Mesh Removal Aftercare

As more and more women go out to the UCLA urologists and have complete mesh removal, I realize that many do not have the tools they need to understand how to handle their health and spirit after they are home again.  So I decided to write about it because I too have struggled through this, although I knew the ups and downs after surgery would happen and a slow recovery was inevitable.

We do not take this journey alone.  Someone or several of our close relatives, whether it be a partner or children will be taking it with us and they too are stressed from years of our pain.  Even the MOST understanding are worn thin by the time the mesh is removed from our bodies and they are probably hopeful that you will at last be the person they knew before mesh was implanted in you.  They cling to the day when it will be gone just like you do.  To give you an idea of how this is, One woman told me over the phone that her husband said “I am just looking forward to getting my girl back”.  How great that sounds.  However, the journey to recovery will only just begin after it is removed and only time will tell how complete and well we will be as the journey progresses.

There are things you can do to ease this journey for your loved ones.  First remember that they too have been in mental pain for a long time.  They have watched you go down hill.  You struggle to work or can no longer work and you family income has dwindled.  They have had to take over many household chores and everything around you is not the spick and span home you always kept.  Plus you have not been the cheery, loving and wonderful mate or parent you have always been before the mesh issue.  So how do you address the fact that you will have a long slow journey back?

A lovely young woman mentioned to me that is had been two weeks since removal and her loving, caring husband was wondering why she just hadn’t bounced back from this surgery.  I don’t think anyone will actually say this to you, but they are probably thinking “What’s wrong with you?”  “Why aren’t you up and running?”  “We are just about broke, so you need to get a job again”.  The truth is if someone is spitting these words at you, then they really do not love you and once you are well, you are better off without them.  However, any human being has a right to feel this way after years of watching you go through this and they carry more of your lives on their own plate.  So you can do something simple before you have mesh removal surgery.

I told this young woman that because I understood the slow recovery and often not the full recovery everyone wants, especially with nerve damage, I made my care person, who is also my daughter, a special card and wrote her a letter.  I took photos of our so far, life journey together and made a book journey card with six of them.  First me holding her as a small child and then the journey progressed to us as adults.  I design cards and I am a poet, so I wrote poetry about our journey to go with each photo.  Now you are probably reading this and thinking “That sounds like a lot of work and I have no idea where to begin”.  You are right.  I am not telling you to do this of course.  I am simply stating how I handle things in my own life.  But you can buy a card with lovely words and then sit down and write a letter.  You need to explain how much them taking the journey with you so far has made a difference in your life.  You also need to give them the love and credit they deserve for doing this.  Believe me they need it.  You also need to explain that other women are taking the journey after removal and have told you that it is a slow come back and there are no guarantees of complete recovery.  Ask them to remain steadfast with you on this journey and understand that you want to come back and be normal again.  You need the hope that things will improve for you, but it will be a slow process. 

I gave my daughter this card and letter the day before we flew out to UCLA.  Now I am almost five weeks past my removal surgery and she knows that my frustrations at a very slow recovery are exactly like hers.  I hate that I just haven’t returned to the former me and this is such a long and difficult journey.  I knew I wasn’t going to just like that, but I WANT to be normal again because I am sick of being sick!  However, my body is working at a far slower pace than my brain.  AND there is nothing I can do about it, but take it just as slowly.

I say nothing I can do about it, but that is not quite true.  Since day one of my mesh implant I had complications and I began trying to combat them as best as possible with my own supplement wellness plan.  I am diligent in this.  I knew I had to continue this journey after mesh removal because the surgery is a huge assault on our bodies.  So I made sure I was stocked up on what I needed and I took them with me to the UCLA hotel.  The morning I got back to the hotel after removal the day before, I asked my daughter for a drink and something simple to eat and I began taking them again.  Plus I added a stool softener and my chelated magnesium to make sure I had an easy bowel movement that day.  I did.  I was so uneducated when the sling was put in my and the surgeon never warned me that it may be difficult for me to ‘go’ without doing something to ease it.  So three days later I was on the phone and then she told me to get a stool softener.  It was my journey trying to stay well for two more years without health coverage and continuing complications that made me come up with my own wellness plan, that I stuck to diligently.

Remember.  Removal surgery is HUGE.  If you realize that pulling adhered mesh from your tissues and organs has left you damaged inside, then you must understand it will take you some time to heal.  And you must help yourself as much as possible.  I was given one week of antibiotics that I was not allergic to and I knew I had to keep taking marshmallow root to stop any infection as my body healed and adjust to a new situation.  I am still doing this and will continue because my urethra was damaged and although it has been repaired during the surgery, I am very incontinent.  So I need to make sure I am doing all I can to stay well.  The likelihood of going back to UCLA in a few months for Dr. Raz to make a sling using my own tissues, is a strong likelihood.  I must continue to make sure I am as healthy as I can be, other than what I am still experiencing with mesh complications.

