NON Mesh Bladder Repair Surgery

The most difficult thing about what I do has nothing to do with my own complications to do with my mesh bladder sling.  It has to do with women who contact me searching for other methods due to prolapse or urinary incontinence.  I am NOT a doctor or a nurse and everything I have learned about my own situation comes from searching, reading and getting myself educated.  Plus listening to women who are going through excruciating complications of the various mesh sling surgeries offered by doctors around this country.  My foremost concern has been to listening to women who are so ill from mesh slings without anyone listening to them, and helping them through to a hopeful, better life.

I am still trying to do this myself and in October I will have mesh removal.  To understand my choice of surgeon, you can go to this link and read for yourself.  http://meshangelnetwork.com/2012/06/mesh-dr-raz-u-c-l-a/

So I have been reluctant to take on anything else until my surgery and recovery is completed and yet these questions about non mesh surgical procedures keep coming in.  When they do, I truly do not know what to tell women other than you have to get educated.  You cannot sit back and let someone else take over and hope they know what they are doing.  You have to find a good surgeon WITH EXPERIENCE in the technique you choose to have done and UNDERSTAND IT YOURSELF.  Then you will have to INTERVIEW the doctor you THINK can do a good job and make SURE he can.  There are no guarantees with any surgery.  There are risks.  You need to understand the risks and complications and choose wisely BEFORE you have any procedure done.

Rarely when a woman reaches the point of needing any prolapse surgery is she dying or close to it or she would not be contacting me.  She is already researching to find out about what a sling is and what she can do as an alternative.  This is because of all the TV advertisements from lawyers to do with taking cases of mesh related complications.  So this is what I would tell any women.  You have to think logically.  Would you rather take a couple of months to research and choose the procedure and the doctor, or would you rather take on even a slight chance that you will wind up like me and the many thousands of women with serious complications from mesh and get the job done quickly?  Once you have answered that question, more questions will arise.

Do not read the first paragraph about any procedure and decide “Oh yes, that’s the one I’ll choose”.  You have a huge amount of work ahead of you to try to keep the life you have now.  No one is going to hand everything over to you on a plate.  No one, not me or any doctor.  You are it.  For perhaps the first time in your life you have to take control of it.  No excuses!  None of ‘I am so busy’, ‘I work full time and juggle kids’ , I don’t have time’.  Make the time.  If this is the first time in your life you choose you, do it!  Your decision can affect the rest of your life.  Remember if you choose quickly you may have all the time in the world where you cannot do very much at all because you are in pain.  You may not be able to play with your children any more.  You may lose your partner because you can no longer have sex.  You may wind up living in so much terrible pain, than you may possibly contemplate suicide.  You may wind up alone and everyone leaves you to suffer without help.  MAKE THE TIME!

So what do you need to know?  I can only give you what I have learned and believe me it isn’t a lot on this subject.  So I am going to provide you with the quick information I have gathered and a few links.  The rest is up to you.  Now read on.  Do not be bullied by anyone you think has power over you.  They don’t.  Not doctors, not friends nor family members.  This is YOUR life.

I am giving you a mixed bag of information and procedures.  You should understand that sometimes a doctor could be swayed by medical device manufacturers and their products.  A doctor may also not be trained in non product procedures or even if he/she is, you have to ask how many they have done not just twenty years ago, but every day on a regular basis.  Also understand that ALL PROCEDURES HAVE RISKS AND COMPLICATIONS.  MAKE SURE YOU REALLY NEED IT BEFORE YOU DO IT.

Lesson #1. PLEASE NOTE; You also have to understand what these sutures are made of and then research the name of them and IF there are complications.  Certain sutures have been recalled in the past due to how they work against body tissues.  Retropubic suspension uses surgical threads called sutures to support the bladder neck. In this operation, the surgeon makes an incision in the abdomen a few inches below the navel and then secures the threads to strong ligaments within the pelvis to support the urethral sphincter. This common procedure is often done at the time of an abdominal procedure, such as a hysterectomy.

