My Fascia Sling Surgery Part Five

Life is full of challenges.

Before I write this blog I want women to know that living in a fishbowl where everyone is watching and waiting is not an easy thing to do. Frankly I do not know how anyone does reality shows, but of course it is financially viable. For me I could not stand it. However I put myself in this position because I know what is happening to women all over the world because of bladder slings and it is destroying their lives. So it is always with this in mind that I choose to write about my own very personal experiences. This means I go to places no one else is willing to go. Personal stuff as well as things no one wants to talk about. I also learn from other women’s highly personal problems with mesh because they want to help other women and share through me. There are times when I do wonder why I do this, but then all the comments left on this blog and my knowledge of women helping other women has made it all worthwhile.
Ladies we are on our own. But by joining hands we are together and will get through this. There is power in numbers and power in women’s voices. We are standing up in larger numbers and the Internet has allowed us to realize there are MANY more of us than those with their own agenda will ever admit. By getting well and spreading the word to other women we have put together a network of women that is unstoppable. Keep it up because you make me so proud.

As promised I will update here on the highs and lows of my fascia surgery. Please understand that this is my experience and not to be taken for granted that anything at all will go the same way for you. Each of us has our own journey. I share the truth whether it is good or bad. The road to recover from mesh is long and has many twists and turns and sometimes we reach a crossroad and wonder will things will ever work out. It is with that sentence that I will tell you that I did remove the catheter two weeks after the reconstruction and fascia sling repair surgery was done at UCLA.

Everything went so well from the beginning and after resting at home I spent the first week after surgery feeling very positive. I did measure the incision across my lower abdomen and it is 10″ wide. (I was curious) Paper tape sutures held it together with a dressing over the top. More dressing was over the pelvic area and under it were two sutures where the sling was anchored. After a couple of showers, both top dressings came off and under them revealed what was done. I could see the main incision areas between the sutures, so I got out my 40% zinc diaper cream, a trick I learned over the years that would heal up anything. In fact I even use it on my little dog when he gets any sores or after grooming to heal the rash from shaving. Like me he has ultra sensitive skin. I am a natural redhead with Irish descent so I am blue eyed and very, very fair skinned. I used to use Desitin brand but found Target’s UP brand had the same ingredients for less money. So over the sutures still in place I added the cream. I did this every day after a shower. I had used this cream when my daughter was a baby and found it magnificent for healing. It has been in my household ever since that time, over forty years ago.
The paper tape sutures are supposed to roll up and fall off in time but I learned from the first surgery it probably would not happen, so after a week, I climbed in the shower and removed them. A week after my mesh removal surgery they did not fall off so I emailed Dr. Raz and he told me to get in the shower, get them wet and slowly remove them. It would hurt very much if you do this while dry. This time, once the new sutures were removed, I could see how brilliantly the scar between sutures had healed in comparison as the areas under the sutures, so I carried on every day adding the cream after every shower. The result. In less than two weeks the scar is so down played and beautifully healed and looks great with no pulling or angry looking areas annoying me. I was so happy. I should also tell you that the hard part was over after one week. The hard part was where it hurt like crazy when I got up and down off the bed from the incision across my stomach. So everything looked great once healed and now all I had to do was wait to get the catheter out! Whoopee!

So two weeks after surgery I woke up early and could not wait to remove the catheter. I showered first and then set about cutting the tube exactly how I did it after the removal surgery. I must tell you the first time I was a bit nervous but had talked to many women who had done it and they were fine. I found a good link on the Internet to view and slowly and carefully pulled it out after all the water was gone from the bulb and the catheter was totally deflated. If you are afraid to do it, then go to a doctor. If you begin to remove it and it does not come out easily or hurts, go to a doctor or the E.R. Once I did it after removal surgery I was not worried, but I was cautious and slow in removing it. Believe me when you cut it, it will drown you if you do not have a towel handy and the bulb will deflate easily. I learned to be brave because so many other women are brave and I knew if there were any problems, I should go to the E.R.

