Don’t despair join the fight

When I accidentally came across the FDA report that was put out as a warning on July 13th, six days ago, I felt three things after I read every word.  First vindication.  This is because like so many women all over this country and the world, I had been made to believe I didn’t have a problem.  If a doctor can’t see it, feel it or touch it, then it is all in our heads.

The second thing I felt was anger.  My anger was at an administration of people called the FDA.  Mesh is an implant.  It is a foreign body that is not compatible for many people both men and women.  In men and women it is used to repair hernias.  It has ruined the lives of men as well as women. What the FDA should do is protect patients by passing a law saying that we MUST be told of these risks without question.  That after surgery, we should be handed paperwork with the implant number and all information we need to report any adverse reactions to the FDA if need be at a later date.  Those of us who struggle with pain after this surgery , should not have to fight to get information that we have a right to.

The third thing I felt a needed to do was to spring into action.   The way to clear your head and make yourself feel better is to do something!  If you are reading this blog then there are very important steps you can take to help yourself and other women.  First if you have not done so, report it to the FDA.  That will not be easy because you need information to fill in the online form.  Read the FDA report following this blog and make notes of how they tell you to do it and the information you need.  More information is here on my blog  http://meshangels.com/2011/01/report-to-the-fda  The FDA report does not tell you how to read medical records to find this information.  I had help from an RN friend to find mine and I wrote it down on this blog.

Something important I must tell you.  I spent money to get my records and weeks of my precious time.  I was ignorant at that time but now I know this much.  YOU DO NOT HAVE TO BUY YOUR RECORDS TO GET THIS INFORMATION.  You can go to the hospital where you had your surgery and ask the records dept for the information you need.  Print out the blog page with where to find it.  Remember, people who work in record departments are not doctors or nurses.  They need your help to give you the information you need.    Then you file it yourself and make the FDA aware we are many!

You must also ask what type of surgery you had.  TVT, TVT-O or other.  You must ask what manufacturer made your mesh.

I must make something very clear.  A warning by the FDA probably will not make the news.  Only a recall will ensure everyone who has had this mesh implanted in their body, would get a notice.  That has NOT happened.

Last before I stop writing this blog.  We all must do the work to stop this happening to others.  We must band together to stop the pain and madness.  Don’t look to the next guy to do it for you.  Become active in the fight.  We need you!

Don’t forget to email me if you want to talk, need help or want to help.  Email me linda@teacupmilliner  and I will be there for you.  I promise.

14 Comments

  1. Heather

    Hello, My name is Heather and I read your article online about the bladder mesh slings. I had my surgery 6 days prior to the recall going on national television, and let me tell you, I was not very happy!! I am concerned because I had the lynx sling, and that is on the list of recalls. My main question is I have not had a whole lot of problems until most recently. I started developing pain in my left groin area that radiates up into my left side and around my back. I made a comment about it to my Dr and he said that it is very common for that to happen, but didn

    Reply
    1. lavalinda

      First definately file with the FDA ESPECIALLY as yours is on a recall list. I will now send you a private email. Linda

      Reply
  2. VB

    I have an idea: Many hospitals are promoting the slings as a sure fix to cure incontinence and their target is huge: baby boomers. They often have seminars and have a guest physician (urogynecologist) possibly with one of his/her successful patients touting the product.

    Try to attend one and give out a copy of the new FDA warning after the seminar. If there is a question/answer portion to the seminar you can ask what are the complications, how are they resolved, etc. Use the FDA warning as your guide to quote from. It is sure to generate questions from the audience.

    If you are too incapacitated to go, maybe a family member or friend can go in your place and speak for you.

    Check your newspaper or check the hospital website’s calendar of local events planned for the community.

    Sincerely,

    VB

    Reply
  3. Traci

    Thank you for posting this! ! Your are so right, we all need to stand up and STOP this ! KNOWLEDGE IS POWER. i had my surgery nov 2010, and my mother came over today. There I was wallowing in self-pity again, because the pelvic pain and yet another bladder infection. and my mother came over to check on me, she told me about the recall. I KNEW IT ! I wanted this out months ago! Once again I did not listen to my GUT GRRRRRRR! So I went to work! I gotta find out what kind of sling or ” mesh ” I have. And the info you gave me was helpful. your right, we need notice. We get notices about cribs or carseats, whats wrong They dont what want the WOMAN to find out , the FEMALE? huh? Oh they have a storm comin’ ! Just from me … cant wait ! Thanks for the added info and your VOICE ! AWSOME, makes me feel like giving you an ocean of thanks, for letting me know I’m not the only one. I am not alone. Alll of you will be in my thoughts and preyers!!!! i send you all light and love .
    T.

    Reply
  4. Melissa Ward

    I with you guys all the way!! Tell me what to do!! This has to stop!! I’m sick and tired of being sick and tired! I’m also tired of doctors doing what they want when they want! They need to be accountable just like anyone else!!

