‘til Mesh Us Do Part
February begins a month when we show others that we love them and they show us. Lately I have reached out to men and women I know and asked if they would like to share how their love for their partner got them through their mesh ordeals, even though it has been a very hard struggle. I knew one couple who I believed would participate, who have struggling through fifteen years of mesh complications and keep surviving together. So I asked the husband what it has been like for him and asked him to write as honestly as possible. He was afraid to for fear of hurting his wife, but did agree to do it after he spoke to her. I knew they had gone through so much together and I did not want to add to their anguish by getting him to write to share his experience, but I also felt it is very important that we don’t take for granted that this affects the men we love as well as the women who are injured. His wife agreed he needed to write out his feelings and has backed him all the way.
I am sure when women are diagnosed with mesh health issues they must wonder if their marriage can survive, especially when for women who are seriously damaged by mesh and may not ever be able to endure sex again. So I hope this answers the question, “is it possible for a couple to survive such traumatic events over a long time of dealing with an issue that no doctor they went to has been prepared to admit what has happened to a woman’s body?”
When you read this I want you to ask yourself these questions. What about your partner? How are they dealing with all this? Have you ever asked directly how YOUR partner handling all this? I have no doubt you wonder, even though the mesh pain often overwhelms your entire day. I am sure you often can’t think of anything else except how to get the mesh out, and you may not notice how he is feeling or dealing with your agony.
Any marriage has ups and downs and it takes two people to keep it in tact and have an open dialogue. If a marriage is weak before mesh, it will probably not survive because of mesh. But many men have difficulty in talking about how they feel. The hardest part of all this is that women are ignored over many years and their issues become vast when other health issues follow the mesh implant. Another problem is that doctors often treat women as if they have mental issues and over a long period of listening to this, their family members often feel they truly do have them. So mesh becomes a serious stigma in any relationship.
To get a mesh complication diagnosis is often filled with difficulties. Travel far from home can be complicated when you cannot sit and is costly. You can’t fly if you can’t sit for a long period. So how do you do this? All I can say is it takes a tremendous amount of love from your partner (or grown child) to love you enough to do all they can to help you live a better life and not die in agony.
Although this couple and I have never actually met, I have remained in contact with them over the past few years. She contacted me not many months after I began writing about my own struggles with mesh and I first spoke to herover the phone and then spoke to her husband when she asked me to. I told them both what other women were telling me, to go to UCLA and do it any way possible if you want to survive this horrendous agony.
When they told me she could not sit and over time had become completely bed ridden, I did not know how to help them get to UCLA. At that time I did not know any other woman who had pudendal nerve damage. Since then many more have contacted me. However, when I spoke to her husband I recognized he was willing to do whatever it took to get his wife the help she needed and I did what I could to support them through it. I knew from that moment after talking to both, they were determined and would get out there no matter what it took and I did what I could to help to find a place to park their motorhome.
Has any of this been easy for this couple? No it hasn’t. But I can tell you that determination is 90% of how to fix a problem. Lying in bed saying things like “I can’t” to yourself is self-defeating and nothing will be achieved. Is there a simple answer? No there isn’t. To travel across the country was their only way of getting to UCLA and having little money to spend was another drawback. But they fought against all odds to do it. She wanted to get out of bed again and have a better life and he loved her enough to try to make it happen. Together they became a force and a stronger will to achieve a goal.
I am now sharing his words so that you can see what it is like for one man to continue this long journey with the woman he loves. Here it is.
“Most fairy tales start Once Upon a Time but this is not a fairy tale. This is the story of a man and a woman who after years of heartache and disappointment in past relationships found each other and fell hopelessly in Love. It was if they were made for each other and had been searching all their lives for what they found in each other. Sounds pretty mushy doesn’t it? Well it was and then came MESH.
Just one other added point before I talk about the effects of Mesh on our marriage. When I walked into my wife’s home I was 90 days sober and one step from the grave. I told her when she let me in her home I wasn’t leaving no matter what. I have lived to regret that statement at times through this struggle. My wife wants me to add she at that time had 2years sobriety.
After we started dating, most of our “dates” were at AA meetings because we knew that had to be Number 1 in our lives for our kids’ sake
and ours. Without Sobriety all ideas were doomed. As of this date I have 22years Sobriety and my wife has 24 years of Sobriety. All done ‘One Day at a Time’. So in spite of us- God was good to us. We have three children and we have been allowed to live long enough to see that they have all became fine adults and given us much humor in the process of watching them grow up. Two have so far provided us with beautiful grand kids. 2boys and 2girls. I believe only because of our commitment to God have we managed to stay together through the MESH-tastrophe and the years before mesh happened. We both knew we had to do things differently this time around in our marriage to make it work. So it took a combination of Family counseling for Years, Alcoholics Anonymous regularly, advice from people who had gone down our road and stayed on it and we all got involved in Church again and stayed involved. There is no such thing as the Brady Bunch.
