My Fascia Sling Surgery Part 1

I dragged my feet to pack…………… I didn’t want to go out to L.A. for yet another surgery. I didn’t want to put together a mound of supplies that would hopefully keep me from having an incontinence accident. I just wanted to stay home and go along with my ‘new normal’ life. More pain and a long recovery is all I could think about for my immediate future but………………… I had to go.

What was I going to do I asked myself. Was I going to become a complete shut in and become afraid of living? No, no, no! So two days before leaving I forced myself to gather together the things I needed and faced my fears full on. Half a suitcase contained all the incontinences paraphernalia. All that stuff and my fears were weighing me down and I had to make the changes in the sheer hope for a better life. So I did…..

I swear it seems a lifetime while you wait for your surgery appointment date, then suddenly it barrels down on you like a loaded gun and you are never ready. You have to face it full force and no one can do it for you. No one………. It doesn’t matter how much I write here or tell you what to expect, only you will be at the helm of the wheel. YOU have to get up and take very small baby steps to arrive at where you need to be. Better.

So I did just that. I got packed and climbed aboard the plane that would take me to yet a fourth surgery. I tried not to go the angry route this time. I kept reminding myself that without doing this surgery I would be stuck forever and drowned by my own incontinence. I had to give myself a reason to go and a reason to find a better future. Not remove the positive with anger. Yes it was going to be rough. Yes, once again I would have a fairly long recovery period and more pain than I had at the present. But I wanted more out of life and have to throw all the fear out of the window and go for it.

A gathering of women…..

UCLA is a place where women go to get the medical help they need. The Tiverton House Hotel is the place they go to meet and find the kind of mental help they need. Help from others who understand exactly what they have gone through and still have to endure. Warm hugs are handed out like bars of creamy chocolate. Yes women’s hugs and a bar of chocolate and on par with the best medicine possible.

The UCLA urologists would take care of our bodies but we collectively would take care of our minds. By meeting up before consults and surgeries we give each other the one thing we have never been given by our doctors. Acknowledgement that this was done to us. Only a mesh injured woman understands what it is like to go through this. By hugging one and another and spilling out our stories in front of family and friends, they learn what it is like to be in our shoes. They understand the deep injury to our minds as well as to our bodies.

We arrived at the Tiverton on the evening of Saturday the 13th of April. My daughter and I were very tired but even so I could not wait to see M again. M is from Canada and she was one of the ladies I met when I went out for removal surgery Oct 11th 2012. She was there for consult. This time she was back for post op. I was also going to see L who we met at the same time and she was back for her post op check. Two women like me who were mesh survivors who could now give great hope to other ladies who were there for their consult. S and P, two more mesh injured ladies arrived within a couple of days and we all met up one evening in the Tiverton House Lobby. Five women sat there with one husband, three daughters and one very special friend. They were there to see us through a very difficult time and make sure we would be okay.

It’s not what you think. It’s not a time of misery. It is a time of joy so that we can share and begin the long journey of healing. Healing time for our souls. Yes there is pain on women’s faces, but there is so much more. Joy that we got to meet someone just like us who has suffered in the worse possible way. Bladder sling mesh is one common denominator. Getting well and hope is the other.

Everyone had appointments and tests to go to but at the end of each day we regrouped at the Tiverton. Chatted and laughed together. Yes laughed. Laughter is the truest best medicine and we made the most of the doses of laughter. Yes we still had pain but for a short time we set that pain aside so that we could get what we needed out of each other. Plenty of love and plenty of hope.

As each lady left for home after their appointments we hugged and said our goodbyes, promising to stay in touch with each other. It was a given that we would see those through it who had to face upcoming surgeries and we never had to say it.

I had one test on Monday 15th and another on Tuesday and my surgery was on Wednesday the 17th. However I thought about each woman as their consults or post op appointment time neared. I knew they had the strength to make it through.

After my own surgery I received a note from another woman who was also there for a surgery. I was leaving Friday morning so we planned on meeting in the Tiverton lobby around 6 pm Thursday. My daughter had gone off with the Canadian family for a break that afternoon and had thought she would be back in plenty of time but she did not realize the extent of the L.A traffic. I decided I needed to walk a bit because it was not good to lie in bed all the time. So I put on a robe and carefully walked behind the wheelchair the Tiverton had loaned us when we got back from surgery. Due to pain at that time I was unable to walk from the lobby to the room and they allow you to use any equipment they have. Take advantage of it as you do not want to fall when you are so drugged up.

I literally crept to the lobby and sat on the wheelchair on a pile of pillows I brought from the room and I waited. Three people soon stepped through the front door of the lobby, two women and a man. G was there for another surgery with her husband and in tow was yet another Canadian lady. Canadians have no one to remove all their mesh and they have partial removal after partial removal, remaining in a state of constant pain and a downward spiral. Those who can pluck up the courage and borrow the money to head for UCLA to have their mesh removed. The word is out in that country. Either remain in pain by continuous partial removal surgeries and allow their government to keep saying “We have the doctors who can remove it” or do what they have to to survive and live once again. These brave women make the decision to save themselves. C was another woman who said “I am going to survive”.