I am badly still damaged from mesh.  I cannot walk without pain and I cannot raise my leg to put my panties on, let alone think of shoes again.  It makes me very sad and angry that this product could leave me with this many issues even after it is gone.  I try hard not to take it out on my daughter because I know she is just as sad and angry.  So I beat it out on my keyboard or I go and make something to shift that anger from my mind.  You have to do the same.  They have stuck with us all this time and they deserve a break as much as we do.  Smile at them and show them that you are happy they are there for you.  They need your love as much as you need theirs.

This blog may help you with some supplements you can take to get back your health.  http://meshangels.com/2012/09/mesh-my-wellness-plan  The rest is up to you.  With love and support….

18 Comments

  1. Deb C

    Linda,
    Thanks for writing this, and expressing it so nicely. I am fortunate to have my husband and my boys, who love me very much. They have all had to watch me go through this, and start doing more around the house and for each other because of the limitations I now have. This has been hard on them, as well as for myself for sure. Everything in our lives has been effected by this. Everything. They are looking forward to my mesh removal surgery as much as I am. I do need to remind them how much I love them, and how thankful I am to have them… I also need to remind them, and myself, that my healing will not be an instantaneous event…. and, there are no guarantees even… I don’t like talking like that, because I want to think positive.. and hope for the best, but I need to realize even “the best” will take some time.

    I like to write too… and this is a poem I wrote recently… when I was thinking about “what if’s” one day…. I thought I’d share:

    What If
    ======
    What if Reality
    doesn

    Reply
    1. lavalinda

      Lovely Deb. All we have is hope and faith that in time we will be back to normal……..or a new normal. One that allows us to live again.

      Reply
  2. Carmel Berry

    I am 12 days out from mesh removal. THANK YOU so much for sharing your journey and for the timely reminder to tell my dear family how much I love them and the support they have given me so far. I know it will be one day at a time, and that recovery takes ages (I remember all too well after had a partial removal 6 years ago), but I have hope and a belief that when we celebrate Christmas in a few weeks, I will be on the way to recovery. A few months ago I didn’t even know that I had mesh still in me – I had no hope at all.

    Reply
    1. lavalinda

      And now you have so much hope for a future. I will be thinking about you all day when you have surgery. With love and support.

      Reply
  3. RW

    My wife is scheduled to have removal surgery soon. After reading this article and subsequent posts, I am really ambivalent about her choices. I do not trust Doctors anymore. I used to. Now I question everything. I don’t mean to sound negative, but it doesn’t sound like having the surgery resolved anything and may have caused more complications. Linda, you say you are incontinent, were you incontinent before the removal surgery? My wife has had partial removal and She came out of that surgery in worst shape, not better. She lost the ability to urinate on her own. She has to self-cath now. I don’t want her to wake up after this surgery incontinent or worse with an ostomy bag. I would feel better if there were more first-hand accounts of successful removal surgeries. I know some people say that just having the mesh removed is worth it. Is it really? My wife has learned to live with pain, it is a constant companion. Decreasing her quality of life is not the direction she wants to go. I know this Dr is a specialist and a lot of people say he is a saint (i am not saying he is not), but he is still a Dr making a lot of money from other’s suffering. The cost of this surgery will put my family in more financial distress and I wonder why? I don’t understand why it has to be so expensive. The Dr fees are huge. I understand we are paying for a specialist but this man is performing a lot of surgeries and so far I haven’t read any real compelling stories of success. The saying “You get what you pay for” doesn’t seem to be the case here. What did you get? Does anyone feel that it was truly worth it? It is really hard for me to trust anyone motivated by money and profits when caring for the health of individuals. Dr’s willing to set aside ethical mandates so they can reap financial benefits is a reality we should all find repulsive. What ever happened to “do no harm”? Why aren’t the Dr’s who put the mesh in having to take responsibility? Doctor’s are not being reprimanded for their culpability in this horrible fiasco. Doctor’s profit on both sides of this equation. They get paid to put the mesh in and they get paid to take the mesh out. It is a perfect scam. Has anyone heard of a single Dr having to take responsibility for the pain and suffering they have knowingly inflicted on us? The mfg’s created this defective product and then used the greed of our healthcare workers to promulgate this castration of women. Because that is what is happening, in essence. Woman are being castrated. I hope and pray my wife’s surgery is the cure she needs and maybe the next time I post it will be a communication filled with positive reflections and not recriminations.

