Daughter of Mesh
There are two sides to every coin and two sides to every story.
I asked my daughter a few months ago to write about what it was like to live with me as a mesh injured woman. I wanted her to be brutally honest because it is very important for women to get the fact that the mesh injury did not just happen to YOU. Over the weekend she did not work on our house because she was not well herself, and she decided to write for me so that I could share it with you.
I asked her not to sugar coat or do the usual stuff like “I missed so and so about my Mom”. That is a given. What I wanted from her was how she felt all the way through the journey with me. When you read it, I want you to understand that this is how your family feels. Either partner, adult or young child feels and how your mother feels. To understand anything you must first agree to be open minded. You must evaluate not as a parent or other. You must put aside all your own pain, all your own anger and frustration so that you can realize this journey is not all about you. Everyone around you is affected. But you do not have to lose the relationships you have if both of you agree to work at healing them.
Understand if your relationship was already doomed before mesh complications, it will finish it off, but not caused it. Also understand that there is no need for any abuse on either side either physical or emotional. My daughter has never been that way with me, not once. She has taken me to so many appointments to doctors and therapists and has often instigated trying something new. Then she has to sell something to pay for it because most of these innovative approaches Medicare will not pay for. She also has to find extra funds to buy the supplements that can improve my situation and help me stay as well as possible. This has involved hundreds of hours on her part. There are times when I see she is tired of it all and I understand why. No one can live like this and not get sick of it.
I have always been very grateful to her and for her for standing by and helping me through this awful journey. I can no longer drive and if not for her I do not know what I would do.
By sharing her words I want you to view those who love you in a different light. Know that they still love you but sometimes they get angry and frustrated by what has happened to you. Not angry or frustrated at you and there is a difference. Name calling has never been allowed in my home and my daughter never grew up with it, so she would never yell or scream at me. We have a good foundation because of our past together. We are alike in some ways and complete opposites in others. That is the way it is supposed to be. Sometimes we agree to disagree.
You should also know that when the mesh sling was put into me, she was trying to make her own relationship work with someone she fell in love with. Relationships are hard at best and unless two people want it to work, it will fail. I know she felt bad for not doing more research at that time, but it was not her fault. Sadly there wasn’t much out there four years ago and I did not even know what had been put into me for many months. Then it was because I got the records from the hospital. Only then was I able to do more research and find the truth through an avenue of hidden facts.
I also want you to know that a few days ago she told me I don’t know what I will do if you don’t live many more years. That says it all. So now read her true story. Not fluff. But the truth of what it feels like to go through this journey from a daughter’s point of view. I will add more at the end of this blog.
Daughter of Mesh
How mesh changes your life and those around you cannot be summarizes in a handful of words. It’s a lifestyle change for everyone involved with an ever-evolving array of emotional upheavals and challenges. Women who have been damaged by mesh know all about their own challenges and physical changes. What happens to the closest family members and how are they affected by it? I cannot speak for everyone… but I will tell you my story and how it’s affected me personally.
There is a process with mesh. You go through all the emotional stages of loss and grief. My mother’s journey down this road came from a single visit to a doctor who decided she had “high blood pressure” when in point of fact she went there for a urinary tract infection and the good doctor upsold her on the blood pressure medication Lisinopril. That medication was not required or needed, but because at that time we held a doctor’s word alone in high esteem, she took it without question. Lisinopril caused an allergic reaction called angioedema, or internal hives. From there damage was done to my mother’s internal system. After getting off Lisinopril and finding an antidote for the hives she had to have the internal damage repaired. A rectocele repair was required. After watching my mother creep around instead of walking normally I was all for having the damage fixed by a surgeon. We went for the consult and the surgeon decided to upsell my mother on another procedure at the same time… a bladder sling. I honestly wasn’t happy about it. It was a matter of more money… a lot more money. However, it was my mother’s body and her choice to make. Normally I am the one to research everything… I made the decision she should do her own research. I regret that decision to this day.
Denial and isolation. After the surgery I thought, “OK, you’re fixed.” Unfortunately she was not fixed. At that time there was little information on medical mesh on the internet. What little information there was had shocked us both.
