A Light in a Night of Mesh Complications

Last night it was another night of broken sleep due to pain, but I had something to hold on to.  A note of well wishes for my own upcoming surgery on the 11th October from a lovely lady who has helped me give other women messages of hope while she herself suffered.  Now she sees a light at the end of the tunnel after a year of working on her own future and she wanted me to understand how life will improve once this implant is out of me.  So I asked her if I could pass on some of her words to you as a message of hope for your future and she said yes.

I also asked her if I could use some of what happened to her and her very difficult struggle to leave a life of no hope and travel the path forward to a new beginning.  I should tell you first that when all this happened to her the mesh had been in her for a few years without any problem.  She had been widowed a year when everything exploded into a world of such horrendous pain, and nothing touched it with no relief by any pain killing drug.  You should also know that this woman used her retirement money left by her husband to get the help she needed.  Money is no good if you cannot live your life.

This was a letter she shared with me when she was trying to help another woman through her fears.

“Linda thought I might reassure you regarding your surgery with Dr Raz.  I tried your phone, but your mail box was full. You may not be up to talking on the phone. I know the feeling. 6 weeks ago I was in such pain and misery I didn’t think I could continue another moment, let alone another day, week, or lifetime. I had both the sub abdominal sacral colpopexy and the transobturator urethra sling. I had the surgery in conjunction with a hysterectomy/oopherectomy because I was battling cancer. This last July things started going horribly wrong.

It began with a pain in the calf. The following weeks it seemed I had a different symptom each day including severe lower back pain, abdominal cramps, weakness and pain in both legs, debilitating headaches, sinus trouble, and to top it off I began to poop my pants!

I saw a total of 5 doctors who gave me every test known to man and each came back telling me it wasn’t possible it was the mesh causing my myriad of symptoms. Linda and others (I wouldn’t have had to courage to go on without them) I met blogging told me about Dr. Raz.

He is my savior. He immediately saw where the mesh was started to erode through my vagina and he knows how much we suffer from the mesh.

I was scheduled for surgery with 2 other surgeons here where I live because Dr. Raz was booked out so long and I didn’t think I could wait. Both of them didn’t think they could get it out of my spine. Of course that’s where a lot of my problems were stemming from. Dr. Raz had a cancellation and performed surgery Oct. 24. 2011.  He got all of the mesh from my colpopexy out. Even though it was an open abdominal surgery I knew from the minute I woke up that I was feeling so much better. I have a life again. I can sleep without the aid of pain killers and sleep meds. I can walk and sit and stand and improving all of the time. I love life again. I still worry about the TOT mesh which will be a separate vaginal surgery (or maybe a few) but one step at a time. Dr. Raz and his staff were amazing. UCLA hospital was great. I was in hospital for 5 days and then stayed at my son’s another week recovering enough to fly home. I was in a wheel chair getting to my plane coming down. I walked on the way back.

If you want to talk my number is XXX-XXX-XXXX You are in the best hands with Dr. Raz and we are all here to help you too. I know it can be so lonely when you’re in such pain. Even if you have loving friends and family no one can imagine what you’re going through. It was by far worse than my cancer which included many chemotherapy’s, surgeries, and radiation.  With Love and Hope for you.”

This is the kind of woman I met because of my own suffering.  A woman who used her own pain to help others.  What you need to know now is that on June 29th this year, she had the bladder sling removed.  Two major surgeries in a year is hard, but somehow she found the strength to do it.  It was another difficult and complex surgery but she survived.  I hope some day to meet her.

Whenever I have asked her to help me get yet another lady through her fear, she always does it.  I have not asked her to help very much as of late because she needed time to heal and get her own life back, but when I do, she jumps in with a note of hope.  This note was what she wrote to another lady only a few weeks after her second surgery.

“Dear XXXXX,
I’m so sorry that you’re having to deal with this. I do understand your pain and how absolutely crushing it is. I had the bladder sling removed last Oct and the tvt sling removed this June 29th both with Dr. Raz. He is amazing and I’m so glad you’re getting in to see him. When you do see him don’t minimize your pain like so many of us tend to do. Let him know you are in unbearable pain. I don’t know if that will help to get a surgery date asap but he sees so many women he has to prioritize somehow. Also, be sure to go on any cancellation list he has.

