Bladder Sling & Hysterectomy

I dedicate this blog to all the young women who can no longer care for their children because of bladder sling mesh.  For all the women who have lost their careers because they can no longer work, because of mesh.  For all the women who should be enjoying their retirement years and their grandchildren but cannot because of mesh.  For all the elderly women who are living a life of pain that no one understands and there is no chance of a surgery to remove it, all because of mesh.

Please understand I am not a doctor nor am I giving you medical advice.  All I want is that you are educated BEFORE you have a sling implanted in your body.

For this blog I want to write for women who have NOT had sling implants but are considering a hysterectomy.  I am writing because you are in the danger zone  for bladder sling mesh and it’s complications.  This is because most doctors who do this surgery will automatically place a sling implant in your body at the same time that they remove your female organs.  This is because when they do the latter, your bladder stands a good chance of dropping where your organs once were.  This is why you MUST understand what a hysterectomy is and if it is needed before you commit to it.
If you fall into this category, then before you choose to do this, go to this site.  http://www.hersfoundation.com/contact.html  Or you can call them for information, this is their contact details
HERS Foundation
422 Bryn Mawr Avenue
Bala Cynwyd, PA 19004
Phone: ( 610 ) 667-7757

Toll Free: ( 888 ) 750-HERS or ( 888 ) 750-4377
Email: hersfdn@earthlink.net

What is a bladder sling you ask?  It is a mesh product made from synthetic polypropylene mesh which basically is a soft plastic mesh fabric which once placed in your body will almost immediately begin attaching itself to your bladder.  I did not understand this myself until  after my surgery.  Once the sling is inside you, it will attach itself to the bladder and anything close by.  It cannot be removed in a simple operation.  It takes huge skill and without that skill you will have many partial mesh removal surgeries.  I know for a fact that one woman has had seventeen surgeries.  Yes, 17!

Click on this link to view a photo of one type of mesh made by Boston Scientific.  new bladder sling It looks soft and harmless and would seemingly hold the bladder in a comfortable position.  What you must understand that it has to be attached to your pelvis.  To do this there are two arms/anchors to hold it in place.

For some women the complications begin immediately  For others it takes five to seven years before the complications occur.  However for some it happens even later.  Just because you have had a calm period does not mean you are out of the woods.  Often the pain begins slowly and numerous normal tests will not reveal any signs of problems.  The bad part of this is that women are then perceived as having this ‘all in their heads’.  In this country, women are either turned away and left to suffer or given anti depressants and/or pain killers, many of which are addictive.  In Canada I have been told that women are given one or more mental evaluations to see if they are making it all up and they have to fight to be believed.  This is just another assault on women’s rights.


This is a photo of a piece of mesh 3 months after removal.  It no longer looks soft and comfortable.

Symptoms of mesh complications.  Women have reported to me over time that their sling has caused severe headaches, lupus and other immune disorders and of course endless agonizing pain in their groin, thigh, hip, pelvic area, back, legs and even neck and shoulder pain.  This is because over time the mesh will shrink and harden and cause tremendous complications.  Women have told me that childbirth or cancer was never as bad as the pain they had with mesh complications.

I hope this blog has brought you some reality.  If you find this blog before you have any surgery, you can now make an INFORMED choice.

I care what happens to you and all women.

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

 

190 Comments

  1. Ruth

    I am writing to affirm that what Linda says is true. Someone reading her blog might think she is just one of the few unlucky ones; that a surgical procedure so widely accepted as the “standard of care” by the medical community could not possibly be so harmful. Let me share my story.

    As a nurse, I knew the responsibility of a doctor to explain the risks of surgery before I signed the consent form, so believed the TVT to correct my longstanding incontinence was a benign procedure, with fewer risks than hysterectomy. I agonized over having the hysterectomy itself and put it off for many years, but finally found it impossible to cope with the weeks of uncontrollable bleeding and decided to go for surgery. I was so pleased that I would be able to take care of my worsening incontinence at the same time.

    All went well, I recovered quickly and felt great–and was amazed to be able to RUN with my teenage son without leaking urine–something I had not done in years!

    I cannot begin to describe the nightmare that began a few months later . . . being awakened in the night with astonishing pain . . . the horrible symptoms of a severe bladder infection when lab tests showed nothing . . . going to a succession of specialists to be met with stony looks, pats on the back and being told I was “fine” . . . the humiliation of being told “categorically” that it “cannot be the mesh,” “the mesh used in TVT is too small to cause any problems” . . . the horror of being told “it can’t be removed anyhow, it’s permanent” and being sent to physiotherapy to try to “manage” the pain. I refused to give up, and went to a GP who listened and searched for other possible causes of pain, eventually to recommend a psychiatric evaluation to find a presumed psychogenic basis. I felt trapped in an unending cycle of medical denial, and increasing and unrelenting pain.

    Thankfully, I hope my story will end well, thanks to Linda and an amazing support group of women who have been injured by this procedure. The GP listened to the evidence I collected and has finally recommended a referral to someone who can help. So many stories have no happy ending, so along with Linda I caution everyone who may read this: Do not do it! Save yourself the agony and heartache! There are alternatives!

    Reply
    1. lavalinda (Post author)

      Thank you for writing here. Many women are afraid to write about their story. Every one here will save another woman this heart ache. We need you.

      Reply
      1. angie harper

        hi,
        i need help,i feel tremendous pressure and the doctor says mesh is the only
        alternative.this is so physically uncomfortable i am afraid everything is dropping out
        do you know of any alternatives. iam all alone in this i lost my husband to cancer
        2 years ago.2 of my 4 boys are still at home 13 and 15.i will pray for your healing
        and that GOD brings you some over due peace.

        Reply
        1. lavalinda (Post author)

          No mesh is not. Your doctor obviously was not trained otherwise. This is the problem. All they know how to open a packet. It may be harder to go further afield but it would be so wise. I will send you a private email.

          Reply
    2. Valerie

      Hi, my name is Valerie. I am so glad I found this blog. I hope people are still responding to it. Let me say first, I know what you are feeling, because I too am feeling these same things and my heart goes out to each of you.

      I am 42 now. I had a total davinci assisted hysterectomy in July of 2012. I had prolapse of pelvic organs and cysts on the ovaries. It was all removed. My bladder was repositioned and put in a sling for the incontinence.

      The gyno who performed the surgery is not helpful and has come to the conclusion all of my pains are in my head. He does not believe in HRT either, so I suffered greatly after this surgery with the hormonal effects.

      Anyway, my healing has been slow. I lost my job over the pain and inability to return to work. The Gyno has no idea why I’m not ‘getting better’. He was an azz and even proceeded to yell at me during an office visit. (Of course, to be expected in this town, where people have told me of doctor’s lying to wives about needing a shot because their cheating hubbies gave them an STD.) How is that even moral or ethical?
      Well, I am constantly in pain in my abdomen, below my belly button. It’s hard to pee, yet no signs of UTI. I have been ill with flu and viruses constantly and on meds since surgery for one thing or another. Sex is out of the question. I’ve tried twice with bad results. First time, it tore my surgical cuff apart and second time I contracted BV overnight. :( Both were tremendously painful. Hospital told me it was PID too, BUT I HAVE NO FEMALE ORGANS! My PCP was in shock when I showed her. And, in fact, my gyno never sent her any record of my Hyst. She had to ask me everything. She seemed upset after my visit.

      I’m just so ready to get better. I don’t leave the house, I stay in bed now. It’s only gotten progressively worse. I just want to go back to having a life again. This surgery was supposed to take the pain away, not make more. I have no job now, no insurance, no home, no husband and maybe now, never a boyfriend. I can’t live that way the rest of my life. I will surely shrivel up and die inside and then out. There must be help. Pain pills don’t even take the pain away. It’s a constant ache and sharpness. Like bad gas after surgery in the same spot all the time. I don’t get bloated or anything, but I can feel the relief when I press and massage that area. Then it just comes right back.

      I don’t care what a doctor tells you. DO NOT do this without doing the research. I live in Texas, near Fort Worth, but had the surgery in a small town full of docs with a God Complex. No choice at the time. I don’t even know what kind of sling he used or anything. I can’t get my records, I owe him money that I refuse to pay, because he refuses to treat me with dignity and respect. I hope others read these things and that we all get help in some way. God Bless, I pray for all of you.

      Reply
      1. lavalinda (Post author)

        Valerie I am going to send you a private message with my phone number. I wish I could help you more but I and other ladies will try to comfort you. This happens so much and then women lose everything. I have tried hard to create awareness so that women can get the help they need, but it seems to be a never ending closed door. It makes me very sad. I did write a blog with the help of a nurse who told me what to do if you are treated badly by a doctor. http://teapapers.com/bladdersling/2012/11/mesh-doctors-without-ethics Doctors are supposed to follow certain ethics and you have a right to report them if they don’t.

        Reply
        1. Valerie

          Thank you for the reply. This is so frustrating. People telling you it’s all in your head. Doctor’s thinking you’re just a hypochondriac. Shoving you to the side to hurry and make more money from patients with better insurance and income. Not caring if you have any kind of life after the procedures. When all you wanted to begin with was relief from pain you already had.
          I thank you for this info and will call. I am desperate to find some type of relief and finally a normalcy in life. I think my current state of mind makes matters even worse due to all of the suffering I’ve endured over the years and need to find a solution.
          Again, I can’t thank you enough.

          Reply
          1. Terrie

            I am sorry about the trouble you are having. It seems similar to mine. I was wondering what you meant by the pain when you said you could massage it but it would come back. where is the pain?.

            Reply
            1. lavalinda (Post author)

              Terrie can you add the name of the person you are asking the question. That way they can answer when they come back.

          2. Valerie

            Well, Terrie, the pain is above the pubic bone and below the belly button in the middle and radiates out to the tendons on either side of my vagina. I’ll rub on my tummy, above the bladder and it will ease the pain, but comes right back.
            I went to pick up my medical records today and found out I had a TOT sling. Apparently, it’s a mesh tape used on the ureter to support the bladder and urethra in the case of stress incontinence. I think he may have set it too high and that may be the cause for my abdominal pain and painful urination.
            Apparently, he also neglected to mention that the mesothelial cyst on my right ovary had extensive adhesion to the Serosa of my small intestine. Probably the reason for my onset of gluten sensitivity. It did not mention how much of the Serosa or small intestine he removed. Or what he did to repair that defect. It says I had an LAH/BSO, High uterosacral vaginal vault suspension, TOT and cystoscopy. I have also never been put on hormone therapy to keep the vaginal wall from atrophy during the healing process.
            I have also come to learn, he never reported any records or findings to my PCP. And, now with the onset of Bacterial Vaginosis I wonder if I can look forward to more of that in the future. I also learned I have Tinea Versicolor, which leads me to believe it may be a yeast allergy posing as a gluten one. But, those go hand in hand. Since I’ve had this recurring skin condition for some years. Just never knew what it was. But, my body may just be very sensitive to changes in bacterial flora.
            I also had Squamous Metaplasia on post op exam of my uterine cells. Vitamin A deficiency can attribute to that and also stress. None of this was brought to my attention post op. What gives these Physicians the right to keep information from us and gives them the wherewithal to decide if it’s important or just nothing? All of these things work together in the body and if something is out of whack, there is something going on that needs to be addressed. I hope I find a good new doc when I move for the pain control until I can get something going for UCLA.
            I went on Wednesday, to pay bills and do grocery shopping. First time I’ve been on my feet for extended in a while. While shopping in the store, after 30 min, I started feeling nauseaus. I got in line at the bank to make a deposit and while waiting the naseua got worse. Then the sweats and pain in my abdomen rolled over me. I thought I would pass out if I didn’t sit down. I got through it after 20 min and managed back to my vehicle. I had to eat a nectarine and sit in the car for 15 more min before I could drive. This is def no way to live.

            Reply
            1. Ramona

              I’m sorry you are in pain. I’ve had a Bladder sling put in and I have been in pain every since it was put in,the doctors say it’s not their fault or they blame it on something else and now I have a sist on my overies and have to see a pelvic pain, I’m having trouble passing my water and sometimes I don’t know when I have to pee.I have had to stop going to church because of the severe pain,sometimes I bleed. To top it office I cannot have a boyfriend due to the pain, not being able to have sex.

            2. lavalinda (Post author)

              Ramona, you are speaking for volumes of women who cannot pee after a sling is installed. I was one of them. Please make it a point to go and see one of the UCLA urologists. If you cannot right now, ask for a urodynamics test to be done and it will show that you cannot empty your bladder. That is if you can find a urologist who will tell the truth.

          3. Valerie

            Sorry I haven’t called Linda. Things have been a little hectic getting ready to move. And, I wanted the med recs first, as well.

            Reply
            1. lavalinda (Post author)

              Do not worry Valerie. I know how hard this is and you have to take this one day at a time. You had a lot of work done by this doctor and the problem is most don’t do a good job and leave women with more complications than they had before surgery. I hope you will be able to get out to UCLA soon. Money is always an issue I know and I recently added updates on this blog for women to try to get help with the flight. http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money

    3. Hi

      Hi Ruth, are u in Uk ?

