Mesh & My Wellness Plan

I have no clue if anyone will read this blog or if it will be helpful in any way, but as I wind down to my own mesh removal surgery, I am trying to do all I can to help other women like me.  What you get out of it is up to you.

When I first began writing this blog two years ago I was at my wits end, the same as many of you.  I didn’t lose my insurance because I never had any to begin with.  I paid cash for a surgery that was supposed to be simple.  A rectocele repair.  Then the cough and sneezing bit came up and I was told that that too was an easy fix at the same time.  My problems began immediately after my surgery.  They intensified over the next few months and by that time I was out of money.  So once I began researching and found no answers that could help me, I began a blog.

I was not a blog writer.  I have been a writer all of my life and it has calmed me on days when I wanted to scream.  My normal writing was private, such as the years I spent dealing with my husband’s long illness through the agony of dementia.  It was different than this journey because it was not me, but it affected me immensely because it was my partner for life.  My husband whom I loved dearly, a brilliant man left me in incremental stages, until his death in 2004.  We had been married for thirty-four years

This time I started out writing to what I thought at that time was a blog going out into ‘thin air’.   I never believed anyone would ever read it, but I hoped if they did they would answer the questions that I longed to know.  What happened instead was women contacted me mostly via email to tell me they were either suffering in a way similar to me, or they had many other symptoms of illness that they never had before mesh was put into their bodies.  So I researched more and listened to the wonderful women who contacted me and told me about their good results by a doctor far away at UCLA.  Far away to me was not only how far I am from California, but how far away my eligibility was to receive Medicare which was when I turned sixty-five this past June.  By that time I had listened enough and decided I had to go out there to UCLA.  I will always be grateful to these wonderful women who helped steer me in the right direction.

While I waited to receive Medicare, I somehow had to stay as well as possible.  So with my daughter’s help and research I had a plan of supplements that may help me.  I have been working on this plan ever since and I believe without this plan I would be far worse off than I am.  Understand that none of this will help you with your pain and symptoms of mesh complications.  However, it may help you with the fight against the immune disorders that seem to be very common in women with these complications.

As I always state.  I am not a medical professional nor have any medical experience.  I am simply a woman who was on a mission to stay well enough so that when the time came to get the help I needed, I would not be debilitated by doing nothing.  For me, it was worth a try.  You must always make up your own mind and do whatever you think is right for you.  You should also read up everything about whatever plan you have to check for any interactions with any prescription drugs you take.

Last week I had a series of tests that Dr. Raz ordered by my own health care professional.  It was to let them know if I had any problems that could be dangerous for me during the mesh removal surgery.  I was worried.  Although I had been tested before and was always in good health, I had stayed still far too long and have gained twenty pounds.  I was not thin before, but I was very active working on my house, up and down ladders all day.  I was in reasonable shape for someone my age and I felt happy with who I am.  I did not expect to become disabled from bladder sling surgery, but I am.  Now all I can do is hope this surgery will allow me some freedom once again, so that I can lose the extra weight and be healthier.  Believe me, it bothers me to be so overweight.

Only time will tell because removal surgery is not a fast thing to recover from.  I have to allow myself some time and then move Oh, so slowly.  No rush to set myself back again, so I will be patient and try the ‘old baby’ steps plan.  So now if you are interested in how I made it through this long two and a half years in good health other than mesh complications, the following links will give you information to make your own choices.  I wish you well on your journey to a better life.  You should note.  I refuse to live my life on painkillers that could leave me addicted or with other side affects.  Everyone knows if they can live with their pain or not.  This is not a condemnation of such drugs if your pain has got so bad you cannot live a normal life without them.

Marshmallow and probiotics.  I have already written about taking these two on this blog.  You will find links there to read up on both.  http://meshangels.com/2012/07/mesh-internal-clostridium-infection

Chelated Magnesium.  Many women have problems with constipation due to taking prescription drugs.  Some of those women who do could be helped by this.  As we age we are lax in many natural things that we should have in our bodies.  This is one of them.   http://www.chelatedmagnesium.net

Borage Oil.  You can read the benefits of this oil and decide if it is something you want to try.  http://www.ehow.com/about_5049659_benefits-borage-oil.html

AlphaSorb-C  I do not know if this is the reason but I have been taking this for four years and have not had a cold ever since.  http://sportsnutritioninsider.insidefitnessmag.com/3007/alphasorb-c

Flaxseed capsules.  I did take this at one time but Borage oil has so many benefits, I stopped and only take that oil these days.  http://www.webmd.com/diet/features/benefits-of-flaxseed

Vitamin D-3  My outside days have been so limited for all this time with little sunshine which is our normal way to get this vitamin, so I make sure I take this every day.  http://voices.yahoo.com/vitamin-d3-benefits-side-effects-recommended-daily-4006971.html

Taking B-12.  Because my immune system was drained, I had two yearly bouts of shingles.  No shots for me, so I began taking this.  Personally I think that if you are open to it, you will be given a shot or a drug for anything.  Perhaps it is because people want instant ‘fix me’ reactions.  For me it is all about finding a better way to good health.  I don’t mind the research nor the ‘waiting to see’ time it takes. I do not know if this, or a combination with other supplements has changed my B.P but I was amazed at a reading of 118/70 when I went to the doctor last week.  I was under a lot of stress because this was a new doctor and I was concerned over his reaction to my mesh complications, but my reading was still great. So was the doctor by the way.  You should be aware that you may have ‘white coat syndrome’ and that will elevate your B.P when you go to the doctor.  I do have this because of all the disbelief I have received over my mesh complications and rare drug reactions, so therefore I stress out before I see any doctor.   I have not had a BP reading that low since all this happened so I am very happy because I had a rare reaction to a B.P medication in 2008 and drugs for that are out for me.  No one believed me here in this country, so I flew back to England and was listened to.  You can read about B-12 and decide for yourself.  http://www.everydayhealth.com/health-questions/vitamin-b12/does-taking-vitamin-b12-lower-blood-pressure

