Mesh Destroys Lives

It is almost three in the morning.  I woke up suddenly, thinking I heard something.  I hobbled through to the kitchen, every step reminding me of the mesh in my body, but the house was quiet.  I put a cup of milk to heat in the microwave.  While it warmed I began thinking about the woman who sent me an email before I went to bed.  Another lost soul living in pain, unable to work and fighting our system.  Trying to get disability and medical care is not made easy for women with mesh in their bodies.  They fight pain daily and have to fight harder to get medical care, often without good result.

I checked my email to see if she had answered my question of which State she was in.  Nothing.  There was a story from a thirty-two year old woman who also has mesh in her body after a hysterectomy and can no longer care for herself or two children.  Another life on hold and broken.  Another family in serious trouble.  I then checked to see how a friend had done today with his fundraiser.  A fundraiser designed to help him and his wife try to save their lives and those of others.  Mesh is responsible.  Their house always close to foreclosure.  He is always struggling to make enough money to take his wife on a long road trip to the doctor.  Another two lives on the edge.  Another family broken on the brink of collapse.  I read his sad, broken words that the fundraiser was a wash.  Maybe it was because it was the Easter weekend.  Maybe it is the economy.  Who knows.  He felt beaten down.  He said they were worse off than before.  His words linger in my mind.  Mesh is responsible.

Today is Easter Sunday.  A holiday of joyful religious spirit for many.  A holiday for children to hunt and find eggs.  A Spring holiday with the promise of summer and carefree fun.  Not for everyone.  For those who have mesh in their body and the families who support them, there isn’t a lot to celebrate.  Each day is a struggle.  Financially, emotionally and physically.  It takes a toll on all who are exposed to the perils of mesh.

I hope this friend will bounce back tomorrow and not feel a failure.  I know he feels beaten and a failure as a man.  A man who wants to help his wife get well.  His spirit broken.

For all those who enjoy this spiritual holiday, there are many who can’t enjoy anything.  The endless pain racking their body and destroying the life they once knew.  Their family watching on the side lines unable to take away the pain.  Mesh is responsible.

When will the world take notice?

7 Comments

  1. Robin Robbins

    My story is of 11 years of immense non-stop pain since a Bard Pelvicol Sling Acellular Collagen Matrix Serial #483047 was put in me June 2001-BEFORE the FDA even approved it. I had a Total hysterectomy in 1997 because of Adenomyosis and a cystocele and rectocele. They told me the hysterectomy all went FINE but later when I obtained medical records for Social Security Disability and my Teacher’s pension I saw the operative reports which said I lost a large amount of blood and there were cysts etc all over my uterus and ovaries and they were sent off for diagnosis after the hysterectomy. It also said my uterus was boggy and had the signs of Adenomyosis. (My Mother had a complete hysterectomy for the same condition at the same age (38) at the same clinic, I had always thought they misspelled Endrometriosis.)

    June 2001 I had a surgery for a prolapsed bladder, cycstocele and recotocele just a few years later. An urologist in Tulsa along with the Oby/Gyn who had done my hysterectomy both did procedures. My oby/gyn told me to go to an urologist also because I had a LITTLE leaking. Mostly it was a severe bladder prolapse where you could feel my bladder at the entrance of my vagina. I asked about alternative methods such as a pessary and the urologist said they were for old women in nursing homes and I was too young at age 42. He said with a kit it would take care of everything without any complications. He gave me no explanation at all what the kit would involve. I had had major operations before such as the hysterectomy, two fused discs in my neck in 1999, carpal tunnel on both hands 2000 and 2001 and had got through all of them OK. I KNEW the minute I woke up in recovery from this operation in June 2011 with the sling I had the WORST pain in my life! Felt like someone had tied something up to my eyeballs, and I had had two children naturally in childbirth. My pain is like that of childbirth when you are at the pushing stage any time I sit down or lay down a certain way all the time.

    I could not urinate for a couple days in the hospital so the gynecologist sent me home with a catheter. He said everything went FINE, the Oby/Gyn did the rectocele, cystocele and also tightened up my vagina. The urologist said he was just going to stand by but said my bladder neck was very mobile? and so he put a Bard Pelvicol sling in, said everything was textbook perfect. I complained from day ONE, when I took the catheter home and took it out on the day he told me to, I had to go to the emergency room that evening to be catheterized because I had not learned how to self cath correctly. I was in Horrible pain and found someone to finally catheterize me.Next day I went to the urologist and his nurse showed me how to self catheterize.I kept complaining of the INTENSE pain especially when sitting and WORSE LEAKING THAN EVER but always the feeling I needed to urinate and never being able to completely empty my bladder.The doctor put me through 6 DMSO treatments, bone scans,Crts etc. of my bladder, barium enemas, blamed it on my weight which was the same as before surgery, said it was NOT his fault, blamed it on Meds I took that I also took before surgery and they were informed of.