      Reply
    4. Debra

      I know this is almost two years old, but here’s my story: In about 2000, I had some sort of “microwave” procedure where two paddles were placed inside of me to send current to contract pelvic floor, by Gyn. In 2006, with a urologist, I had TVT placed for urgency, to hold the urethra back, also was dx with incomplete bladder emptying. Was ok for a time. In 2009 noticed more pain and urgency, still leaked all the time, figured it failed, and tailbone hurt so bad to sit, and even worse to get up from sitting. I also went through series of tests on uterus and ovaries, finally ended with TAH/BSO on 8/3/2010. They removed a golf ball sized, benign, semi-calcified growth attached to my insides, but didn’t know what it was. Surgery was to have been laparoscopic, and began that way, until they saw that growth’ so they opened my abdominally. Within weeks, tailbone pain back with a vengeance, had cortisone shots. I also felt like I was wiping my urethra or bladder after I urinated and thought I could feel the tape in there and that I might cut my husband with sex. I went to the urologist who put the TVT in, and they assured me all was well. I thought perhaps it had moved or something, and was blocking the opening and that’s why I couldn’t let him in there. Can’t even fit a pinky finger! I explained this to him and he thought I was crazy. Then, next problem, joint pain, ended up walking with cane, had X-rays and MRI, “arthritis” was the dx in one knee. Not feeling confident, I pursued and in February 2012, was dx with SLE, “lupus.” I was wanting to participate in a clinical trial, and they required a recent Pap Smear, which I hadn’t had since pre-op TAH. My Gyn surgeon wasn’t at the same practice, so I saw the ARNP at my primary’s office (she’s the one who believed my arthritis was more than just that!). I had the Pap and the tiniest speculum was painful, but she was so gentle. She said she saw much scarring and adhesions, and asked about sex. I said 3 times in 3 years!!! Most marriages could not make it through this! The Pap was normal. I did the clinical drug trial. So, as I write this, I still can’t have sex, PAIN beyond imagination! I am on hydroxychloroquine, methotrexate, nortriptyline and folic acid. I take laxatives every night, flexeril as needed, even though I get full deep tissue massages monthly. I take an herb for water retention and my weight fluctuates 5-8 pounds weekly, even sometimes daily! I’m miserable. But I am a type A, positive thinking, Christian woman. I work full time, sleep and rest when I’m not working. My health insurance is through my job, my husband is self-employed as of last year, due to a layoff. I was searching for information on having a plastic surgeon rebuild the vaginal wall, which is what the ARNP spoke of, since I’m young (48) and can’t have pain free intercourse. I came across a blog that mentioned this. Any ideas? Any Correlation?

      Reply
      1. lavalinda (Post author)

        Debra, read this blog and I hope it will help you make a move forward. http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

        Reply
  2. Anita Lee

    I had the mesh put in 2007 later on in that month i started having bad stomach pains low back pain spasams in my left side my thigh constantly hurt..Since that time i have not been able to hold a job due to the pain the incontinence has returned i have repeated infections and my doctors say its yeast and treats for yeast within a few days after being treated the infections are back..And i as well have to run for the rest room and most times dont make it wake up in the middle of the night with bad leg cramps..I have tried since 2007 to get on disibility and still have not been able to.And due to me not being able to work i have lost my insurance and cant afford to go to the doctor i use the free clinic at the local health dept. Is there anywhere i can get help?

    Reply
    1. lavalinda (Post author)

      You know it is the sling as well as I do. I will send you a private email and see if we can get you some help.

      Reply
      1. Anita

        Linda i am from Tennessee sorry i eft that out

        Reply
  3. Colleen Stowe

    My daughter is in desperate need of help. In Dec of 2011 she was scheduled to have a ‘entrastem’ (sp?) pacemaker put into her lower back to help with severe bladder cramping and incontinence. The morning of the procedure as she was being prepped for surgery the nurse read the procedure to be done to her and it included a bladder sling. My daughter told the nurse she had not been told about the bladder sling so her doctor was called to explain it to her (why this wasn’t done before this point I don’t know…) Her doctor told her it was necessary and would work with the pacemaker to ease her problems. She was not informed of the side affects of the mesh sling. Obviously she had no time to research this as she was ready to be taken into surgery so she reluctantly agreed.
    She has been in severe pain, which is getting worse and worse since shortly after the surgery which prompted her to look into the bladder sling. Its pretty scary when you google ‘bladder sling’ the first things you see are lawyers… She now has a protrusion into her vagina, her pain is getting unbearable and everything we have found online is frightening.
    My daughter was diagnosed with endometriosis in her early teens (now 29) so she is no stranger to pain and has been able to cope with pain on a daily basis most of her life, but this pain is unbearable. She had a hysterectomy a few years ago because of the endo.
    Her doctor has her scheduled for a CT scan this week but I understand that will probably not show the mesh…
    She has an 8 year old son who needs his Mom to be healthy. I’m sure you have heard this story many times before unfortunately. My heart breaks for anyone affected by this.
    We have searched for a doctor in our area who specializes in mesh removal but have come up empty. My daughter does have medicaid and has been unable to work for the last two years because of other health issues. We don’t have the money to travel to get her help but if that is what is needed I will find a way.
    If you could direct us to doctors who could help her it would be so very much appreciated. We live in Michigan, in the Detroit area.
    Thank you in advance for any help you can give her. And thank you for this blog! You are truly a God send !

    Reply
    1. lavalinda (Post author)

      I will send you info and my phone number.

      Reply
      1. Patricia Livingston Marshall

        omgosh, I have also had the pacemaker about 2 years ago n a year before that I had the mesh put in but they said it’s not the same mesh that they are showing on T.V. n I thought well . . . I really don’t have no choice seeing how it’s all hanging out n I can actually see it hanging n the Dr’s were all telling me it’s the worst they had ever seen n they had said it was from me having three 11 lb babies so had the surgery n that one seems to really have helped but then I got the pacemaker put in because 75 percent of my urine was staying in my bladder, so I had that done also n I have also been diagnoised with IC n bladder is also 75 percent damaged, so I have always had alot of pain on my left side, very extream n then after these other two surgeries I started having extream pain also on the other side, so the Dr said If I was was still tinkling on myself with cough,laugh,ect… n I was like yes, very much so he suggested the mesh to fix this other part of my vagina/bladder n I said to him, I have really been seeing alot of t.v. commercials about the mesh is it the same thing n again I was told no, it’s different n I thought well… it helped me with the other so I said yes, it would be nice not peeing on myself, so he fixed it, my complaint was to the Dr,nurses at the hospital was I’m having extream pain on my right side of my vagina/groin area n thats where it all started n he said it’s more than likely because of the way they have to position me when they put the sling in and it hurt so bad, so now I’m still having that same pain but not as bad but it’s a everyday thing n it goes into my right hip and into my belly n I had asked my Dr was it because they might of done something to my pacemaker during it n I’m just really pushed aside but I told my Dr I want my pacemaker out because I thought thats whats causing the problem n I have had it turned off every since the surgery n I have been going to the bathroom fine, so I asked my Dr to just take it out n he said lets give it a year but I’m really having bad pain now n I do not know how to approach my Dr, I know he’s known to be one of the best urologist in sc, so as of right now, not only do I live with the pain of IC which is horrific but now this other pain, I just did not come from a generation of questioning the Dr if he said it’s ok but wishing I had questioned it more now, any help or more information about the pacemaker or mesh would be welcomed, thank you so much for your time. Patricia

        Reply
        1. lavalinda (Post author)

          Patricia, the only thing I can offer you is to tell you the truth. Many women go from your State to UCLA because it is the only place where you can get the translabial ultrasound and doctors who can help you by removing it all. You have already been put through the ringer with surgeries you did not need. I will tell you what Dr. Raz tells all of us. “The mesh needs to come out”. Please do not have a partial removal because you will have more scar tissue and injuries. Even if they tell you that they can remove it, they can only remove part of it and you will still have pain and more surgeries. There are 3 doctors who can help you at UCLA. Two are women and you will get in sooner to see one of them. My blog has worked miracles for many women, but of course you have to wait in line. It is worth the wait. Read these two blogs. Do anything and everything to raise the money. If you have State Medicaid, you may have to pay for the first consult, but one woman told me that UCLA will take her medicaid card for her surgery and she will be reembursed later for the consult. Do everything you can to save yourself. Doctors will continue to tell you “It’s not the mesh” while is causes you long term damage and it can eventually lead to death.
          Money issues http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money/
          The doctors of UCLA. Please watch the video. http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery
          I Have written blogs on everything. All about my surgery, travelling out to UCLA and so much more. I did so to help women realize that we have to help ourselves.

          Reply
          1. Becca

            can the slings cause nausea and throwing up ? i had my sling put in the end of Aug 2012 and this past week ive been so very ill and whenever I stand up its like i have no bladder control at all and gravity takes over and I pee , even if i did not feel the need to go , if my bladder is even partially full it just runs down my legs , so embarrassing :(
            am going to the ER this morning as I am sure i am way past dehydrated

            Reply
            1. lavalinda (Post author)

              Becca yes it is quite common to have nausea. It is usually associated with infection. Please if there is any way, go to UCLA and get the help you need.

  4. Mary Cashdollar

    I had a bladder sling and my vaginal wall repaired about 41/2 years ago. I have pain in the pelvic area and UTI regularly. I had all my female organs removed. I just recently had a pap smear and it was abnormal. I have no cervix but they used something to repair the lining in my vaginal wall. I have to go back and they are going to look at my vaginal wall closer. I’m concerned, is this something that happens also with these mesh implants?

    Reply
    1. lavalinda (Post author)

      You need to become educated about the type of mesh used for repair so get your hospital records and read up. This has happened to many women and your only hope is to choose a doctor who will listen to you and answer your questions.

      Reply
  5. Rachel

    I came across your blog today and am so grateful! I am pregnant with my 4th child and have suffered from incontinence most of my life and it has been progressively worse after each child’s birth. I had been planning to get a sling after this last pregnancy but decided to do a little more research first. I do not take any medical interference lightly and always prefer more natural non-invasive methods. That said my incontinence is so terrible that it is a major problem in my daily life. To make matters worse I am allergic to urine pads and can’t use them. With 4 small children, going to use a bathroom in public is no easy task and I wet my pants SEVERAL times a day. It is awful. I thought the sling was my answer but now I am not so sure. Are there any safer alternatives?? Can you point me in another direction to help me? I can’t imagine going through these awful experiences you and these other women have had to endure, especially being a young mother raising small children, but at the same time I am desperate to fix this issue. I would greatly appreciate any advice you have!

    Reply
    1. lavalinda (Post author)

      You are going to have to learn and understand how they used to fix incontinence without any mesh or manmade anything. Women have contacted me who had it done many, many years ago and have suffered no ill effects. I will be sending you a private email and try to help you. I am doing research on this subject now and hope to get enough information to write a blog.

      Reply
  6. Paula Pope

    Lavalinda,
    Here is the beginning of an horrific story – so I’ll choose my words carefully to shorten the length of your reading requirements. Bladder sling 2004. Radical hysterectomy 2009 due to bleeding for over 6 months, bordering on hemorrhaging. Major complications July, 2011. Complications presented themselves at first as random bleeding/discharge. By Oct. 2011 I was in the emergency room with intense back/lower pelvic pain and bleeding where they “overruled” kidney stones. Continuous stress related bleeding and pain resulted in sling revision surgery in March of 2012. I went 12 glorious days without any bleeding but it resumed. I can no longer sit for long periods of time, walk, squat or lift without a pretty furious bleeding/pain episode to follow. Sex is out of the question due to pain. I now have a new pain – a “pulling” sensation in my right pubic bone area, one of the areas I remember as being the place where the sling was attached. I have an appt. with a specialist on sling revisions next week – but honestly, the physical and emotional toll this has taken on me are probably past restoration. I have many more details, as I’ve been concise in my relay. I would appreciate your input and any similar situations you’ve encountered.

    Reply
    1. lavalinda (Post author)

      Sling revisions do not work I am sad to say. I will contact you via private email.

      Reply
  7. Rebecca

    Hi, Sorry for the following novel, but I need some words of wisdom from anyone that has been thru this.

    I had a hysto and TVT sling put in in March 2011 when I was 39 (and very healthy). I had had 3 vaginal births, and had problems with prolapse. My gyno on the verge of retirement referred me to his partner who said that I needed the hysto and sling because everything was falling down. She determined that she would do the hysto and her urologist colleague would do the sling..one big surgery. About 4 hours after my surgery, I passed out. I had internal bleeding, rushed into surgery to find the bleeding, luckily by then it had stopped. While recovering in the hospital, I noticed it was very hard to urinate. They had me take a catheter home, I had to use it for a week. After that, I thought I was on the road to recovery…not so much. I had the urgency to urinate, but couldn’t go. My bladder would then get so full that I would wet my clothes. I finally figured out that if I hike my rear up in the air and contract my ab muscles, I could pee. I talked to the urologist about it, he said that the sling should loosen in time, if not, a 2nd surgery would be needed to loosen it.

    In July 2011 (about 3.5 months after the surgery), I had a DVT (blood clot in left leg). My family doc discovered it after I had unusual pain in my left leg. My urologist said “no way did the surgery have anything to do with that”, maybe, but I’ve never had clotting issues before in my 39 years. I then decided to see a specialist at a very reputable clinic here in the U.S. He said that I should have the sling cut, but can’t do anything until I’m off the blood thinners from the DVT.

    In Jan of 2012, I went off the blood thinners and contacted this specialist. They brought me in, did a urodynamic study and decided that cutting won’t help, I just need to self-catheterize for the rest of my life, several times a day. I contacted my gyno (he didn’t do my surgery, his partner did), he said that didn’t sound right at all, and told me to contact a different reputable clinic. So, I contacted this other specialist. He saw me and said that I have to have this 2nd surgery to cut the sling, or else my bladder will give out due to all the straining. I go in this Tuesday.

    On top of all this, I still have major pain down my left side. It used to be my leg, now it is my arm as well. I saw 2 different neurologists, had several tests done. They can’t find anything wrong. I feel so confused and upset that I ever had this surgery in the first place. It has done nothing but caused pain and suffering, on top of all the work I have had to miss. If anyone has had this 2nd surgery to “loosen” the sling, please write back! Thank you.

    Reply
    1. lavalinda (Post author)

      Oh my God! You have to go to Dr Raz at UCLA. Your health will only deteriorate if you do not get the mesh sling removed. I will send you a personal email. I had that second surgery to cut the sling and I still had to self cathe until I got my bladder working. It took weeks of agonizing bladder spasms and now my bladder still does not work the way it should. I am having removal by Dr Raz in Oct this year. I looked up slings and read the specs for the patent. You can do that with any sling by searching for the name and patent. It may take a bit, but what I discovered is that these slings should not be stretched or cut. So they leave us in terrible shape. The manufacturers are at fault because they should never make anything that cannot be removed and causes such terrible injuries when it is. Doctors should stand up and say this is not right and take new training to learn how to do it the way they used to. I know many women who had a sling put in 30 to 40 years ago before mesh without any complications. One is my sister. It was done using their own fascia or the Burch method.

      Reply
  8. Crissy

    I had the Monarch Bladder sling put in when I had a partial hysterectomy 3 wks ago. Does anyone have information on this mesh? My doctor claims he has performed over 3000 with no issues over the past 16 yrs that he has been using it. Sp far so good for me…but, I am very scared!