    Reply
    1. lavalinda

      RR. You do raise valid points and I applaud you for you thinking through all this. First let me answer the most important of your questions, was it worth it to have it removed? YES! Why? because I was going downhill quickly while the mesh was in me. I would have wound up in either a wheelchair or bedridden or both had it remained in for a few more years. I know this from the countless women who have had it in 8 to 12 years. Second. Would I love to plaster my blog with successful mesh removals? Of course I would. BUT, the powers that be are telling women NOT to speak out. Therefore they fear if they do they will not have any compensation and they will be told be told there was nothing wrong with them after all. Sad I know but that is the way this works.
      Now, my own issues. Before the implant was placed in me I was asked if when I coughed or sneezed, was I incontinent. I replied at times yes, when I had a cold but it wasn’t much. I was told there was a way to take care of that to avoid it getting worse in the future. So I agreed to this magic. Now, I too was like your wife. For 9 weeks I could not urinate and suffered with non stop infections that various antibiotics could not touch. Infections are an extreme danger, believe it or not. When my at last my surgeon admitted there was a problem, she said she was taking me back into surgery. What I never understood was that it was a partial removal until the day of my surgery when Dr. Raz explained she had removed a small piece from the center. He removed the rest including the arms that held it in place. After that surgery I had to self cath for weeks until I could do enough on my own. However, I always felt that my bladder never emptied completely any more. That was true and was confirmed the day of my tests before surgery. So I truly get where you are coming from about not trusting anyone again. What was worse for me was that over time I really became incontinent over the last two years. I had not experienced it before the implant.
      I resolved this issue of who to go to and who to trust by listening to hundreds of women telling me their partial mesh removal stories, by countless doctors across the country. I can assure you it was awful and it scared the hell out of me to think of having any surgery to remove it. I had finally reached a point in my life when Medicare kicked in June 1st this year, that things were getting much worse for worse for me. It happens slowly but surely over months and years. Then I had to make a decision. There are not any doctors in Texas who could remove the remaining mesh INCLUDING the arms in one surgery.
      I had to make a difficult choice and your wife does now. Either we never trust a doctor again and we keep going downhill until kidney desease or other serious illnesses take over, let alone the migration of ‘cut’ mesh left to move around and cause further complications, or we look at all the options. Believe me other than UCLA right now I do not know of a good alternative. I was NOT ready to die a slow death from mesh complications.
      I knew the risk of incontinence was great but I will go back to have a sling made using my own tissues IF it does not improve. I am 5 1/2 weeks post op and it has not so far. You should also does not happen to most women, but if her urethra is damaged and it has to be repaired, there is more of a chance of incontinence. Dr. Raz had to repair mine due to the mesh cutting through the urethra. I was lucky that it had not gone all the way through and had eroded because it is highly painful. I did know that over the past three months before it was removed I had a constant burning in my vagina so it must have been close. There could still be healing and it will slow down or stop as it has for other women over several week to three months after removal. I am hopeful. If not Dr. Raz has the experience to fix it without the use of more mesh.
      Now as to profit from putting mesh in and taking it out and Dr. Raz being a Saint. No he is not. I do not idolize any doctor and hate going to doctors or hospitals. BUT, if the choice was to sell my car which I could not longer drive due to nerve damage in my right leg and TRY to improve my life instead of laying in bed wishing I had taken a chance, I would do it all over again. No this is not a perfect world and where mesh is concerned it is a really dirty business. I am however grateful one doctor at least has the skills needed to try to improve my future. It was looking very bleak without it.
      If you want a guarantee for your wife, I nor anyone else can give it to you. Her injuries may be relieved, placed on hold from further deterioration or if she has nerve damage as I do, it may never improve. This is tough I know, but I wanted to live a better life and I took that chance. I had instant relief from a nerve issue in my thigh. However, damage done over a long time may or may not improve with time. That I can assure you is not Dr. Raz’s fault. I blame the manufacturer.
      I can tell you this much. I would do it all over again and do not regret my decision to spend money and go out to UCLA. I know the alternative. Years of surgery after surgery of partial mesh removals and the chance of more damage. Did you know women have had eight to twenty of these surgeries. One woman reported on one of my blogs recently in a comment that she had had forty-three surgeries. So I can only ask you this. How much is your wife’s chance at a better future, worth to you.
      You see you would not ask these questions had this surgery been for a life and death decision. What you may not know is that without removal, it just may be. You should also know that so many women have confided in me that they would have killed themselves had the pain not been relieved by removing the mesh.
      I do not blame you for your anger. However, you should shift it to the mesh manufacturers who tell doctors every day it is safe and we must all be lying. Do what I do. Take that anger and switch it to helping your wife and other women. Thank you for leaving this comment. I do appreciate where you are at. You are sad, angry and sick of being broke. I do get it.
      I just wrote a blog yesterday titled Mesh Removal & No Money, with ways you can try to raise funds or reduce costs of tavel, hotel, flight and fund raising. You may want to read it. Please be upbeat for your wife. I know the pain of this but unless it is in your body, you cannot imagine how bad it is.

