First Test Down at UCLA

It is only ten in the morning here and I feel exhausted.  My poor room mate has suffered endlessly over several years and her agony is heart felt.  Last night she was in so much pain she did not sleep at all and I am grateful that right now she is having surgery by Dr. Raz.  She deserves to have some relief to her pain.

As I listened to her terrible moans of agony during the night, I thought it was high time that manufacturers of mesh and doctors who still believe it does not harm us, be forced to see and hear what I see and hear.  All I can say is, it is the cry of utter torture being delivered to a woman’s body, that is relentless.  It makes me very sad and very angry that any woman be subjected to this and her voice is not being heard.  Now I await news that her surgery is over and she okay…………

Yesterday was a hard on me because I had another urodynamics test scheduled at UCLA.  This was the third time I have done this so I understood what would happen.  However, it was the first time I had to contend with the ‘boat on rough seas’ issue that goes on in my head and eyes, both night and day.

I took the shuttle from the Tiverton because although it was a beautiful day, there is no way I can walk outside in sunlight and make my way to the building.  Bright light and well as dark make it more difficult for me to navigate when walking.  I cannot risk swaying too much and falling because the last thing I need to add to my life is a broken bone.  So I take no chances.

The fact that UCLA offers a free shuttle service to the hospital or other buildings is amazing.  I did think to ask a few questions when riding, such as if it runs on weekends.  It does not.  I had hoped it did because not only is my room mate having surgery today, but another women I have been in touch with over a long time, is also having removal in the hospital.  I had hoped to visit both tomorrow just to let them know how much I care, but without the shuttle it is impossible.

During the week it runs long hours, beginning at 4.30 in the morning until 6.30 in the evening.  If you cannot walk the morning of your surgery and you have a 7 am time slot, you have to be there around 6 am.  You can go to the front desk and they will call the shuttle to come and pick you up.  This will save you a taxi fare.  Give around 20 minutes for them to arrive.  It will take you to the hospital if you are being hospitalized for surgery, or the Ronald Regan building if you are going to be there for day surgery.  Be sure to give the front desk a call the night before and ask for a wake up call in your room.  No need to fear an alarm not going off and missing your time slot.

Like I said I used
the shuttle to go to and from the Ronald Regan building to have my urodynamics test done yesterday.  Diane the nurse who does this test is always kind and very efficient.  I did ask her how many of these tests she did in a day and the answer was seven.   Because I have not been able to urinate since my last surgery, Dr. Kim gave some additional instructions of pictures she wanted taken of my bladder when in action.  I was happy to watch the screen and saw my bladder definitely was full and nothing I did could make the urine flow happen.  What des this mean?  I won’t know until I see the doctor on Monday and have the cystoscopy test done and see what she says.  Surgery is set for Tuesday, so then I will know what she proposes to do to help me.

The trip to the Ronald Regan building tired me out because after awhile of trying to walk with constant movement where my eyes and brain do not work together, all I want to do is close my eyes for awhile and rest them.  I find walking through corridors is very hard.  Here at the hotel it is not too bad so long as I do not stare straight ahead.  I look straight down while walking to avoid  finding myself veering from side to side, which results in extreme dizziness.  But the Ronald Regan building with its shiny floor tiles was much harder because of light that bounced back at my eyes.  So I took extreme precautions to move slowly and stopped many times so that I did not find myself veering too far, one side or the other.  It is a big learning curve to maneuver around with safety in mind.

Just as I waited for a bus to arrive I received a phone call from a woman who was back for her post op visit with Dr. Rodriguez.  She wanted to meet me so I told her I would be at the Tiverton lobby within a short while.  It was not that long ago that she found my blog after three years of agony and hell since her sling was installed.  It had only been five weeks since it had been removed and I was anxious to visit with her and see how things went.

She told me over the phone that my blog had saved her life.  Like many women she had such difficulty trying to get to her job and she had missed many days of work when she could not make it.  She had a disabled parking permit which helped, but she was finding herself at a point of no return and she wondered how on earth she would get through until her surgery and keep her job to pay her bills and medical insurance.

When I met her she told me she remembered me writing that if you have to get through minute by minute, hour by hour, day by day or month by month, do what ever it takes because the reward will be worth it.  She did.  By the time she made it to surgery she was in a wheelchair because the pain in her right leg was so immense when she tried to stand on it.  You should also know at this point that her sling was the same type as mine and a TVT sling, not a TVT-O sling.  This is important because doctors do not believe the leg pain happens with TVT.  It definitely does!

Her two sons came with her when she had the surgery and she said they were her amazing strength.   She had always been there for them and now it was their time to be there for their very sick mother.   They passed with flying colors and are a tribute to her as a single mother raising two boys.

We met in the lobby, sat down on a couch and began talking and instantly felt comfortable with each other.  She has a personality that shines along great determination.  Her laugher was infectious and her spirit strong.  AND she now walks without any help of a wheelchair or walking cane.  Yes her nerve damage in her right leg continues but it is mild in comparison with how it had been for a long time.  Even pain meds did not ease it at that time.  Now she has reduced pain meds as needed and hopes one day she will be able to discontinue using them.   She is adjusting to her new life and learning that she must do things in moderation.  But she is thrilled to walk again.

You know the spiritual tent shows, where they have people get up and walk out of wheelchairs?  Well that is what the urologists of UCLA are doing for us.  When I saw her I wanted to shout with joy because one more woman has her life back.  Not perfect, but with time, maybe the nerve pain will be manageable so that now she can do things she never thought possible.   This is my wish for every mesh injured woman.  To smile the brightest smile of this woman because she feels great joy again.