    Reply
    1. lavalinda (Post author)

      I hope you do okay and remain in good health, but yes I know women who have terrible complications from this sling and it too is under scrutiny. Look up complications for slings made by AMS, American Medical Ststems. I am going to send you an email with the story of one such woman whose life has been put on hold and may never be the same because of this sling. Did your doctor share the warnings and the recommendation by the FDA? I doubt it. This is why I have this blog. This is why I live in pain and yet try to help. You have a right to be scared because you should have been warned and told of these complications.

      Reply
  9. Crissy

    No, he did not… Makes me mad! I was adamant that I did NOT want the sling unless absolutely necessary….he felt it absolutely necessary after he performed the partial hysterectomy with the Da Vinci Robot and tested my bladder for incontinence while I was under.

    Reply
    1. lavalinda (Post author)

      He could have done the Burch method to hold your bladder up or made a sling using your own fascia IF he knew how. Problem is most surgeons do not have this training so will tell you it isn’t as strong as mesh. Of course it is. My own sister had it done 36 years ago never a day problem and another lady told me hers was done 40 years ago using this method and never had a problem. So do not believe what is told to you. Question, question, question BEFORE sugery. Then make sure you wishes will be met.

      Reply
    2. Marladd

      I’ve had a partial just. in 2004 and I’ve suffered from pain while having sex. lower. back pain. pain when I cough. I don’t remember if they put mesh in or not but I’ve had all the symptoms. I’m goin to get the surgery reports. Thankx ladies and god bless u all

      Reply
      1. lavalinda (Post author)

        They put them in much earlier than 2004 and you are doing the right thing getting your hospital records. Apparently they began putting them in twenty years ago. The doctor will not keep the type of sling and number he installed. The hospital where you had the surgery will. You definitely have all the symptoms.

        Reply
  10. Michelle

    Is it possible that I might have had a mesh sling or something similar put in my body after my hysterectomy in 2007? I am asking because exactly a year later after surgery, I started having this excrutiating stabbing pain in my body somewhere near where my uterus used to be. I also have developed pain when urinating in recent years. I have to go to pain management from my OB/GYN every month and take pain pills. Nothing is showing up on the scans, and my GYN thinks that it could be excess scar tissue from the hysterectomy. I asked him if a mesh sling was put into me when I had my hysterectomy, and he said that he did not know. Do they automatically implant those things in us? Maybe I should try to get a copy of my surgery report to see what was done. Anyone have an advice or suggestions? I do know that the pain is getting worse. Even the pain medicine does not stop it…it only takes the edge off of it.

    Reply
    1. lavalinda (Post author)

      It is quite probable you did. My suggestion is that you go to the hospital where you had it done and get the operative report and the nursing notes. The doctor does not keep that information so it is a waste of time asking. The implant name and number will be on them. Do it soon because what you are saying is very common. You need to get it removed as soon as possible. Normal tests, pain management are a waste of time. It is making you ill and can cause extreme symptoms if left in for long. It is an infection deep inside you and can be dangerous. Get an appointment with Dr Raz at UCLA. He removes long term slings safely.

      Reply
      1. Norma

        I did not know this blog was here. In 1995 I was suppose to have a bladder tact, my Dr told me I had to have a hysterectomy, when I woke up she told me she put that mesh inside of me to pull my stuff up. When I got home my nightmare started. I hope I get a response back. Now they have lawyers to help these women that had these things put in them, well guess what? I can’t get anything because it was long ago. But I’m still in pain just like the other women that has had it done recently. I am really hurt over this. I have been suffering for years and it seems like it means nothing to the ones who did this. I didn’t ask for this, but I am glad that their is someone who know how I feel. Please respond

        Reply
        1. lavalinda (Post author)

          Norma I have learned from other women who had mesh put in them a long time ago that it was used far longer than any FDA approval. You can fight back in other ways. Turn your anger into doing something that makes sure this does not continue. This is what some of us do to change this. The FDA still does not believe that these slings are causing enough damage to our bodies to reclassify this as high risk. Send them what you think and join the army of women who are saying enough is enough. http://www.regulations.gov/#!documentDetail;D=FDA-2014-N-0297-0001 Norma you can also tell them this was done without your knowledge and approval long before they approved it.

          Reply
  11. Crissy

    It could also be adhesions from the abdominal surgery. Adhesions are scar tissue that adheres to other organs and causes excrutiating pain. This happened to a friend of mine.

    Reply
  12. cheryl stafford

    i just had a complete hysterectomy and mesh sling done June 25 2012–i had heard about the mesh problems so i voiced my concerns to my doctor- she told me that she would be using a different one-a smaller one and i should have no problems—one month out of surgery and i have had a non stop severe bladder infection—i have NEVER had a bladder infection in 50+ years!! i feel “ill” –am up a lot during the night because of the infection–i need to know if i can have this mesh removed–would rather wear pads the rest of my life than suffer through these infections!! feel like i have been misled in regards to the safety of the mesh slings –would NEVER have done this if i had known about the complications!

    Reply
    1. lavalinda (Post author)

      On the first of May this year 2012 I wrote a blog to help women with this problem. Please read it.

      Reply
    2. missy

      i too have had CHRONIC infections (about every 10-14 days). I had surgery in December of 2011. I want the sling removed. My doctor has told me that I may need to stay on antibiotics for the rest of my life. And he thinks that is acceptable and a solution! I am in search of the best Dr. for removal and corrective surgery. If anyone has refferals or suggestions please contact me.

      Reply
      1. lavalinda (Post author)

        Go to any of the doctors at UCLA. Dr Raz, Dr Kim or Dr Rodriguez. I was told the same thing and I began taking marshmallow root herb and no anitibiotics for 2 years before removal surgery. I had full removal surgery less than 4 weeks ago. Read all three of these blogs.
        http://teapapers.com/bladdersling/2012/10/ucla-tests-before-mesh-removal-surgery
        http://teapapers.com/bladdersling/2012/10/ucla-my-bladder-sling-removal-surgery
        http://teapapers.com/bladdersling/2012/10/mesh-removal-ucla-travelling-home
        These are the surgeons
        http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery

        Reply
  13. Jen

    Ladies, I’m so sorry to hear of all of your heartache and pain! Maybe your feedback can help. I have a stress incontinence only, nothing else, however it is becoming a major issue. The dr’s are planning to insert a : tension-free transvaginal (TVT) sling that treats urinary stress incontinence by positioning a polypropylene mesh tape underneath the urethra to help prevent leakage during stress (coughing, sneezing etc) is this the surgery you all are referring to?

    Reply
    1. lavalinda (Post author)

      Yes it is. Mine was a TVT done in a top teaching hospital in down town Houston Texas, by a 5 star surgeon. I would rethink this surgery for sure. Read the comments left here on every blog.

      Reply
  14. Dawn

    lavalinda, In 2008 had a hesterctomy and bladder lift at same time they put sling , I had a lot of compacations since having to have a foley for three weeks, when they take t out i was back in er with another foley until i could see Dr, within a week , well 4 1/2yrs latter woke up coulnd’t urinate went to er was put another foley seen Dr. in three days ran test and told me that my bladder was no longer working because the sling was put to tight it train my bladder muscle not to work he tried different med that he would give to his male patients but either was working or made me sick , so he told me that i would have to self void for the rest of my life .. my qustion is my left side is hurting just about all the time and intercourse is way to painfull do you think the sling can be causing all this pain i have contacted my uro its been a week because of my side he said i had no bladder infection but that all he said still waiting to see him ,

    Reply
    1. lavalinda (Post author)

      It is so sad for me to read that yet another woman can no longer use her bladder again. It has made me so angry, so many times that I cannot count. There is a blog you MUST read, that I wrote on July 23rd 2012 about Clostridium infections which will not show up as a normal infection in any test. The infection is what has been described as deep tissue and it can be life threatening. The infection starts in the mesh itself. You must tell your doctor this and get the appropriate test done for this infection. If there is any way you can get to Dr Raz at UCLA, you may stand a chance of your life improving.

      Reply
  15. Elizabeth

    I just went to the Dr. yesterday and they want to do a hysterectomy within the next 2-3 weeks. They want to use a sling to hold mybladder in place as well as other “organs” near my spine which is causing my back pain. They assured me that these slings are nothing like the ones Ive seen in he commercials in law suits. I have been reading all night & day and havent read anything good . I am trying to figure out my alternitives before I agree to it. I was diagnosed with uterine prolapse and have suffered with that for at least a year. I am only 46 years old and just want the pain to go away but not to be replaced with a new pain…Please help me if you can!!!

    Reply
    1. Robin Robbins

      I just read your email about getting a mesh-as many others say DO NOT DO IT! I am the one who has had a mesh/sling for almost 12 yrs and will get it out in about 2 weeks! I hurt immediately and leaked worse than ever and ALWAYS plus have NEVER been able to completely empty my bladder. One yr later after many nut and NAZI like treatments from the first Dr. we paid for a 2nd opinion.

      The 2nd doctor was recommended to me by a Female Physical Therapist who if I had met her FIRST I am SURE I would not have had to had any mesh/slings EVER as they thought or perhaps even cycstocele repairs or rectoceles. I believe if ANYONE gets to her before having such a surgery soon enough they will get help and if too late she will guide you in the next best direction. She is professor at a college now and one of the few physical therapists in the country who SPECIALIZES in women’s pelvic areas and does physical therapy inside and out of you plus exercises she shows you that WILL help you.

      I have a sister in law not much older than us who uses a pessary. I asked about that once and they said it was for old women in old folks homes! My sister in law has used one for YEARS and said it works just fine! She takes it in and out herself! I talked to an older lady the other day who had her bladder “tacked” up NO MESH OR SLINGS many years ago before they were invented and it has worked just fine many many years! If they could do that then why not now? I cannot give you the PT name online but feel if you would just contact her even out of state she KNOWS of the ones who are in that line of work across the U.S. There needs to be more.

      She made more sense than ANYONE all those years ago and made out a better report than any doctor and is the thing I am sure that got me my disability from SS! I went to her again before finding Dr. Raz and she gave me the name of a Dr. who knew all about pudendal neuralgia it IS my pudendal nerve that is being pressed on and damaged all these yrs because when I got 3 different shots at 3 different time INTO THOSE nerves! I did NOT hurt for about 1 hr each time. He then said that meant I had to go to a Dr. who releases or SEVERES nerves in you back! I said NO TO that and the P.T. agreed and DID NOT recommend it. Even though I cannot give you her name online if you can get my email from Linda I will be happy to by email. I DO NOT do Facebook. Please keep looking into ALL the alternatives for the mesh. Blessings, Robin

      Reply
  16. lavalinda (Post author)

    Please, please think about this before you do it. You should be aware that there are nine companies producing many brands and ALL are under scrutiny because every one of them has women who are very ill and in pain because of their slings. I have written a blog here on alternatives to slings, but you have to find the RIGHT surgeon with experience to help you. If your situation is not dire, take your time to learn and get the facts BEFORE you have the hysterectomy. I will send you an email with the direct link. Don’t rush! You do not want to live the life that so many of us live. The lady who helps me with this blog is also 46 years old and a sufferer. She is trying to make it through until her January removal surgery with Dr. Raz. She has to work to keep her insurance and take care of her children. no one wants this for you. IIf your doctor says, go to the Internet to find out if you want to have a sling put into your body, Find another who will take you through all alternatives and is willing to send you to someone else if he/she does not do what you decided to do.

    Reply
  17. debc

    Hi Elizabeth,

    I had a sling last Feb., for SUI. I thought the adds I saw on TV from lawyers must be about older kinds of mesh or products no longer being used too. Unfortunately, I have been having complications since I had my surgery, mostly extreme pain in the groin/leg area. Now, I can literally barely walk – even with constant pain meds and a crutch.

    After researching this on my own, and finding Linda’s blog here, I learned that the sling they used in me IS made by one of the companies being sued, but it seems that there are reports from women, recent reports, from many different kinds of mesh products. In last years FDA warning, they do not specify certain kinds of mesh where they say complications are “not rare”. Did your doctor know about and/or tell you about the FDA report from July 2011? (Read that here: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm262752.htm) .

    So, the FDA says complications are “not rare”. I have heard reports that complications are as high as 30%, other reports say 15%… and some doctors say, “hardly any”.. but, regardless of what the percentage is, something to really consider is just how serious those complications are if you do have them… AND just how little most doctors know about dealing with those complications. Mesh is not meant to be removed and I was even told it wasn’t possible to remove it all, only to do a partial removal. Which, in my case (and many others), is not helpful. That is why I’m now waiting to go all the way across the country from me, to have the whole sling removed by Dr. Raz in CA. Waiting because he’s booked solid until then. Trust me, if I could have this removed now, I would.

    Linda has a good post here about alternatives to using mesh too (http://teapapers.com/bladdersling/2012/07/non-mesh-bladder-repair-surgery/) Please try to find a doctor who is willing to try something other than mesh… maybe knows how to do things “the old fashion way” by using your own tissues or something. I would not recommend MESH to anyone after what I’ve been through, and what I’ve learned about MESH in the last few months..

    Deb

    Reply
  18. debc
  19. Yvonne

    I had a Hysterectomy and bladder sling done on 6/25/12 and since the surgery ive had one UTI and bowel issues.I was given a Anti biotic@ the hospital and broke out in Hives. Went to my doctor for a follow up and was told i was healing slow. since then sex is very painful and me and my husband Decided not to have sex at this time. its 15 weeks now and i have a lot of pelvic pain. ive been back to work since the end of aug and still have pain and now have dark purple Bruises my stomach. I REALLY HOPE THIS PASSES OVER BUT READING EVERYONES POST I DONT THINK IT WILL. I cry a lot because my body isnt back to normal after all this time.

    Reply
    1. lavalinda (Post author)

      I only have a couple of days left before I head out for mesh removal at UCLA. I have a lovely friend in the medical field I am going to ask for you, because dark purple bruises do not sound right at all. I will ask her to send you a note.

      Reply
      1. Yvonne

        Thank you Linda… i will wait on your reply back.. i feel so bad. my boss sent me home today due to me being in pain. I didnt want to call my doctor due to all the other issues ive had and i continue to keep complaining.