I know that none of this addresses your pain and unfortunately I don’t have much help for that. Like you, I was taking muscle relaxers, pain meds, sleep aids and barely getting through each day and night. The worst thing for me was that none of the doctors I was going to believed it was the mesh causing the problems. I ended up in emergency several times when the pain was more than I could handle. For me having Dr. Raz tell me that the mesh was at fault helped immensely because then I knew it could be remedied. By then the mesh had eroded through my vagina so anybody could see it WAS a big problem. 

So……I wish I had some magic for you. Hang in there as best you can and get a surgery date as soon as you can. You WILL be better after surgery and have the life you deserve. Meditation? Mind/body massage? You could try whatever appeals to you in an effort for relief and I wish that for you.  Please let me know how your appointment goes with Dr. Raz. My heart goes out to you. “

We send each other a note from time to time, checking on the other, so when her note came in a couple of days ago wishing me luck and good wishes for my own upcoming surgery, there was also a note of hope that helped me through yet another night of pain.  I truly hope this note will help you too.

The note was titled; Countdown. She told me she was very excited for me that my surgery was so near and that I will feel like a new person once it is out of me.   I replied that I was glad it was now so near, but of course I fluctuated from happiness and fear, hoping this surgery would fix all my problems.  The note she wrote back to me gave me so much hope and I used it to send a card to the lady who also has so much fear, due to the mesh has been in her for eleven years.  Now I want you to have it too.

This is her note:

 “I was just so happy to get it out and to have Dr. Raz doing it I guess that over rode any feelings of doubt. You’ll be a new person.  The healing has been slow for me this time. I think because it was the 2nd big surgery within a year and also the transfusions this last time knocked me out pretty good. BUT…I am sooooo much better than before.

You will appreciate that going into winter I can wear my boots and shoes! I go for long walks. I take my grand daughter to the beach and can pick her up from school all by myself. Life is good and getting better. When I think of where I was this time last year. Literally ready to kill myself because the pain was intolerable, unable to enjoy even a simple meal or a night’s sleep. Drugged to the max with barely any relief. Yes, life is so much better now and it will be for you as well.  Wishing you a speedy recovery.”

So now once you read all that she has been through and how she has come out on the other side for a new and improved life, I hope you too will be able to see a light in a dark night of pain.  It is all about choosing a doctor who understand what he/she is doing and has the best skills possible.

Step one.  To begin your journey for a better future you must first find out the type of mesh/meshes you have in you.  Many women are not aware they have more than one until they get their hospital records.  There is a blog here to help you understand where to find that information.

Step two.  Make a call out to U.C.L.A and get that appointment with either Dr. Raz or the other two women surgeons who can help you.  I wrote a blog with how to do it.

Step three.  Then and only then worry about how to get the money for the expenses to go there.  Ask your own or any church to do a fund raiser.  You may discover you will help other women with the knowledge of what has happened to you, who are also in pain because of mesh and no one has told them it is.  Or ask friends, family or co-workers.  Some women have asked and people have sold lunches to raise the funds they need.  Do not worry about being vulnerable.  You would help others if they needed it and now it is your turn.  You can pay it forward later when someone else is in trouble.

If you want to know who this lady is, yopu can see a photo and read more about her here.  http://meshmedicaldevicenewsdesk.com/patient-profiles/suffering-in-silence-athlete-pat-buchanan-faces-her-biggest-competitor-yet/

I know you are afraid.  I completely understand your fear.  Don’t think of the big picture.  Do this in small baby steps and you will have a better life.  Don’t let fear paralyze you until you are so bad off you lose your job, family and home.  It has happened to some women because they were told over many, many years it is not the mesh.  Take action before it is too late.  I wish you a better life.

1 Comment

  1. Robin Robbins

    I am so glad to have read this and will share it with others so they know I am not the ONLY one who has had severe problems with my Mesh Sling for MANY years. Plus it WAS SO inspiring to me to know she made it through TWO SURGERIES and is already feeling better. I DO KNOW miracles still happen big and small~Thanks SO MUCH for sharing this both this woman who I talked to personally and to Linda another Uplift for this day! God Bless you and everyone else who reads this blog! RR

    Reply

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