    They did a Laparoscopic surgery 12-2001 to explore to see if there was scar tissue from the hysterectomy causing something, they did remove scar tissue and said I got it really easy. BEFORE surgery they asked my husband if I WANTED to get well!?? He said ASK! the Drs. down the hall who did the neck surgery & both arm surgeries! I had NO problems with them! My HMO at the time would NOT send me to anyone for a 2nd opinion except the original surgeon’s PARTNER!So exactly ONE year later we paid out of pocket for a 2nd opinion.My oby/gyn had gave up on me,gave me a physical therapists number & said she did not know whether it would help or not but she’d done all she could.The physical therapist was a God Send she did some physical therapy and she also sent me to a Uro-Gynecologist who examined me.He said he immediately knew the sling was in TOO TIGHT-he immediately got me in for surgery as soon as possible. Meanwhile I was taking a years leave of absence from my job of teaching of almost 20 yrs in hopes of getting a cure. So EXACTLY ONE YEAR in later in 2002 the new surgeon operated and said he loosened the sling as much as he could,he even tried some trigger point injections way up inside my vagina in the places the muscles were most tense from the constant spasms and leaking. He said at that time he knew I had some kind of nerve damage but did not have a name for it. I was immediately able to urinate after HIS surgery!

    My PT said I hardly had enough muscle tone to do a Kegal exercise. She did physical therapy on me inside and out, and she is one of the few PTS in the U.S. who specializes in Pelvic Floor Disorders and is at OU University and Clinic.

    The Uro-Gynecologist then wanted to put an Interstem Unit in my back to see it it would help control the constant spams and pain.(kind of like a pacemaker) They put in the wires without putting the unit under my skin, just taped it on for a two week trial.They never really got it attached to the nerves on my left side where the pain is the worst although it is on both sides plus spasms. After it didn’t work he took it out & wanted to try the operation again. By that time I was SICK of surgeries and was getting full Legal Guardianship of both of my elderly parents in their 80’s, my Mom went to a nearby nursing home, my Father moved into an apartment attached to our house. We were their caretakers,Guardians etc.for 5-6 yrs before their death.My Mom in 2008.My Dad in 2009.My Father had Alzheimer’s,Mom had many physical problems plus emotional ones & needed a full care facility.

    SO when I told the 2nd physician that I did not want the Interstem again at THAT time he said he could not keep prescribing me pain Meds & one day sent me a letter saying I was NO LONGER his patient. I had never in my life received such a letter.

    SO needless to say the next 5-6 yrs were very busy with attending to my parents & their matters. I finally got SS Disability after two yrs and appeals,got my OK Teachers Pension almost right away after I officially resigned from teaching which was a very hard thing for me to have to do at age 42. I had a Masters degree and worked hard to get where I was in my career. Mom passed in 2008 and after Dad died in 2009 I then thought I should put my health on the front burner again & look & see if ANY advances had been made in my problems.I looked online & saw the condition called Pudendal Neuralgia it was the FIRST one that had all my symptoms & matched up my story. Thankfully the therapist was still in Tulsa,I contacted her & she said they had indeed made strides and I most probably had Pudendal Neuralgia.I even had went to a chiropractor who did acupuncture and he tried to learn all he could and work on the Pudendal nerves but unfortunately it just made my leaking MUCH worse & only made the pain any less when the acupuncture needles were actually inserted into the nerves while I was laying on the table.

    I went to a new doctor in the summer of 2010, he tested me for Pudendal Neuralgia and said I did indeed have it and also gave me 3 injections into the Pudendal Nerves on 3 different occasions at the Hospital on an outpatient basis. They had to use a scan to find the Pudendal Nerve, put the needle into it,move it around and ask when it affected the pain in my pelvic area since it also controls the leg and buttocks region. 1st time I went I ALMOST jumped off the table from the intense pain of the needles being moved around in the nerves and it affected my left leg which was completely numb for 2 days. I told him I HAD TO have an anti-anxiety pill first before the 2nd round. So I was given Valium and the 2nd time it did numb the spasms pain etc for about an hour which he said further proved I had Pudendal Neuralgia. The 3rd time he also injected steroids with the pain deadening medication and it also lasted for about an hour. He then said I was a candidate for Pudendal Nerve release surgery.

