My Fascia Sling Surgery Part Twenty-Two

It’s seven forty-five in the morning and I removed the catheter fifteen minutes ago. Now I wait and wonder. I hope I have got rid of the infection that began after I came home because it worries me that if not I will be back in the ER again. I have been there far too many times as of late and they know me well.

My bladder feels uncomfortable and that has me worried but there is nothing I can do until I see how things go. It usually takes an hour and a half to two hours to see what will happens after my bladder wakes up. Will it be so angry I am thrown into a flurry of agonizing spasms? That is the question I will wait for answers once again. I did not remove it early because if things don’t go well, I would have to wake my daughter and rush to the ER. Not a pleasant wakening for anyone so, I was patient and waited.

I used to have visions of a normal life, being able to urinate like I used to but these days when I remove the catheter, I have a wait and see attitude, hoping I don’t wind up in pain. Bladder spasms are very painful and when the bladder has slept awhile, it doesn’t like waking up. The catheter has been in me for a month now because I could not travel out to UCLA without one. Then Dr. Kim told me I had to keep it in two weeks after surgery. I have drunk piles of cranberry juice, taken the antibiotics and plenty of probiotics to try to stave away any results of antibiotic use. I know what to do by now and I do it all, but even then things don’t always go to my advantage. So I am learning to cope.

I hate the catheter and yet without it I would be dead. You have to be able to remove the waste from your body or you will become toxic. The very thing that helps me, also hurts me. I get constant infections when it is in me and often the discomfort I feel is miserable. Since the day I had bladder sling surgery in March of 2010, the catheter has been in me for a good part of my life. I always think maybe this time will be the last time.

I downed a glass of cranberry juice and took two marshmallow root capsules in order to calm my bladder as it begins to fill. Marshmallow root is my friend. Without it I often wonder what kind of mess I would have been in during all this time. I can’t prove what it does and I have no desire to. I just know it works.

There are thousands of women doing similar things as I am. I’m not unique by any means. The difference is, I tap my fears on a keyboard. However, my fears are also their fears.

So now I wait to see how this goes. I am surprisingly calm and collected. There are no expectations going through my head. I don’t know what will happen and I can’t change what does. Perhaps that is better for my mind. In fact I am sure it is. I just give myself over to what will be, will be…………….

I wrote the latter yesterday morning and then tried to be normal for the rest of the day. I did small things around the house that I knew would not compromise my healing. I allowed my small dog to climb on me after I protected myself with a big fat pillow. When he tired me out I moved through to the bedroom to rest and watch TV. I would like to say I forgot about the situation I am in but of course that is impossible. When I felt the urge I went to the bathroom and was rewarded with a dribble. I was disappointed. By lunchtime I self cathed and removed more than I had been able to do on my own. I wasn’t surprised, just disappointed.

I got through the day like this and then the evening. My bladder had stayed quiet which was a relief. I self cathed before I retired and knew I would be woken up when I was full. At 1.30 in the morning I felt stress. Bladder spasms began and self cath relieved it. It took awhile before I went back to sleep and I awoke again at 3.30 am. More spasms. More self cath. I managed to go back to sleep until 8 am and then it happened again. Time to get up and self cath.

During the day my bladder is calmer. It is night when I make the most urine and the tide of events begin. Right now I have to work at teaching my bladder not to be so overactive at night. I managed it before without any drugs but it takes awhile and some work. Plus right now I am only two weeks past the last surgery and I am still healing.

The result of this surgery doesn’t look promising. But I know now I have to leave well alone and learn to live with it while I heal. I am tired of surgeries and tired of doctor’s appointments. If I can I will try to heal by doing the best possible plan of supplements and vitamins in complete regiment.

I’m not complaining. Not seeking sympathy. I am learning that you can’t always fix things and to keep trying can make things far worse. We don’t see the results of all this when it comes to the inside of our bodies. This isn’t plastic surgery gone wrong. Everything that is messed up is hidden from view. We look perfectly fine on the outside. We look normal. But sadly many of us are not.

It will be another four weeks until I can sit more comfortably and when I can I want to put the things back into my life that make me feel happy. I will go back to designing hats and begin to rebuild my business that has taken a large decline over the past year. I will be limited in what I can do away from the house because of self cath but I find solace in my own home. However as I heal I may see improvement and may be able to leave the house more than four hours. The future isn’t in my sight and I can’t predict.

For the next month learning how to make my life workable will take a lot of concentration. As with anything new, it takes time and you can’t rush it. But that is okay. Slow and easy is something I have been forced to learn.