I can tell you I was concerned about infection. Catheters are known for it and we mesh women do go through some radical surgeries. I was highly lucky after removal but it was only in me one week. I was quite excited when it wasn’t too long before I could go at that time and everything went well. This time the catheter was in the two weeks and on the 8th day I noticed a light pink tone to my urine and I had increased bladder spasms. Red flag. So I emailed Dr. Kim and told her and asked if the antibiotics should be increased. I told her what I was taking and how much. She said yes and called in more so that I could et through the weekend. She also included a prescription for spasms. I drank plenty of water, took the antibiotic and it got better. Pink was gone, urine clear and spasms small and here and there. I should also tell you that the spasm medication was Oxybutynin which on the very front page stated ‘this medicine may cause the serious side effect angioedema. My history with this made me think “no way”. If it is on the front page and not with other warnings, then it is bad for those that this has happened to. I decided to suffer through bladder spasms. Fortunately they lessened and I did fine.

Before I continue, I must tell you because of my past with the hell of catheters after the sling was put into me, I will do anything to try to avoid infection. No coffee or anything with caffeine. No spicy food and a ton of water. I keep a really nice insulated jug full of water in my bedroom and whenever I get up to empty the catheter bag, I drink a glass. My urine looked good until that slight pink day.

One I removed the catheter this time I was slightly worried. My urine looked great but the two nights before I felt uncomfortable around my urethra. It was a burning sensation. However with my urine so clear and spasms not increasing I thought perhaps my body was reacting to the catheter and all would be well after it was removed. We are all highly nervous after a catheter is out because we all fear we will never be able to pee on our own again. No one who has not been through all this could understand the mental stress we go through. This is why when doctors announce to the world that our symptoms are ‘manageable’ we all want to scream. And of course we want to put a sling into every one of them that say this. Anyway, nothing happened at first after removing the catheter so I wandered around and waited. In an hour and a half, spasms and burning became intense so I called UCLA and talked to the doctor on call. She told me to go to the emergency room, get them to do a urine culture and a bladder ultrasound.
I quickly dressed and my daughter took me fifteen miles to the nearest small hospital E. R. By the time I got there the spasms were so intense and I could barely breathe for pain. I handed my information to my daughter to check me in and I asked if I could please lie down. I was immediately escorted to a room with a flat gurney and the nurse said would be right back. The incision across my stomach was not healed enough for me to lay flat and my leg injury from the sling would not let me lay completely flat. When the nurse came back, she put the gurney in a better potion and put a pillow behind me and one under my knees.
I began telling her about removing the catheter and the surgeries I had been through. She stopped me and asked about how I removed the catheter, saying her sister had had a hysterectomy and a sling put in a month before and when she removed the catheter, she did not do it slowly enough and it caused her issues. She did not know of course that I had a three year World degree in mesh complications. Sounds funny I know but this is what happens when you begin a blog and women tell you EVERYTHING that has happened to them. Anyway, all I heard was the sentence about her sister and I knew I had to tell her that her sister could be in trouble. I knew that if she had any problems at all that early in the game, then there was a good chance she would have more.

I began spilling my guts to her about the blog and all the suffering of the women of the world. She looked a little shocked or surprised and told me they had seen other women come in like me. I told her that when a woman goes to a doctor she is told “We don’t use THAT sling” and I also told her that this was happening with every sling on the market. I know because I hear from women who have every type and even I can’t keep up with it. Before I knew it she had drained me and had given me intravenous pain medication which immediately took care of the spasm pain. I had been a knotted ball of muscle contraction up until that time and I finally became relaxed. It had been pretty bad.
My mind was still on this young woman’s sister. Flashes of all the young women who have spent a good portion of their lives living in pain, shot through my mind. Those whose kidneys had been damaged. Lying in bed with nothing but a phone for their connection to the world because they have been told “It is NOT the mesh”. Those who no longer played with or went to their children’s growing up events. I had to get it across quickly before her sister became another young mother who didn’t have a future. I kept talking. I told her that I was not trying to scare her but I knew things others didn’t. My daughter wrote down this blog address and handed it to her. She left the room.