    But the nerve release surgery he wanted me to do had a 60% chance of success, it takes usually at least 2 yrs for nerves to heal and the longer I had been affected the less the chances. I was very hesitant for them to be messing around with my spine.So told him I would think about it. I have a cousin in Minneapolis who said she and her daughter who is a nurse found mixed reviews. My therapist told me she did NOT recommend that type of surgery. Meanwhile in July 2011 the FDA had the recall/warning on bladder slings mesh and various types. I looked through my tub of medical records and found my serial number maker etc. in October 2011.Before I never found it because on operative reports it just said ____ sling. I found it on a blank piece of paper copied in a very small square on the bottom of the paper. Sure enough it matched ones mentioned by the FDA and also by attorneys who said Bard is the number one Manufacturer of defective slings.

    I then contacted my personal attorney who did my disability and she said to go back and see what he said about the FDA announcement and to see IF I went to Dr if he would also address the problems of the sling. When I went to Dr. and he examined me and said he could feel “stitches” at one of the places it hurt very badly to touch in my vagina and he told me of the problems they had found with slings of almost all types. As soon as the Dr. came in he took him aside and said something very quickly to him and said NO NO NO! and the intern did not say anything else to me. Dr. then said that the Dr. would NOT address the sling issue and he himself would NOT either because it was just something Lawyers made up to scare people. He had been contacted by my attorney for records from him that had NOTHING to do with the original operation, at least he diagnosed me with a NAME for a condition and told me I was NOT crazy. When he said he could not do anything else for me than send me to Minnesota I thanked him for his services he had done and left.

    My symptoms have become even WORSE this last year with spotting, some discharge and bleeding when I am really tensed and spasming most. The place the intern said he felt the stitches my attorney (who has a nursing degree) said in no way would they be stitches after 12 yrs and it was probably the sling trying to work its way out. When I FEEL that place it feels as if something metal is underneath the tight muscle trying to protrude. The pain is SO BAD now I can hardly ride at all in a car, cannot sit even in a recliner and am propped up in bed most of the day. The only time I do not have pain is WHEN I am in a swimming pool, Dr. said that was because there is no pressure on those nerves when I am in the pool. I will be glad when we open our outdoor in ground pool again. Because I can do PT exercises in the pool and get pain relief for that amount of time. My husband had taken me to an indoor pool for a couple of months this winter but the car ride home almost undid whatever pain relief I got though it did help my muscle tone I am sure.

    By the way in the last 3-4 yrs I have lost 100 pounds and only have about 30 more to go most I lost by swimming. People often ask if my symptoms are better since losing the weight, actually I LEAK WORSE but am still very glad for the weight loss for all the other health benefits. My condition that has caused Constant Chronic Pain for 11+ years from day 1 and now has added symptoms of discharge and bleeding?
    I am desperate as you can imagine after these 11 LONG years and the fact mine was FINALLY warned about by the FDA in July 2011 even though I had it put in 2001! My husband and I have been very affected by this matter the last 11 years, he is also on disability because of other health matters and he is 56 yrs old, different conditions that kept piling up after two ruptured discs in his lower back that he never had an operation on and he worked with for over 25 yrs. He had to have neck surgery like mine etc. Carpal Tunnel release surgery on both hand that did NOT work for him and now they say he has tendonitis and he had a shoulder surgery. This all put him over the edge the 2nd year I had my Father. Thankfully he also was able to get SS Disability and OK Teachers Pension Retirement and so could help me with my Dad who I do not think I could have done by myself.

