or diagnostic tests, nothing. That certainly doesn’t follow the general tenet of the Hippocratic Oath. So, I have to advocate for her, since no one else around here will do so. No one within our region is/was willing to actually look at everything with fresh eyes – hence the UCLA consult and requesting you to review everything.  Aside from the aforementioned surgeon who wouldn’t try to help, so far Dr. Raz and his staff of surgeons have been the only medical personnel that have not attributed her issues to another (less likely) cause.

The diagnostic images from UCLA are proof of the masses of surgical mesh and scar tissue buildup. There is possible surgical mesh involvement. Those problems (urinary, lower GI) began with the first surgery in 2006, when the first surgical mesh was installed. Only one of the hernia repairs is not truly painful and only to a lesser degree. The irony is that my wife simply wants her life back to whatever level might be possible, yet no one wishes to “get on board”.

Sincerely,

M

I loved this man’s letter because it was straight forward, to the point, taking aim at the problems she/they are dealing with and trying to solve to get her the medical treatment she needs and deserves. This was the answer he received.

 Dear M
Thank you so much for your email. I’m so sorry that your wife has gone through so much since her surgeries. It’s clear to me that her symptoms and pain are very real and quite legitimate. She is so fortunate to have you as an advocate.

One of the nice things about our program is that the Expert will be someone unbiased with nothing to gain or lose. I will also ask them to recommend some surgeons with expertise in removing surgical mesh, and I’ll state that you’re not limited geographically. Sound okay?

Thank you for the response and I do appreciate your suggestions – we definitely need those with expertise in surgical mesh removal to weigh in. We’ll certainly do what’s necessary.

I felt it imperative to fill out the picture, because for the most part, you have clinical records that simply note the issue, not addressing the underlying cause. I believe anyone would suffer mentally and physically, faced with such a situation. So, everyone tried to treat the symptoms, never the cause. My understanding is that there is a good possibility of surgical mesh involvement with the urethra. The mesh sling is also attached to her sacral area (seen in the diagnostic images), hence the UCLA urology/pelvic reconstruction expertise.

There was more but this is the main part I want you to note. You can see what happens when someone who loves you begins searching for a solution. I truly appreciate any organization that gets involved in the gigantic mesh problem and seeks a solution. I also want her husband to know he did something wonderful for his wife. He gave her a heartwarming lift and me too. It is wonderful to know that people still do have a sense of love and good humanity. That is why I shared his letter with you.


5 Comments

  1. Angels123

    Linda,
    You are amazing! You address every issue that happens as a result of this mesh debacle. Thanks once again for your work. I would like to add that it is important to keep people who are good decision makers around you to help when you need an advocate. However, the best advocate you will ever have is YOU! Do not give your power over to a surgeon who won’t listen to you when you know something isn’t right. You live in your body not him/her! If you are reading this then you are that patient who won’t just lay down and take it. Listen to Linda and those of us who have gone before…get to UCLA and find the doctors who will listen to you..who will not make you feel crazy…who WILL help you and do their best to remove the mesh that is causing you so much problem. Do the best you can to be your own best advocate..after all it is YOUR life!

    Reply
  2. Pingback: My friend Linda Kilpatrick ministers knowledge to ladies around the world concerning MESH | @ His Hem

  3. sharess holiday

    Hey,I don’t have the mesh ,but I had a interstim implant and it has caused me pain with it in and now that it is out .I can not begin to tell you all the things that I am going through but thank you for your website I can relate with the pain and family and other people not understanding what you are going through but I thank God for the team around me.

    Reply
    1. lavalinda

      Sharess, are you aware of a support group who understand what you are going through. I wrote this blog and the link is there. http://teapapers.com/bladdersling/2013/03/the-interstim-implant

      Reply
  4. Rebecca

    Re:Botox Injections
    I had botox injections over 20 of them in April 2012 for my neurogenic bladder. I have MS and was suffering for years with no sleep because my bladder was so over active. It is now almost June 2013 and I am still PARALYZED in my bladder. My doctor insists the botox is out of my body and blames my MS. I never regained my bladder and have been using catheters since the day I had the injections. I live with constant infections from cathing and am on on antibiotics constantly. I would have to say in the very beginning the botox relaxed the urge to have to go.

    Sometimes I would find myself going almost ten hours without voiding and have to
    Remind myself to go because I felt no fullness or urge I was paralyzed. I gradually got sensations back of when I needed to go but it took months . I have had urodynanics done twice since 2012 and was filled up with 500 ml (saline bag) no muscle contractions were recorded and I held that in my bladder even with a real small cath in. So moral of my story I went from extreme to the other with Botox. I now have overactive bladder that I must cath 10-12 days .Not normal. I am now a candidate for interstim which I tried the first step in office under local anesthesia but the Dr could not get leads placed. So I need it done under general now. Hope I have helped with the botox

    Reply

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