        Reply
      2. Yvonne

        Thank you Linda… i will wait on your reply back.. i feel so bad. my boss sent me home today due to me being in pain. I didnt want to call my doctor due to all the other issues ive had and i continue to keep complaining. I hope ur surgery goes well hun.. and it clears up all issues…

        Reply
        1. lavalinda (Post author)

          This came back from my friend.
          I’m not sure what it is- it could also be infection. But the doctor definitely needs to be made aware of it!
          Any other symptoms? Bleeding? Fever? Urinary/bowel symptoms? She needs to call the office and leave a message with the nurse. She needs to make an appt to see the Dr. sooner rather than later.

          Reply
      3. Yvonne

        Thank you so much. I’m calling the doctor in a few a will leave a msg… I Appreciate all that you have done. And i hope a pray your removal is successful….

        Reply
  20. SONYA MATHENY

    COMMENT- please do not have any mesh put in your body. I HAVE HAD 43 SURGERIES , THE DRS. I HAVE BEEN TO HAVE PUT SO MANY DIFFERENT MESH PRODUCTS IN ME , I FEEL LIKE I AM GOING TO DIE I AM IN SO MUCH PAIN AND HAVE HAD SO MANY INFECTIONS. I DO NOT KNOW HOW MUCH MORE I CAN STAND . GOD IN HEAVEN HAS HAD TO KEEP ME LIVING, SOMETIMESIT SEEMS IMPOSSIBLE TO GO ON. PLEASE DO NOT LET A DR.PUT ANY MESH IN YOUR BODY.

    Reply
    1. lavalinda (Post author)

      Oh my God! I do know of a woman who has had 20 surgeries so far. This is an outrage. I will send you a private email.

      Reply
    2. Angela Sackett

      Sonya….I will keep you in my prayers! God bless you sweetie! My heart aches for you…just makes me sick! Thanks for sharing!

      Reply
    3. Sue

      Sonya, you have got to hang in there. I know how you feel. It seems we are on this unending hamster wheel of lies, pain, and more lies, and then more pain. I have a firm belief that the righteous will win, there has got to be some good in this. I just hope that women who are going to have surgery will think twice about having any kind of mesh in them. It is a travesty of what we have had to go through. Good luck and I will keep you in my prayers.

      Reply
  21. Ronna Newsom

    I had a mesh sling put in this past August. I went home with a catheter because I couldn’t pee, then after having it out, I couldn’t pee again. It was about 3 weeks following surgery that I realized the reason why I couldn’t is because I am “opposite” now. So, if I “clinch” or “hold it” (like a kegel) then pee squirts out. But if I “push” or bare down like I used to when I would pee then nothing comes out. It’s actually very confusing for my brain and body and I have to stop in my tracks when I get the urge so I remember to “push” rather than hold it. Anyone hear of this? I’m seeing a physical therapist now to help stretch the muscles in that area around all the scar tissue from several surgeries & full hysterectomy 15 plus years ago. I’m only 48 now.

    Reply
    1. lavalinda (Post author)

      Please look into getting it out soon because I have heard of this and if you don’t, your kidneys will be affected. Look at the right side and you will see information about the doctors at UCLA. I do feel for you. Physical therapists who know about mesh issues in women have helped one or two women, but most tell me they became much worse and had to increase pain pils. Please say no if you feel pain.

      Reply
  22. Julie

    Thank you for having this blog as a resource for women! I’m trying to determine what to do….here’s my story: cystocele with a sling and rectocele in 2008. Repeat rectocele in 2010. Had severe episodes of pain that started about 9 months post procedure. Episodes would be awful pain for a few hours, often during the night and then a dull pain for a few weeks and then it would end. MD thought it was a fistula, referring MD couldn’t find one. (Saw him when it wasn’t acting up.) Episodes lasted on/off for about 8 months and then subsided. During that time, sex became weird. I couldn’t feel anything. Met with a gyno yesterday who specializes in mesh removal. He said the bladder sling isn’t holding everything up and the bladder is prolapsed again. Because there isn’t pain right now, he’s said to leave the mesh and not remove it. He is recommending a partial hysterectomy, leaving in ovaries and cervix and to tie up the bladder in the correct place. He will use mesh to support the walls where the uterus was, but, said this mesh is different than bladder mesh. I’m so leary of another procedure, yet, I’m 41 and want my life back! I’m not in severe pain anymore like so many women, but, I feel like I’m wide open down there, which is probably due to the pressure of the bladder. Any opinions, suggestions, etc are much appreciated! Thank you again for having this blog!!!

    Reply
    1. lavalinda (Post author)

      I had cmputer difficulties and could not reply sooner. Be well aware that what they say they will do is not what needs to be done. Don’t play around. Many women have been injured by the wrong doctor. I know because I speak to them every day. Don’t take chances. Go to UCLA!

      Reply
    2. lavalinda (Post author)

      Julie, this is a terrible solution, one I have heard before. Mesh upon mesh is NOT the answer. You had complications from the word go and you need to go out to UCLA and have a translabial ultrasound done to find out what happened the first time BEFORE anything else is done to cause you even more complications. Specializing in mesh removal does not mean a doctor is any good at it. They label themselves with the current situation of women seeking help. Only patients can do the labeling but I am sure he won’t be sharing them with you. The only way you can find out what the results are is to go to his/her waiting room and shout out “Anyone here had mesh removal by this doctor”. Of course you will quickly be thrown out the door.

      Reply
  23. Angela Sackett

    Julie…..your story is familiar and if I had a word for what you are describing that they want to do for you it would be…NO!,!, Linda is right…you don’t know what they are actually going to do to you while you are under. I have had 2 different repair kits put in and I’m going to tell you that it alone has created a mess that even Dr. Raz is unsure of. He is the best of the best! Don’t even mess around with any other doctors!

    Reply
  24. andrew clay

    I am wondering if this mesh could cause low back pain.
    My wife had something done to her bladder, I don’t remember what. We have been to many different doctors and have had many different scans and injections with no results. I know she had the bladder issue resolved before her back pain but she has been suffering since 2009. I just don’t know what to do.

    Reply
    1. lavalinda (Post author)

      Yes it can. You see many of us have had exactly that because the sling will not let her urinate properly. She needs to get her records from the hospital where the surgery was performed then get back with me. I will email you my phone number. I wrote a blog with where to find that information. Don’t buy all the records, only the ones stated on this blog and tell her that the doctor will not keep any of that information. http://teapapers.com/bladdersling/2011/01/report-to-the-fda

      Reply
  25. Lindsay

    I also had a hysterectomy in 2007 ihad the mesh used in my surgery. About a year or so later,i have been in excruciating pain in my pelvis.i also get migraines,pain in my hips. Every time i have gone to the dr. They tell me that cant find anything to explain why im hurting.i have a very high tollerence for pain. Every dr. I see seems to treat me like im crazy or just there for pain meds.so thanks for this very informative info im going to go to my obgyn n insist the take another look…

    Reply
    1. lavalinda (Post author)

      Lindsay, please read my answer to Patricia. Read the blogs I gave the links. Do everything to fight your way back. I began this blog because I was having so much pain in my right side, hips, back, groin, leg, thigh and pelvis. I was ignored. Others reached out to me and told me they had the same and went to UCLA. They saved me from a life of surgery after surgery. I am still mesh injured but I am so much better. Please fight to get the help you need. Stop wasting energy trying to get doctors to believe you. From my experience and thousands of other women I can tell you it will not happen. Finding compassionate doctors is like hunting a needle in a haystack. They are rare. Do what you can to live a better life.

      Reply
  26. Reesea Vargas

    The stories I have read here are horrendous! How dare the medical profession to this to women…Shame on them. I’m sorry and truly feel for each of you. I pray for your future, your health, and your comfort. I don’t want to get too excited just yet, but I think I have just diagnosed myself after SO many doctors have not. It is Saturday so I will have to wait until Monday, contact the hospital where my hysterectomy was performed to be certain. However, can you advise while I wait???…??? Were they using any types of sling/mesh in 2004? Would you always be aware they were using one (especially if you were the type person who would rather know as little as possibly about the procedure, wouldn’t ask questions, and honestly wouldn’t listen if they read it to you…just sign)? Would it absolutely be on the hospital records? Thanks for any help available and, again, many prayers to you all.

    Reply
    1. lavalinda (Post author)

      Reesea, yes they were and your situation is far more common than you realize. Mesh slings have been used longer than the approval by the FDA. Yes, you will find it in your hospital records when the surgery was performed. I have written where to look for that information on this blog. http://teapapers.com/bladdersling/2011/01/report-to-the-fda I doubt if you will hear the words “It must be the sling”. Read what I wrote to Patricia.

      Reply
  27. Mom2001

    Hi, I just came across this blog…here’s my story! I have had 5 children, then I started having problems with my colon and ended up having Rectal Prolapse. Along with Rectal Prolapse my Pelvic Floor had Collapsed. They decided surgery was a must and I was in so much pain I was relieved to have it sceduled. During the surgery they needed to remove about a foot of my colon, and redue it. This was a year ago and the details are a little fuzzy but I kow that they said I had a lot of mesh holding everything all together, a complete hysterectomy, and a Mesh Bladder Sling. The only noticeable things right off the bat were it took me forever to pee and sometime hurt, or felt like something would be hit during sex. I however have ignored these…I am one to put things off and not go to the doctor unless it is a must. Well the last month in an half I can no longer have a Bowel Momement on my own???? I take a laxative and 13 hours later I can have one, but without a laxative I can not pass stool. Is something wrong with my Colon..Is it blocked, Kinked??? I have no idea, called my specialist about 3 weeks ago and he can see me on March 5th…which to me is quite a wait. Now I have begun havng severe lower left back pain, I shoots into my hip. If I move a way too fast it about drops me. Sometimes it’s fine, and then it just hits, sitting, standing, it really does not matter, but it hurts the wost when I lean to my left side??? To me, I would thing the Colon/ Bowel Problems would be related. It kinda freaked me out, it hurt so bad and I call my Colon/Rectal Doctor…he said is sounds like a pulled muscle and not anything related to my surgeries. Have any of you had anything like this happen? I feel like the docors I am seeing (Urgent Care, Phone Calls, Ect.) All think Im crazy. I would like some opinons and if any of you have had these issues I would love to hear what your doctor said, test you had done, what you did. I feel like at my appointment in 3 weeks I will get much farther If I kinda know this has happened to somelse and maybe demand some test you’all had that were sucessful in helping yo figure out the issue!!! Thanks for listening to me rant :)

    Reply
    1. lavalinda (Post author)

      I have no doubt it is a mesh blockage as this is very common and very serious. You must get help soon. Dr. Raz told another woman going through the same thing to use an enema so that it clears because this is not good. You are not ranting by the way, just worried and that is what this blog is for. Please go to this blog and you will find doctors you can trust. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey All the symptoms you mention are mesh symptoms. You are not crazy. You are right. I will send you an email. We have all had some or all of these symtoms and you need to get to one of these doctors SOON. You have to raise your children and see your grand children. You can read what tests they do at UCLA and others are a waste of time and money. I will contact you.

      Reply
    2. Chantale

      oh my gosh, I have been reading and it is what I have been going through for the last 5 months since my hysterectomy and bladder sling. I am a healthy 40 year old mother of 2 young children. I have went home with a foley catheter. Had it taken out and ended up in the er unable to pee. I had to self catheter for weeks and now have severe leg and groin pain. I have trouble urinating during the night and early morning. My stream is slow and difficult during the day. I have painful spasms often when urinating. Is this my new normal? I had an xray of my hip because of pain in my hip. leg and groin. I am hobbling around. All of a sudden a sharp pain makes me scream out in pain. My children are worried as am I. I used to work out at least 3 times a week and have not been able to for the last week. I am so upset!!

      Reply
      1. lavalinda (Post author)

        Chantale, everything that you say here is what happened to me except I could not pee at all and after nine weeks, my doctor finally cut a small piece out of the center of the sling. That was the second surgery I had. Then I had to self cath for weeks to get my bladder working again and then had the same pain in my groin, hip and leg like you. When one of those sharp pains hit, I landed on the floor with two cracked bones in my left wrist. More money, a cast for 8 weeks and my doctor still did not believe me. Plus I was never able to pee properly again until after it was removed. Than God I had begun this blog for it was other women who told me who to go to where it could be removed safely. I understand you are upset and angry. That will happen many times, but please make an appointment with the right doctors who will help you. I am going to send you a private email and you can contact me and a small group of women who will be there for support. Please read this blog and see if you identify with this woman. http://teapapers.com/bladdersling/2013/02/living-in-mesh-hell

        Reply
  28. Mom2001

    Thanks so much for all the information Linda!!! I really appreciated it, Im calling my doctor (The Rectal/Colon Specialist) today!! Im going to try really hard to make them push my appointment date up, so I can get in!!!! All my doctors are 2 1/2 hours away, which makes it hard to just go pop in!! Again, thanks for getting back to me with all the info and for your support~ I will let you know how it goes!!!

    Reply
  29. Sherry Burrichter

    My stomach is bloated real big, I look like Im 7 months preg., my lower back hurts and travels up my spine, my lower right groin area hurts and I feel a pressure and pain by my ribs, I had a bladder pin up with mesh, and I feel a heaviness when I urinate and feels like I cant get it out.. my dr. has ran several test and nothing has shown up… Im hurting and dont know what to do.

    Reply
    1. lavalinda (Post author)

      The symptoms you are talking about is because there is an infection in the mesh. Read the link above ‘Mesh is a journey’ and make the appointment at UCLA. It will only get much worse. The tests your doctor ran will not reveal anything. Please do what you can as soon as possible.