      Reply
    2. RR

      Dear RW PLEASE read my 12 years of MESH HELL now a Beacon of Hope and/or my story below.

      I had a mesh put into me when I was a full time school teacher with almost 20 yrs in my career. IN one day my ENTIRE life changed, I had had MAJOR surgeries before, neck fusion, hysterectomy, carpal tunnel on both hands etc. SO I KNEW you were not Supposed to feel so MUCH worse after a Major surgery like I IMMEDIATELY did as soon as I woke up in the hospital room. Forgive me any others for rehashing some of my history you may have heard to this man in case he doesn’t want to dig for my stories in the blog. I too have been blessed with a husband that has stuck with me all these years through all this! IT very much has affected our relationship and we and the LORD and counselors are working at rebuilding it!

      I immediately took a 1yr leave of absence from teaching hoping SOMEHOW I would find an answer. We had an HMO at the time who would send me to ANYONE except the original surgeon’s partner in the same office! NOT! So one year later after many torturous-stupid treatments from HELL, an operation looking for scarring from my hysterectomy 5yrs before that he said COULD be causing the pain!?!?!
      THIS DR.?!?! even had the gall to have asked my husband before going into that surgery if I WANTED to get well!?? My husband very much wanted to slug him! WHAT kind of person would have gone through what I had about that PART of your body to MAKE something up! EVEN my husband said later I would have made up SOME different part of my body if THAT is what I wanted-Just attention!!!! HE told the DR.?!? “You can go right down the Hall in this clinic and talk to the Neck surgeon who she has NO problems recovering from that major surgery that required fixing two ruptured discs with bone grafted from her hip and putting a steel plate over them! OR ask the Dr. who did BOTH carpal tunnel surgeries, one after the neck surgery that was found to be needed to HELP the healing of the neck!(Kind of like a hose kinked all on that same side of my body.!) She recovered FINE from both of those! I had the surgery and torture treatments for a yr.

      Finally we saved enough to pay out of pocket for a 2nd opinion from a DIFFERENT GYN-URO that was recommended to me by a GREAT woman physical therapist who specializes in PELVIC problems and Health for women-one of the few in the Country-if I had found her I KNOW I never would have GOT MESH! She gave me the new Dr.s name she heard of I had an appointment and he IMMEDIATELY knew the SLING was put in TOO TIGHT! HE TRIED to loosen it it almost one day to the date one yr after the first surgery. HE DID help my bowels start working correctly again thank God!, I did not have to go home with a catheter for WEEKS but the CHRONIC PAIN AND CONSTANT LEAKING continued. He then tried an INTERSTEM unit on my back hooked up to bladder muscles that were supposed to turn OFF those nerve signals, he left the unit on the outside during a 2week trial. Unfortunately he did not get it hooked to either side (or perhaps fortunately now looking back) and removed it never putting it under my skin. Kind of like a pacemaker. He wanted me to have it tried again! He even tried TRIGGER point shots that I tell people were shots on the end of a yardstick long! stick to points in my vagina way up inside! TALK ABOUT JUMPING OFF THE TABLE! I HAD to be in pain to have had THOSE DONE! ANYWAY I SAID NO! NO more operations! NOW! EVEN though I explained WHY-He wrote me a letter a short time later saying I was NO LONGER his patient as he only wanted to try surgery again and would NOT prescribe me pain meds! I never got a letter such as that in my ENTIRE LIFE!

      ONE REASON WHY WAS THAT I was getting guardianship of my elderly Mother and Father, my Dad lived the last 6 yrs with us and had Alzheimer’s but we grew close and I found the Dad I never saw growing up. SO for 5 and 6 years before my parents passed My husband and I were BUSY. I still had pain etc. somehow God got me through each day with my husband too who became qualified for SS disability after having one after another bad physical condition happen to him. I qualified for my Teachers Pension immediately and got SS after a 2yr battle after being denied probably because I was in my EARLY 40’s. BUT after getting an attorney who was a woman with a NURSING background I did get it 2yrs later when appealing before a judge and showing MANY ailments I had though NO official ONE diagnosis got it!. MY file was so thick and the nature of my problems SO personal the guy from Voc Rehab from the capital of our state was asked. “DO YOU HAVE ANY Questions?” I had thoughts of being told I could telemarket off the toilet! BUT this man not WANTING TO ASK ANYTHING about MY problem just shook his head NO and did not LOOK at those files OR ME! So I was approved. PTL!

