For almost two years my hubby and me have lived with this inconvenience.  NOW I'm truly frightened!!

The threat of infection, bleeding, all of it scares me so badly.  I have noticed a burning pain down my leg, the same side the mesh is eroding through my vaginal wall.   I hope it's something temporary :(

I also wonder how would you know if the mesh is eroding into the bladder?  I know if I sit in a certain position, I feel pain somewhere in that area, but it's hard to pinpoint it.

It's hard getting scheduled with the specialist I found.  He's done this removal before, and I just don't trust anyone else to do this.  I'm waiting for his office to work out the details and they are taking way too long for me!!

Of course, the surgery will be hard I'm sure.  It's better than the risks of not having it done.  Just the thought of what he's going to do scares me to death!

If I'd only known when the ob/gyn said "it's the little miracle cure".....to run, fast. 

I have decided on *partial* removal. Only because the uro/gyn specialist informed me taking the entire mesh out can be very difficult and risky.

I hope that he can remove the exposed mesh, suture me up, and NEVER have an issue with this mess again!!

He said he's had many successes with this approach, with the exception of one, which ended in total removal.

I'm anxiously waiting to hear from his office about scheduling the procedure. He said it would be about 30 mins. give or take, and under general anesthesia. Just in case he gets in there and has to do more work than anticipated.

Thanks for your response.

I am going to the Mayo Clinic, Jacksonville, FL to have my prolift anterior mesh removed. I have been in constant pain since my surgery Oct 13, 2009 and a 2nd surgery Dec 15, 2009 for erosion on the bladder, they punctered it, had to have a cath and ureter stint for 2wks. Now I am to go to the Mayo Clinic Mar 15th for a consult with a urogyn to see about having it all removed.  Also, the UCSF Medical Center may have someone that can take it out for you.  This has been a nightmare for me, I am 49 and depressed about it and could kick myself for trusting my gyn for this "cure" for bladder prolapse.

I would like to know the urologist name at Mayo CLinic in Jacksonville, Fl. I have had 20= surgeries since 1990 to remove this horrible mesh that is embedded everywhere. I have once before had the mesh embed itself within the bladder and clasify of which the Dr. shattered it (much like a kidney stone) and it worked then I was irrigated for 24 hours. Another time the mesh clasified on the outer part of the bladder, the Drt. removed it and a slice of my bladder. I have had the mesh removed 3 times from vaginal wall. Just recently had CT scan and mesh has calsified once again inside of bladder and I feel that there is mesh on the inside vaginal wall once again.

I am trying to find a Urologist in Florida that is very familiar with removing this mesh. Any help from anyone would be greatly appreciated.

the sooner the better

Thanks everyone.

Gail

Hi, was your surgery sucessful? If you could reccomend specific Doctors it would be so helpful. A family member is in constant pain and needs her mesh completely removed but is having trouble finding a doctor who seems to know much about it. 

Thank you!

I am having problems with my mesh and am looking for a doctor in the western states to remove this. Can anyone give me any help on this. I am hoping to find someone who has had experience and a good track record. My name is Vicki

I had my first Surgery July 2009, second October 2009. Since then I have had problem after problem. Today and yesterday I feel like I am in labor and that is impossible. On the few occations that I have intercourse with my husband, about 1/2 inch down his penus, the mesh cuts him and he bleeds. I hurt, my back, legs thighs and sex life is distroyed with the one I love. I bleed often, my stomach has 3 places that pull and hurt, I am very bloated and have had weight gain just in my abdoman area. I look pregnant at 48! I have requested doctors records and have an attorney. I no longer have insurance and I do not feel I should have to pay for the repair and have my life upside down. cant een pick upi grandchildren without bleeding...I dont want money..I want to be fixed right and my love life back with my husband. I am now in Montgomery Al, had my original surgery with my doctor of 20 years in Henry County Ga. I dont believe it is the doctors I believe it is the inventor of the mesh....and they need to fix it.

I was told there was a piece on each side of my pelvis that my doctor could not get and I would have to see an orthopedic surgeon if it caused any problems later.  Well it's seven years later and I think it may be the mesh that is causing my back and hip pain. TOT mesh is what was used in my bladder surgery. Have you ever heard if that kind is attached to the pelvis?

Thanks for the info.  I would really appreciate it if you let me know how things turn out for her.  I hope she hears some good news!  Since I work in the health care field I have always thought it was a back injury, and it may be, but it is nice to know if they don't find anything that I can look into this whole thing further. 