      Reply
  30. lavalinda (Post author)

    Mom 2001, Please be aware that not every specialist is good at their job. One woman just saw Dr. Raz after one told her he could remove most of her bowel and fix her with more mesh. Dr. Raz was shocked. Please read this blog. http://teapapers.com/bladdersling/2013/02/surviving-mesh-the-will-to-live

    Reply
  31. Missy Doyle

    Good God the worst thing i ever did was allow a doctor (i use the term losely) to install the mesh sling ! My bladder fell after a total hysterectomy . My family doc had suggested it as a solution to my problem of a leaky bladder. So i went to a uroilogist he said oh this will fix your problem ! wonderful !! the very next morning i woke to blisters of puss and infection . Icould not even get out of the bed ! there was a tube in my stomach thats how i used the bathroom now this is to remain in you for 2 maybe 3 days at the most . well this doctor left it in me for 1 month yes thats right 1 f n month ! I had bladder and uti infections all the time. for 1 year solid i had uti and bladder problems. ive had 2 reconstrution surgerys the pain is bad at times unbearable ! The bone anchors have tried to be removed scraping the bone and no luck . there are supposed to be 2 but there are three the doctor lied about that (dont know why). i wake up everyday in pain. first thing i do is take pain meds so i can get up and maybe clean my house today! it will never get better ill be in pain the rest of my life!! It was supposed to fix my problem lol it has tore my life up! what did i do to deserve this…. i took the word of a doctor and got the mesh sling. I would gladly return to the day of leaky bladder over the life of pain and not being able to lift my grandkids all because of a product they knew was faulty and didnt want to recall it and loose money. i will pay for this the rest of my life in more ways than one!!!!!!!!!

    Reply
    1. lavalinda (Post author)

      Missy, your story is horrendous like so many others here. I bagan writing because of my own situation and would never have believed that so many women lived in agony. Mesh slings are the biggest shame on the medical world.

      Reply
    2. Angels123

      Missy,
      It sounds like you need better pain management. Do you have a pain management doctor that you can work with? Mine has saved me from doing things out of pain that I would have regretted many times. The value of a good and I emphasize “good” pain management doctor is invaluable for all of us affected by this mesh. Hopefully you have someone in that specialty to work with. Your story is very familiar and those of us whose lives have been degenerated to this kind of life can relate. I have found it takes a team to manage all the problems that come from mesh implants. Hopefully you have such a team to get you through this. Love to you!

      Reply
  32. Tknight123

    I am reading all about a surgery that i am being told i must have. I am a 39 yr old mom of 4 with 2 still at home. I have a host of medical issues and was diagnosed with a stage 3 prolapse of the bladder, my doctor told me i need to see a uro/gyno wich for me is a 3 hr ride from where i live. I have my appointment in Tampa on 2/21/13 and believe i will be told to have a hystorectomy and bladder sling becaue both organs are protruding. I AM SCARRED because of all the problems women have reported on here. Is there any advice before my appointment or any specific questions i need to ask of my dr? any advice would be apprechiated

    Reply
    1. lavalinda (Post author)

      I have just finished writing to a thirty eight year old mother of three who had exactly that done and she is in serious trouble from her bladder sling mesh. I do not know who you are going to but you need someone who can repair you using your own tissue. I will be having this done myself in April at UCLA and I am working on a blog about it. You need someone who has had great experience in doing it and won’t leave you a big mess. I am going to email you direct.

      Reply
  33. heather

    hi lavalinda, please help me and please excuse my messy post due to the fact im crying uncontrollably after reading all of these posts and have a glimpse of my horrific future! i am 35 yrs old and have lupus and just had the sling and hysterectomy done at lomalinda university 2weeks ago. i was able to come home without a catheter but im suddenly having severe shooting pains and wasnt sure if it was normal to last this “long’ after surgery. i have been battling medi-cal for the last three years just to get approved to be referred to lomalinda because my incontinence was so bad. and they assured me that the sling would get me out of diapers and wasnt the kind on t.v. I have been out of work already due to the incontinence and my degenerative disc and few vertebraes slipped behind each other due to the lupus and if not for my parents help my two daughters and i would be homeless because i have no money or way of getting back into the work force but have gotten the run around with medi-cal and disability so still nothing and i thought that if i could just fix the incontinence i could return to work and maybe just deal with back pain for as long as possible, but now im FREAKING OUT!!!! i cant take much more!!! please help me and tell me what i should do and how to go about it or who to talk to and what to ask. i have my post surgery follow up appt next week at lomalinda but not even sure i can wait that long with this cramping and shooting pain kind of where my ovaries and uterus use to be. also i can feel the sling when i pee it feels like i have to slowly painfully push my urine out a strainer?? and my right arm still hurts which they said was due to the anasthesia and would go away after few days! anyway please give me hope so i can go on for my two angels they still need me im mom and dad to them and my parents are getting old and i need to get well enuff to make some money again or find away to get approved for disability help and also get healthy to drive them around and take care of them!

    Reply
    1. lavalinda (Post author)

      Heather, this is why I keep battling to save women like you who NEVER should have a mesh sling because of all your other issues, yet alone because slings are doing awful things to healthy women such as me and thousands of others. I am so angry this happens in a State where you could have gone and had help and a sling made from your own tissues by doctors who know what they are doing at UCLA Urologists. This is an outrage that this still goes on. I am going to make contact with you privately but I wanted to answer here in case any woman finds this who may be having a hysterectomy because there are people who can do this surgery WITHOUT mesh. Go to this link and it will give you doctors who can do a sling without mesh, do whatever else is needed and it will also take you to links to show my journey through removal. And I am not done yet. I will have another surgery at UCLA in April and I will travel from Texas to do it. Why because I don’t trust anyone else.
      You must take charge of your own life and say “NO TO MESH!” Read here. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey I can’t save every woman out there but some of you can save yourself. If you think travelling across the country will cost you too much money now or it is an inconvenience, you don’t have a clue about what a mesh sling will cost you from now on if they put it into you. Your family. Your home and your livelihood will go down. That is the legacy of mesh. Don’t believe doctors who lie and says they don’t use the mesh of lawsuits. Believe me, they are all being sued. EVERY SINGLE COMPANY WHO MAKES THESE SLINGS. This must stop and the first step to stopping it is with women who will have hysterectomies from now on. Read this blog about a young woman, 38 years old who has been dealing with this for 10 years because of a mesh sling, which became two mesh slings when the first one had screwed her up. TEN YEARS! This is not a joke. This is fact. http://teapapers.com/bladdersling/2013/02/living-in-mesh-hell Believe none of these doctors who tell you they have not seen any problems with THEIR patients. Or that they don’t use that type of mesh. Walk away. Spend money now and save your future and that of your children. I feel terrible for you Heather. This should never happen and yet it does every day all over the world.

      Reply
      1. Ramona

        Lavalinda. I had a hysto years ago but I still got the awful mesh and it was one Roger that biggest mistake in my. Life, can’t wait to have it removed. I’m sorry that all you other women are going through this.

        Reply
        1. lavalinda (Post author)

          I hope Ramona that you have made headway in having it removed by a doctor who can do it. No one who says he/she can. and only offers a partial removal.

          Reply
  34. heather

    thank you for responding so quickly! I was worried you might not be able to read my post due to your surgery. I send you my prayers for your continued battle aswell! and I look forward to hearing from you privately and am sooo greatful for any help you might be able to offer me! God bless you and your family for not just keeping this info to yourself and actually caring for others! I too will continue to spread the word as loudly and often as I can to save other women from this neglect and abuse and disgusting injustice! please dont forget about me i hope and pray that i hear from you as soon as your very busy and very impotant schedule permits! thank you for just even taking the time to care and listen! you are a true angel from God serving a huge purpose!

    Reply
    1. lavalinda (Post author)

      I did send you a private email and because of you, I wrote a blog this morning. http://teapapers.com/bladdersling/2013/02/dear-ladies-of-the-view/

      Reply
  35. lavalinda (Post author)

    Heather I sent Dr. Raz an email because I was not sure what to tell you. The pain did not sound normal because it is shooting pains, and that tells me something is not quite right. This was his answer.
    “Tell the patient to call the office for an appointment.
    Shlomo Raz M.D. Professor of Urology

    Reply
  36. LeeAnn

    After reading ALL of this I am wondering if there are any success stories? I know a few people who have had it done and are fine. I had the procedure done last Monday. All the symptoms I am feeling are minimal and from what I have researched are quite normal. My procedure was the TVT-Abbrevo, not the TVT-O. Mine was Gyne-Care. Which did you all have? I am keeping a positive attitude that mine will be successful.

    Reply
    1. lavalinda (Post author)

      LeeAnn, that is the question we would all like answered honestly. So here is what I think. Mine was Boston Scientific Advantage fit TVT. I was told that they did not use the bad mesh and TVT did not cause the leg back pain. I have now found so many women who tell me that theirs was TVT so we now know it is definately bunk. This was three years ago today, March 9th 2010. Now here is the giant issue. There are nine companies who make many, many types of slings. All have cases against them pending at this point. And these are women who have figured it out. However, many more women do not know because no one will admit it is the mesh causing their health issues. It often takes many, many years and then they find out after the puss is oozing from infection in the mesh and their health goes into a downward spiral. Even then doctors swear it is not the mesh. So who truly knows the complication rate and I doubt if we will ever know the truth. It was first reported that it was one percent. Recently I actually saw it is now reported as 20% by those who dare to speak out. But I speak to women every day and it is rare that a woman has reported her mesh complication because it is made very difficult by the FDA. So what is the true complication rate? So what should you do at this point LeeAnn? Well, get those records as soon as possible and put them somewhere safe the same you would do with any important paperwork. The reason being is that most women have a hard time remembering who did it or where or they move away when things get bad. So take them with you everywhere you go and pay attention to your body. There is a new blog I just wrote and I told what one woman told me. http://teapapers.com/bladdersling/2013/03/dying-with-mesh Her sling was put in 2004 and she had no idea she had mesh. Please read this one too http://teapapers.com/bladdersling/2012/12/the-truth-about-mesh

      Reply
  37. LeeAnn

    All of you are in my daily prayers. Please keep me in yours that I will not have complications from my surgery. My heart is breaking right now but I am going to remain positive and keep the faith in my doctor I have used for over 20 years and is like a member of my family since he delivered both my girls. I will come back and check often and let you all know my progress.

    Reply
  38. vicky

    I had asked my Dr to do the bladder sling when he did my hysterectomy but he wouldn’t. Glad he didn’t now

    Reply
  39. Annmarie

    Hi

    is it possible to have had this surgery in 2001 with no problems up until now.

    I have been fine but am definitely starting to show symptoms ie. urine infections, extreme pain in urethra and lower abdomen lasting now for six weeks. Although the pain is slowly easing it is not going away and feels as though it could flare up again at any time.

    thanks
    Annmarie

    Reply
    1. lavalinda (Post author)

      Yes Annmarie it is possible. Many start having problems years after the mesh was put into them. Start counting the UTI infections and you will find that antibiotics may clear it at first, then another one and so on……….. and finally antibiotics won’t work any more. Make sure your urine goes for a lab test to determine type of infection. Not an office dip stick test. This means you will wait a day or two for the results. Insist they send it to a lab. You should be very vigilant and keep records of everything that is going on with you from now on and get an appointment at UCLA for consult and a translabial ultrasound if this continues. Ask to have the translabial ultrasound done at the same time as consult if you feel there is any doubt as to what you are feeling. This test should not be mistaken for other ultrasounds. MRI’s won’t show it either. It is amazing how it will show that over time the sling slips wheere it should not be. Mine was cutting into my urethra. Luckily it was removed before it went completely through and I did not feel the agony of mesh erosion. What I did know was that I did not empty as I had before, hence the infections. Read this blog to help you while you wait to get it removed. Retention is a major issue and can cause many other serious illnesses. I took a herb for 2 years while I waited to get it removed after my Medicare kicked in. http://teapapers.com/bladdersling/2011/03/bladder-infections-before-or-after-surgery-a-cure-2

      Reply
      1. Annmarie

        Hi Linda

        sorry to bother you again. I just wondered if you have any contacts in the UK regarding this problem. It would be so helpful to speak to someone who has dealt with doctors here. I don[‘t even know what I had put in, only that it was a sling and I’m not sure how forthcoming any doctor is going to be with information now.

        thanks

        Annmarie

        Reply
        1. lavalinda (Post author)

          Annmarie I do know women in the UK who have this problem and it is the same, worldwide. I will work on putting you in touch with someone early next week.

          Reply
  40. Annmarie

    Hi

    thanks for replying so fast. I had such bad pain for about four weeks that has slowly faded. I do feel as if it has moved and perhaps latched on elsewhere and possible healed “for now” if that makes sense. I unfortunately can’t go to UCLA as I live in Glasgow Scotland. I have such a bad history with our NHS here including having my left lung almost completely removed due to my GP’s negligence over two years that actually was the cause of my bladder problem in the first place I have no confidence in my upcoming consultation with a urologist, but I will now go in with a more forceful attitude to find out what’s going on

    thanks again

    Annmarie

    Reply
  41. Misty

    I had a bladder sling in 2009, after my 4th child was born. The only symptoms I have had, that I thought, were some twinges here and there when I moved certain ways. Then I got pregnant and last year gave birth to a beautiful baby boy. I had planned on a natural childbirth. My birthing was excruciating. I had never felt anything so painful in my life. My son also was born with a congenital birth disorder caused Arthrogryposis. His form happened in utero. His movement was limited or something that cause his feet to club, his elbows to remain stiff and more. I am now 8 mo postpartum and i have begun having pains in my lower abdomen. I thought my cycle was returning, I am breastfeeding, but then nothing. Waited a week, pain continued. Went to dr, he say it’s my cycle getting ready to start. I dont think so. He is not the dr who put in sling. Then my husband and myself began talking and realized that my cycles began to become very very painful following the sling. Has anyone else had increased cycle pain following a sling and has anyone ever had a child following a sling?

    Reply
    1. lavalinda (Post author)

      Misty. I know three women who had babies after a sling, two in the U.S. one of them 2 weeks ago and another in Canada. Give me a day or two and I will try to put you in contact with one of them. She is having mesh removal in May at UCLA. I will contact her and ask if she will talk to you. They never should put slings in women of childbearing age.

      Reply
  42. Misty

    Thank you so much. I really appreciate it. I am way to far form UCLA so dont know what I would do. I also dont have insurance either. A friend of mine works in a lawyers office and got me the paper work for the lawsuit to fill out. She thinks I have a case.