Then after seven wonderful years the mesh-tastrophe began. As with most women who have had a hysterectomy her bladder began to fall. So
she went in and was told she needed a cystocele repair to tack up the bladder. The OBY GYN (who was the same Dr. who did her hysterectomy) recommended she see an Urologist, even though she was having no real problems leaking urine. He checked her and said he would just be on “stand by” during the cystocele repair, never telling us or discussing ANYTHING about a “mesh/sling”. Meshtastrophe began the day of the cystocele surgery. The urologist did NOT just “stand by”. He put a mesh/sling in my wife that included hardware screwed into her pelvic bones.”
I have to interject here. This sounds like a collusion between two doctors who wanted to experiment with a new product on the market. You will read that this was done BEFORE the FDA approval and these two doctors needed to be sanctioned for using this woman as a human Guinea pig.
“When she came to in recovery she looked at me and said “Something is wrong!” I asked “What is wrong?” and she said “I Hurt!” My response was “It is supposed to Hurt, you just had surgery!” But she had been through Several Major surgeries before as I had. So she knew this was different as she said “Not like this!” and was she ever right!
Then the horror began. The Urologist who put the mesh in, never in my memory ever said anything about it and for sure never said it was not even approved by the FDA at that time! All he kept saying was that he did a textbook surgery. Well I now know that they need to re-write the textbook! But because my wife and I both were raised by older parents we wanted to believe the Doctor knew best. (We were SO wrong.)
That man put my wife through numerous torture tests to no avail. Then he and the OBY GYN did an exploratory surgery thinking scar tissue from her hysterectomy might be causing her pain. (No matter that any scar tissue caused NO pain before the mesh was put in!) Then he had the audacity to ask me if my wife “wanted” to get well before she went into the surgery! I admit there was a time when I wondered about his meaning? But for the life of me I can’t believe any woman would pick that area of her body to fake an illness!”
Many of you will recognize the kind of treatment this woman had when she complained of continuing pain.
“At that time my wife and I were both still working. But after a devastating try at teaching the 1st semester of school after the June surgery, then exploratory surgery that didn’t work, she took a 1year leave of absence to try to get well. She was hoping and praying, that somehow, someway, someone could help her get her life and mine back and all would be well again.
She then began Physical Therapy when the Oby Gyn got so tired of her complaints she said “I can’t do anything else for you!” “Here is a card for a physical therapist.” She also said “I don’t know if this stuff is any good whatsoever but I cannot help you anymore!” I must admit after seeing her that the therapist did seem to know more about her problem that ANY Dr. we went to and her reports made more sense. The sessions with her therapist actually helped lessen the pain for a short time.
The therapist then told my wife about an Uro-Gynecologist who had a lot of experience. The only offer the other doctors had for a 2nd opinion was for my wife to see the Doctor who worked in the very same office as the one who implanted the mesh in her. We decided not to do this. So about a year after the mesh was put in her, we paid out of pocket for the new Doctor who said she needed another bladder surgery as soon as possible because the mesh sling was way too tight. So this Doctor supposedly tried to loosen the mesh sling during another surgery, which was something we learned years later was one of the worst things that could have been done. Plus it was later noted during removal he did NOT do what he claimed he would do! But never the less, we again thought the Doctor knew best. After that surgery didn’t stop her pain he tried to put in an Interstem implant but missed attaching it to the nerve on the side that bothered her most. So as soon as he saw she was no longer willing to be a test subject, he wrote her a letter dismissing her as his patient.
After these surgeries, our Primary Doctor continued the pain meds she was on and she could function relatively well. At that time if she laid down it helped bring the pain level down, but without being able to sit as teaching required, and constantly leaking, she had to take early retirement from teaching. She also began the tedious job of getting Social Security disability, because she was disabled. We were fortunate she found a woman lawyer to help, who is still our personal lawyer today who was once a Nurse herself for many years. She was very good at getting Social Security Benefits early because of disability. Then not long after doing this my wife had to go to court to get Legal Guardianship of her parents who were both sick. We cared for them the next 5 and 6 years or our marriage.