    Wwe have to find SOME way monetarily to get funds for a procedure that has promise we certainly would try. I would trade all our worldly processions for my health back. TO have my life changed in ONE DAY at age 42 and go from an active woman who had kids and taught school to being almost a shut in for 11 years has really taken a tole on me and my family. I visit a psychiatrist who had to double my anti-depressant this last year because of all the pain etc. I also take 4 pills of 10 mg Percocet a day that just BARELY takes the edge off any pain. I WAS on Lortab 4 pills of 10 mg a day for over 10 yrs and had built a tolerance for it. I have always took all Medications exactly as directed 1 every 4 hours and each day it is usually the 2nd or 3rd pain pill that allows me to do ANYTHING and by then is afternoon. I had to go to a PAIN clinic (know why they call it that now!) and go through many hassles to get it changed to Percocet. Thank God my old Family Doctor of over 25 yrs now prescribes it because he can say I was originally prescribed it by another Doctor. He used to prescribe my Lortab also. I also have started this last year taking Trazodone for sleep which works unless I leak so bad it wakes me up and I also take Valium for anxiety because the more anxious I get the worse the spasms. By the time evening arrived I cannot sit at all and am in the worst pain. I too have especially this last year prayed that when I went to sleep that the Lord would take me home not wanting to face another day. The things that keep me going are the animals I rescued and my grandchildren who visit when they can and my kids and of course my husband. The oldest granddaughter is 5 and used to come over once a week, she has been used to seeing her Grandmother in bed many times but I loved rocking her and telling her stories and on good days could do a little with her although I paid for it for days. She still loves me very much though and seems to understand and her Grandfather is crazy about her. Thanks SO MUCH FOR reading my LONG letter, I looking forward to ANY contact soon with a possible doctor. You look online and 99% of the time it is forwarded to a legal firm. I would appreciate ANY suggestions, names and help. Blessings to you all. To finally know I am not alone and for the FDA to make the announcement a few months ago has helped me explain SOME to people who will really never understand but do ask. My story did prevent my sister in law from having one and she is using a pessary and says it works great and can be taken in and out when she wishes! So I am glad I changed ONE person’s mind and prevented them from the many years of torture I have endured physically and mentally! Thanks and Blessings! Robin

    Reply
    1. lavalinda

      My God, you have been put through so much pain and heartbreak and I am going to send you privately the help you need. Your case is so bad I would only trust one man in this world. For doctors to say that lawyers have cooked this up to scare women is a TRAVESTY. Any doctor who says this should be ashamed and worse.

      Reply
    2. Ruth

      Robin your suffering is unimaginable and the heartlessness of how you have been treated is beyond belief. I am in tears reading your story. Thank God you have found this site where Linda and others will do all in their power to help you. I cannot imagine how you have endured this so long, but take heart, there is hope!

      Reply
  2. Meshedup05

    I so understand what you are going through and I am so deeply sorry that you are having to go through this. I wish there was something I could do to help you but we are in the same boat,. I have had the problem going on 7 years now. MY heart breaks for you as I can relate to everything that you have said. TO think that the Dr said lawyers made this up to scare women, wow. But now that it is out we are like Lepers and can’t find anyone to really touch us. I pray you find relief soon and that God will give you the strength you need to continue on.

    Reply
  3. cathe

    Your story really pulled at my heart. I so do truely understand what your going thru. I had the Marlex mesh placed in for a prolasped bladder and retro in April of last yr. I was told at 1st he uses the Avaulta mesh, then I find out a different mesh all together had been placed in me. It don’t matter what kind of mesh it is a mesh is a mesh it’s all the same in my book. I was in extreme severe pain the day I came out of surgery after my dismissal of being in the hospital I was back in the ER due to extreme pain uncontrolled by pain meds. It took me 6 months to get in after my 6 wk check-up, to convince him I needed to see him I HURT !! All along I was told to take Aleve. That I was being a diffcult pt. This dr wanted a mri done and trigger point injection into my apex. BTW which nerve to inject did they know.. I felt a huge red flag. I can go on and on as all of our stories are basically the same it’s the mesh causing the pain. I’m going to OSU to have this taken care of.
    I do pray you get relief soon and God to carry you and all of us thru this mess that SHOULD OF NOT EVEN BEGAN..

    Reply
  4. Robin Robbins

    A BIG HEARTFELT THANKS TO EVERYONE WHO REPLIED AND ALL WHO read my letter and are suffering also. Linda was KIND enough to contact me personally yesterday. I told them a little of my history, the fact I was ON MEDICARE ONLY. I live in OK but made an appointment for an exam on June 26th. Just to have taken an actual step makes me feel hopeful and that all the prayers I am trusting God to come through with the finances we need to go there, we have taken steps to sell some things we are trying to right now and have for a few weeks including a rental property. I asked for prayer and discernment a few weeks ago from friends, family and church which I feel were perhaps answered. I was surprised to be able to get an appointment that soon. I am trying to make this experience a chance to reach others as I did my sister-in-law who decided NOT to get the sling because of my story and for which a pessary is working very well. Also I KNOW if I had still been teaching full time and my husband working full time we would have probably never had been able to care for my Father who I got a much closer relationship with than I ever had. It was so sad to see a man who was always my strong tough Father and a former WWII pilot to get lost in his own back yard. A disease that takes your loved one away a little at a time. But he grew much closer and came to know the Lord the 2nd year he lived with us ar age 83 and this was a man who used to tell people from the church I grew up in to take him OFF the !$#@ prayer list.