I sent my daughter off to get some food and drink. Neither of us had had any breakfast. It had been a rushed morning of panic and pain. I laid there with my eyes closed to block the bright room light. I didn’t have much time to think about me and my situation because I thought of all the women who had been going in and out of E.R’s over the years. Panic and pain. Anger and sadness. Overwhelming loss. Loss of family, financial stability, relationships, and careers. Sad, sad, sad.

A young woman came in to do the bladder ultrasound and I told her all I had been through. Every woman had to know what was happening to other women. I had a duty to tell them. A doctor who I had recognized as one I had seen before while in this same E.R came in and I told him what I had been through and why I was there. He looked sympathetic. Everyone I came in contact with at this E.R was kind and gentle. I had noted this in the two times I had been there before mesh removal. It was a positive experience from a negative issue.

Like I said I had been there twice before. The first was October after the sling was put into me that March of 2010. I had begged the doctor who had placed the sling in me to help me. I had fallen after my leg gave out under me after a sharp pain in my leg and groin. It had happened often as the leg pain increased. But I never thought I would fall. I found out in this E.R that I had two cracked bones in my wrist. More doctors visits, money and pain. Eight weeks of a cast and a lot time of healing. I then admitted I needed a walking stick. That was only part of my journey through hell.

When my daughter came back to the E.R we waited until I was released. Home looked really good to me and I wanted my freedom. I was very tired and felt drained. Fortunately I was no longer in pain.

I sent an email to Dr. Kim and gave her all the details. I had to wait to check on the lab culture and yesterday I called and asked if it was done. They said yes and I gave them Dr. Kim’s fax number and info and asked that they send it to her. They said they would. She emailed me and suggested a new antibiotic that I was not allergic to and told me I need to keep the catheter two more weeks. That was not easy to hear.

Like you I have been through many bumps in the road. I worry and I fear, but somehow I must remain positive that this bump will soon become a smooth ride. So now you know where I stand today. I will get through this. I do wonder why I have to go through any of these bumps but perhaps this time it was to meet a young woman who can now help her sister through her own nightmare. I have to always think positive and I hope this was the reason for this bump in the road.

Mesh is a journey……………….
Update.
After going to the emergency room I was too tired to worry about why this happened, and I needed a day of rest.  Then I emailed Dr. Kim and asked what she thought.
She said “We did extensive dissection and most likely there is Inflammation as well as fluid collection in addition to urethral damage from mesh”.
So ladies, I am going to be patient with the healing process and hope for a good outcome once healed.

 

 

12 Comments

  1. Lisa

    Thank you for sharing your journey with us…
    Catheters or any foreign body (like mesh), can cause problems.

    Reply
    1. lavalinda

      Thanks Lisa, I have never done well with a catheter.

      Reply
  2. Paula

    Linda, oh my, Linda. So I guess the bladder culture came back positive with infection. UGH! I am so sorry you are going through this. You are so brave and have been such a help to so many. I admire you and thank you for all you do. I pray you well again and that life will be back again soon.

    My love,

    Paula

    Reply
    1. lavalinda

      Paula, I am doing so much better and I think the main problem is I need to heal more. Thank you.

      Reply
  3. DebCNY

    Wow Linda…. what an adventure, huh? A journey for sure. One we’d all rather not be taking – but, since we are I’m so glad you are willing to share. I know it is because you care so much about helping others, even though it is not easy. Thank goodness there are people like you out there. I give you a ton of credit and know that so many women are benefiting, as did I, from your blog. I’m sorry you had the complications, but glad you are on your way to brighter days now. Must feel so good to have the mesh removal surgery, AND the non-mesh repair surgery DONE. =)! I know things still aren’t easy… it takes so much time to heal – but, hopefully at least now you are on the upswing. I do recommend the MFR (MyorFascial Release Therapy) that I mentioned when you are up to it. While I’m still limping and working on recovery, I do feel like the MFR is really helping. There are a lot of different techniques,so here is the link to the therapist I’m going to, who said he can refer people to other therapists in other areas (he travels and does seminars to train other therapists): http://www.myofascialpainrelief.com/treatment/pelvic-pain-and-dysfunction/

