My journey with mesh began years ago when I agreed to have a hysterectomy to end many years of heavy bleeding and the cramps that came along with it. During my consultation, the doctor convinced me that “while doing the LAVH (laparoscopically assisted vaginal hysterectomy), we could do a bladder lift and get it over with because when I get older, I would likely need it anyway and how nice it would be to be leak free.” The doctor concluded by saying how my little bladder would be resting in a sling.
OK, sounds good to me. Just hurry and get this hysterectomy over with. I was not told of any potential risks, and I specifically remember being told how non-invasive this procedure (bladder lift) actually is. I did not know any better.
A while after that surgery, something began happening to my body. I was going through such strange things that I had never endured before. I was in terrible pain. My pelvic area was on fire. Sex was out of the question because it hurt so bad. I was getting urinary tract infections (UTIs) on a regular basis.
There was e-coli in my urine, I learned, after I started going from doctor to doctor wanting to know what was happening, asking them to help me figure out what was going on, I begged for answers. I begged doctors to just tell me I was dying of cancer — something, anything, just give me an answer, not just another antibiotic. Please!
‘Time I Will Never Get Back’
I tried to hide my pain; I really did. I have never been a complainer. I have hardly taken an aspirin for a headache. I was only 30 when all of this began and very happily married to a man who is my best friend, a man who I share everything with, a man that I have fun with, a man that I co-parent our two athletic sons with. Who has time to be down? Who wants to be known in their 30s as disabled? But disabled is exactly what I was.
Looking back over the years, I realize how much I have missed out on — like not getting on certain rides with my boys at the local fair or amusement parks, in fear of being jolted around. (It hurt just to walk around, let alone get on a bumpy ride.) I missed summer boat trips with family and friends because I couldn’t fathom the idea of getting bounced around; no playing ball in the yard with my children; no exercising. So much was missed. Time I will never get back.
I remember going to several doctors over the course of these years and telling them one by one of my strange pains in my lower pelvic area and how it radiates to my right side — always sharing with them my past surgeries, which included the hysterectomy and bladder lift.
Bladder Lift and No Answers
Bladder lift — do you hear what I call it? BLADDER LIFT. Why do I call it a bladder lift? Because that is how it was introduced to me.
I was never told that I was having a surgical mesh product transvaginally implanted inside of me, with harmful risks involved. In fact, I was only told of how great it would be to enjoy life with no leaks at all — a “lift” of any kind on a woman can sound very appealing, after all.
“I was never told that I was having a surgical mesh product implanted inside of me.”
I remember all the talks I had with these doctors and all the blank looks on their faces while I rambled on with my alien-like symptoms. I remember the feeling of getting nowhere with these many doctors and also the feeling of going crazy. I really started to feel as if I were just losing it. Maybe I was.
My husband couldn’t understand why I was hurting all of the time, why I was crying myself to sleep at night in so much pain that I didn’t even want to be touched. Even my sweet mother was at a loss for words; as desperate as we all were for answers, there were none. I would try different emergency rooms; I went to several different gynecologists, to no avail.
On some of these visits, I would have a urinary tract infection, sometimes an e-coli infection and sometimes nothing. That’s right, nothing (the tests would say, anyway). I would be in terrible pain, unable to move without hurting so badly I would just cry, yet there was nothing “wrong” with me on these reports that would come back. I had my liver, appendix, gallbladder, kidneys checked out, blood work, urine sent off to labs, and still a big fat nothing.
‘We Can’t Find Anything to Treat’
I missed work on several occasions; heck, I even had a co-worker drive me to the emergency room on my lunch hour one time because I just knew I was dying of a mysterious illness, and the way I was hurting that day, they would just have to find something this time – ha! Not so fast. Sent home again; nothing on the reports showed anything — not even a UTI. (Imagine going back to the office explaining nothing is wrong.)
I remember clearly this ER doctor sitting (yes, sitting) on the bed right next to me with concern in his eyes, knowing something was wrong because he could see my pain, but could not (or would not) come to any conclusion. So I am sent off once again, being told, “We can’t find anything to treat,” offering pain meds that I politely would always decline. Why would I take a pain pill to mask this pain? I wanted to feel it in a way so that I wouldn’t lose sight of finding out what was causing it. I wanted to fix it, not cover it up.
One day, I was convinced (desperate, more like) since nothing else was coming up, that it had to be this one ovary they left in me, so I went to a new OB-GYN who was highly recommended by a co-worker. She listened to me; she consoled me; she poked around on my ovary, which was on my left side. (All my years of agony was on the right side, but nonetheless, I wanted the ovary out.)
She was not convinced at all, but because I wanted it out, she would oblige. However, since she was allergic to latex gloves, she would have to refer me out to another doctor who would perform the surgery. Fast-forward to my pre-op appointment with this new doctor — a bladder specialist.
Finally, a Diagnosis
As I am sitting in his office trying to explain my story for what felt like the millionth time, I seemed to have said something that sparked his attention. He said, “Sit right here; I’ll be right back.”