This will be the last post about my own issues until time when I either know things have improved. I am forever hopeful………………

 

 

11 Comments

  1. caroline

    Hi Linda, I am an avid reader of your blog, I just wanted to say how much I appreciate you sharing your mesh journey with people like me. I am a mesh survivor myself I have had a bladder sling (2006) and rectopexy mesh (2009) inserted for incontinence and prolapse. These both caused much pain and infection.
    I have had a partial removal of the bladder sling (Jan 2013) and hopefully a full removal of the rectopexy mesh and major repairs, including an autologous incontinence sling ( june 2013) . Anyway many thanks for sharing your journey when you have suffered so much yourself,
    it does mean alot 🙂

    Reply
    1. lavalinda

      Thank you Caroline. I hope some of the pitfalls I have experienced will help you and many others avoid them or know what to do to get over them.

      Reply
  2. a meshed-up nurse

    Yes, sometimes that’s all we can do, Linda. Take it slow and easy, hoping for and actively working towards the best. Some things we can control and some things we can’t. Please know that you are still very early in your healing and can still improve a tremendous amount. Keep up with those positive thoughts….

    Reply
    1. lavalinda

      I agree. It will take time to understand my situation. In the meantime I keep reading and learning how I can deal with it.

      Reply
  3. Suzy Ward

    Well, finally came over to read some of your blog .
    Got a bladder sling and abdomen hernia repair .
    And plenty of pain and problems .
    No easy answers .
    But I can read and comprehend the seriousness of this all

    I just can’t do more surgery .
    Take care new friend
    Suzy

    Reply
    1. lavalinda

      Suzy I understand how you feel. It is horrendous we have to go through all this. I feel sad for you that you have to live this way.

      Reply
  4. Barbara Vance

    Linda~you’re in my thoughts and prayers daily. You are a beautiful lady.

    Reply
  5. virginia

    Hi, my name is Virginia . I’m 33 and had a mesh/bladder sling put in back in November 2012. I had a huge , nasty ,ball of cottage cheese inside me after my surgery. I has a fever and chills and I had to have a cather when I left the hospital. It was so painful I had to go to the ER and have them remove it . I’ve had the most miserable 9 months of my life . I can’t urinate , I have to turn on water to be able to drain some of the fluid in my bladder. It hurts way worse than any UTI infection in the world. When I do urinate , I can feel my bladder release such a small amount like a faucet dripping . Sitting on the toilet for 10 to 20 minutes is too much. So, 2 monthshas gone by and I’m still having trouble . Calling the Dr’s and they see me and say , Oh, It’s ok . U still need to heal . They cather me and make me cry cause
    Dr forces the cather inside me . She said the surgery is not the problem . WTH???? I can’t even be intimate with my husband. Within all this time I’ve experienced severe tramatizing pain. My left kidney is killing meand my wholer lower back all the way around my left side . pelvic, vagania, inner thigh to my knees. I can’t hardly get out the bed in the mornings, sit for very long. I;m in so much pain. So, I go back to the Dr office 3 weeks ago and my other GYN told me he thinks the sling could be to tight amd possible growed into my uretha. Considering how he couldn’t get the cather in me . He suggest me have the sling clipped or maybe taken out . So he referrred me to a Urologist and they couldn’t see me cause my insurance run out . Therefore, NO DOCTOR WOULD SEE ME . HERE I AM IN NEED OF HELP AND THEY CLOSE ME OUT . Can anyone please help me find a way to get to a doctor and get this mesh out before it does more internal damage ????? Please ???????
    It is worse than having a baby naturally. Scary huh????? It’s been nearly 9 months since my surgery .

    Reply
  6. Robin Robbins

    Dear Virginia, Your letter reminds me of the first I wrote on this site a little over a yr ago. I am the lady who had a mesh/sling for about 12yrs! I went through TERRIBLE treatment s and heard words similar to what you are saying. I know Linda probably forwarded you my original email and my last on my progress after getting the mesh/mesh MONSTER out of me last Oct. along with the growths etc. that had invaded nerves and left tiny pieces of mesh that will ALWAYS be in me and always caused infections. But I too am the one who got an Interstem put in me almost a month ago that has CHANGED my life of being able to do NOTHING! Plus helped the never ending pain I had 12yrs.

    BUT YOU HAVE FOUND REAL HOPE MUCH SOONER! PLEASE listen to Linda’s advice to the T! You are younger than what I was when my normal life ended -SO SAD! YES childbirth pain was the ONLY way to describe mine also. It started just sitting but later got to the point of reclining, laying down etc! THEN unfortunately go to the point the SLING monster invaded my leg nerves the last 6 months and I could HARDLY walk with a CANE!

    BUT you have a VERY REAL chance of having LESS permanent damage since your sling was put in less than a yr ago and you are younger. PLEASE look at my first letter and my last. PLEASE PUT YOURSELF PRIORITY ONE!

    http://teapapers.com/bladdersling/2012/09/twelve-years-of-mesh-hell-now-a-light-of-power/

    and the last http://teapapers.com/bladdersling/2013/07/living-with-the-interstim-implant/

    Plus there are MANY, MANY other inspiring stories that are TRUE on here and others WORSE than mine. MEANWHILE PLEASE try what helped me,.
    Try to urinate in a tub of warm water. That might sound dumb but there were times I HAD to do it. It relaxed my muscles enough I started urinating and being slowly able to urinate more naturally. Then naturally I would stand up and shower off while draining the tub. My experience with self cathing which I have had to do is I ALWAYS felt I still had to go and the Doctor later found out I was NEVER able to completely empty my bladder.