She told me that this experienced had changed her life in more ways than one.  Things she thought were important before her mesh injuries, no longer were.  She has decided to make changes in her life and do something that makes her happy.   Her boys are grown and she as an artist wants to feel there is more to life that a job she no longer enjoys just to pay bills.  I know she will find whatever it is that will make her happy AND pay the bills and I wish her well.  I can see it in her eyes that she is one determined woman who will do whatever it takes, the same as she did to get out to UCLA and have the mesh removed.

Five weeks since surgery is not long to be doing so well, but I am thrilled for her.  A great deal depends on attitude, taking supplements to keep your health and getting the mesh out as quickly as possible.  She did all of the latter and now she is being rewarded.  Another great joy for her is that the day it was removed her brain fog left.  Like many women it made life a huge struggle.

I hope many women will read this and find a new determination to get out to UCLA and find a better life.  To see this woman yesterday was the greatest birthday gift I could ever receive.   Her joy is my joy and I celebrate every woman’s life that has been saved by having a terrible product removed from their body.  It gives me great hope…………..

5 Comments

  1. Terri

    Linda, I also have the TVT sling with the pain getting worse everyday in my inner thigh, down my entire right leg and it’s becoming so unbearable I wish I could just saw it away, My removal is in September with Dr. Raz and it’s because I have that day to focus on that gets me through the days ahead.
    The physical pain of mesh is horrific and with that comes the depression because you can’t do the things you need or want to do, that WE should be able to do..
    . I pray that the test help Dr. Kim to resolve your issues with voiding and that those having their surgery today are finally mesh and pain free.
    Love & light to each of you!

    Reply
    1. lavalinda

      Terri I remember wishing at times I could just cut my right leg off after many nights filled with unbearable pain. Now it seems absurd for me to think that way, because now I am mesh free and that terrible pain is gone. My room mate is now mesh free and in recovery. I was so worried about her last night, but I know today is the dawn of her new life. You will find the same. Forgot to say that the lady I saw who had removal by Dr. Rodrigues is NOT incontinent either. How wonderful for her not to worry about any of these issues. I am thrilled for her.

      Reply
      1. chris

        Hi! I just posted a response to Gena about my post-op bloody abcess caused by my careless doctors performing multiple corrective vaginal surgeries and a hysterectomy. Not so funnily, i forgot to mention the thing that has been on my mind night and day since it was inserted in me in 2011, which has ruined my sex life and ended my relationship, and which has been and continues to be symptomatic: a TOT bladder sling. I’m told it has shrunk and hardened and that’s why i had pain with intercourse and what was probably scratching my boyfriend when we had intercourse. And it certainly didnt fix any incontinence i was having from a cystocele. I am 54 years old and feel I’ve lost the quality of my life and wonder if i will end feel normal again, regain the feeling of having a warm, welcoming and hospitable vagina ever again. I want what my doctors took from me… my sense of womanhood back, and the years that i lost feeling abnormal and in pain. I have consulted many doctors for the mesh complications i have because I already experienced such a letdown from my original corrective, and failed, vaginal surgeries that i am doing my research this time. Like others i have met with a variety of responses. Its been exhausting, not to mention time-consuming, and costly!as having these conditions precluded me from being able to get/afford health insurance, since i was labeled a “high-risk” patient, with pre-existing conditions, which came at too high a price… only making matters more stressful because paying out of pocket for all of those initial consultations gets expensive, especially when it becomes a dead end.
        So i want to let you know that i plan to contact those doctors at UCLA and am so grateful for this information which will hopefully end my seemingly endless search for the right and best solution to this problematic bladder sling. Wow! I can’t believe i “forgot” to mention it earlier when it dominates my thoughts on a daily basis. I guess sometimes the brain just needs a break from it.
        Thank you again. Very much!

        Reply
  2. adrenna

    I fly tomorrow to LA from Montana to see Dr. Kim. I had my mesh sling put in February of 2013 and the problems started soon after. I kept getting testing for UTI’s and even bought a new bed since I thought that might be causing the pain I was having. Finally, the pain was so severe I couldnt stand it anymore. The OB who put the sling in sent me to a Urologist. He actually listened to me and looked at all my lab results. He found white blood cells and blood in my urine in every UTI test I had done. He did a cycstoscopy and found the mesh had erroded in my bladder and had large bladder stones all over it. Thank God! Someone finally found what was wrong. I did research and found this website and called Dr Raz’s office. He couldnt see me until May but Dr Kim could see me in March. The pain had put me in the ER a couple of times and I wanted to see someone as soon as I could. I’m only 46 years old and normally very active. I have horses and usually ride often. I have a great job that I usually love to go to. I havent ridden in 9 months, I only can work 4 hrs a day. Thank God I had coworkers give me sick leave or I have no idea what I would be doing financially. I know I have a lot to be grateful for. One is finding this website and learning who to go to instead of having other doctors try to fix me and never be able to. I live in Montana, so going to LA is a few airplane rides. I reserved wheel chairs like you suggested, since walking makes the pain almost unbearable. I leave tomorrow to see Dr. Kim and all I feel like doing today is crying. I am at work for my 4 hrs, but my emotions are all over the chart. I am normally a very strong and independent woman and feel like I have lost that part of me with all of this. However, I am excited to start the healing process. I have a lot of family and friends who are praying and sending positive energy my way. Thank you for having this website. It has enabled me to take charge of my life a little again and go directly to the best doctors for our problems.

    Reply
    1. lavalinda

      Adrenna, this is a very emotional journey fueled by doctors lies and a lot of time suffering. I cannot get your through that and thankfully you have people in your life who care, but you are on the road to a better you. So hold on because things will improve with time. I do know how much you have suffered.

      Reply

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