It was just over 2 months my mother returned to the hospital to have the mesh problem fixed. It took that long because there was a huge battle to have the doctor fix the problem… she refused to believe there was a problem even though my mother could not pee and was connected to a bag for 8 weeks. It was miserable for her. She was starting to panic thinking she might never be able to pee again… and I didn’t blame her. So back for surgery #2. This time I was under the wrong impression of what was going to “fix” my mom. I “thought” they were going to remove the mesh… because it was obviously a problem not a solution… and then she would be able to pee. Wrong. I remember the doctor, a woman no less, coming out of the surgery to give me an update on how the surgery went. I asked if she got the mesh out. She replied they had loosened it. What the hell did that mean? Loosened it? I thought they were removing it? Upon further questioning I learned they could not “remove” the mesh. She told me it was ok though because it was now hanging loose and there was nothing holding the bladder up so my mom would be able to pee now, back to normal. The biggest insult is the deception that woman perpetrated by telling me that and minimizing mesh being left in the body.
Anger. So after surgery #2 and under the impression my mom was now fixed… I thought what everyone else who has ever gone down this path thinks… “Now let’s get back to normal.” It didn’t happen. What did happen was my mother decided she wanted to build her body back up after she was free of the bag. So we went and purchased an exercise cycle from Walmart. I assembled it and tested it, then left it for her to use. She told me it hurt her too much to pedal. Now I expected the equipment to become a dust trap just because our family is not into exercise equipment and instead takes an active approach to exercise by doing something around the house. What I didn’t expect was “it hurts.” It what? You’re supposed to be fixed. I didn’t understand it and honestly at the time I thought she was just exaggerating. The cycle was returned to Walmart. What every family member either silently or verbally thinks at a certain point is… “You’re milking this. You have become used to someone helping you and must like the attention.” I went through that too. My mother spent hours online trying to find something to explain to me what she was going through… and I kept thinking she just wanted a new illness. She looked fine with the exception of walking with a small limp. Groaning every time she stood up or sat down. It felt like someone just wanted attention. I just wanted my independent mom back… what the hell was wrong with her?
Bargaining. In her frustration with me not listening, my mom started a little blog. Somewhere to vent her feelings… somewhere I didn’t have to listen to it. She continued researching. She found other women who were going through similar experiences. A lot of women who were going through far worse experiences. I started to believe what she was going through… but I didn’t believe it wasn’t “fixable” through natural supplements and exercise. I bought every supplement I thought would help. She tried them all. Some alleviated some symptoms, some fixed other things. None fixed her walking without pain… and that limp was getting worse all the time. She was no longer able to drive. I was now the chauffeur in addition to house husband fixing everything at home. Through many hours on the phone she decided the only way to fix her problems and keep from going downhill was by going to a doctor in California called Dr. Raz. We were out of credit line and had no extra cash for this. She had to wait nearly 2 years to see him. It took most of that time for me to believe she actually needed to go to California and there was no other doctor on the planet to fix her. We have 2 in Texas that are well enough known here… why couldn’t this be done closer to home? At least the same State? She continued talking to other women and through doing so was learning a great deal about all the doctors to avoid… all the damage they were doing to women in their “removal” surgeries. I had to listen daily to yet another horror story she was relaying to me. I was sick of it… I just wanted this mesh shit out of my life. So I finally relented… Dr. Raz would be the surgeon to make this nightmare end.
Depression. Once the decision was made that Dr. Raz was the only surgeon on the planet who would not further damage my mom… we waited out the time until she could go. Trust me when I say that UCLA and Dr. Raz’s team are the only doctors in the world to
be trusted with mesh removal. I continue to hear the horror stories to this day… and time is not improving doctors and mesh. The day finally came for the great mesh removal surgery. I almost wanted to throw a party… I’d finally have my life back to normal… and my mom would be fixed. She had it removed and it went well. We stayed an extra few days in California so she wouldn’t have to fly back right out of the hospital. Got home… and after a few weeks of catheter hell she still couldn’t pee just right. It was decided she needed yet another surgery… to “fix” the damage the mesh had caused. I couldn’t believe it. She was supposed to be fixed once the mesh was removed. What the hell? I was now doing damn near everything. Chauffeur, handyman, head of household… and pitiful emotional support. I let her tell me all these stories of mesh damaged women… but I hated every minute of it. It was a constant reminder life was never getting back to normal. I was on my own… finishing building a house by myself when once I had my mother as a partner in building… she painted and organized and did sheetrock. Now she couldn’t even help pick up the other end of a piece of sheetrock let alone anything else. My personal life was in shambles too… dating was stressful when I had enough stress at home. So I just sucked it up… and kept on building.