About 3 years into taking care of her parents, I had to take early retirement because of several surgeries I had had. Although it didn’t seem like much of a blessing at the time it was because I was there for my wife when she too needed it. My wife was getting to the point she could not drive a car without severe pain, so my retirement even though it was not what I planned to happen at 50 years of age, did become a blessing. After 5 and 6 years as caregivers for her parents, they both passed away and I pretty much became my wife’s caregiver. By then she could no longer sit for more than 30 minutes to one hour at a time and it had become impossible for her to drive- so any doctor’s appointments she had, I had to take her.
Without her parents to care for it gave her time to look into what could be done for her continuous pain, at that time still unknowing it was the mesh causing it, although at the back of her mind she knew it was from Day 1. As she searched on line she found the term Pudendal Neuralgia and for the 1st time EVER it had all the symptoms she had had since day 1 the sling was put in. The people who commented on an article also had very similar stories. She was excited to at last understand and found someone who recommended a physical therapist who dealt with that issue. The therapist they recommended turned out to be the same physical therapist she had used years before. She told my wife she indeed did think she had Pudendal Neuralgia because all her symptoms pointed that direction. So through the therapist she was put into touch with a Dr. who thought her problem was definitely nerve damage and again began the nightmare of torture tests.”
I want to say something again. I too was put through torture tests after I had a fall a few months after the mesh sling and I contacted the implant doctor once again, trying to get her to admit that mesh had caused my pain and problems. Doctors refuse to admit there is a problem and she did send me to a neurologist who did an EMG and then told me I did not have nerve damage. That test was excruciating for me. I then realized she was never going to admit it and the two doctors were in cahoots to prove me wrong. I later learned that an EMG can be read any way a doctor chooses and they are not reliable.
“My wife took many tests by the new doctor and was told that yes she INDEED had Pudendal Neuralgia. The Doctor found out she has Pudendal Neuralgia with nerve blocks tests etc; that were put into her Pudendal Nerves and it did take the pain away for about 1hr each time. However after three times doing this in a HOSPITAL he told her the next step was that she must do was surgery with a Doctor in Minnesota who did Nerve Entrapment Release. This basically involves Severing the Pudendal Nerve. However, the day his intern examined my wife and said he could feel a stitch or something in her vagina, this too was the day we learned this Doctor was also a Quack. That new Dr. took over and told us the mesh was ALL dissolved. He said it was ALL gone! He also said that the Dr. in Minnesota would NOT look at the Mesh Sling because it was NO longer there!”
Once again I need to interject so that women can learn from our experiences. When I went to see Dr. Raz more than two years after my implant, he looked at me after I told him where the pain was and about the falls, he said he was sure it was femoral nerve damage and he did a nerve block that day. Yes it relieved it for about an hour, but then it came back. In my experience the nerve block did not help, but then again the mesh was still in me and was removed four months later. That relieved my pain so much but the nerve damage remains after three years and three months. I am however, so much better for having it removed by a competent doctor.
“The last doctor we saw told us that Lawyers were just putting adverts on TV to SCARE people! He also said that the surgery in Minnesota was a 50/50 chance to work and it took 2years to find out IF it worked at all. When we left his office he said “We will call you, don’t call us!” I was shocked and I thought to myself WTF!
Anyway as God will do, He helped my wife find the blog Linda writes and through that we went to Dr. Raz. I remember how excited my wife was to find other women who UNDERSTOOD her problems and that they were real, and how surprised we both were at the enormous help Linda was and other phone calls we got immediately from other women she put us in touch with. These women convinced us we DID have to go to UCLA and my wife immediately called Dr. Raz office and got the first appointment possible.
Somehow we knew God would help us to get there. So four trips on the road to UCLA and three surgeries later in 12months, the mesh sling was gone or removed at least as much as possible after twelve years. The last surgery we went out there was for an Interstem implant to help with the nerve pain. It did give her some relief but she still has to pick what she will do for the short time she can sit, which is about 30 minutes at a time. Where at first she could sit about an hour or so a day, I think now it is maybe once or twice a week, unless she wants to hurt more severely.
For the short times she can sit, it’s tough to decide if she wants to go to a church service for the week or if she has Doctors’ appointments she has to try to space them out so they are not back to back. The last SAD note to add is she had to have leg surgery last April on the same leg mesh had just got into Dr. Raz told us. She had fallen a time or two before removal and after. She was then bed bound again for around 6month, because she could put NO weight on that leg. It also took 6month to find a test she could take to show anything was wrong, because of her Interstem she cannot take an MRI. Finally an old test they did showed up the problems. IN April 2015 she had knee surgery where much cartilage & ligaments were removed that were too shredded to fix. So now she has another permanent pain and a weakened leg that has affects her ability to walk. So I realized you may NEVER know when or if EVER the end of damage a mesh does, will stop.