Taking benfotiamine.  For me I decided to take this because I knew from the start that mesh was interfering with the nerve in my right leg, I was hoping I would help myself against permanent damage.  You must make all your own choices for your own symptoms.  http://www.mwt.net/~drbrewer/benfotiamine.htm

N.A.D.H.  Please understand that I personally do NOT take this product because I had never had problems with energy levels  However some women have, so I wrote this blog.  http://meshangels.com/2012/09/mesh-fibromyalgia-low-energy

You have to weigh everything when making any changes like this.  If you are lucky enough to have a doctor who understand that prescription drugs are not always the answer, and who will help you understand the best way to handle your time while waiting for mesh removal then that is wonderful  If you are on prescription drugs please double check everything for interactions.  Also the most important thing to keep in mind, everything in moderation.  Ten will not be better, if something says, one a day.  You could hurt your health very much if you do not do things right.

I truly wish you wellness and a better future.  Linda

P.S.  You should also know that I do not drink, smoke and only allow myself one cup of coffee (I do love a good cup of coffee) when my bladder issues are not bad.  Otherwise I drink hot green tea and water.  I am not perfect, but I do what I can to stop my condition from worsening.

13 Comments

  1. donna harris

    I am desperately trying to find a doctor to remove my mesh been to 3 doctors each saying its not the mesh each saying go to another doctor , I cant afford anymore doctor copays or percentage on test . I hurt daily take aleve advil cant take prescription medication because I have to work Im single no other pay checks coming in . Its depressed me Ive gained 20 lbs I struggle everyday just to make it . I think I keep a bladder infection . Where do I go from here Help I need help .

    Reply
    1. lavalinda

      I am so sorry you are suffering but I know of nowhere else that you will truly get answers and the help that you need except UCLA. Please ask you church, family, friends or co-workers to give a luncheon to help you raise the expense money. Many women have done this and that is how they go out there. You can pay it forward when someone else needs the help. You will not get any help at all unless you ask for it. Ignore ‘it is not the mesh’ and get the help you need. All the women here plus thousands more are tired of listening to this statement and are moving past it by getting the real help. Tell yourself it IS THE MESH and stop going from doctor to doctor for the one thing you want to hear and the waste of your precious resource. Money! Believe in yourself.

      Reply
      1. Helenk

        I had tests performed 3 times since surgery and battery of test never showed the problems, they performed the same exact tests. After finding Linda blog, and discovery that Dr. Raz use different diagnostic tests not offered here, I was glad to see him. I had seen a second doctor for opinion, it didn’t make since to continuous repeating same test and medical problems not being resolved. I called all organizations that I could find here in the city, still no assistance. I had scheduled an appointment in another county, but I canceled, decided to see Dr. Raz.

        Reply
  2. dc

    Donna,
    You are so NOT alone. Many women, like me, can relate to what you posted. Every day, I don’t know how much longer I can take the pain. Unfortunately, there’s not a lot of help out there from doctors. So many seem to be in the dark on mesh complications. That is why so many of us make our way to Dr. Raz in California. Where are you from? I’m in upstate NY, and I’m going to Dr. Raz for mesh removal because I can hardly walk now, but my surgery date isn’t until January. Still, I’m thankful to have some light to try to find at the end of this tunnel. Hang in there. I know it’s not easy and all so overwhelming. Try to keep researching and learning so you can make informed decisions.
    Deb.

    Reply
    1. mmm

      Hoping to hear how your surgery went. I go in April for a consultation with Dr. Raz. So many questions about your entire experience. Hope you are recovering and it went as you had hoped. I had the Monarc implanted in 2005. Please share when you are up to it. Take care.

      Reply
  3. Teresa Jones

    I found you and your blog today. We are out here reading all about you. I hope you feel better. You have changed my spirit and given me hope. T.

    Reply
  4. lavalinda

    mmm, I will be out there in April as well for the fascia sling. I did tell Deb some people are asking about her surgery. She is okay, just cannot sit at the computer right now.

    Reply
  5. gina zahn

    i had sling surgery for uterus prolapse in 2007. Marlex mesh was used. Constant bladder infections. Appendix removed a year later. Rectal area came through the vaginal wall. Nobody mentioned the mesh being the problem. I want to find a Dr. in the Cleveland Ohio area that can locate and remove this nasty stuff. All of it.
    Took me 1 1/2 to get my records from Cleveland Clinic.

    Reply
    1. lavalinda

      There are doctors and there are doctors. It you want to get help then go to UCLA.

      Reply
  6. Amy

    Hello! I am reading your blog and would love your email address. I had prolapse surgery in September and have been in horrible pain ever since. One of the five slings was removed after the first surgery, and that didn’t help. I have been to many doctors, and I have Pudendal neuralgia, S1 nerve damage and perineal neuropathy. I went to the Mayo clinic and they are recommending removing the remainder of the five slings. He thinks that’s my best chance for recovery. My PN specialist says I shouldn’t have it removed, but have nerve decompression instead. I’m torn, and would love to connect with you.

    Reply
    1. lavalinda

      Amy I am going to send you a note

      Reply
  7. beth

    linda,
    are you still doing this wellness plan?
    I am trying to make a list of vitamins that i think would help me. its hard, i read about them, and think, i need this, this and this…
    I hate mesh. 🙁

    Reply
    1. lavalinda

      Beth I do and will be doing it the rest of my life. But I know from other women that those who take this route will need less or no pain meds, but it is an on-going process to keep your health. You are on the right track.

      Reply

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