      After my parents Passed I thought again I need to look into this what I have put on the back burner too long. I again asked my PT if a Dr. she knew would know any advances and I had looked up Pudendal Neuralgia the first medical problem that had ALL my symptoms! I am sure it WAS a problem I had or still do and was caused by the sling being wrapped around those nerves! SO I went to this Dr. in 2010 after my Mom passed in 2008 and my Dad 2009. He did tests on my Pudendial Nerves in the hospital with Shots into them! I almost jumped off the table the first time they hurt SO BAD! They did numb the nerves about 1hr each time but it came back.He told me that PROVED I had Pudendal Neuralgia! He then suggested my ONLY choice was to go to a DR. he had interned with who would do a BACK operation that would severe.,cut or loosen those nerves! EVERYTHING in me said NO, 60% chance of working, 2 yrs or more to find OUT! NOT!

      THEN THE FDA warning that came out in July 2011 had my sling listed that was put in me one yr before it was EVEN approved by FDA!,. MY PT did not even recommend I have that operation and I did some therapy with her but her help was limited since I still had the stupid sling. So after the FDA warning I went back to him and asked if that DR. he recommended could LOOK at the mesh and told him about the FDA warning etc. HE got ANGRY and said the mesh/sling warnings were all made up by attorneys to SCARE people and there was NO SUCH thing, mine had been completely absorbed! (His intern had “felt something” and told of his knowledge of mesh slings causing damage”) but as soon as the DR. came in he took him aside and HUSHED him up! HE SAID AGAIN MY ONLY chance was to go to “HIS Doctor” this time I followed my GUT instinct and thanked him for his diagnosis and treatments and LEFT
      I thanked him for his services and left never going back.

      Then my husband and I started looking and THANK GOD I FOUND Linda and this blog.Linda was kind enough to contact me and tell me I HAD to go see DR.Raz my case was so long and complicated. WHEN I went to the PRE op after checking with other patients who ALL had GOOD stories to say about Dr. R before I had my husband drive me across half the country to see him. I knew from the beginning when I saw him and heard him while he was in the Hall looking at my LONG history asking the other Dr. THEY DID THIS AND THIS AND THIS? WHY!????? As soon as he came in he examined me and put his arm on mine and looked me straight in the eyes and said “YOU HAVE BEEN THROUGH TOO MUCH, TOO YOUNG, FOR TOO LONG A TIME! I MUST REMOVE THE ENTIRE SLING HARDWARE AND ALL AND WILL KNOW MORE AFTER THE SCANS WHEN YOU COME BACK FOR SURGERY IN 4 MONTHS! YOU ARE AN EXTREME CASE AND WILL NEVER BE 100% BUT I CAN PROMISE I WILL HELP AND YOUR LIFE WILL IMPROVE!” I cried and cried! I had never had a Dr. tell me the truth as it finally came out and hugged him and said he had made the most since of ANYONE in 12 yrs!. I thanked GOD to have found him. I rode all the way home, the next 4 months of waiting were HARD, my leg started getting WORSE damage to the point I could not walk without a cane for the first time in my LIFE!. MY Chronic PAIN and leaking got worse and worse, used to I could not sit, now I could not even lay down and the pain pills barely took off an edge of 20-30% AFTER the 3rd 4th one of the day all 4 hrs apart! So when I went back to him I was in WORSE shape, walked in with a cane, had fell many times before finally using it and even then! He took a scan that showed TWO BIG growths on both sides of my Urethra that had gotten into the muscles, nerves etc and embedded themselves in them and had taken on a life of their OWN, all growing into a MONSTER for 12 yrs. The One of the left was biggest and very hard to remove, the surgery took 2-3 times the time thought to take. I was to that point the patient who had the most years with a sling he had operated on. HE HAS said I was AN EXTREME case who would NEVER BE 100% but better! On the right there was a slightly smaller growth embedded into my muscles,nerves etc. that had started getting into my nerves on my right leg that had became affected so it would give out under me with no warning, hurt always and required me to use a came since I had seen him 4 months earlier! He removed it also-THEN there was the MESH itself wrapped around and around my Urethra with the mesh material in it like a snake as thick as his FINGER Dr. R. said YIPES! NO WONDER I COULD NEVER SIT! He removed all that plus the hardware except the two screws in my pelvic bones that had healed over. THE BIG dark areas my MRI showed here on each side I was afraid was BONE cancer or something from the hardware that IS possible, were the two BIG blobs of material from the mesh itself looking like TWO BIG holes on the MRI scan!