I want to add my wife found that when she gets into a swimming pool at least waist deep she has NO PAIN. That is correct NO PAIN! Dr.s said because there is no pressure on her nerves while she is in there. I personally am NOT a fan of pools, but I open and close it because it is the ONLY thing that makes it so she has NO PAIN. An hour or 2 a day she loves to swim in her ‘no pain’ pool and it helps her physically and mentally. So TRY IT for yourself if you have pudendal nerve damage!
I know I have just been talking about the meshtastraphe and what my wife and I have been through, but Linda asked me to write about how it has affected me and my wife personally, so here goes. As I said in the beginning you think the Dr. knows best or something will change by doing a surgery and she will be fixed. I don’t exactly know when the different emotions came for me, but as you go through it you are thinking, “It can’t be as bad as she says”, and to wanting to kill the next person who asks “How is your wife?” Or the many, too many who continue to ask “How is her back NOW?” to the point you just nod and act like anything they say the right thing. Honestly, because of all the stress the meshtastrophe caused both of us it is a miracle we have stayed together.
I can tell you that you will get angry with your friends and adult children because they have NO clue what you are going through. There will be times you will make the same mistake I once made and say “she just needs shot” although you really don’t mean it. Depending on her mental state at the time of such a statement, you may suffer for years for having made it.
My wife isn’t afraid of strangers and being alone because she was once a police officer and long ago made her mind up to take the training and took an oath that she would be willing to defend herself or others with deadly force. She is still an excellent shot as she found out several years ago when she and I went to take our ‘concealed weapon’ carry course, but sometimes because of her injuries, she gets concerned what will happen if she can’t get to her pistol or stand up if we have an intruder in the house. Her injury has made her feel very vulnerable.
Our sex life is not what either of us want at this stage of our life, but we are just still happy to have each other and be relatively sane after all the financial devastation. Because of the lack of sexual intimacy and other health problems we both have had we TRY to appreciate what the other is feeling or going through. Although we both are alike in many ways, our reactions to what happens in our lives could not be more opposite. I react in Anger and Yelling and my wife having grown up in that environment does not handle my reactions well. I admit that sometimes her complaining (whining) drives me mad because I grew up with a Father who exaggerated his ailments and I vowed to never to whine or complain because of how I felt. Because of how I am, my wife sometimes doesn’t realize how bad I really feel for her. So sadly our personalities can at times be poison to each other.
I am grateful for my relationship with God and the fact that He forgives me for all my shortcomings when others don’t. There will never be enough money from any lawsuit settlement or any word that can be spoken by doctors to make up for all the pain and suffering that this mesh-tastrophe has caused in our lives. However as I have read the different stories of all the other women on Linda’s blog I am grateful that my wife hasn’t suffered some of the things that they have. Hers has been an ever ongoing increase in pain but fortunately she hasn’t suffered some of the awful infections and partial removals that some women have. All we can do as spouses and other family members is educate ourselves about the horrors of mesh and not be afraid to speak of it to others. I know my wife has saved 15 people SO FAR she knows of for sure (1man w/hernia surgery) from having mesh implanted and I tell anyone who will listen about mesh implants. We are all adults so it’s OK to talk about vaginas, anuses and dropped organs. To speak of sex or no sex or anything else that will bring attention to what this awful shit does to women.
I shared with my wife the other day that I was about to buy an item at the store to use for storage in my garage but I noticed it has the word mesh in the description and I refused to buy it even though it had nothing to do with the type of mesh that has been put in all unsuspecting women and some men. So please don’t be afraid to tell anyone about this awful stuff.
Our children have been slow to come around to have a clear understanding of what has happened to their Mother and me, but they are all beginning to. I think first they realized I needed to get away sometimes but they didn’t understand how much I needed them to check on their
MOTHER while I am away. I am not sure they will ever get why I need a break, but I also try to understand that they have families. I also thank God they are not doing what I was at their age.
So all in all 21 years later since we married, I think my wife and I have strengthened our marriage through all of the pain and anger. I have hope that we have many more years and even better ones to enjoy each other. We have definitely learned that not every Dr. speaks the truth and some just flat don’t know what the truth is.
On the subject of children I can’t imagine what you guys and gals are going through who have young children. I thank God our kids are grown up and
Independent. My wife’s pain does sometimes make it difficult for us to enjoy our Grandchildren and I hate that, but for younger women to have young Children in the home full time has got to be beyond difficult. As far as vacations go for us, it has been so long since we have been on one where we could both function normally I have almost forgot what one would be like to enjoy. My wife is hopeful that we can get our RV fixed or possibly traded in for a better one that is a bit smaller and easier for me to drive, we will be able to take one together again.