Lesson #2.  Traditional non mesh sling procedures.  Sling procedures are performed through a vaginal incision. The traditional sling procedure uses a strip of your own tissue called fascia to cradle the bladder neck. Other slings may consist of donor natural tissue or synthetic material. The surgeon ties both ends of the sling to the pubic bone or ties them in front of the abdomen just above the pubic bone.  I took this latter excerpt from this link  http://www.voicesforpfd.org/p/cm/ld/fid=90

Lesson #3.  Making bladder sling using pig skin.  Though there has been a great deal of success using human (cadaver) or porcine (pig) fascia (connective tissue) to create biomesh, there is a slight risk of tissue rejection. Therefore, instead of synthetic mesh or biomesh from outside sources, some surgeons will propose using the patient’s own fascia to fashion an organ sling to reinforce stitching. The fascia can be harvested from a thigh or the abdomen during the POP repair surgery. The surgeon removes a narrow strip of tissue several inches long from which to create a sling for the bladder. The surgeon anchors the sling to strong tissues in the patient’s pelvis at either end, forming a tension-free “hammock” to help hold up the bladder. Since the sling is made of the patient’s own tissue, there is no risk of rejection. And since it is not a synthetic material, erosion into the vagina is unlikely as well.  Other doctors will opt to perform POP repairs with stitches only, using no slings or reinforcing materials at all. Though this method carries the risk of stitches failing to sufficiently support the healing pelvic structures or from the reoccurrence of prolapse years later, it has fewer overall complications than sling and mesh methods as a general rule. I took this excerpt from this article.  http://www.hystersisters.com/vb2/article_453678.htm

Lesson #4.  Understanding the Burch procedure.  This method uses sutures to hold the bladder to stop leaking.  I do know two women who had this done 36 and 40 years ago without any complications.  That being said, all procedures can have complications, many due to the skill of the surgeon.  Read, ask and make an informed decision.  I took this from this article. http://emedicine.medscape.com/article/1893728-overview You can watch a video of a doctor describing this procedure here.  http://www.empowher.com/urinary-incontinence/content/what-burch-procedure-dr-alinsod-video

Lesson #5.  A newer method of the surgical procedure. http://www.reproductivecenter.com/stressincontinence.html explanation of laparoscopic Burch procedure.

Lesson #6.  What is a pessary?  If you have decided with all the problems you do not want any surgery right now and want to take the time to understand all these methods, you may want to look into a pessary as a temporary method of prolaspe care or as a permanent solution.  Sometimes we also have to face the fact that as we age, so do our tissues.  I have had women contact me because their aging mother was given mesh sling surgery and they are in agony.  I could never do this to anyone too old to understand and I hope you won’t too.  I took this paragraph and have included the link so that you can read more.   ‘With the aging population in the United States, there has been a renewed interest in pessaries as a conservative alternative to surgical repair for pelvic organ prolapse (POP). They present a good option for patients who have not completed childbearing, do not desire surgery, or are poor surgical candidates. Long-term pessary use is a safe and effective option for patients with POP and stress urinary incontinence. Although serious side effects are infrequent, insertion and removal of most pessary types still pose a challenge for many patients. Pessary design should continue to improve, making its use a more attractive option’.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876320

This is part of an email I received from a wonderful lady who has been through mesh removal now and is still recovering.  She was a lady who led an active life.  “I wore a pessary successfully for about 5 years prior to mesh sling surgery, winning my age group in many triathlons and being extremely active and healthy. A pessary works great for most, if not all women with prolapse. It’s a non surgical remedy as easy as putting in birth control or dentures. I never slept with mine and it came in and out in a manner of seconds. In retrospect I would have continued using it and would have avoided all of this misery. I don’t know why it isn’t used more commonly. There’s a size, shape, and type for everyone and most prolapse cases. I honestly don’t know why surgery is listed as the only remedy. I have 2 pessary’s in my medicine cabinet that I tried to keep me comfortable awaiting this last surgery but I was unable to use them because the mesh was making it impossible to have them inside me. After the surgery in October scar tissue help up my bladder. Going in for this last surgery June 29th it had fallen again and Dr. Raz said he used permanent sutures to hold it back up as it was pressing on my urethra making it impossible to void except a few drops so I felt like I always had to pee. If this falls again I’m not sure what will work because of all the work, but my first choice would be a pessary.”