    Reply
  43. Sue

    I am so happy I found your blog. I had my sling put in during a hysterectomy in August 2001. I did not know that I had the sling until August 2011, or should I rephrase that? I was not told exactly what I had it inserted, I did not know that I was having something artificial placed in me, but I guess I should have questioned it. My Dr. had asked me about incontinence, but I felt it wasn’t a real problem, I was there for a prolapsed uterus, so never thought to question it since my insurance paid for most of everything. After the hysterectomy, I was went through a lot –my father dying, my divorce, raising 6 children, going back to school full time–you know life. I have experienced a lot of different problems since my hysterectomy, from not being able to have sex, constant diarrhea, to the most recent in the past 3 years of losing the feeling in the lower extremities (like I am wearing rubber socks), pain running down from my groin to my ankles. I lost my insurance after my divorce and after I found out that I had a sling, it seems all my physical problems are caused from the sling. I contacted a Dr. Miklos who is suppose to be a specialist, I saved up the $250 to pay for a consultation, drove all the way to Beverly Hills, just to have him tell me that it was a loose stitch that he removed from the top of my vagina, and that to find out if there is anything else it would take thousands to run a scope because he thought it was scar tissue. I was really discouraged. Last summer I was able to get Medical because I am a substitute teacher and don’t work during the summer. With Medical I had to go to a neighborhood health clinic where they found that I have blood in my urine, but when I gave the nurse practitioner the hospital records from my surgery, she took one look at it and found that the Dr. who did the surgery is a friend of hers and told me I was a scam. They referred me to a urologist who could not explain the excruciating pain and blood in my urine. He then referred me to a gynecologist who is now referring me to a uralgynecologist. Medical has yet to approve this. I have been going at this for over a year. After reading your blog I called UCLA medical and they said that they don’t accept Medical. I am getting desperate. Any suggestions?

    Reply
    1. lavalinda (Post author)

      Sue, I wish I could help you with suggestions but the only thing I can say is, if you can pay for consult which will run $500 to $700 with Dr. Raz or one of the women associates, then perhaps they may know of something and you WILL get a proper diagnosis. Not a lot of help I know, but this is a sad state of affairs all the way around. Once you are an established patient, then in January 2014, you may be able to get insurance through Obamacare and have the surgery. The other thing you can do is try to set up a fund and raise money or ask a church to help you. I wrote it all here. http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money You will be amazed how women have raised money to get the help they needed.

      Reply
  44. dj.newbie

    I am so thankful to have found this website. It’s good to know I am not alone. I had a total hysterectomy 3 years ago and have went downhill ever since. I had a mesh put in for bladder prolapse. I was put right on an estrogen tablet which then went into a patch and now on bio identicals. I had to have ANOTHER bladder just 3 months ago and ANOTHER mesh put in, what was I thinking. I guess I was so desperate because my bladder was hanging down. Anyway I suffer with terrible stomach and back pain. I am so scared! All I do is run to doctors and they keep writing me scripts for “pills”. I don’t even fill the prescriptions I am extremely sensitive to medications. I don’t know where to turn anymore or who to talk to. But maybe one of you ladies could tell me how they tell if the pains are from the mesh; what tests do they do? I feel as though I am dying a slow, agonizing death and I have a very high tolerance for pain. But I can’t take much more; it has consumed and ruined my life. Thank you for listening and God Bless all of you I understand!!!

    Reply
    1. lavalinda (Post author)

      Dj, I have no doubt the pain is from the mesh. You already had issues with the first sling and this happens more than you would like to think. Sling over sling. Get the names and numbers of both slings and if you have insurance please make an appointment to see a doctor who can help you. The top two links are those doctors. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey Life can get better.

      Reply
    2. Angels123

      DJ,
      Your story sounds like mine. I had 2 bladder kits put in within 6 months of each other. After the last one, I woke up in such excruciating pain that all I could do was cry. They kept telling me it was surgical pain and it would go away. It did not…it just got worse. Three years later and over a hundred thousand dollars of treatments to bandaid the problem I found this website. I had removal with Dr Raz in January and I am so grateful to have found him with Linda’s help. Listen to what she writes…she has been down this road and has dealt with hundreds of women in your shoes. She is an expert in this and if you do what she tells you, including going to UCLA for removal, you will get better. Good luck to you!

      Reply
  45. Erika

    Hi Linda
    Linda please can you send me el link where you describe al types of slings here in this blog. Thank you

    Reply
    1. DebCNY

      Hi April,

      There are a LOT of different kinds of slings… was there one in particular you are looking for info on?

      Reply
  46. Sue

    I talked to Medi-cal and they said that I could pay cash for the consultation at UCLA and not lose my benefits. I called UCLA and they said that they do not accept patients with Medi-cal regardless of whether they pay cash for the consultation or not. I would have to close my Medi-cal account if I want to be seen by the doctors at UCLA. I told them how desperate I am and they told me to show up at Olive View Hospital, located at 14445 Olive View Drive, in Sylmar CA, as a medical walk-in or as an emergency patient, whereas I would be then referred to a specialist there, which is also two of the doctors that work at UCLA, though they did not tell me which ones. They said that it is an 8 hour wait, and to be prepared. For me it is also a 102 mile drive. I am still looking for plan B as I have a problem with driving far, and then the pain of waiting for 8 hours is definitely daunting. I feel like Steve McQueen in the movie “Papillion” when he sticks his head out of the prison door window and yells out, “I’m still here you bastards.” Right now I feel like crying, but the battle for justice on this must go on. Hang in there ladies.

    Reply
    1. Angels123

      Sue,
      I know it feels daunting and overwhelming…like you just can’t win…you have to keep going. Muster it up deep inside and do what you have to do so you can get help. I’ve sat for hours getting to drs apts and I know how it feels…you are worth doing what you need to so you can get help. Hang in there!

      Reply
  47. Sue

    Thank you Angels123. It is insane what we have to go through. When I was married we had really great health insurance and I was treated like royalty. Unfortunately not everyone stands by “in sickness and in health” and with that I am left divorced, with a job that does not provide health insurance, and treated like scum because I have state insurance. At least I do have that.

    Reply
  48. Sue

    I just looked up some info on Olive View UCLA Medical and I am honestly afraid to go there. You can check out the reviews at: http://www.yelp.com/biz/olive-view-ucla-medical-center-sylmar. I am not sure what to do next.

    Reply
    1. DebCNY

      That link is not to where the Medical Center and Dr. Raz practice is. He is right in the main medical center:

      Shlomo Raz, M.D.
      Professor of Urology
      Chief Division of Pelvic Medicine and Reconstructive Surgery
      Director Fellowship Program
      Department of Urology UCLA School of Medicine
      200 UCLA Medical Plaza, Suite 140
      Los Angeles, California 90095
      Phone 310-794-0208 / Fax 310-794-0211

      Reply
  49. Sue

    Does anyone know a doctor who is qualified for sling removal in Southern California, preferably San Diego, who also takes medi-cal?

    Reply
    1. DebCNY

      Hi… This is the info on UCLA, where so many of us (including Linda K, and myself) have made the trip to… and I am from NY.

      http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/

      I am not sure about the insurance, I’m afraid. Maybe someone else has more info on that.. .or try searching this site at the top…

      Reply
  50. Sue

    I called the office for Dr. Raz and I guess I should not have told them that I have Medi-Cal insurance even though I would be paying cash for the consultation, because they told me that I cannot go to their office if I have Medi-Cal, regardless if I pay cash for the consultation. In order for me to have a consultation at their office I have to pay cash AND have to give up my Medi-Cal. They do not suggest I do this but that I should go to the Olive View Hospital they referred me to. My advice is that if you call Dr. Raz office do not tell them that you have Medi-Cal. I didn’t realize that having Medi-Cal made you scum of the earth to most doctors. I am still looking for a doctor that is capable of removing a bladder sling and will accept Medi-Cal. Maybe I am asking too much. Somebody told me that doctors no longer take the Hippocratic Oath, they only take cash, or really good insurance. Perhaps it is true.

    Reply
    1. lavalinda (Post author)

      Sue this should not happen. Women have raised enough funds or had family to pay for the proper diagnosis because other doctors refuse to say it is the mesh. It give them peace to know it is. The office staff are not sympathetic but the doctors are. They just don’t know until you can get past the guards.

      Reply
  51. Sue

    Your right it shouldn’t happen, but it does. Now I have to find a new set of guards to get past. It seems that it should be illegal for a doctor’s office to be able to turn you a way, if you are willing to pay.

    Reply
    1. lavalinda (Post author)

      I am going to email you Sue.

      Reply
  52. Sue

    I am looking forward to hearing from you.

    Reply
    1. lavalinda (Post author)

      Sue I emailed you.

      Reply
  53. Patty

    Hi ,I had a mesh sling put in back 2010,,for in continence and it didn’t take care of problem ,now just 6 weeks ago had emergency surgery because of a abcess from it ,when she went in had to remove 2 pieces on each side she didn’t take out ,but now my right leg hurting again in groin and went back to see her but she said its not from the sling ,,not sure what to make of it because I think it is from sling

    Reply
    1. lavalinda (Post author)

      Patty this happens to women all the time which is why I advocate for full mesh removal. It happened to me too and I am permanently damaged. Either she is lying or ignorant.

      Reply
  54. Patty

    Iam just concerned because all my health issues came so fast ,,it has been 6 weeks and still don’t feel good,all week been sick with the runs now so not sure if it has anything to do with what’s going on ,,I know my right leg kills me to lift and now she wants me to go to a physicall t…I’m thinking on going to a new dr because I have never had pain in my groin area ever till now

    Reply
    1. lavalinda (Post author)

      Patty physical therapy will not help you. This is the standard statement so as not to admit it is the mesh.

      Reply
  55. Patty

    Also what worries me I had my spleen removed in 2005 and I had told my dr before I had the surgery in 2010 ..that couldn’t afford to get any infections ,,also last year from my gyn. Dr he said I had a little erosion but when I asked the urologist that did the surgery she said I had none now ..also this other problem I have is my right arm hurts also and that started same time groin on right side. ,have been to so many dr and test so now they try to say I have fibromilyga…which is hard to believe when I was fine back in dec ..

    Reply
    1. lavalinda (Post author)

      Paty I feel for you. There is no such thing as a little erosion except to those who don’t have any. Please go out to UCLA urology. They take care of women with many other health issues and you will be in good hands.

      Reply
    2. Angels123

      Patty,

      Your story isn’t uncommon…the docs just want you to think it is. Listen to what Linda has said here…she has outlined the path back from mesh. You will have to take action for yourself and the first action is the apt with Dr. Raz to get scheduled for removal. You really have no other good options that will lead to you getting your life back. So overcome the obstacles to getting to UCLA so you can start the process.

      Reply
  56. Crystal

    Yikes. I really wish I had known all this a few years ago.

    I’m on my second mesh now. The first one lasted about a year and a half before I started leaking again. When I told my urologist, he acted as if it was impossible for the mesh to stop working, but agreed to examine me anyways. When he confirmed that it had in fact stopped working, he blamed it on my diabetes. I then paid another several thousand dollars (with insurance) and he implanted a second one. He left the first one in there and said that it would be too complicated to remove it and that it wouldn’t hinder the second one. I trusted him.. and agreed. Now, about 2 years later, I have started to notice that it wasn’t working as well again. Also, I get cramps. Sex is too painful because of cramps and instead of feeling the pressure of a bladder when I need to urinate, the only way I can tell that I have to pee is by the intensity of the cramps. Now just today I noticed that I was cramping and bloated feeling and just chalked it up as gas. Then later tonight, I took a shower and noticed that something felt like it was falling out of me. When I felt around, it felt like sharp jagged pieces were stuck on the inside walls and falling out and it was very painful when I touched it. I am headed to urgent care in the morning, but I just know that it’s the mesh working it’s way out of me. I’m not sure if I should go to my GP or back to that same urologist who did this to me. Between insurance and out of pocket, I think these two mesh slings have cost over 12 thousand already, (maybe I’m remembering wrong), but I certainly can’t afford to keep dealing with this and now I’m scarred as hell to think of what I might lose because of it. Reading all these stories has me freaked out now and I really really hope that I don’t have to have several surgeries because of this.

    Reply
    1. lavalinda (Post author)

      Crystal you are not supposed to know this, your doctor is. ANY sling can stop working. You have mesh erosion and I am sure the great folk at UCLA urology can help you. They do mesh free repairs on any prolapse.

      Reply
    2. Angels123

      Crystal,
      I also had 2 mesh slings put in. I will tell you there is probably no one out there who will tell you the truth of what is going on and certainly NO ONE that is probably skilled enough to remove two slings and actually fix it properly except at UCLA. You talk about what your mesh has cost you but I had two years of trying to fix it with people who didn’t know what to do cost me triple the number you are quoting (with insurance) . The most cost effective and most safe thing you can do is don’t spend another penny with the docs who don’t want to tell you the truth…save it and get to UCLA where you will find out how you should be treated as a patient. Good Luck to You!

      Reply
  57. Debbye Bouldin

    I will have had my mesh sling one year next month. The last few months my stomch has felt so bloated and so big at times.It feels so tight. I have so much trouble having a bowel movement. I am constantly taking a laxative to to have a bowel movement. Sometimes two at a time and still Ihave trouble. My stomach starts to feel unconfortable as soon as I get through eating. From my left side all the way to my right and side around my belly button I feel unconfortable. I feel as though I have a pair of elastic pants on that are way to tight in the waist. I dont want any thing touching me around the waist most
    of the time. My surgery lasted for eight hours and was done with small incisions in my stomach .I had a laparoscopic smymacervical hysterectomy,sacnal eolpopexy with gynemesh, and prosterior colpparhapy cystrpyos.I am not sure I spelled these correctly. I am trying to spell what was wrote on the paper when asked again what all did you do? It was wrote down for me. I know I had a rectacil and cystecil done. Could the problems I am having be caused from the sling?The bloated stomach, tightness around my waist from left side to right, and severe constipation all the time.

    Reply
    1. lavalinda (Post author)

      Debby it is so sad to hear so many terrible stories of women like you. Yes theses are common symptoms and you could have a blockage in your colon. 8 hours is way too much. Something isn’t right. Please, please save yourself and go to the urologists at UCLA.