    Plus the more I self cathed the harder it was to start again the other way. But I know for some it is a Necessity of LIFE. ALSO PLEASE TRY GETTING IN A WARM SWIMMING POOL AT LEAST WAIST DOWN!. FOR THOSE 12YRS IT WAS THE ONLY TIME I HAD NO PAIN! I later learned I had Pudendal Neuralgia caused by the sling strangling my pudendial nerve and was told that the water made it so there was NO Pressure on that nerve. TO get an hr or so of NO PAIN was ENORMOUS relief to me in the summer where I live!.

    In the winter my husband drove me to a pool but the rides over there and back about undid any pain relief. Although they did help me build up my muscles etc. and get some strength back. PLUS lose weight. A big way I lost 100 pounds was swimming or just moving around in the pool each day starting with 15-30 minutes and going up to an hr a day. I read that swimming or just moving around in the water continually burns up more calories than ANY other exercise other than Cross Country Skiing.!!! Sounded good to me especially since I did not hurt while in it! I SWEAR the first summer I did it I lost 35 pounds from mainly just doing that! I continued to walk back then when I could to keep it off and the next summer I was eating better etc. and swam again in the old in ground pool at the house we bought I am extremely lucky to have.

    I lost another 35 pounds! Then the 3rd summer I lost 30 pounds by trying harder to eat better through the yr and again SWIMMING or moving around in the pool. THE FIRST time I got in a pool in the shape I was in like you and my pain STOPPED I was amazed! Sitting in a tub DID not do it or showers!
    I would make plans in that pool! BIG plans that as soon as I got out I was quickly reminded why I couldn’t do them. BUT to be pain free an hr or more was SOMETHING else and still is the ONLY way I am 100% pain free. IF you do not have a pool get one of those blow up ones that is at least 3 1/2 feet to 4 feet tall! THAT is what I would do I SWEAR if I did not have the one already built here MANY yrs ago! Then I could take it down in the winter and not have to worry about winter maintenance. I gained about 25 of it back this last yr particularly when I could not walk. BUT I am glad to say I am swimming again and have lost about 7 pounds of it! 5 pounds on our last trip!

    IF you are able to go to a public pool they will give discounts if your Dr. says you need it and are not high in price anyway, ours you just paid by the month or by each trip! You could quit anytime! Of course ask the people who have been there a while when the best time to come is. Usually around the middle of the day for us when school was in. If school was out a day I went I soon learned to CALL first and find out!

    Talk to others Linda tells you to to get other stories that show you real hope and recovery by what Linda suggests. Believe me I talked to a couple plus Linda before selling MANY things and my husband and I working HARD for ANY way to get me to the BEST DR. there is in my opinion and Linda’s! He is older but outdoes many 1/4 his age! But I am still aware I was extremely lucky to have been able to use him while GOD is working through him on this earth! He is training others but not nearly enough although he works a schedule many young people could not!

    TOO many other Dr.s like ones I have seen in my home state still look at me and think WHAT? or just deny all together as it sounds like it could be with you! They say it could not have to do with ANYTHING they did or MESH! I had to pay for a 2nd opinion etc! But like I said after I talked to Linda and two others I KNEW I had to do ANYTHING to get to this man and real hope. HE then told me the first time I saw him YOU HAVE BEEN THROUGH TOO MUCH, TOO MANY YRS, FOR NO REASON, AT TOO YOUNG AN AGE. I WILL HELP YOU! THE MESH AND ALL MUST COME OUT AS HE TOLD ME ALL THE REAL DANGERS THEY DO! YOU WILL NEVER BE 100% BUT I CAN AND WILL HELP YOU I PROMISE AND HE GAVE ME A HUG!

    Tears flowed out from 12yrs of hell. Finally someone understood what I had thought was wrong DAY ONE! I was NOT crazy (at least when it came to that! Ha!) GOOD luck Virginia, you ARE at the right place I promise! There is REAL HOPE! Please follow Linda and whoever she sends your way and do JUST what she says. It will be well worth it no matter what the journey involves. Take it from someone who has been there and still IS but in a BETTER place now FINALLY! GOD BLESS and PRAYERS! RR

    Reply
  7. anonymous

    Hello. I am so sorry for all you’ve been through. I will be going to Dr. Raz soon for mesh removal. There are things I need to ask him and information I need before I go but my calls aren’t being returned. Is there a good way to reach him or his staff via email? If you could email your response instead of posting it I’d appreciate it.

    Reply
    1. lavalinda

      Yes, do it via email. I will send you a note.

      Reply

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