G had to be up and 4 am to be at surgery early so we did not have long together before she had to go to bed. I asked the lobby to call up to M’s room so she could come down and meet two more mesh injured ladies and we had another gathering of women at the Tiverton Hotel lobby. It was hard for me to sit, but I somehow managed. It’s what we all do. We meet up, hug and spill out our feelings.

When everyone else left my daughter and I sat for a short while with M and her husband. We were leaving the following morning and it was going to be hard to say goodbye. However pain won out and it was time for me to go back to the room and into my bed.

This blog isn’t about my surgery. I will write a second blog and share that part as soon as I can. It is a blog about a gathering of women who want to help heal others as well as themelves. If you want to experience meeting others who share your experience of suffering, send me an email and I will add your dates to my spread sheet of other women who want the same thing. I can’t guarantee I will have anyone at that time, but I will try. If I have someone then I will send you and email to notify you and you can take it from there.

Time for me to rest right now and heal. It has only been three days since my fascia sling surgery and I have a way to go to get well. But I will and so will you…………….

Update.  For new information click here.  http://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/

24 Comments

  1. Bella

    It is so nice to see you hear, to see you blogging. I am so glad that you were able to meet all those wonderful ladies and their support people. I know that is a time you will always treasure. You are now on your way to total complete healing, take the time you need to rest. Take care of yourself. Remember to always listen to your body and never over do it. You have been on my mine this past week a lot.

    With much love,
    Bella

    Reply
    1. lavalinda

      Thanks Bella. As always, mind and body go together and I know I am doing the very best for myself and others when I share.

      Reply
  2. Terri Studevent

    Hello Linda,

    I spoke with someone from Nevada today. They explained that we have similar circumstances. Would you mind if you shared your most recent surgery experience with me? I go back to see Dr. Raz on May 8 to decide about incontinence surgery.

    I am trying to have a good, positive attitude. Would love to hear how you are doing.

    Take care,

    Terri S

    Reply
    1. lavalinda

      Please do share Terri. I will write more and share what this is truly like. The one thing we all want now is complete honestly.

      Reply
  3. Ruth

    Linda you have expressed it so well. There is nothing like the comfort of meeting up with others who finally understand; who “get” what you’ve been going through because they’ve been going through it themselves; who understand the indescribable physical suffering; who share the mental anguish of being dismissed and ignored; yet who also have the inner drive to survive and do whatever it takes to get well. I will never forget meeting you just after your mesh removal and just before mine. You are a beacon of hope to so many!

    Reply
    1. lavalinda

      Ruth I heard you have gone back to the life you were made for and that makes me very happy. Moving forward and finding a new meaning to life is the best thing we can do for ourselves. Life is for living.

      Reply
  4. Angels123

    Linda,
    So glad to hear from you. So glad surgery went well. Look forward to talking when you are feeling better. Sending prayers and wishes for a speedy recovery your way!

    Reply
    1. lavalinda

      Yes Angels I look forward to it. Thank you for replying to those in need while I was incompassitated so that this blog is kept alive and they know someone cared.

      Reply
  5. Patricia (Paddy) Sullivan

    My dear Linda,
    You emailled me so soon after my 2nd explant surgery, and I need to let you know what hope it gave me. I am doing well ,and want to extend my love and best wishes back to you. I have just contacted a colleague of mine in California who does alot of emotional healing. I have recently had work done for myself at an N.E.T conference in Australia (Neuro Emotional Technique) and as a practitioner of this (check out http://www.netmindbody.com) I have found it incredibly strengthening – so if you get an email ‘out of the blue’ it is from the blue across the other side of the world. You are doing an amazing job being an inspiration to other women………. Please send alot of love to your inner child, send a huge amount of love to your pelvis and abdomen and so often I wrap my hand over my belly and tell myself “I love you, I’m sorry and I promise I will help you get better soon”.
    I also often say “I love you” I’m sorry”, “please forgive me” and thank you. On another note……….. this is just a little reminder to all your blog readers and especially those of us who are “meshed up”….. “resentment is like us drinking the poison and waiting for the other person to die”. I try to fill my head and body with loving and healing thoughts although that is often more difficult than the poisoneous resentment… hey we are already poisoned physically without being emotionally as well.
    Paddy…. New Zealand

    Reply
    1. lavalinda

      Very well said Paddy. How we deal with our emotions can definately affect our well being. It is so good to remind ourselves of that and try to turn around any anger we feel into positive emotions. Mesh is a journey filled with anger, sadness and at last joy. Joy that we are alive and we can share good things with others. When I met with the ladies out there in California I was reminded that there is a future and a life for us all. I looked around at the two ladies beside me who were coming back to life since their removal surgery and I was amazed at how well they looked. They still have healing to do but we can heal many others while we do it.
      I know what you have been through will be invaluable with any work you do as you move forward. It brings out our compassion and our abilitity to share and show love with others who are going through this. We are not dead. We are alive and we can do our best work by living that life. We may all be around the world and far apart and yet wde are as close as women can possibly be. I have a feeling many will find a new career because of this. With love to you Paddy.

