Someone reached out to me last night through here. I was so surprised! They said people were wondering what had happened to me since my last posts. That, too, was a surprise. I hate being the bearer of bad news so I’ve mostly put up and shut up since my previous posts, though many things have happened.
Let’s see...so I’ve had 2 surgeries now since Essure was placed in March of 2013. I had a reversal done at Tubal Reversal Experts aka the Florida Fertility institute in September 2014. Then, after the scar tissue in my pelvic cavity went crazy, I had laparoscopic surgery to remove scar tissue in September 2015. I was supposed to go back to work October 12, 2015.
And I did, although about 4 days before I was to return to work the pain came back and steadily increased. My first day back at work I wasn’t even on my feet (my shifts are usually 8 hours long, standing 100% of the time) but I was in the back taking a crash course in everything I’d missed since August. About three hours in, those same awful feelings returned. I felt like was going to puke or pass out, I was covered in cold sweat.
The pain I experience in my pelvis is like that horrible 5-10 second warning right before you have diarrhea from hell. Except it’s not diarrhea and the pain doesn’t go away. I remember the first time I felt it. I was driving my kids home from day care and that feeling struck at like 4 pm on an overpass. I almost parked on the overpass, got out of my car and pooped on the side of the road. I tried to make it home instead because it’s a busy overpass and it was broad day light and heck, I’m a Girl Scout troop leader. I did not want to be the lady having diarrhea on an overpass during rush hour. I got home and rushed to the bathroom, but the pain was not a warning sign of impending diarrhea. And it has been there ever since.
So, the surgeon who did my procedure in 2015 to remove the overgrowth of scar tissue said I needed to contact my reversal surgeon. I’d asked to have my Essure coils once they removed them. They put them in a small plastic container, kind of like a prescription medicine bottle, but clear. One coil was long and straight, the other was bent and a piece had broken off. They kind of looked like the springs in a ballpoint pen. The surgeon from 2015 said that the coils were missing their inserts, there are supposed to be PET fibers inside the coils. Mine weren’t in the coils. He suggested I contact my reversal surgeon (from 2014) and find out why.
I left a message and got a call back from the other Dr. In their practice. He told me the inserts were likely missing because the surgical assistant, knowing that I wanted my coils back, washed them to remove any tissue or blood that was on them and inadvertently washed away the inserts. That explanation made sense to me. But then he did something that made me very suspicious-he offered me a year of free IVF. I know how expensive IVF is and that is a huge thing to offer someone, especially for 12 cycles. It would be in the tens of not hundreds of thousands of dollars. I was surprised by his offer because the reversal they did wasn’t guaranteed at all. I had to sign a lot of paperwork agreeing to that fact. I knew that other women who had the procedure I had paid for their subsequent IVF if they weren’t able to get pregnant.
I thanked him for the offer although it is ultimately useless to us. My fiancé is Catholic so there will be no IVF.
But then I wondered, had they done something wrong that would warrant their offer of a year of free IVF? I went back and looked at my coils. The one that was bent and broken, could that have happened when the surgical assistant washed it? Were the coils so fragile that just bouncing around the container could bend or break them? I shook the container vigorously. The coils stayed the same.
Since my 2015 surgeon said I would need someone with more experience than him if the scar tissue grew back, I set up a surgical consult with a NaPro doctor 300 miles from my home. (There are no NaPro doctors in my major metropolitan hometown.) My fiancé and I went to see her in October. She did an ultrasound to see where all of my reproductive system parts were. (Scar tissue is not viewable by any external screening method, but you can see pockets of trapped fluid or when things aren’t in the right place.) They had to put the transvaginal probe in me just about sideways to be able to visualize my left ovary. She said it looked like it was frozen in place, adhered to my rectum. She said that I needed a much more extensive scar tissue removal procedure. The laparoscopic one I’d had in September 2015 took about 45 minutes and was done laparoscopically. She wanted to do full, open abdominal surgery over a 9 hour period. The surgery would require her, her partner, a urologist and a gastro doctor (because we know my digestive system is involved). She said the upcoming holidays might mean that she can’t get me in as soon as she’d like, but that my surgery would be done by the end of 2015. Since I was no longer the surgeon from 2015's patient and was now her patient, I needed her to certify my disability. She wrote a note at that visit that said “Please excuse (WhatTheCurtains) from work. She is having complications from surgery and needs surgery in the future.”