When he came back, he asked me what I would say if he could cure me with no surgery? He didn’t believe I needed my ovary out either, and said I needed that ovary for hormonal reasons. He got my attention. I thought, “OK, finally an answer as to what is going on with me!” He asks if he can do a potassium test on my bladder. I agree. (Pure torture, by the way.)
End result: He tells me I have interstitial cystitis (IC) — chronic inflammation of the bladder wall. He also explains he has more than 500 patients with IC.
What in God’s green earth is IC? And did you say you had more than 500 patients with it?
I leave not with a surgery date to have my ovary removed, but a new diet on a plastic-covered paper, along with a prescription that costs $50 a month for the rest of my life. The only real bad side effect to this medicine is potential hair loss.
Seriously, what just happened?
Episodes and Headaches
I left there crying my eyes out because this was devastating. (Let me get a little vain here. I am a 30-something female. Hair loss?) No more ketchup, no more mayonnaise, no more spicy Mexican food? No more coffee??
I have always and forever eaten spicy foods, with no bad feelings afterward, so what in the world is this man talking about, and $50 a month for the rest of my life? And potential hair loss? I think not.
I never went back. He was wrong, or I am in straight denial. Either way — I am done.
I did do research on IC. I did try to convince myself that this was a possibility, but I just never could wrap my brain completely around it. It didn’t make sense. No other family member had had this thing called IC.
“The ‘episodes,’ as I call them, increasingly got worse and lasted longer.”
The “episodes,” as I call them, increasingly got worse and lasted longer. My side would hurt so bad that I would find myself holding onto that area. Starbursts of needle-like pain would rush over my pelvic area and shoot up my side all day long and into the night. Sleeping was not any better. I would toss and turn, never getting comfortable. My breathing was different. I found I was taking deeper breaths every few minutes, and also started to notice my memory was changing.
I would get random headaches that would totally consume me; nothing would give me relief. I knew when I was full of infection by the way my head would hurt. Sure as anything, I would go back to a doctor, explaining all of the above and yet be sent home time and time again with an antibiotic.
Hurt and Hope
I really started to lose hope and was beginning to chalk it up to me being crazy. Me, of all people. Me, who is so organized. Me, who has all the reasons in the world to want to be healthy and pain free, and yet I am not. I hurt. Constantly.
One afternoon, in October of 2011, my husband saw an infomercial on TV. As I was walking by with laundry in tow, he said, “Babe, you need to listen to this. It sounds like what is wrong with you.” I only caught the end of the infomercial that asked, “Are you a victim of transvaginal mesh?” I said to him, “Transvaginal mesh? That sounds like a dang disease” and went about my business.
A week later, I heard that infomercial again. Only this time, I paid close attention. This was a lightbulb moment for me. I threw my newspaper up in the air as I jumped up from the floor and yelled, “Oh my gosh! This has to be it!”
You have to understand I had lived in so much torturous pain for so long that nobody could relate to — heck, I couldn’t even describe the pain — so to finally see a complete list of your symptoms on a stupid TV infomercial, it was heaven sent.
That was October 2011. Right in the middle of our big move back home to Florida from Tennessee, 30 days prior to me giving up my job with insurance benefits to make this move back to Florida.
Naturally, I was elated with a newfound hope that this was finally my answer to years of agony. I didn’t just have one symptom they noted on that infomercial; I had every single symptom. And, by the way, the symptoms had been noted for years on all my medical records, but no doctor could put 2 and 2 together, I suppose.
Searching for a Doctor
I was so excited and couldn’t wait for the next day to come so I could start calling doctors to get help. I didn’t even think about calling an attorney; my first and only thought at the time was getting help.
Time was not on my side due to the move, so I immediately called the urology specialists like the infomercial had said to do. To my great surprise, I was basically being hung up on. I couldn’t believe it. I had such high hopes, and it was quickly being ripped away from me because I could not find a single doctor in October 2011 to take me on.
I quickly started gathering my medical records from every doctor and hospital I had ever been to, beginning with the hospital where my surgery was done. Gathering years’ worth of medical records from several different doctors proved to be a daunting task, but I got them before my move, by gosh.
I knew at this time that I needed an attorney. This was huge. This was nothing I could battle alone. This was turning into something I knew nothing about, and I will admit: I was scared. I spent my entire life trusting doctors, trusting that they knew best. Now I was being turned away. I had learned I might have something inside of me that could potentially be life-threatening, and yet I could do nothing about it without the help of a doctor.
We got moved to Florida. I was getting worse. My mother got to see, in person, how this was affecting me. She saw me huddle in pain in bed, silently crying with no help.
Ready to Give Up
A friend referred me to a doctor who advertises on TV in Florida that he helps mesh victims, so after a phone call explaining to them that I just moved here and had an attorney just needed help, they welcomed me. This was in January 2012. I couldn’t wait to get to this appointment; little did I know how very disappointing it would be.