I am reading all your stories  We are trying to put together a group of compassionate ob/gyns. Sorry no luck yet. Unfortunately there are no miracle cures. Thousands of womwn are victims of this. There was just a meeting of the FDA last week to review additional warnings. This comes late,I know. There is an opportunity for financial compensation. This, of course will never really compensate for the agonies i hear on a daily basis. However I welcome all contacts Transvaginal mesh helpline 1 888 733 5342 I think it will be ok from canada and the US  Our main location is Florida but we handle cases all over

Lawyerreferralservice@yahoo.com

Thank you so much for the reccomendation . I am finally getting a referral. Im tired of all this lawyer talk when we need a doctor more. Wonder how many yrs all those law suits will take anyway. How long was recouperation and was the doctor able to remove all the mesh? God bless you

Gail did you find someone qualified in Florida. Dear God I hope you got the help you needed. Im in florida also and need a real exspert.

Hi, I am 39 and I to had mesh bladder suspension TOT in June 2011 I have been in Pain since,I had bleeding so bad right after that I had to be burned inside   the vigina to stop it in the dr's office 3 days after ,have had Lower back pain that went into a burning pain, Left groin going numb, Upper buttock pain,pain with sex, Hip pain, left leg is giving out and I have fallen many times, I had bladder inf. You are not alone. It is the mesh that is causing it !!! and don't let anyone tell you different, I will try to make a long stroy short but I have seen many Dr.'s over this, I did tell each dr that I had this surgery in June and Have had this problem since, I have had MRI's on brain and back, Ct of back, venous duplex to rule out blood clot in leg, EMG. I was told I have mild osteoarthrosis in my back, went to back sep. not knowing about the side effect of the mesh, I had 2 ESI injections in my lower back that made me hurt worse,and that Dr. wanted to burn my nerve endings I said no not until I know forsure, I have been givin pain pills that I don't like to take, But some days the pain just makes me cry, I did call my Dr. that did the surgery and I talked to him he asked what the MRI showed and he said he belives that is what my pain is from, he said he never heard of people having pain this long from the surgery, and he hopes I feel better, I then decided to look on line about pain in lower back and buttock after TOT and found the FDA warnings,I work for Dr.'s and told them what I found, they said it needs to come out, Yes I work in the medical Field. I then called his office back and was told he was on vacation and they could not see me for over a month. I find it hard to belive that no one is covering for him. I called my  PCP that had me seen by another obgyn that said he belives it is a side effect of the mesh,but he dose not do them. then went to a urogynecoloist, that did a cysto on me and a udt witch proved I was still leaking and I am leaking worse then before I had this surgery, He said he wanted me to try antidepression meds,for the incontinence,he dose not belive the sling is causing my pain, but if the meds didn't work he would take it out, I said I would not take them,I did not needs meds before this surgery and told him to just take it out. When I asked him how many slings he has completly removed he tried getting out of answering me I asked 3 times and he fininaly fessed up that he had not removed any, I told him thank you for his time but I want to go to U OF M,and would like for him to put in writting that he did not think the sling was causing my pain he was not happy at first, but I told him this is my body and he is not the one living like this and I want it out!!!He siad he would put in writting that it is "unlikley" see he changed it now it is "unlikey" so it could be,  see I did my research before I went because I was tired of these Dr's making me think this is all in my head, i have felt as if there is no help, the Dr's I work for belive it is and they did help me get my Appt. at UofM with Dr. Dee fenner I am having surgery Feb10,2012 to have it all taken out and a sling made out of my own tissue she said what I am having is a classic side effect of the mesh, she has seen it alot and done alot of these surgery's she knew right away and when she did the vaginal exam she touched the sling and the pain was 3 times what I have been feeling, it went right through my butt cheeck to the groin, so  please don't feel like there is no hope because there is, I do understand what you are going through don't give up and If you don't like what you are hearing go some where else it is your body!!and your right, Try to go to a university hosp. where you live these other Dr.'s know how to put them in but do not know how to take them out. I was told by Dr. Fernner that the mesh in my thighs will have to stay they can't remove that because of to many blood vessels I did not even know that Mesh is in my thighs she seems to think this will take most of the pain if not all of it away. I am Happy that I have found Dr. Fenner and her Asst. Dr. Smith, she said to me I do not want you to think you are Crazy because your not it is a side effect, I was also happy my Husband was with me on this appt. so he can see what i have been going through, and understand it a little more. and he dose now.  GET THE MESH OUT... ALL OF IT.. IT IS BAD STUFF !!!   I will let you know how I am doing after my surgery Good Luck, The FDA needs to take this stuff off the market it is making people's lives a living HELL.