      As soon as I woke up from surgery I of course hurt, wore the catheter, it was taken out the next week and I could urinate. I had a continued fever for the first 3 weeks and still have stitches healing from all the cuts and sutures they had to make from ALL the material they removed. IT all came out BENIGN praise GOD!. I IMMEDIATELY COULD WALK the next week I saw him, he showed me off to several other Doctors saying she came in using a cane! I was amazed also but as I say my leg still throbs at night,spasms and hurt sbut when I get up and circulation starts I can walk again on my own two legs! NO cane! I FEEL as if we got there in the NICK of time to save the use of that LEG. The rest I am taking Day by Day slowly getting better but my body letting me know if I have done too much. I truly think because it WAS a long operation with much involved it will be a longer recovery. TO WALK AGAIN was worth the trip and the times I can sit WITH PAIN PILLS now that WOULD never work before are blessings. TO go out to eat with my HUSBAND in a restaurant is a blessing I have NOT had in a LONG TIME,simple things like that we take for granted. Things will come like that that are possible others will be left as reminders of what was in me so long. BUT PRAISE GOD IT IS OUT! and will NOT CAUSE any FURTHER damage.

      PLEASE TAKE IT FROM ME! IT WILL BE WORTH IT AND YOUR WIFE WILL BE IN THE BEST POSSIBLE HANDS AND YOUR FAITH LIKE MINE WILL BE RESTORED in knowing there are SOME Doctors out there that are HUMAN and ACT like it with Compassion and care for their patients. Hope my story rehash helped you or anyone else-to all others I apologize but love you all! RR

      YES, I am now using my initial too because of reasons I was told to, to someday hopefully bring attention to these manufacturers doctors etc. that this CANNOT be continued and NOTHING MATERIAL OR OTHERWISE will EVER PAY BACK FOR THOSE 12 yrs that were supposed to be some of my best! Just the last year I missed my One yr old granddaughter’s birthday and my son’s wedding-NOTHING can ever repay for those things BUT PERHAPS WILL help my future medical care if God decides it will happen and also will help others in the future.
      God BLESS! RR

      Reply
  4. Lisa Pashenee

    I have a success story, and I will shout it to the world! You can google my story:
    medical mesh desk lisa pashenee
    I had a tvt sling put in 2004. I had 4 bladder infections a year, but did not think it was abnormal. Since November 2011, I had 13 infections in 9 months, but no other symptoms. I woke up from what would be a partial to a surgeon who said they could not find it. I started crying. I was mentally breaking down. The pain is indescribable and if it had not been for my kids and husband, I would have wanted to die. If I had not got the insurance to refer me out, I would have spent all my savings, and begged, borrowed, or stealed to have it done, no matter what the cost. Money means nothing when your body is living in constant pain.
    After that first surgery, I started researching. I found this blog, and also a support group at tvtno.org that has a closed facebook group, where you can meet other women and read their success stories. I found out the difference between a full and a partial removal. I found out UCLA is one of the few experienced in the country with full removals. I saw Dr. Raz colleague, Dr. Larissa Rodriguez, and he works with a Dr. Kim also. I could not wait for him, because I was told by an infectious disease doctor I could die, when I became resistent to the last medication injection I was on. My husband gave me 40 injections in 3 mos. UCLA agreed to do a full removal, based on the fact that I did not have any infections prior to the mesh. I had no other symptoms, like erosion or nerve damage. Now I am 86 days post op. The surgery was a complete success, and I have had no more infections. Dr. Rodriguez did have to rebuild part of my urethra, so I had a 20% chance of incontinence, which would have been fixed with another subsequent surgery if needed. However, I was continent! My recovery was reletively pain free. I am so thankful. I have talked to a lot of women who have went to UCLA, and there are a lot of success stories. If there is nerve damage from the mesh, they tell you it will take a year to see how much it will improve. The FDA is to blame for not recalling the mesh. It has been too many years, and too many women. A car can be recalled easier than a medical device. However, doctors are listening, as there are now over 10,000 lawsuits. If anyone has any questions about UCLA, they can email me at lisa.pashenee@comcast.net
    I hope every woman becomes cured or very improved. UCLA does mesh all day,. everyday, and they do FULL removals. Don’t let a doctor chop on you and just cut a piece out. It will just get worse. In my case, Infectious disease doctor told me that the ecoli had colonnized around the mesh, so I would never have been cured with a partial removal. I am so happy, and I owe UCLA and Dr. Rodriguez my LIFE. I will not forget what happened to me, and many of us are fighting to bring media attention to this travesty. Until then, all we can do is help each other, one woman at a time.