This doctor took my medical records into the other room, and after only 10-15 min of reading years’ worth of medical records, he came back in and said, “You don’t even have mesh inside of you.” I had to request that he do a pelvic exam. He finally obliged, but only spent 30-60 seconds before saying, “Nope, everything seems OK.”
I couldn’t believe it. I really thought I was at my wits’ end at that point. I walked back out to my waiting husband and just cried like I have never cried before. “I will die before I get help” is what I told my husband. I was ready to give up.
“I was tired of telling my story over and over and over again. My story made no sense to anyone.”
I had no insurance at this time and was spending the little bit of savings we had left just to go to this doctor, and yet he tells me I am probably having a bout with IC (because I had shared w/ him the previous preliminary diagnosis of IC). However, I had changed my diet totally, so having a bout with IC was not the answer, and I knew it. I was not eating spicy foods; I was not eating ketchup and mayonnaise — or any of the other stuff on the list of no-no’s — so I knew this had nothing to do with IC.
I had no choice but to stop trying to get help. I had no insurance, and honestly, I was tired of telling my story over and over and over again. My story made no sense to anyone. It isn’t your common, everyday symptoms. These were symptoms that were clearly a mystery to everyone who had listened to me since my troubles began.
Looking for Help Again
I finally got up the energy to go look for a job, and succeeded. After waiting the 90-day probation period, I finally had health insurance again, which sparked my courage to start looking for help again. Plus, I was hurting so bad at this point that sitting in a chair for 8 hours at a time was pure torture.
I would leave work and cry on my drive home because I was hurting so bad and was so exhausted by the end of the day. There were times when I would check my blood pressure at the local Walgreens because I was feeling so exhausted; my pressure would be so low that it was alarming. I knew I needed help fast, as I truly thought I was dying.
After sharing my story with a new co-worker, she told me about her specialist and said I should give him a try, so I did. This new doctor welcomed me with open arms; only this time he and his assistant really listened. They also did an exam first thing, and low and behold the very first thing he touches while doing the exam hurt so bad and he immediately said, “That is the mesh. It has eroded.” The sling, he tells me, isn’t even in place any longer.
So I did have mesh inside of me, and it had eroded through both sides of my vaginal wall. Surgery is what has to happen, he said, and one week later I had surgery to remove the mesh inside of me.
After surgery, the doctor told me he cut out all he could see. I was in so much pain and felt like the fire in my pelvic area and my side had been turned up a few thousand degrees. I was truly worried that this surgery did nothing for my pain, however, most thankful that most of the mesh was out of my body.
“For nine long weeks, I couldn’t sit up for longer than 30 minutes at a time.”
For nine long weeks, I couldn’t sit up for longer than 30 minutes at a time, and found relief only when I was lying flat on my back. Is this what my life had amounted to, I wondered.
I missed several more basketball games of my sons. My new job had to let me go because who knew when I would be better. I was getting really depressed thinking my life was totally ruined by mesh.
Feeling Better — Finally
Around 12 weeks post-op, I began to feel better than I had since having the bladder sling put in. I no longer had the constant burning pain in my lower pelvic area; no more pain on my right side. I could breathe fine, and my back didn’t hurt as much as it did. Could this be true?
I am afraid to talk too much about it in fear the ugly monster will rear its ugly head again, but for now, I do feel much better, and my energy level is coming back. However, I will likely always suffer from the damage it caused to my pelvic floor. My hips go numb. Occasionally, I get the jolt of pain on my side, but nothing like it once was.
The worst part is that the insides (of my vagina) are forever mangled, leaving the mental desire for intercourse at zero due to the loss of feeling inside but also the discomfort mixed with pain I endure.
I hold a newfound hope that now that most of the mesh has been removed, my body will start to become healthy again. The possible threat of more surgery remains; only time will tell.
I share my story in hopes of helping that one person who feels alone in this battle to know not to lose hope, keep being heard. Even as tiring as it seems, keep telling your story until you find the right doctor who is really willing to listen and really willing to help and not afraid of his/her time being consumed just because you may be smart enough to have an attorney on your side.
It is a shameful mess when you can’t trust some doctors to tell it to you straight, but really who is to blame here — it is the manufactures of these products that are making it and then promoting/selling it to these doctors.
Nobody should have to suffer for so many years without answers. I lost many years to mesh, and now I will spend the rest of my life telling everyone I come in contact with how very harmful it is and how it could have potentially cost me my life.
I have started a nonprofit foundation called SurvivingMESH.org. I will work diligently for the rest of my life if I have to, to warn others of the harmful risks associated with it and hopefully help get this horrible product off of the doctors’ shelves.
My mission has come to me by circumstance, certainly not by choice, but I welcome the challenge and pray I can help others before it is too late. If mesh needs a voice, I am here to be heard.
You can follow my journey and read stories of the many others affected by mesh at https://www.facebook.com/SurvivingMESH or on Twitter @SurvivingMESH.
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Disclaimer: Thoughts and opinions expressed in this patient story are strictly anecdotal and should not be taken as medical information or advice. Views of the interviewee do not necessarily reflect those of the author, editor or Drugwatch.