Ok so it's been 2wks since I had the Mesh removed, I am slowly starting to feel better, If you live in Mich or are willing to travel you need to see Dr. Dee fenner at U of M she is a great Dr. She removed all the mesh except for what is in my thighs, She can't remove that because of to many blood vessels and nerve's she said that the mesh in me had turned inside out and twisted and errored through my vaginal wall, she was able to get it out and repair, then she took tissue of my own from my lower ab. ( Pelvic Region) and made a sling out of that and attached that tissue to the lower end of my spine. The surgery was about 3 hrs. then in recovery for 2 then I was able to see my husband and family. I am so blessed that I have such a wonderful support team, and that I found such a wonderful Doctor. I will be seeing her again in 6wks. My prayers go out to all of you that are suffering from this.  I know first hand the helpless feeling you are having. This Mesh took alot of my life away it was hard to listen to my Son's 14  and 11 tell me mom you are no fun anymore it broke my heart I was very acvtive with my boys and then mom just couldn't do it anymore, I just hope that now I will get my life back, Only time will tell.

Hi,

Did you have this surgery?  I am trying to find a surgeon to remove this horrible mesh in Chicago.  Do you know of someone?

Thanks.

Terri

if you found a doctor in florida who will remove the mesh, please let me know    I have been suffering with that nerve pain inside my right leg between vagina and leg (that hollow spot); burning nerve pain down inside right leg, under right buttocks, and back by that bone you sit on (ischium?)   I need to find a doctor who will remove the mesh.  the doctor who put it in says "Oh, it's very difficult to remove."   And he suggested Mayo Clinic.   Will they remove it at Mayo Clinic? or just give you another excuse about "oh, it's too difficult to remove." and of course after waiting six weeks after surgery, we tried sex.  WAY WAY TOO PAINFUL!   had to stop.

I had my surgery on Sep.3,2010 and was told I could return to work within 4 days. I was in the worst pain ever. Worse than having childbirth. I was bleeding before the surgery for 2 weeks, my dr. told me it was normal. I thought ok well if the he says so...then the bleeding came and went...for about a month I said it's not normal for me to have a month period. So he checked me and said I had cysts on my cervix. He removed them. I asked at a later time about my bleeding. After I had my surgery that I was on my period after I healed a bit and it lasted for 2 weeks, then I was told it wasn't normal and for me to go to the ER. I felt as if this doctor just wasn't giving me the right answers I needed. I now have pain on my right leg going up to the right side of my hip and my butt feels like i had a shot. I have severe back pain, bowel bleeding and it's like a heavy period when I have bowel movements. I feel like my body is just weak and I haven't done much since the surgery. I am always tired, sometimes i have energy, but it's just not the same of how I felt before the surgery. I am so upset because he has left the country, the staff are all rude and I wanted to see my records, i was told I had a bill that was passed due and i couldn't pay it so they wouldn't give me my records. I am so upset and not knowing about this doctor only being around the area for 3 months and has an unknown years of practice when I looked him up just has me worried. I don't even strain myself when I have bowel  movements and still bleed heavily. I do strain sometimes just to urinate. I sure hope this will all be taken care of by a law firm who is doing investigating on my case, because I am getting nowhere with this doctor. Good luck with yourself and don't let pass the time to get some help that could get you what you deserve in a suit that has been filed from many women going through this. I just want to feel normal. I was not able to walk for a week, when the pain started, then it got better, and now it's getting worse a long with my hip and butt cheek hurting. 

I just had my mesh removed. It had totally eroded into my urethra.My urologist said it looked like a birds nest. He sent me to the Mayo Clinic in Jacksonville Fla.

This was just the place for me. My dr Anita Chen was wonderful. It;s not an easy surgery to have, but it's great to know your in the right place, Everyone was extremely nice. All procedures were done promptly. The hospital was extremely clean and you felt like you were the most important patient there. I go back next week to have my catheter removedI should have done trhis 2 yrs ago, but kept putting it off. As a result, the mesh had embedded more and more into my urethra,causing my surgery to be more complicated.  Good luck and Gd bless. You will be in good hands,   DONNA

Magnolia, I dont know where u live but i have been seeing a urogynocologist in dallas texas by the name of Dr. Michael Carley. I experienced the mesh erosion in 2011 and have had 2 mesh surgeries for extraction (removal). Dr Carley was a God send for me. I to was scared but am able to move forward because of dr. carley. He is so wonderful with a great bedside manner. So caring and understanding and explains every step to you. I do suffer from an autoimmune disorder now due to this mesh mess but am able to cope day to day.  If you need any more info please feel free to email me at kelleyjetk@gmail.com  Hope this is helpful.

Please update me on your surgeries.  I have vaginal erosion and am waiting for an appointment in either Birmingham, or Jacksonville. 