We drove by the Grand Canyon a total of 8 times on our trips to UCLA but never once did we stop to enjoy it. Our concern was always about getting out there for treatments or surgeries. Then once the surgery was done, my concern was to get her home without the RV breaking down which it did once or twice on these trips. Plus I was trying to make it as comfortable a drive as possible for her, especially after major surgeries. I had to drive by myself in the front of the RV, so it was hard for us to even communicate on the road. I am now trying to remain positive that in the near future, shorter trips can become somewhat enjoyable again for us both. It is a shame that we were in Los Angeles 4times and never once saw the Ocean. That is what happens when your goal is to get there, get to the Dr. and fight L.A. traffic as safely as possible.
We were so lucky when God blessed us BEYOND any imaginable measure when someone neither of us knew near UCLA, out of the kindness of their heart and Love for the Lord opened up their hearts and their home and welcomed us the four times we went out to UCLA. Linda posted on her blog how I was worried and wondering WHERE to park an RV in the L.A. Area and they offered to help.
God used Linda and then the rest came through when the family of another woman who had her mesh removed by Dr. Raz, told us how we were WELCOME to park our RV in their front yard and they would even lend us a used car to drive back and forth to the hospital. We got to know the people who did this and we still are astonished the lengths they went and how their hospitality glowed with the love of God. They were retired missionaries who thought nothing of sharing what they had to help others. This happened all because Linda opened her heart and still does to help other women and the people she reached out to also help each other.
As far as sex goes, I am probably one of the fortunate few whose wife never lost her desire for sex through her ordeal and only recently because of other health factors would we finally say no to sex. This is because of amount of physical problems all we have. Unfortunately I lost my desire for sex because of having been there and seen all the torture tests they put my wife through. It can make most men cringe and run away as well as some women, when I tell them what my wife has been through.
The mental anguish of mesh can be overwhelming for both of you, so please seek out all help available. I could talk all day about sex but I won’t because I know it differs with all individuals. Some need it more than others, so do whatever you need to do to work it out for you and your wife. All I know for sure is marriage is difficult on a good day so if you were not really in love, mesh will rip both of your hearts to shred as well as parts of your wife’s body.
I am sure there are other illnesses that have awful outcomes but all of them generally have a protocol and treatment plan that someone is aware of. With Mesh complications, there is no standard of treatment and will never be because of the almighty Dollar. I may be wrong but the only other thing that comes close in my mind is what cigarettes do to a body, but there has been enough information about the side effects of smoking, so you should at least know and not be surprised if they kill you. But with mesh, Doctors are still lying and selling the benefits to unsuspecting men and women, so I really don’t think there is anything to compare it this to. This is why it is so hard for sufferers to get help and for families to understand. I am not sure if they ever could even understand if they wanted to. Mesh complications can be a very lonely place in a mesh sufferer’s home most of the time and you each have to find some outlet that takes you away from the constant pain and suffering. If you don’t even the strongest marriage is going to suffer.
My wife can still buy and sell on Ebay and has done it since she had to retire and that is an outlet for her. I still help other alcoholics and drug addicts as I can and my wife supports me in doing this and helps when she can. I still like to tinker on old cars. The wife and I have had to try to come to an agreement that though my hobby costs more than hers in general, we both have to set a limit. So we don’t use our hobbies cost against each other. I only say that because the financial burden of a mesh injury will possibly bankrupt you because it take so much money.
To sum up all I have said in a nut shell, mesh sucks and it will make your life suck if you let it. If you try to help others as my wife and I try to do especially when our selfishness is not 1st in line, it helps you forget yourself somewhat and also give you a reason WHY you are still here on earth. Because of what you have gone through and what you have left, YOU WILL be able to help some others who would have NEVER been helped if you didn’t have that experience. To continue to share God’s love and strength however HE wants us to, is still very important to us.
God Bless you all from a loving husband.”
I hope what this man wrote will help other men deal with their wives’ long term disability. It is not an easy journey for any family, especially those who are close to us. His time and effort is most appreciated by me and I hope by all men and women who are travelling the same path.
Love is such a simple word
You cannot touch or feel
But when it’s said, it warms your heart
It makes the word feel real
You cannot squeeze nor hold it tight
There’s nothing you can see
But when it’s said, it warms your heart
The lock that holds the key
So when I say “I Love You”
And send these words to you
They come from deep within my heart
To warm you through and through