      Reply
  58. Patty

    Glad I came across this blog. I had surgery, (sacral utero colpopexy) in July of 2006 for a prolapsed uterus to the third degree. Meaning, one day when I sat down to pee, my uterus was protruding from my vagina. Unlike most women, I did not want to have a hysterectomy, I’m just not all about having organs and such removed from my body. So I found a doctor in Philadelphia, PA (only one of two that I could find at the time that did this surgery. I lived in Roanoke, VA at the time) I am a nurse and consider myself somewhat intelligent. This doctor was very excited about the surgery and promised me it would be the answer to all my troubles and that I would never have back pain again. He had a great bedside manner and really appeared to know what he was doing. What a nightmare this has been. Hours after the surgery I began having tremendous pain in my right lower quadrant. The doc discovered a stitch that had been placed to close to one of the ureters therefore causing swelling and a blockage of the ureter. He contacted the urologist that accompanied him during the surgery, (this was Friday morning) and that doc decided I could wait until Monday to go back into surgery to fix the problem. It was a weekend from hell…a pain I wouldn’t wish on my worst enemy. Monday, doc treated me like I was a big inconvenience to him but did the surgery. Next morning, I had a jp drain that was full, nurse emptied it and within an hour it was half full, but the doc pulled it, against my wishes. I went to my sisters to recover, only to get sicker. Finally ending up in the ER being treated worse than a dog. Kept overnight and sent home. In and out of hospitals for two weeks with no results and finally went home to VA only to have my fever spike to 103.9 while on ibuprofen and tylenol. ER again, only this time tons of blood drawn and admitted. Turned out I had MRSA…go figure right…8 days in the hospital on vancomycin and blew every vein they inserted a needle in. Then for about three years things appeared okay. Except for the BV I couldn’t seem to get rid of. After a divorce and meeting a wonderful new man I discovered I really had problems. I had leakage of urine EXCEPT when I wore a tampon, I also leaked urine during intercourse which had never happened to me before. I became embarrassed and avoided relations with my husband. Then in the last year I decided to see a doc in Bethlehem, PA where I had moved to. He was wonderful, but was concerned that the leakage may be coming from inside due to damage from the mesh, and informed me that I was prolapsing again. I was in the process of moving to Colorado and they had lost three docs so appointments were very far out. Now that I am settled in Colorado I finally went to a doc a few months ago..He said that things looked good to him and that if he hadn’t known I had the surgery he wouldn’t have noticed the prolapse…Uh, think I’ll agree with the specialist, the urogynecologist. Anyway, he said we could wait “until things worsened” and then maybe we could do something as the only specialists he could send me to are in Denver, CO, six hours from me. I called their office yesterday and told them I am ready for the referral to that doc, as I have been getting severe, sharp pains in the lower left quadrant of my belly. It feels as though something is poking me from inside. It’s difficult to do anything….walk, stand, sit….Still waiting for the return call from the office, but will call them again tomorrow. I also contacted an attorney, a good attorney, who also has a link on their website so that some women can get financing to help them get the needed surgeries. Wish me luck, I’ll keep you all posted and will keep an eye on your stories as well. Prayers to everyone, I hope we all can get our lives back. Believe it or not, this is a very short version of the hell I have been going through. Good luck to all, and to those considering this type of surgery, turn, run, do anything but don’t expose yourself to this. We are just a few stories….do some research!!

    Reply
    1. lavalinda (Post author)

      Patty, I know the hell you have been through because I know women from the area you lived in. This is such a sad state of affairs, but I hope now you will be able to get the fun
      ds to go to UCLA. Keep us posted.

      Reply
  59. Shawn Marie Maness

    Hi,
    I had a partial hysterectomy and a bladder lift at the age of 30, I went into this surgery thinking all would be fine, after all I watched my mother n law have the same surgery and she was released the next day no issues. Anyways I went in had all that done, and the next day I could not pee, so I had to stay another day and the same thing, so they released me with a catheter, and had to follow up with my DR in a wk, well in that wk I had the catheter removed and still couldn’t pee, and this went on for a month, finally he took the catheter out and said I would have to catheterize myself until my bladder learns to pee on its own again, well that didn’t happen for a month, and it was so very frustrating because there is nothing worse then learning how to do that on your own when you really have to pee, so before I peed on my own the dr had talked about another surgery to loosen the mesh up so I could go pee on my own, which I think scared my bladder cuz I finally peed. Well ever since the surgery I have had pain on my left side butt cheek if I move a certain position. And times it hurts really bad, I also feel like I constantly have a bladder infection which is always negative but hurts so bad for a few days and then stops. I don’t understand what is wrong and if it has anything to do with my bladder surgery. Please could you help me out by maybe giving me some well needed advise. I am not always on here so if you could also email me your comment I would appreciate any advise. Thank you so much.
    Shawn Marie

    Reply
    1. lavalinda (Post author)

      Shawn Marie, your story is so common and yet very, very sad. So many young women who have their lives stopped and they cannot get help. I don’t know what your situation is with insurance or the State you live in but I know many other young women who live like you are now and unless you get help before long, you will have serious issues long term. Because you are so young, I have a nurse friend I will put you in touch with. She helps all the young women.
      Yes, it is ALL to do with the bladder surgery…….

      Reply
  60. Shawn Marie Maness

    Thank you for replying back, I am from Florida and had my surgery done 7 yrs ago, and have other issues but did not know if they were related to the surgery as well. So yes please have your friend contact me through my email I would greatly appreciate it! I can not deal with these issues anymore and need to be checked by my physician, Have a blessed day! And again thank you!

    Reply
    1. lavalinda (Post author)

      The nurse who helps me also lives in Florida. She has already sent you an email.

      Reply
  61. katie

    Beginning fear of something very wrong. Pelvic pain like phantom ovaries..years of polysystic. I have no female organs and mesh sling. also left leg pain..do I see obgyn or uroligist??? surgery done 3 years ago

    Reply
    1. lavalinda (Post author)

      Katie I am going to give you the best advice possible to save your body and your sanity. Please go out to UCLA. Urologists. My complete journey is here. Raising money and doctors who can help you. My experience and what it costs to travel. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey/

      Reply
  62. CJ

    I hope someone here can offer some insight for me. Yesterday I had a pelvic ultrasound, an internal ultrasound and a host of other scans and tests. Today my Dr tells me I have massive scar tissue adhered to my organs and a prolapsed bladder. According to him I am classified as urgent for surgery here in Canada. Part of the surgery he says will be pinning my bladder back where it belongs. Other than that he suggested researching prolapsed bladder for detailed explanations.

    This whole issue started 18 years ago when I had a total hysterectomy. Ever since sex has been extremely painful and I bleed for a few days afterward, when I have go pee I have to RIGHT NOW or it causes extreme pain, I’m up at least half a dozen times a night … I just don’t know where to turn or what to do. The dr said because I’m listed as urgent for surgery I could literally get a call tomorrow or it could take a few weeks.

    Any insight or suggestions would be very much appreciated.

    Thank you

    Reply
    1. lavalinda (Post author)

      CJ I am going to put you in contact with other Canadians ASAP. You need their help and their wisdom. I will do it now.

      Reply
  63. ChrisB

    hello all,
    I have been doing a lot of reading. I had a bladder sling as well as my ovary removed after a partial hyster 7 years earlier along with mesh to hold in two surgery scar ruptures from having three c-sections. Where do I start; pain, severe fatigue, pain in lower right side. Sex is painful. Don’t let the hubby know. Slightly over weight but follow a healthy lifestyle. Eat right, excersise when I can make myself. Always feel like I have to pee, full feeling pain after I pee. Husband wants me to go to dr. But every time I go I just get frustrated and end up owing the hosp. More money. Guess one must suffer in silence.

    Reply
    1. lavalinda (Post author)

      ChrisB. Take a chance and make an appointment to see Dr. Raz at UCLA. Stop worrying about money and file medical bankruptcy when you can’t pay any more. Your life is worth it to have a chance at hope.

      Reply
  64. Janae

    Hi my name is Janae and I am so happy to have found this blog. I have suffered from this since 2006. I have lost count of how many bladder infections I have had. So many trips to the er for abdominal pain. I had the Caldera T-sling implanted inside me in 2006. It has been a nightmare for me. I have been so depressed. I am currently waiting for revision surgery. I hope this will give my joyful life back.

    Reply
  65. helen

    i am 30 i had surgery in2010 they put a bladder sling in after that started hurtin none stop bleeding and pain so i went back in jan 21 had a historecy they put bladder sling and mesh in now i cant stand set or walk a long time or lay i am in pain all the time please dont have this surgery

    Reply
    1. helen

      and i have trouble using the bath room my left side kills me i

      Reply
    2. lavalinda (Post author)

      Helen this is so heartbreaking for me because you are so young. And yet it happens every day. Please fight to go out to UCLA.

      Reply
    3. Sue

      I too had the same surgery over 12 years ago, with constant pain. Dr. Raz emailed me that you can actually do to any Doctor that does female reconstructive surgery for help. I ended up at Loma Linda University Hospital here in California, where they did a 3D ultrasound and found that the bladder sling had traveled and embedded itself into my abdomen. I am having it removed on January 8th. Dr. Hardesty, the doctor who is doing the surgery, said that there is 2/3 chance I will be pain free after the removal. I figure anything is better than what I am having to deal with.

      Reply
  66. Cheryl Walters

    I had a bladder sling 5 yrs ago and just this week I have experienced pain that I think is related to my sling. I went to the doctor = urine was ok as was all the other tests they did. They put me on antibotics to see if it would help – there is some relief but not all the pain is gone.
    Can you please send me the information on the UCLA doctor you are speaking about? Do you know what the success rate is for sling removal??
    Thanks!
    Cheryl

    Reply
    1. lavalinda (Post author)

      Cheryl, this is very common that all tests come back normal, but did they do a urine culture test? This means they send your urine to a lab and it takes 3/4 days to grown the type of bacteria and then they give you antibiotics to try to cure the type. However, even with this, the infection will not leave if it is deep in your tissue. It will help for awhile, but will come back with a vengeance. No one can tell you how you will do after removal or what damage the sling has done, except a doctor who has this experience, hence Dr. Raz, after it is removes. But it sounds like your nerves are not affected yet, so go to him and you should do fine after time of healing. Look to the right for his information.

      Reply
  67. Laura

    Hi,
    My mom is 71 and for her severe prolapsed uterus it has been recommend for a full hysterectomy with the mesh sling. I’m so afraid we are making a mistake. This may be TMI but her girl parts hang way out touching her thighs. She has trouble waking and urinating. Can anyone help with advice. :(

    Thank so much

    Reply
  68. Susan

    Hi Valerie. My name is Susan I live in Indiana. I was 29 years old when I had a complete hysterectomy in 2003. I am not sure if they used a sling on me or not, but I have been having all kinds of issues and pain. I no longer have intercourse with my husband because it is to painful. I can be sitting still and all of a sudden it feels like something flips up in my stomach and causes me pain. How would I find out if my Doctor used a sling on me? Please send your response to my email. Thank you so much for sharing your experience with all of us.

    Reply
    1. lavalinda (Post author)

      Susan go to the place where the sling was put into you, hospital or clinic and ask for your records. I will give you the link to explain in a moment. Your doctor will not have the name of it.

      Reply
  69. Kerin

    I had the mesh bladder sling done in 2010. Since then I have had cervical issues and pain in pelvic as with sex. I have also been diagnosed with fibromyalgia and never had problems before. Never got sick always healthy and athletic. Now I’m in pain constantly. I believe there is a link here. Now I am facing a hysterectomy but my Doctor says it is fine and too small to cause problems. My husband wants me to have it taken out but Doctor says it is actually holding everything up my my uretha is smashed. I don’t know what to do. Please help…

    Reply
    1. lavalinda (Post author)

      Kerin your husband is right and doctor wrong. Scar tissue will more than likely hold things up after even after removal. It sounds as though you need more reconstruction after removal and you need to go to UCLA regardless of what it takes to get there. 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
  70. Kerin

    I have also had my cervx enlarged twice with D&C surgery with black tar periods and have been tested and n ot in mennopause. I am 42. Again my cervix is enlarged and I look pregnant at 114 pounds. I feel like my life has been robbed and can no longer enjoy the things I used to do with my family like bike riding, hiking trails and so much more. Need advice quickly as my surgery is approaching. Thank you!!!!

    Reply
  71. adee

    So many, many women here that has have mesh implant problems. Does it occur to anyone here, that we, women were used as the guinea pig? I did not get the mesh, however I did get a two slings. The first sling was made of some bovine material stapled to my pelvic bone. It seem to have worked for 8 months or so and then I felt a snap. Like a pulled tendon or a rubber band snapping inside my vagina . I felt extremely bruised. Still to this day, I do not know if it was related to the sling or but shortly after that snap, started to leak again. The first sling surgery was back in 2008. My 2nd sling surgery, with the same urologist was this past July (July 2013). Immediately, I noticed I had no muscle control to hold the urine or release it but one thing is for sure is that I didn’t leak with a sneeze or cough. However, I had immediate onset of rushing to the bathroom quick once my bladder had to go. Before I could squeeze and hold it as long as I didn’t have to sneeze or cough, I wouldn’t leak. I couldn’t void without feeling discomfort from my bladder from this second surgery. It felt like a bed wetting dream. So, I decided to see a Uro-gynecologist . After the testing that I have never had before , not even with the two prior surgeries, I was consulted to have surgery to release by cutting the sling. This would release the tension because the sling was put on too tight. I signed the documents knowing this procedure was just to release the tension. Little did I know, I got a call from the Pre OP nurse going over some medical questions and mentions I would be having 2 sling removals. I sat there and said, ok – yes. Thinking, did he just change up the procedures without consulting me? Since, I trusted him as a surgeon, I’d accepted he knew he had to do that but still no consultation as to why. So, I went the next day, waited to talk to him and saw him as he was walking by from doing the prior surgery (other paitent). He did not say anything to me. Still, I had no consultation why we were removing both slings. Wouldn’t this cause major leakage again? YUP! I have no control. It’s like my urethral sphincter is shot. I empty my bladder and wet myself with constant leaking. I go through 1 pad an hour. WOW! I’d refused to go home with a catheter and had passed a test to do so. I wasn’t leaking for 3 days or so but the swelling must have went down and now, it’s on. I’m just 41 and PIST OFF. I am not the medical field’s guinea pig. I did not give them a blank contract to do whatever they want. I have 500 thoughts of anger running through my mind right now. Why were there 25 ppl in my operating room. I wasn’t having heart surgery. Were they a bunch of other doctors observing the surgery? And yes, my thoughts are vulgar too because my flipping vagina is not free to look at.. I did not sign no waiver agreeing to show the world this procedure. Screwing me up is not something I WILL NOT cope with. I am so sick and tired of these doctors using women as guinea pigs. My follow up is this Wednesday and Oh boy, do I have a list of questions why the consultation of the procedure I agree to have was different than what I did receive. And what really ticks me off is that he only does the surgery and consults with his staff as they relay it to me. My follow up appt is with a Nurse Practitioner. Because, I am assuming he is god, he doesn’t want his valuable time to talk directly to patients. And how many here have Attorneys? Thanks for letting me vent.