I have pain in my lower stomach area, low back pain, and signifigant spotting that occurs for days, then none for a few days. I am 61 yrs old, and have not had sexual intercourse for over a yr, because of the pain.  I had a DA VINCI robot assisted surgery in 2008 for Pelvic Prolapse.     I have been treated  by a urologist for bladder infections, had urethra exams and a lower abdomen CT, but was not diagnosed with bladder erosion from the mesh until I visited an D.O. and GYN.

I have been so happy that they have not found cancer, but I do not know the next road of this journey.  My question to  those who have gone through this removal is 1.- How long did your  surgery last?   2.  Did it require hospitalization?   3.- Did it require a catheter and for how long?   4.- What type of problems are you still experiencing?  5. Have you been able to have intercourse without pain?

Thanks for your info.

Hello my name is Sereda I have appt to go out to LA to see Dr.Raz he is a good doctor here is his phone number 310-794-0755 he is aurologist .Thank You

I finally went back to my original dr out of desperation (a urologist), he could not find but a very small piece of mesh, about the size of a mosquito. All the mesh I had in the past year had absorbed into my body. I don't know why, or how, unless my body finally accepted it as part of my body and not a forgien object. However, my bladder was bothering me horribly because I have interstitial cystitis and he had to do a cystoscopy and hydrodistention, which I have had multiple times with good results to ease my bladder pain. He also ran a scope into my vagina and found the tiny piece of mesh and removed it while I was under. He had a lot of blood drawn to do some testing of my hormones which were all messed up. He now has me on hormones that are making feel better. I still have my pelvic pain and always will due to my IC (Interstital Cystitis) or (Pelvic Pain Syndrome).

I don't think you mentioned what type of dr did your surgeries, but maybe you need to see a urologist, or go the other way, ob/gyn, which ever you haven't already seen.

I was very angry with my urologist for a long time, but once I got over myself and realized he had put the mesh in me to help me and he was the only one that really knew where it was to remove it, I went back to him. My husband by my side, with questions and a notepad. My trust has been restored in this dr and he knows that I am a case to handle due to all of my illnesses, so for him to take on all my problems and study everything together, gives me even more faith. No other dr I have been to goes that extra mile.

I may still need a vaginal reconstruction eventually, but I have to heal right now and let the hormones do their thing, and I've been feeling a few twinges that I haven't felt in a long time.

Good luck with your problems, I hope you eventually have some hope, just don't give up and don't back down when it comes to the drs or their nurses. Demand the care they would give their mothers.

God Bless!

I am having my mesh removed on Dec. 15 2011 by a Urogynecologist in Toronto. I have had five or six "repairs" (trims and skin grafts to cover the erosion) but they have all failed. I have heard that the removal can cause paralysis and horrible complications because it gets very stuck to the tissues.  I am afraid but feel I have a good surgeon.  I will let you know what happens.

I wish you the best of luck.  You will be in my prayers.

I am the person who finally tried sex for the first time in my three year relationship... Hadn't engaged because of the horrible jagged mesh and pain inside.  It was about three weeks ago when we finally tried.  We barely even started when I had a terrible pain and started bleeding.  I appeared to have ripped in two which was totally abnormal seeing as I am a grown woman with two children.

I must admit that the pain subsided and I didn't go to a doctor right away.

In the past weeks since this happened I have had fevers and chills and a lot of vertigo.  I finally went to the doctor today and mentioned the incident, not knowing if it was related.

She checked me and said I have a "sinus tear" similar to what would happen during childbirth, and my pelvic floor all tore apart where the mesh is from a previous repair, and also in the top where the TVT sling is.  The broken top wall

has caused my pelvic organs to prolapse and herniate.  On top of this I appear to have a full body infection going on (waiting on blood test results, but have the symptoms).

I also need a CT Scan to see the extent of organ prolapse and the degree of infection.

All of this with barely two seconds of penetration.

As it is, I already have a surgery booked for December 15 to have the mesh removed after 12 years.  Now it will be more extensive to repair this new nightmare.

This is unbelievable and I am livid.  These mesh makers need to be held accountable.

When my husband left me (because of the sharp mesh and my inability to have sex) the divorce and custody settlement cost me over $100 000 and I spent

five years in court.

I don't have the financial or emotional strength to deal with another lawyer.

As it is I have post traumatic stress disorder from everything I went through in the legal system.

I don't have the strength to deal with

litigation, although I wish to heck I did.  I know it would do me in.