    So I saw a miracle happen before my eyes. Even those last 5 yrs with Alzheimer’s my Father CHANGED attitude wide and behavior wide LIFETIME habits with people and the Lord. EVERY day he said he had LOTS to be thankful for, he always thanked my husband and I EVERYDAY who he did not know what he would do without and the Lord who had blessed him so. He became like a child appreciating the flowers and life’s simple pleasure and beauty such as the clouds in the sky he was flew threw many years ago. I have a ME page on Ebay that has a way to contact me also and shows pics of me and my Father and family. On the ME page I have share with women and all people the problems I have gone through Physically and also my Father who had Alzheimer’s I hope I have been able to reach out a little to those who need it as Linda does such a wonderful job of. I cannot thank you all enough, my husband read me all the comments that came in last night and I teared up and he certainly was moved also. I told Linda he would like to hear from any husbands out there who have been through this with their wives and understand the many changes it makes in a couple relationship in so many ways. Again GOD BLESS EVERYONE-MY BEST WISHES FOR YOU ALL. Blessings, Robin Robbins

    Reply
  5. Robin Robbins

    I want to thank the outpouring of replies, phone calls and contacts even to my husband from David who was SO nice to call him. I knew my husband would talk to him but never make the call himself first. It helped him too to know there are husbands out there who have and are dealing with this and David is fighting very hard for his wife and all the other women affected by this condition.
    Linda contacted me and I heard from another patient Patricia who had already had a surgery and said how good he was and read some other reviews all good and all from women so thankful to have found him. I have an appointment on June 26th to go see him and then he will be able to tell me more and make a date for surgery I am sure. If not for this site I am not sure I would have found him or it would have sure been trial and error. Found out the surgeons I had thought about just took out pieces they could get out and then put THEIR new improved foolproof?!? type sling in. NO THANKS! I am VERY excited about going, my husband is too but is worried about HOW we are going out there for the visit and then back for an operation, funds etc. But for him to get part of his wife back after 11 yrs of an 18 yr marriage would be a prayer answered. PLEASE continue praying for HIM, he does 90% of things needed done and has pain himself in other areas. He had to get a shot into each arm the other day, think he is overdoing it trying to do it all. Without him I am not sure what I could do.. But I am sure God will work it all out, he hasn’t brought me this far for nothing. I have read other women;s stories of HORROR and pain and treatment NO HUMAN being should have to go though. Last night I was contacted from a lady at church asking me what kind of sling I had. I told her but said it did not matter they are ALL BAD. She was scheduled Tuesday April 3oth for a sling, told it would fix her leaking and everything would be fine. This good friend of ours lost her husband last year, had a knee replacement and a few other surgeries she got through and I begged her NOT to get the bladder sling surgery- It is far better to even wear depends or the thick bladder pads the rest of your life than not having any life, plus I told her of the pessary my sister in law uses without any problems and it really works for her. Gave her this website and several others to look at and the name of my PT who could have helped me immensely if she had got to me before the Dr’s had. THIS friend told me she had pre-op the very next day and was going to cancel all of it. I HOPE she did, to have saved ONE person from this tragedy makes me feel like I am here for a reason.To know they still just put them in without any warnings, qualms etc should be against the LAW! I HOPE and pray the government and FDA do something to STOP this barbaric treatment of women and then the belittling of them afterwards, I have a strong suspension if it was a common surgery that affected a man’s private parts it would have had a stop to it QUICK and taken off the market quicker. I tell everyone it doesn’t matter what kind of bladder mesh sling you get it is like a red or blue Volkswagen they BOTH are still Volkswagens! GOD BLESS YOU ALL FOR YOUR SPEEDY ANSWERS-to know I am not alone and to now at least SEE a light of a very long, long tunnel I have been in has gave me hope that i have had for years. God bless you all and best wishes for better health for everyone. Blessings, Robin Robbins

    Reply

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