    Reply
    1. lavalinda (Post author)

      Adee. Sometimes we can only move forward by staying away from those who hurt us. Try this doctor http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

      Reply
  72. Sue

    Thank you Linda for all your help and support. The week of our last emails I contacted the Dr. as you suggested and God bless him is all I can say. He contacted me back telling me that I could go to any pelvic reconstruction Dr. and they should be able to remove the bladder sling that has been nothing less than torture for the past over 12 years. Anyways, also that week I was given an appointment to see Dr. Lyons at Riverside General Hospital for a month later. I took a copy of the Dr. from UCLA’s letter with me showing what test needed to be done. I feel that letter gave me some credible weight as it seems that I was being treated as a scam artist looking to cash in on the ongoing lawsuit. Dr. Lyons then referred me to Loma Linda University Medical Center, Female Pelvic Medicine & Reconstructive Surgery for a consultation. Their address is: 11234 Anderson Street, Loma Linda, CA 92354. Phone (909) 558-4000. Since I have Medi-Cal, which they do accept, there is a waiting list for the test to be done, but I had all three test completed within 2 months. They did a 3D ultrasound which showed that the sling has traveled into the wall of my abdomen and is at an angle towards my back. This definitely explains the pain. I am scheduled for surgery on January 8th. It would have been nice if I could have had the 3D Utlrasound done years ago prior to all the torture, but at this point I am just happy that I am seeing a light at the end of the tunnel.

    Reply
  73. Kathie Kelly

    Hi Linda and all…

    Here is my story… I had a full hysterectomy August 15, 2013 and was supposed to have bulking agent put in at that time for my bladder problems. I already had a mesh in me for about 5 years and now it was not helping at all. I needed more surgery on December 13, 2013 to put in a new sling (same kind I had in before and had no problems) Well as soon as I woke up in recovery and tried to walk I had excruciating pain. They said it was the positioning of how my legs were during the surgery. I was sent home with pain killers Dilaudid 2 mg,

    On December 17 – 4 days after surgery I ended up in the ER with excruciating pain again. They checked for blood clots and gave me more pain pills and some prednisone. I started to feel better until I was done with the prednisone. I ended up in the ER on Christmas Eve Dec 24 again in excruciating pain. They did an CT Scan to see if I had any infections or adhesions. Nothing. Again sent home this time with Naproxsen which didn’t do anything. I again ended up in the ER on December 29 with excruciating pain. They went and did a sonogram to of my groin to see if I had blood clots, nothing. I was sent home with nothing but my gynecologist put me on a strong steroid. I again started to feel better until I finished them. I ended up going to another ER at a different hospital on January 2, 2014 again excruciating pain.. They went and did a full battery of tests and they thought it was a gall stone 9 – 10 mm . I was sent home with an antibiotic and pain meds this time Dilaudid 4 mg. The next morning January 3rd I ended back at the same ER and they admitted me so I can get the pain under control and see a Urologist. The only med that helped for pain was Morphine.
    So for the next 3 days I was in the Hospital where I saw the Urologist and he said it wasn’t a gall stone but the bulking agent. He said it was the sling compressing a nerve and will need to be removed. So another gyno looked at me and checked me and then contacted my doctor and all came to an agreement to remove the sling as it compressed a nerve. So on January 9, 2014 I had the removal of the sling. Amazingly no more pain!! I do have some pain in my upper thigh but it is slowly healing.

    I am having no problem peeing but I am still in pain from the healing. Today I am 4 weeks out and I think my hubby and I had intercourse too soon this morning as I am not bleeding. I am worried and praying it will stop, it isn’t massive just a little but it is bright red and I am in pain.

    At any rate that is my story. The doctor said I might not need another mesh if I am peeing and doing ok. I am peeing ok but leaking is pretty much. So I am praying for the answer as to what I should do.

    Thank you all for listening!! Praying for you all who have problems. I am still messed up and I don’t understand why being my first mesh I had years ago never had a problem.

    Thank you again for listening!

    Kathie

    Reply
    1. lavalinda (Post author)

      Kathie, did they leave the first sling in you or did they remove them both? Did they remove the anchors that held the mesh in place? You can be fixed without mesh at the urologists of UCLA and they will do a test to see how much mesh is left in you. The bleeding probably will stop but if it gets heavy and bright red, go to the ER immediately. You did not say what kind of sling you had.

      Reply
  74. Kathie Kelly

    Hi I am so sorry the first one I didn’t have removed that was about 5 years ago. it was a suburethral sling mesh I had before and also was put in on 12/13/2013. Only had the one on 12/13 removed due to the compressed nerve. Thankfully the bleeding has stopped!

    Thank you for responding!!

    Reply
    1. lavalinda (Post author)

      Kathie, I hope you can improve now and not have more health issues. If you do, you may need to travel to a competent doctor to remove all of it. But take it one day at a time and allow yourself to heal. I am hoping all will be well for you. I now answer comments around once a week as I too am trying to get my life back, but I still care deeply and try to help many women.

      Reply
  75. christine

    im 30 yrs old now, i had a bladder and uterine prolapes, almost comletely out of my body about 5 yrs ago. total hysterectomy was done. a few yrs ago i saw the lawsuit commercials start up, but i was fine then. now im not, and the more i read the more all my symptoms seem to match 1 colprit. on dec 24th 2013 i was diagnosed with a hernia in the l groin area, because of no insurance it still hasnt been repaired, a few mos ago i started getting severe pain in my right leg, and my ankle down foor has no feeling. a few weeks ago i noticed that my well, um….i seem to be leaking all the time, but it has a very acidy smell and some times it seems more like feces in my vagina(so gross, and very emberrising) apone looking those symptoms up it points to a fistula. then last week sex started to hurt and i was bleeding for a few days, along with a fecal matter smell. ive aske the doctor in the past if i had a mesh sling and he wouldnt return my calls, i have no insurance and fear that mesh had to be used, and that it is just now recking havoc and quickly. i dont know what to do. i cant stand very long, sometimes cant stand at all. im in pain all the time. i know the doctor described how he was going to do the surgery, but they had me on so many meds i dont remember much, also i read that if mesh was effective my bladder would have worked right away, it took several days, also my bladder is collapsing again and maybe the vaginal wall itself, theres a noticible bulge that if i press on a few times, like im “pumping” it if im unable to pee thats what will make me be able to release urine. please any advice or someone to talk to.

    Reply
    1. lavalinda (Post author)

      Christine, I wish I did not have to read comments like yours because you are far too young to have this happen to you and be left with the dire consequences of what mesh does to women’s bodies. Yes everything you say points to a fistula and you really need a good doctor to help you. I don’t know where you live, but I want you to know I care very much about what has happened to you. I hope you know what was put into you back then but you should realize mesh has been going on for a long time and I have no doubt mesh was placed in your body in perhaps more than one location. Please obtain your records from the hospital you had the surgery done. Doctors are not helpful in this matter and I doubt if your doctor kept any records about what was done to you. I am concerned about the fecal matter and it tells me mesh has eroded through your colon. You need help by a doctor who knows what they are doing and you are far too young to be left like this. I am going to send you an email. These blogs will tell you how to get your records. http://meshangelnetwork.com/2011/01/report-to-the-fda/ and http://meshangelnetwork.com/2013/03/medical-records-law/

      Reply
  76. Crystal

    Reading the posts on this site are really scaring me. I have bladder and uterine prolapse, my last child was born 4 years ago and I have been telling doctors that things have not been right since I had her. Before her delivery we had a very active sex life and since her I will try to tolerate sex about once every 2 or 3 months and usually cannot allow my husband to continue after just a few minutes. All the doctors I have seen wee saying that I had just had a baby and things would get better, no one took me seriously. About 2 months ago I was in the floor playing with my daughter and felt a sudden pressure and there was literally something coming out of me. After going to the doctor i was sent to a urogynecologist who has scheduled me for a hysterectomy and placement of the transvaginal mesh to hold my bladder up, next Tuesday, just 3 days away. I have been dx with uterine and bladder prolapse, it is my bladder I felt coming out, and inabilty to empty my bladder, I am really scared about the mesh and told the doctor this but she says the only other option I have is to just live with the problem as it is. any advice since it looks like there a ton of us that have been through similar situations. Thanks

    Reply
    1. lavalinda (Post author)

      Crystal there are doctors who can fix you without mesh. There used to be many but now you have to hunt for them and you have to take the time to do so. At the top of this blog you will see a link for doctors. Some are there and I ask women to please let me know when they find more. Yes what has happened to you is very scary, but it will be far worse if you have complications from mesh. Please, please take your time and search for one who will fix you without mesh. It will be the best thing you can do for you and your family.

      Reply
  77. cynthia gipson

    I’m so glad I found your site. I had a complete hysterectomy in 2003.and had a TVH BSO and vaginal vault suspension. Two years later it all came falling down. I went back to the surgeon and she did say that some surgery’s just was not successful. And showed no concern at all. Several miserable years later. I went to my primary physician. She checked me and told me that the walls of my vagina had folded down. I contacted the surgeon’s office and was told that I had no mesh and no sling. That they had sutured my badder,vagina and rectum. How do you tell if they used a sling or mesh.

    Reply
    1. lavalinda (Post author)

      Cynthia you have to get the records from the hospital where you had the surgery.

      Reply
      1. cynthia gipson

        I requested my medical records today.They did fax those.I do not understand all the medical terms.

        Reply
        1. lavalinda (Post author)

          Cynthia First if you have mesh there will be a make and number written in your records either in the operative report or the operative nursing notes. I don’t know what State you live in but there is an ultrasound you could have done to find out. Read this. http://www.analogicultrasound.com/applications/pelvic-floor

          Reply
    2. lavalinda (Post author)

      Cynthia you have to get the records from the hospital where you had it done. Read this blog and it will help you. http://meshangelnetwork.com/2013/03/medical-records-law/

      Reply
  78. Crystal K.

    I should have been more patient in trying to find a doctor. I really thought that the hospital was a good place and that I was safe in the care of these doctors. I started having problems 3-4 days post op with discharge and pain. Went in on post op day 8 to see the dr again and was told everything was healing fine and that there was nothing wrong with me. 4 days ago I saw my PCP and she confirmed for me that I have a massive bacterial infection in my vagina. After 3 days on antibiotics my pain is still getting worse so I spent the day today in the ER. After 2 very painful pelvic exams I now have to go through it again in the morning with the surgeon. The only thing that they would admit to me today was that the pain I am having, that is bringing me to tears when it happens, is located directly over where the mesh was placed and that the mesh may have moved causing this. Praying for good news tomorrow

    Reply
  79. lavalinda (Post author)

    Crystal K, please make sure they test for any infection from now on by doing a culture. Insist that they do one or all they will do is a dip stick test in the office of any doctor. You are now in grave danger of going septic if your infection is not under control. Look at the top and you will see a drop down link for supplements. You may want to try taking some to help you. Then if possible, get out to UCLA (doctors link at top and Dr. Raz was my removal surgeon) and have it removed and get fixed without mesh. I hope you will soon feel better.

    Reply
  80. Crystal K.

    Thank you for the advice! I have my PCP involved because the surgeon, even after vaginal cultures and bloodwork by my PCP showed infection, is still avoiding that conversation. I am only 4 weeks post op and going for a CAT scan now on Friday to see what is going on. My PCP is concerned that the mesh has moved and perforated something because even though there is infection there apparently they cannot visually see a cause for it. I started feeling really bad on Friday and actually passed out while trying to shower so now I am stuck just sitting here until we can get CAT scan results and figure out what is going on. Apparently, unless I am passing blood there is no reason for an emergency CT. At this point I cannot even keep my 4 year old daughter home with me alone because she saw me pass out Friday and when I came to all I could hear was her screaming I don;t want my mommy to die! This has been the most horrible experience of my life and I am so scared it is just beginning! Cynthia, how hard was for you getting them to remove the mesh and were they able to get it all out. I cannot find a doctor anywhere around here to see me other than the one that did the original surgery so I feel like I am stuck with them

    Reply
  81. Crystal K.

    And I also found out today that I have lost 15 lbs in the last 4 days but they still say I do not need to be in the hospital and it is fine for me to be at home waiting for a CAT scan

    Reply
  82. lavalinda (Post author)

    Sad to say Crystal this happens all the time and in the end you have to help yourself. I am afraid it is the same everywhere and the only way to get help is to travel away from home. You do have some recourse and can put in a complaint. Don’t be afraid to do it as I don’t want you to lose your life. I’ll give you the link. Don’t give up. Stay on the phone all the time to get help. Find a nurse practitioner in your area and beg for help. That is what I did last year when no one else would help me. Nurses care and are compassionate and it was because of one that I found a doctor who would at least help me. I’ll be back with links. http://meshangelnetwork.com/2014/06/understanding-sepsis/ Report this doctor if he does not help you. Let your family know everything in case you get too sick. http://meshangelnetwork.com/2014/06/report-medical-abuse/ Unfortunately these doctors will put you through tests that won’t help see what is wrong. If the CT scan shows nothing, don’t be surprised when he says it is all in your imagination. Read this and there is a pelvic MRI that may show what has gone wrong. Yell loudly to get help and beg a nurse practitioner to help you get tests done by someone who will believe you. http://meshangelnetwork.com/2014/09/tests-to-find-mesh/

    Reply

Leave a Comment

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

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>