K

Hi,

I do have a good urogynecologist (finally) who is taking out the mesh on Dec. 15. The problem is she isn't replacing it at that time. she said we have to do one operation at a time to assess whether I even need a new sling.  SOmetimes the body has corrected itself on its own.  She also said if i do get one down the road it will be pig tissue (?)  Wait and see, I guess.  I can't believe this. I've had about six repairs and 12 pelvic surgeries in total.  Here we go again.

I went for my pre-operative appointment and check up today.  My surgery for mesh removal is on December 15.  I was told that she will take out the mesh in my vaginal repair and the mesh in my TOT sling.  Both have been there for seven years, with five repairs done in the past.  I am so scared.  She said I will need to be off work until at least February.  I just had strep throat for two weeks and missed two weeks of work.  I thought I would go back to work after the new year but NO.   I am really worried.  I am getting the bovine tissue put in to replace the vaginal mesh but nothing at this point to replace the bladder mesh.  Apparently they might give me a shot of something in the urethra that makes it stronger (?) but this would be a few months from now if needed.

Prayers please for my 12th pelvic surgery.

Damn those mesh makers.

Kittycat

Hi,

It's Kittycat again.  I had two kinds of mesh fully removed last week (vaginal repair mesh and TOT bladder sling mesh).  It had been in me since 2004 with five other mesh "trim" operations since that time. The medications have worn off and I am in a lot of pain now but it is still worth it, just knowing this horrible product is out of my body.

My surgery was four days ago and as far as I know all of the mesh was removed from my TOT sling and my vaginal repairs. 

I have bad cramping in my front and back (like labour pains) as well as from the pain of all the incisions.  I am sleeping a lot and mentally preparing myself to be in bed for a month or two.  I am still thankful that I was able to have the removal done by an excellent doctor here in Toronto.  

Originally I was supposed to have the vaginal repair mesh replaced with an organic bovine tissue to hold me together again, but apparently there was so much mesh and so much damage that my doctor had to cut away big sections of my vagina (Ew???!!!)  There was not enough of my own tissue left to attach the bovine tissue to it. Apparently, the surgeon needed to do a lot of tissue stretching just to pull my own body back together again once the mesh came out.  This will make it fragile and full of scar tissue.

Regarding the TOT Mesh, the plan was just to remove it and not replace it with anything.  It was removed.  I am still having incontinence which actually got worse during my time with the TOT sling. My doctor is suggesting collagen needles into the urethra to engorge the tubes so I don't leak in the future.  These needles will be $1000 each and not covered on my insurance.

I have been told I will have a lot of scar tissue (I have had five surgeries to trim the mesh in the past, so I am full of scarring).  I don't know if I will ever have sex again even with the removal.  There has been a lot of nerve damage from all the surgeries as well.  So I am a virtual mess "down there", but I am thrilled to think it may be out.

Please, do not allow any woman to even consider having a mesh implant.

I will keep you posted on my recovery.

K

help!  i am having problems too.  contact me someone.  i need a surgeon in the houston area that can remove this mesh. heemomgma@gmail.com.

Hey, Cathy!  It's revjay again and I would like to give more hope than what I am reading from these comments.  I am seeing a RECONSTRUCTION specialist because I pray and hope to have a vagina recreated if I do not have enough left to have one.  And they can use YOUR OWN tissue to make a sling, not a pigs heart or whatever.  My 2 insurances have covered me 100% and one is Medicare.  Also, there is a website TRUTH IN MEDICINE that talks and is committed to fighting to get mesh off the market.  I urge you to find a TEACHING HOSPITAL and reputable expert who does nothing BUT mesh erosion.  Blessings - Revjay  p.s. I have not sued and my doctor did not put in the notes what mesh he used.  My surgeon told me that I have clear mesh and they can't see it and lawyers have tried to have it analyzed but still can not tell.  It's a journey and don't walk alone!  Connect with others and stay hopeful and strong.  There IS HOPE.

revjay,

thanks for the input.  i have recently found out that i have a recurrence of melanoma cancer so my mesh problem is going to have to wait for a while til i have my pain come back.  then i will have to contact my urologist and see what she can do for me if anything.  i am so devastated about this whole thing.

Yes, that's "normal".  That's one of the major complaints that we all have.  My ex-husband called me "snaggle puss" and "barbie" (barbed wire) before he up and left me.

Lovely, huh.

I had the prickles trimmed several times over several years but it kept coming back.  I was told they couldn't take it all out.  I finally found a good doctor and had the entire mesh removed last December.  It appears to be gone and I feel better, but I still can't have sex.  It's been 8 years now.  It is just too tender there from so many surgeries, and when I try I basically fall apart like I am shredding.  I rip and cause more damage.  So I am now celibate because of this stupid product.