    Reply
  5. lavalinda

    RR. Thanks Lisa for shouting out to the world that you have a life again because of the doctors at UCLA. I am sorry if others are so angry that their family is going through this and I understand. But wanting the mesh manufacturers or any doctor to take blame for doing this to us is not going to happen. Therefore we all have to concentrate on how to change this. That is why I write here. And other women around the world are fighting to change this but it is a long hard road. We need men to do it too, but to do so you have to separate from your anger. You left this comment but you did not write under your real name either. I understand why, but you cannot throw out here that others speak out if you too are afraid to use your own name. I hope you will work hard to change this with us, not be angry because your wife needs caring right now, not anger.

    Reply
  6. Dawn

    I am 100% better !!!! Dr. Rodriguez saved my life too…. This mesh steals our lives.. I first blame the manufacturers for not properly testing this material on human tissue, then I blame Big Pharma for pushing this medical device like its a drive through surgery.. The Dr’s who are removing this are saints! Partials I believe do not work because the material is not inert.. The chemical it is made of made me ill.. The moment I awoke from removal surgery I could tell I had my life back, the brain fog was gone.. I will preach till my dying day that medical polypropylene mesh is bad and never have it put in your body for any reason.. Lives are regained by mesh removal, I am Proof .:) it feels great to live again.

    Reply
    1. lavalinda

      Dawn…I know your removal was only about three weeks ago and it is wonderful that you share good news with this man. I do appreciate it.

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  7. Jane Akre

    RW: I just wanted to add to what has been said here. You do not trust doctors and appear to lump Dr. Raz into that group. Unfortunately every urogyn who was trained in weekend cadaver sessions by mesh manufacturers was told mesh implants could be his “bread and butter” and they are to blame/ as are the manufcaturers of course. There is no way these clowns know how to remove mesh or even decipher the symptoms. This is a travesty. Dr. Raz and Dr. Rodriguez are working around the clock to do mesh removals AND they are not getting rich – they receive the UCLA salary- they are not private practitioners. Really, they are heroes in my opinion. People are flying in from around the world to have mesh removed. You are right to be angry- how could this be happening to about 75,000 women a year STILL! No one knows how many will suffer complications. Read Patient Profiles at meshmedicaldevicenwsdesk.com Ive talked to many of these women though I am not mesh injured. Their stories are unbelievable!!! Thank you!

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  8. RW

    First let me say thankyou for all the responses. Secondly, I would like to emphasize that I would spend any amount of money to get my wife healed. I was expressing my anger and suspicions on all Drs and that was wrong. I am with my wife 100% in whatever she chooses to do. I just hate being on the sidelines watching her suffer. She put her trust in two Drs and that got her where she is today. We will put our faith in Dr Raz because we have no other choice right now. My wife has done the research and she has only heard good things about him. I did not realize that he only gets paid what UCLA pays him. I am relieved to hear this. It sounds like he is not motivated by greed but only a desire to help the woman damaged by this product. I am glad I was able to vent because your responses have been caring and informative. I will stand by my wife no matter the outcome. My thoughts and prayers are with everyone affected by these defective products.

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  9. lavalinda

    RW, I knew you were this kind of man because it took one to spend time writing out your feelings. Women have begged me to pull strings and get them into UCLA and have surgery by him and I have had to explain he can’t do any more than we can. He follows UCLA’s rules. When you mean him after the surgery, you will know why his reputation stands as a wonderful and caring man. Women of all ages and races applaud his care. He truly does care and he spends the whole day checking on women that he performs surgery on. That is why we all defend him. Because you can’t pay anyone enough money for the hours he puts in. The nurses say he is the first in around 5 am, checking everything is ready. Even to pulling curtains and picking things up. I don’t know how his family have put up with this all these years, but what he does for women now is very precious. I hope your wife wil be one of the ones who will not have remaining damage and won’t have the incontinence issue either. Please let us know how she does. We all really do care.

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  10. RR

    Linda, ONCE again you put into words what I somehow could not. I have been frustrated also! at some of the same pain going on and being felt since my surgery a month ago removing the sling that was in me 12yrs! and the havoc it did to my body plus GOOFY TREATMENTS by some GOOFY Dr.s!