I am sure that once you read this blog, you will be overwhelmed and cannot make any decision for awhile, but that is okay.  Take it one step at a time.

Let me get something straight once again.  I am NOT a medical professional.  I am a woman who has serious complications from a mesh bladder sling.  What you choose to do is up to you.  How you choose to live your life is up to you.  I wish you luck.

Update.  For new information click here.  http://meshangelnetwork.com/2014/04/mesh-will-i-get-complications-in-the-future/

26 Comments

  1. Kathleen

    Great information. Thanks for all your hard work and effort!

    Reply
  2. jane akre

    Linda– Brilliant! You are so good… thank you for all you do…You deserve the best!

    Reply
  3. Aleta

    I want to add an option to those seeking ways to avoid surgery.

    Whole Woman
    http://www.wholewoman.com.
    Whole Woman was started by Christine Kent as she fought/studied to avoid surgery and find a way to regain health. I am not affliated with her by no means; she actually began her videos in 2002 right after I had my first surgery (If her methods/videos had been available/accessible before then I would have tried them)

    Reply
    1. lavalinda (Post author)

      Thank you, it is much appreciated.

      Reply
  4. Robin Robbins

    Hi Just saw this for first time today. I am getting mesh sling and hardware removed OCT.18th in CA. #3 CAN AND DOES CAUSE PROBLEMS BECAUSE DR. R TOLD ME THAT IT IS A MIXTURE OF PIG AND OTHER ITEMS AND IS I will repeat IS A MESH! I hurt from day one almost 12 yrs ago and my story is the one of 12 yrs of Hell a light of Power! SO he declared my MESH a MESH! Doesn’t matter if it has pork products in it. Just another color for a Volkswagen as I say you might see blue ones, yellow ones, red ones etc. BUT they are ALL VOLKSWAGENS! Also My sister in law has used a pessary for several yrs now because of my horrifying story and says it works FINE! My first Dr. who put this thing in me without telling me what it was or anything during another surgery did tell me at that time that pessaries are for OLD WOMEN IN NURSING HOMES! BROTHER! And I know an older lady who got her bladder tacked up with her own tissue yrs before they had these STUPID slings, said it NEVER gave her ANY trouble. And there is a woman P.T. in OK who specialized in Women;s pelvic problems and could help MANY if they had gone to her first. SO DON’T believe DR.s who say THEIR kind is different. They are just getting paid by the manufacturers to PUSH THEM! Should be referenced like an illegal DANGEROUS DRUG! RR

    Reply
  5. tammy

    I’m so confused.I believe my doc has been lying to me for years..if it I had not seen the tv ad about the law suit, I would not know anything. My docs office hung up on me today. I think l have a long road ahead of me…..HELP!,,,,,

    Reply
    1. lavalinda (Post author)

      Tammy I will send you a private email. I do not work for lawyers and this blog is to help women not take any money or make money. It is because it is the right thing to do.

      Reply
    2. lavalinda (Post author)

      Tammy everything is here for you to read and understand you have decisions to make that could affect the rest of your life. I wish you luck.

      Reply
  6. Barb C.

    I had the mesh bladder suspension surgery about 16 years ago. Two years ago, I began having excrutiating pelvic pain. After 10 MRI’s in 9 months and a CAT Scan, they said I needed a new hip. The surgeon said No way and suggested I see an OB. She said it was probably scar tissue on my left side from the device but recommended doing nothing as taking it out is too complicated. Now I have blood in my urine and have to have a CAT Scan and they feel scar tissue may be blocking my urethra. I urinate more frequently now and have several UTI’s . They mentioned the possibility of taking fascia to fix the issue. I see the surgeon after many tests in 3 1/2 weeks. I read your info. on taking fascia, which sounds like a poor solution also. Any other suggestions?