    Take care, Linda… rest rest rest…. and have a wonderful ER free weekend!!! =) <3

    Reply
    1. lavalinda

      Thanks DebCNY. Yes, this truly is a journey of many twists and turns, and e always have to hang in and stay strong and positive. I am glad you left your therapist link here. There are so many women with leg injuries and although the great doctors at UCLA can remove the mesh and repair us, we have to find other methods to get back into life. It’s that ‘think out of the box’ method that often works. I want to get well enough to look into it. In the meantime I am trying other things in the hopes of healing the nerves. I hope women will never give up…….

      Reply
  4. peggy

    Linda so sorry you went through that ! So what was the cause of infection? the catheter itself or were you unable to empty completely?

    Reply
    1. lavalinda

      Peggy I am going to write an update here on the blog.

      Reply
  5. Terri Studevent

    Dear Linda,

    Your blogs must be hard to write, however I thank you every time you write another one. I have tried to personally reach you before, but I see your going through so much. You are helping me get through my own journey. I am so glad when I see you’ve posted yet again.

    I too am having my own horror story. I had a doctor talk me into a sling when I only had a small rectocyle in April 2010. What a liar he was. I wasn’t even having an incontinence issue then but he convinced me after seeing 8 doctors previously that if he corrected the rectocyle I would then be incontinent. Come to find out he was associated with Coloplast and he just mostly wanted to use me as a guina pig. Now I have had one revision surgery by him 10 months after original surgery and then just March 28th of this year Dr. Raz removed all my mesh. I was having so much pain with sex, constant infections, hormone inbalances, hair falling out, radiating pain and much more.

    I find myself now severely incontinent and trying to heal everyday. I almost lost my life with the removal. I lost 2/3 of my blood and I don’t take transfusions. I just saw Dr. Raz on Wednesday and booked another surgery on July 8th. He still hasn’t decided whether he will need to repair my Fisula or make a sling taking muscle from my stomach(like yourself). He said he will decide 1 week prior as to what I need. So here I am, with Depends on, in wait of that day. So humiliating this incontinence, I was very active, fun loving and had a very athletic life reduced to this. However, I am very hopeful I will recover fully leading a “new normal life”.

    It sounds like we had similar situations and you serve as an inspiration to me. I believe you’ve had more complications however, you are always encouraging to me.

    Once again, it’s wonderful to have support in this way. Thanks so much.

    I hope you continue to heal, many good thoughts, hugs and love to you.

    Terri S.

    Reply
    1. lavalinda

      Terri, there are so many women who need help every day and I barely keep up. I fell asleep early last night and was awake at 4.30 am and I am answering comments now. I am on a laptop with pillows on top of my stomach and it is perched on top. Not an easy angle to type and I am much slower, but I get there. Right now I can’t sit at my main frame computer until the catheter is removed so I cannot access my list of women who will be out at UCLA when you go, but I know there are some you will meet and it will help you tremendously to have their support.
      The reason Dr. Raz cannot make these decisions early as you will have the tests that will give him an idea of your current situation. Then he can do what is necessary to get you back on track. I know women who have ben through this surgery and they have not had any complications. I am going to add an update on this blog as to why I did. Please do not worry. We have gone through half the battle and we are 100% better off than most women who have not been able to go hat far. We are half way home……..

      Reply
  6. SojournerPA

    Thanks for the tip about Target’s UP brand zinc oxide ointment. It only costs about $2.49 for the 4 oz tube (40% zinc oxide) compared to Walgreen’s brand which costs $6.99. Now that’s a bargain!

    Reply
    1. lavalinda

      Glad to help. All his mesh business costs us so much money and any savings is important no matter how small.

      Reply

Leave a Reply to lavalinda Cancel reply

Your email address will not be published. Required fields are marked *