Acceptance. The surgery for repairing mesh damage meant another trip to California and UCLA. I went with my mom again. Don’t think this is a trip to Disneyland. I went to support my mom for a medical trip. There is literally nothing to do in the UCLA Westwood area. I went from hotel to hospital with a few breaks to Target and grocery store in between. Bored to death and worried how this was going to come out the entire time. Hopeful this would help her pee normally… but at this point not expecting a miracle of any kind. It wasn’t going to fix that limp or the nerve pain left behind from the ravage of mesh. She was never driving a car again. Again… the catheter bag was attached… and knowing the nightmare of the bag and the stress of getting rid of it I was not happy about watching her go through this again. We got home… and that bag nightmare became reality. There were constant infections… it took weeks to find a doctor who wasn’t a colossal douchebag and get her help for those infections. After a round of powerful antibiotics… she was finally free of the bag and the infections. I cheered for one day. Then came another reality hit… the antibiotic Gentamicin that had helped defeat the infection had left its mark with more damage. She was now dizzy all the time… she described it as though being on a rocking ship. I did research and tried all sorts of supplements to try to repair the dizziness, to no avail. Tried physical therapy with no success. It’s permanent simple as that. There is no fix to this. So now she’s left with dizzy and limpy. I have finally accepted this is as good as it gets… and to get on with living life as best as I can with my mom as she is.
To this day my mom continues to help women all around the world even with the challenges life has dealt her. We try to have as normal a life as we can. She does the laundry and dishes… I do everything else. That’s life. It is what it is and screaming about it isn’t changing anything. I often hear the phone ring and tell her it’s “mesh central” around here. There are times it is all consuming for her… and I’m tired of all of it. It doesn’t pay the bills. It’s not helping our life. It’s depressing to hear these stories of women damaged by mesh. It angers me to think doctors endorse it. It’s a never ending money maker for doctors, pharmaceutical companies and lawyers. Now there’s even organizations popping up with people pretending to help… when in fact their agenda is spread their name all over the web and make a profit under the guise of a non-profit agency, becoming famous for nothing just like the Kardashians. It’s sickening. It makes me want to never hear the word “mesh” again. However… as much as I would love to turn back the hands of time and have none of this ever happen… I am not a miracle worker. Life is not a fairytale. It is simply the life we lead and we must accept what we have been dealt and make the best of a bad situation. So I continue working on the house… for me it’s now therapy to keep busy with my accomplishments and making a better life for our future… alone. I’m learning to cook. I’m happy with my little dog and my mom for company. I’ve accepted that mesh isn’t going away. It is in fact a medical crisis… an epidemic that is crippling and killing the women of the world. I help make little improvements to my mother’s blog which now has an astonishing following of thousands of women. I still listen to the horror stories of women affected by mesh. I hear about the doctors that continue to inflict further damage and are mutilating women every day. I hear about the lives of women and their families… and the anguish of how those closest family members treat the women affected by mesh.
For those family members… you’re not alone. Mesh didn’t just destroy the wife, mother or daughter in your life… it took a little piece of your life too. You’ll go through all the steps of grief. You’ll feel bad about the things you’ve thought or said. You’ll finally accept this is real… it’s not going away and life goes on. You’ll finally be the person you were meant to be in this situation… someone who accepts and supports the person you love.
Find your voice… and tell every woman you know or don’t know about the dangers of mesh. Tell them how it robs the immune system and damages nerves and organs. Tell them it kills… because women have died due to complications from this who couldn’t get help in time. Breast cancer gets more attention. African women having their vaginas mutilated gets more media coverage. Yet every day… hundreds more women are being “fixed” by mesh. Hundreds of women discover too late they will be experimented on… dismissed and called crazy… physically mutilated by both mesh and repair surgeries. Without a woman’s vagina… there is no sex and there are no babies. Remember that the next time you hear “save the breasts with pink” campaign. Your mother… your wife… or your daughter are affected by this epidemic of medical misuse and pharmaceutical irresponsibility. Help spread this knowledge to everyone you know. Say no to mesh… save a life today… and strip the doctors, pharmaceutical companies and lawyers of their power by taking the money out of this industry. Knowledge is power… spread the word.
Now that you have read her words, I want you to think about your own relationships. If at all possible, mend fences. But that does not mean taking any physical or emotional abuse from anyone. If you find all this overwhelming and cannot handle it on your own, don’t expect those who love you to handle it for you. Get help. Find a good psychologist and set up counseling for you and your younger children. Do something to help yourself and don’t lay alone angry at the world. This journey is long and filled with pitfalls. Try to avoid as many as possible. I wish you wellness and joy.