    Reply
    1. lavalinda (Post author)

      First you need to get the mesh out, all of it before you have the fascia surgery. I am at last doing better but it has been a long journey. This link will take you to many links so that you understand the journey it takes to remove mesh and how important it is to go to the right doctor. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply
  7. KELLY

    I had mesh put in me without my knowledge as well and my life has been horrific. I studied for a year and interviewed so many Dr.’s to avoid this and still wound up with the mesh. I have lost friends, lost my love life and so ill I can barely do anything. I am soon to loose more friends as they don’t understand why it is not a quick fix. I cant find a Dr who wants to take on a bladder. You feel so alone and frustrated. I can find attorneys left and right but the Dr.’s are rare. If anyone knows of a good Dr please inform others so we know where to look. I am 36 and it has been 3 years and I don’t consider myself an older woman. In fact my youngest is in 1st grade.

    Reply
    1. Sherry

      Hi Kelly, My heart is breaking for you. Know exactly what you are saying. I am still researching, and still going to doctors… and friends don’t understand what all the fuss is about. Thank-you so much for sharing. You have just helped me a lot. Waiting with a prolapsed bladder and uterus.

      Reply
  8. judy.@gmail.com

    I know that Dr. Raz and his associates at UCLA are the best. Robin, how are you doing now? I was just diagnosed with a stage 2-3 bladder prolapse. Was going to get fitted with a pessary in November. So happy to have all of this information. I didn’t know that most of the options involved mesh. You are doing huge service to all of these women.

    Reply
  9. michelle

    I have a prolapsed bladder 45 and just had my uterus removed 2 years ago. I dont know what to think, scared to death to have bladder repaired but can’t live this way either !!! Ugh my doctor says the mesh has improved ?? Now what?

    Reply
    1. lavalinda (Post author)

      Michelle either your doctor is uninformed or does not know how to repair you without using mesh. My suggestion. Go out to UCLA. Don’t trust any doctor who tells you this.

      Reply
  10. Carol Foote-Bley

    I had surgery 13 months ago, vaginal hysterectomy, cystocele and retrocele repair and bladder sling TVT-O. Thankfully the only mesh I got was the bladder sling as my doctor gave me the option of using my own tissues for repairing after the hysterectomy. However the mesh TVT-O that I have is causing moderate discomfort especially on the left groin, sometimes there is milder discomfort on the right side. I haven’t gone to the to talk about taking it out but it may come to that. I have had some re-occurance of the bladder prolapse, and the doctor’s answer to that was that he would need to put mesh in to take care of that. Is there a likely hood that the UCLA Doctors could repair that more permanently without using mesh too? I am retiring at the end of 2013, and had thought to have the bladder prolaspe repaired again before then, but I don’t want to get any more mesh, and maybe get rid of what I have. I already have Medicare active, and secondary insurance through the hospital where I work.

    Reply
    1. lavalinda (Post author)

      Yes they can Carol and they don’t use mesh. The pain in your groin will continue to worsen and could cause permanent nerve damage if left too long, so because it takes some time to get a consult appointment and then surgery, it would be wise to begin now. You can have the consult and then set surgery for after you retire, which I think you meant 2014. You will have no problem with getting help at UCLA with the Medicare and insurance. I had it all set up and I have not had to pay any out of pocket expenses.

      Reply
  11. Cindy

    I have a prolapsed bladder, I literally sit on it when I sit down. I am not having any incontinence. I seen the urologist today, my pressure flow was good and today had a cystoscopy, said he recommends a sling, but I have to see a GYN first, if there is anything he needs to do, they would work together in surgery. I didn’t think to ask about a pessary, I am a nurse and have seen some terribly infected pessary’s. I asked my urologist about using my own tissue, he said that is outdated now?? How do I find out who in my area are experienced in this area?? Any help would be greatly appreciated. Thanks, Cindy.