The third party leave company that my employer uses to coordinate medical leave and disability pay did not accept that note because it was too vague. They wanted dates, but would settle for estimates. I called and left many messages for my new dr over a three week period. Finally, one Friday after five, she returned my call. She sounded agitated. I explained to her that in order for me to continue to be paid for my time off that the leave company needed her to be more specific about when my surgery would be. She said she still didn’t know. I asked her for an estimate, she refused. I asked her to put a specific date but that I understood if she wasn’t able to schedule me, that at that point we could just file for an extension because she’d been unable to schedule me. She refused. She said this would be tantamount to lying. I said I didn’t see how, that we knew I would have surgery at some point over the next two months. I told her that I would lose my disability pay and I have five children to take care of. She was unmoved. I felt bad about this exchange, so I called every other NaPro doctor in the United States to see if I could be seen and have surgery sooner than the end of the year. They couldn’t accommodate that. It was going to take much longer to go through someone else. I decided to stick it out with her.
She ordered physical therapy for me, something we hadn’t discussed at my surgical consult. I went diligently, wanting to make sure that I did my part and wanting to expedite the process as much as possible. Physical therapy did not help. It was so painful, I’d be out for the next day or two. I understand that like...after a difficult workout you might feel bad but that over time you will improve. I didn’t. But I kept going because I wanted the surgery. I’d felt so much better after having my scar tissue removed. It’s just that it grew back that was the issue. The doctor used a product called Interceed to keep the scar tissue from growing back. It has a 60% success rate and didn’t work in my case. The second surgeon was going to sew Gore Tex to every surface in my pelvic cavity, wait 10 days (because the scar tissue starts growing back between days 5 and 7 post op) and then do a second surgery to remove the Gore Tex. Because it requires two surgeries, it is not a well known or much used method. But it made sense to me. Gore Tex has an 85% success rate at preventing scar tissue regrowth.
Since she wouldn’t certify my disability pay, I went back to the dr who did my previous surgery. (Another out of town trip.) He was willing to certify me through the end of 2015 (since the other dr said I’d have surgery by the end of 2015.) I received disability pay through December, but it ended as of January first. I left many voicemails for the second surgeon. The last time one was returned was on December 12, 2015. They said they were still attempting to schedule my surgery.
On December 23rd, I got a call from my insurance company. I had requested reimbursement for my reversal surgery in 2014 (we’d had to take out a $6k loan for it) and they denied it. My patient advocate with my insurance company excitedly told me that the insurance company had reversed their position and I would be getting reimbursed after all. My fears about the disability not being paid past January 1st were eased.
Then January 26th happened.
That day, I got a call from my patient advocate. I hadn’t received the $6k yet and was wondering where it was. My patient advocate had her supervisor on the line. She told me that she had spoken too soon and I would not be getting the $6k back. She said that this was because my reversal surgeon did not indicate my issues with Essure in his surgical report. The insurance company had called the doctor’s office and he had told them that he knew nothing about my problems with Essure. This isn’t true. Since we came from out of state, he agreed to do my surgical consult the same day as my surgery. I remember very well telling him about my problems with Essure because he remarked that the surgery before mine was another lady having problems with Essure. I told him about the Facebook group “Essure Problems” so he could offer his help to the many, many other women who need it.