    Reply
  5. Lisa Elddr

    Will the implant need to be removed? I hope so, I have had many problems eith tbis. How quicy wl we be taken care of after we contact a lawyer? Im ready to get it fixed.
    Lisa

    Reply
    1. lavalinda

      Hi. I will reply to you privately and give you a list of good removal surgeons.

      Reply
  6. Miriam

    Hi, linda I didnt scroll down, so I emailed you from my email acct, well anyway, I had the bladder sling operation I think 11/2010, notice my urine wasnt coming out normally anymore, also noticed months after the color of my urine was dark, which looked to me like blood in my urine, but went to the dr’s and got tested and they found nothing, cept the tech who did the sonogram sent me to empty my bladder and when I came back she said I still had urine in my bladder. Now.. I am having cramps all the time and my stomach is bloated.

    I have an appt w/my medical dr, but was going in early to go into the walk in emergency room to get checked becuase if i dont do it that way I will have to wait weeks to see a dr. but now also reading your blog i will also ask for my records regarding the exact date i had the operation, and the maker of the sling. . What is TVT/TVT-O? Also what happens next another operation to remove the sling? I want to say thank you for all your information, extremely useful. Well anymore info you can give me would be highly appreciated.

    Reply
    1. lavalinda

      I will reply privately to you in a moment, but TVT and TVT-O are two types of bladder slings. There are others. Yes, there is no other way but to remove it. Without doing so you will be diagnosed with kidney disease. Dark urine, not emptying your bladder are all indicators of complications of slings. Removal is not easy and requires a specialist who is highly skilled. To give you an idea of how hard this is, one woman doctor told a lady who contacted me, “I can’t remove it because they aren’t designed to be removed”. This is why we are all up in arms about this continuing. Don’t go to just any doctor. You don’t want anyone practising removal.

      Reply
  7. K. M. TEPP

    I had a mesH slng put in in MaY OF 2010. i AM NOT SURE IF MY ISSUES ARE A RESULT OF THIS PROCEDURE AND THEREFORE NOT SURE HOW TO PROCEED CAN YOU HELP ME FIGURE IT OUT THE SLING ONLY HELPED MY IONCONTINENCE FOR SIX TO EIGHT MONTHS AND THEN I WAS RIGHT BACK WHERE I STARTED FROM WEARING PROTECTION EVERY TIME I LEFT THE HOUSE NOT ONLY WAS I HAVING URINARY LEAKAGE BUT I ALSO BEGAN HAVING BOWEL LEAKAGE ISSUE WITHOUT WARNING I ALSO HAVE AN ACHING AND PEANFUL SENSATION IN MY UPPER THIGH AND IT SEEMS TO RUN ACROSS VAGINAL OPENING HAVE BEEN DEBATING IF THIS CONDITION COULD BE RELATED TO THE SLING OR IF IT NEEDS MEDICAL ATTETION OR IS POSSIBLY JUST OLD AGE ANY INFORMTION YOU CAN GIVE WILL BE GREATLY APPRECIATED THANKS

    Reply
    1. lavalinda

      Please understand that this is not old age. When you wrote about bowel leakage that is a sure sign of erosion. You should find out if there was just a sling or other mesh was used. To do this you need to go to the hospital where this surgery was performed and get your nurses operative report. On there it will say type of implant(s) and numbers. Use them to report your complications to the FDA. I am going to send you a seperate email to tell you how and where to turn to now.

      Reply
  8. K. M. TEPP

    Thanks Am I in an at risk situation with this issue

    Reply
  9. Liz

    I had my procedure in June of 2009 and honestly things improved. I did notice occasional pain when starting intercourse, some times here was light blood when urinating after intercourse, and I started getting UTIs. After a recent DR visit they said there was blood in my urine and retested a couple times. I have delayed my return follow up because I’m preparing for gall bladder surgery, but I have noticed that over the last few months I’m not able to fully void. I don’t have all the pain others are having, but now will find out what type of sling was used. I can’t afford to find out I need surgery for the removal down the road when I retire. What should I watch for and when should I have it removed?

    Reply
    1. lavalinda

      Liz, other women had to have gall bladder surgery after mesh complications. Why, I do not know, but it is something to think about. Definately get the sling information. UTI’s can get very serious indeed and one of the ladies who helps me could have died had she not had it removed. Watch for continuing UTI’s they get worse, increase in volume and then antibiotics do not work. Also light bleeding and pain during intercourse is a sure sign of erosion in early stages. Take care of it soon before the situation gets bad and the damage done so that you will be permanently injured, but be aware that almost every doctor out there will tell you it is not the mesh. Go out to UCLA and do it early. The link is at the right side of this blog and says Dr. Raz & UCLA doctors. Because you cannot void correctly please consider taking marshmallow root to stop serious infections. This is the blog that tells how I stayed well. http://teapapers.com/bladdersling/2012/09/mesh-my-wellness-plan
      I had my mesh removed 7 weeks ago. It is well worth doing early. I had to wait so long and it caused me nerve issues. Do it soon.

      Reply

Leave a Comment

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