    Some damage was temporary but some QUITE permanent as Dr. R said.
    For instance although I can walk, each night my right leg that was affected twitches, spasms and hurts severely but when I get up the circulation starts it supports me and I can WALK! So I HOPE SOME is more temporary with stitches and HOPE less will be felt after they are healed. Yet each day I get emails from well meaning friends, loved ones, families asking if I am back to my OLD self again NOW?, or running up and down the road! Some you would not believe or perhaps you would! HA!

    SO YOU put into words what I just somehow couldn’t and also a kind way to thank them for their continued support yet somehow relay to them this too is a journey. I KNOW they all mean well but when I open an email from a close friend or family asking if I am UP AND ABOUT doing everything again I hadn’t done 12 yrs! (OR some NEVER as my husband jokes!) I sometimes don’t even KNOW how to answer without rehashing things! or I think I am just asking them to keep feeling sorry for me!

    Probably just wanting people to BELIEVE me as I SO DID those 12 yrs! BEFORE I met you, this wonderful BLOG, people and the gentle and caring DR. R. who restored my faith in Dr.s that NOT all are ALL EGO CRAZY and QUACKS ESPECIALLY with FEMALES saying we were “emotional” NOT believing us and CERTAINLY NEVER admitting THEY could have made a mistake!

    It is a feeling I CANNOT describe to have on PAPER documented by Dr. R. what I believed was wrong from DAY ONE the stupid sling was put in me 12yrs ago without my knowledge during another operation and I woke up KNOWING it had to be WHAT had caused the ENORMOUS and never ENDING CHRONIC pain that just got WORSE over the yrs. I feel like WOW ! IT is finally on paper I WAS RIGHT AND NOT CRAZY!

    I feel like explaining or trying to to them will make them think I am just wanting attention or to feel sorry for me-NOT! JUST understanding somewhat. I AM GRATEFUL each day to WALK AGAIN! something I lost the ability to do without a cane the last 6 months and made me feel like I was on the last thread of a raveling rope! I could walk a lot, even a mile or so before that happened! It gave me a physical outlet to exercise and to get my thoughts together and to get my mind grounded each day, then at the last that TOO was taken! SO IT IS something I will NEVER take for granted again and the other small and big miracles that happen.

    YET when I get out, go to a Doctor with my husband driving and then out to eat afterwards which is SOMETHING I could NOT do the last 6 months or so!, my Body lets me know in NO uncertain way the next day or two I AM STILL healing with MORE pain than what has been usual since surgery! So your comments meant MUCH to me and made me feel we ALL who have had mesh removal are STILL from the same BIG SHIP but now taking life boats all going different streams to different end destinations but ALL better in some way! MY prayers are with you all! Subject of 12yrs of Mesh Hell Now a Beacon of HOPE! RR

    Reply
    1. lavalinda

      Yes it certainly is a journey. It was a long journey to get in such bad shape after twelve years and you won’t be normal after less than five weeks since removal. It also amazes me how little people understand. This was MAJOR surgery but because we did not have cancer, we are supposed to be well after two weeks.
      We are resilient yes, but our bodies have taken such a beating from removal and all the complications from years of having mesh inside us. Make sure you take a lot of suppliments. You won’t bounce back just like that but you have taken a lot of drugs and you need to replenish what has been wiped out.
      I have great days when I feel fantastic hope, but other days when I wonder if this nightmare will ever end. I do know it is normal because I have spoken to so many women who have gone through this before us. I am however very grateful it is out of me as I know you are too. I feel like we have to have a special email/letter to explain what this is like and send it out every week to those who think magic happened. Silly really, but then again people forget quickly, how we were before this surgery.

      Reply
  11. Gay Courter

    I am having surgery with Dr. Raz in Feb. Like RW who wants the best for his wife, I too have worries that I might be incontinent for a short time during recovery or forever. Will I be worse off than I am now? Who knows what he will find and what nerves might be permanently affected. I have had surgery in a university environment before. The docs are never selling services. They teach and do research. You will also be seen by students and some of that can be annoying, but it also gives you many levels of care because their work is always checked. Dr. Raz is traveling to India to teach there. He should have clinics to teach docs all over the US and Canada his techniques before he retires.

    Reply
  12. lavalinda

    Yes Gay, it is a fear we all live with and yet we cannot live with it in our bodies because that fear is far greater, which is why we brave it and have the surgery. I do not know how he keeps doing all this at seventy-six years old and I am very grateful he has not retired yet. I just sent him a short note wishing him a Happy Thanksgiving and told him I am thankful he was about to help me and many other women. Without his help, we would all be going through another terrible holiday season.

    Reply

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