    Reply
    1. lavalinda (Post author)

      Cindy I would go down every avenue before I had anything to do with mesh slings. It is a much higher risk than your doctor will tell you. The reason they say using your tissue is outdated as so few doctors can do this technique. They would have to go back to school and retrain. I know so many nurses who lost their careers due to mesh. My suggestion is you start searching and calling every urologist who deals with female issues. Not men’s. They go to see them and see what they say about mesh. Then go with your gut. If they tell you they no longer use ‘that’ type of mesh, be aware all the companies are being sued and mesh is mesh regardless of new names. I wish you luck but hang in and stay steadfast. It would be worth flying out to UCLA if you can’t find anyone else. Better than suffering the rest of your life.

      Reply
  12. Michelle Ruiz

    I had a pig skin sling put in 2002. I was fine until 2011. Then I have had horrible pain. It hurts to sit on my bones. I have pain in my back and right hip. My muscles hurt on both thighs. I have had MRS, X rays,. I have been told that I have fibro myalgia. I went back to my doctor that did the surgery and he told me it is in place. I have been to nerve doctor and had test. I have been to two OBs. One says if it was the problem then it would have done it from the beginning. I don’t have the money for all of this. Not sure what to do.

    Reply
    1. lavalinda (Post author)

      Michelle I asked Dr. Raz about these slings and he told me he would not use them because they cause systemic problems. Your doctor has no clue. It takes a long time for any reaction although the signs are small at first and you don’t acquaint it with the sling. Why don’t you go to UCLA and see them.

      Reply
  13. Heather

    After having a total abdominal hysterectomy when I was 29, I now need bladder repair surgery at age 40. I let it go way too long.My OB suggested the biological sling/ animal sling. He will not do any mesh surgeries. I’m a nurse and like to stay well informed. Now I am hesitant to do the biological sling due to systemic problems. It makes a lot more sense to use my own tissue. However, I am not in the position to travel to UCLA. My bladder is severely prolapsed and I am having the sling for the incontinence done at the same time as my bladder repair. Should I try to find someone closer to home that uses my own tissue as a sling vs. the animal sling? Any suggestions would be helpful. Thank you!

    Reply
    1. lavalinda (Post author)

      Heather I have been trying hard to put something together and even asked Dr. Raz but mesh has been used and nothing else for 15 years and it is like hunting a needles in a haystack. You probably need someone to do the Burch procedure so sad to say in involves a lot of phone calls to find someone. So learn what every procedure entails to understand what you need and use your nursing skills to contact every nurse you know to find a doctor. Nurse Practitioners usually know a lot more so I hope you talk to one. Keep me informed and when you find someone and get through it, please share her to help other women. We want to start a page at the top of recommended non mesh doctors.

      Reply
      1. Heather

        Ok..Gonna give it a shot..Thank you for your help and I will keep you posted..Keep your fingers crossed for me!

        Reply
        1. lavalinda (Post author)

          Heather I am with you all the way.

          Reply
  14. Heather

    Hi again..Just wanted to give you a update..I’ve searched and searched for another doctor to perform the surgery using my own tissue.However, the search was futile..My bladder has become so bad that I’m in pain all the time now and I keep bladder/urinary tract infections. Due to all of this, my OB has scheduled my surgery for August 6th..I’m having a sling procedure done by my Urologist for incontinence at the same time as my bladder and vaginal repair..This condition has snowballed beyond belief..Just please keep me in your thoughts and prayers because I am highly nervous..My OB still believes that the animal sling is the best solution for me due to my age and he’s hoping that when the sling dissolves in 10 years, I will have built up enough scar tissue to hold my bladder in place..Hopefully I will be one of the success stories..I have no other choice..Thank you again for your information and help..I will keep you posted after I come home from the hospital..Take care!

    Reply

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