      Reply
  6. patricia buchanan

    Welcome home Linda! I can hardly wait to hear the rest of the story. After reading about Tiverton House I was almost sorry I had relatives to stay with down there. Health and healing to you.
    Love,
    Pat

    Reply
  7. BatyaSarah

    Linda
    I am happy to hear from you and wanted you to know you are on my mind and I have been looking forward to reading your blog. In the past month you have done so much for me and sharing this blig inspires me to want to reach out.
    Thank you O:-)
    BS

    Reply
  8. lavalinda

    BS, I am very happy you feel this way. There are so many women who still do not know the answer to their illness because they are still told it is not the mesh. Reaching out to those around you, you will find them and be of great value.

    Reply
  9. JC

    Hi Linda,

    I have been reading your blogs and you are so eloquent with your words! I will be praying for you for a speedy and successful recovery! I wil have my consult with Dr. Raz on June 26th, 2013. I pray I can find resolution for this mess. I have had the Gynecare sling and TVT in me since April 9, 2010, with revision February 11, 2012. Funny how I can remember those dates so readily…life changed so much after each one…not for the best!

    Please put me down in your spread sheet. I would love to connect with others as well.
    Thanks,

    JC

    Reply
    1. lavalinda

      JC I know someone who will be out there at tat time and I will put you in touch.

      Reply
  10. Barbara

    I’m so glad your surgery is over and I hope it is a success! I look forward to reading all about it next. You have been in my thoughts and prayers. It was so nice to hear you speak about the other women that you have been blessed to meet in this most unfortunate way. I sometimes think I’m “the only one” who’s going through this and no one understands. You’ve reminded me that there are so many other women just like me who are suffering. Thank you again for sharing your blog. It is because of you that I now have hope of a better life. I will see Dr Raz on June 12. It can’t get here fast enough. Blessings~

    Reply
    1. lavalinda

      Barbara as soon as I am able to move to my main computer I will try to get you added to the spreadsheet and hopefully you will meet someone else while you are out there.

      Reply
  11. Barbara

    Thank you. It would be nice to meet other women during my visit in June. I do have a couple of questions when you feel up to answering. You’ve probably addressed these already. 1) After the mesh removal surgery, did you have a physician to care for you in Houston in case of complications? 2) How long was it before you had to go back to LA for your check up after the mesh removal surgery? Wishing you continued healing.

    Reply
    1. lavalinda

      Like most of the women who go through this I did not have a doctor I trusted at home. Fortunately I did very well on my own and I am very grateful I got through it. It was of course a huge concern, but like all the concerns I had from the day it was put in me, I handled it a baby step at a time and tried not to ‘invent’ possiblities in my head. You tend to learn to take things a day at a time with mesh. I did have a back up plan, Dr. Raz answers emails almost immediately and he would have instructed my family practioner as to what meds I needed if/when I needed them. They cannot send your pharmacy any medication requests, it has to be done through a State doctor. Each doctor is licenced in any State and cannot practise across State lines.
      Because I did so well and knew there were no complications from my surgery, plus I found out immediately that I was incontinent and would have to go back for an additional surgery, I waited and had eerything checked out at that time, six months later. Some women feel well enough to go back after six weeks whereas others don’t and wait. Two ladies were out there for post op when I was there this time. One lady six weeks later and the other four months. The latter had a lot of repair done along with removal and it took her awhile to heal. It all depends on sling type, type of removal, abdomen or vaginal. Only the removal doctor can address these concerns. I told Dr. Raz via email I was doing well and I was totally incontinent and would wait to go back. He did not press me to do otherwise.

      Reply
  12. Barbara

    That is my issue. I don’t trust the dr urologist who put in the sling to go back to him if complications occurred but I do have an ob/gyn and a wonderful internal medicine dr that I’m sure can take care of any issues that I may have. Thank you again for your answers. I pray you are doing well.
    Blessings for continued healing~

    Reply
  13. Terri Studevent

    Hello,

    I would love to meet others, give them support and get some as well.

    This journey has been rough, down now. Had complete mesh removal March 28th with Dr. Raz. Please add me to your spread sheet as well. Please

    Thanks,

    Terri S.

    Reply
    1. lavalinda

      You said March 28th. Do you mean May?

      Reply
  14. Terri Studevent

    No, I had it done almost four weeks ago. I am recovering right now. Completely incontinent. The weird thing was I couldn’t feel anything regarding my bladder. I can a tiny bit now but can’t control it at all. Anyone else have that experience?
    I am suffering. I don’t mean to be a downer, but I can’t believe they would use such harmful materials in us, especially without testing them. I had complained to my doctor immediately he made me feel like I was lying, he actually told me ” I was the only one who said it hurt me”. I sat in his office crying from the pain.

    Well it’s out now. I just hope I can find normal again.

    Thanks,

    Terri

    Reply
    1. lavalinda

      Sorry Terri, I thought you were asking to meet others when you went out there to have surgery. So you had complete removal at UCLA? I wrote 4 parts to my surgery trip and cannot write more at the moment until I know the result. I am still using a catheter. I gather you would like to know how this works so that you can go back to get the fascia sling done? I have shared every detail abd when I know more I will share with you here.

      Reply

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