I asked my “patient advocate” why they couldn’t use my multiple records of visits to the ER and my OBGYN for pelvic pain over the year and a half that I had Essure to support the fact that the reversal surgery was done in part to alleviate the problems I’d had with Essure. (There are at least 20 different visits, all of which I have the reports for. I’d sent these same reports to the reversal surgeon but I guess they didn’t make it into my file.) The patient advocate said that because they would be reimbursing for that particular surgery that that particular surgeon needed to acknowledge in writing that I’d had issues with Essure. I asked what the surgeon’s motivation would be, to go back and alter a medical record that’s a year and a half old. The patient advocate’s supervisor broke in and said that they were unable to speak to what they thought was going on with that Dr’s practice but that they had immense difficulties in their communication with the office and that she doubted I would get my money back.
Then, the patient advocate went on to say that my second surgeon, the one who’d promised to do surgery by the end of 2015, has decided I’m “no longer a candidate for surgery.” I asked what reason she’d given and they said she hadn’t given one. This was the first I’d heard of it and I’d had no subsequent appointments with her since my surgical consult in October
I went into super duper freak out mode at this point. I’d been waiting four months in terrible pain for a surgery that was never going to be. Had I known that, I would’ve scheduled an appointment with any of the other NaPro surgeons I’d contacted while I was waiting. And we were no longer getting reimbursed for the reversal surgery. I had planned to live on that money once the disability pay stopped. It was imperative that the reversal surgeon amend my records.
When I called his office, I spoke with a receptionist and told her what had happened. She was sympathetic and said she would have someone call me back to get it taken care of. I received a call back from the clinic’s office manager. She sounded furious. She said they have no record of my problems with Essure. I described my conversation with the doctor to her. I asked how I would know the surgery before mine was also for a woman with an Essure problem if I hadn’t been talking to him about Essure problems myself. I asked to speak to the doctor, to see if I could jog his memory about our conversation. The office manager shouted at me that the dr would never speak to me and that my records were going to stay just as they were. We will not be reimbursed after all.
The same day, I received a certified letter. It was from the second surgeon. It said she was releasing me from her care due to my “unpleasant behavior” toward her and her staff. I hadn’t spoken directly to anyone in that office since early November. I did leave at least two voicemails a week asking about the status of my surgery. Although I definitely communicated a sense of urgency, I was never rude. If she was still angry about our phone call in early November, why not release me from her care then?
So I’ve essentially wasted four months of my life in pain that is worsening every day waiting on a surgery that isn’t going to happen. I have a surgical consult with another NaPro doctor on March 7 in a city even further from where I live. I have no idea what is going to happen to us now. I technically am no longer under a doctor’s care. The second surgeon had ordered my physical therapy and when the order expired l, she declined to renew it because I’m no longer her patient.
I could schedule a hysterectomy with any local doctor but the scar tissue growth on my pelvic walls and digestive system (and, hey, maybe more places by now) must be addressed. The doctors I’ve spoken to up here don’t have any ideas for preventing scar tissue regrowth other than the Interceed method which has already failed me.
I’ve had no income this year. My friends organized a benefit concert and silent auction for me. They set up a Go Fund Me page that has gotten us through to now but the donations have stopped coming in. Which is ok, I guess. I feel terrible being a burden on those around me.
If the new doctor on March 7th doesn’t retroactively certify my disability I could lose my job. (And, therefore, my health insurance, meaning we won’t be able to do anything about the pain I’m in at that point.) A hysterectomy is no longer an option because the scar tissue has spread to parts of me that can’t just be removed and thrown away. We have to find a way to stop the scar tissue from returning. I think we had a good shot with the Gore Tex.
And my reversal surgeon, one phone call they’re offering me a year of free IVF and the next they’re screaming that they will not amend my records to reflect the truth so my insurance company can reimburse me? Something that won’t cost them a cent? I’ve begun to wonder if they are hiding something; namely that perhaps they are not doing the procedure that we Essure victims have been paying (a whole lot of money) for. Being a part of the Essure groups means you’re in contact with many, many women who have tried many different things to fix themselves. I’ve found other women who were treated at the same clinic where I had my reversal. None of their reversals have been successful. One lady had fragments of her Essure coils left in her body.
The procedure we were sold was this: Microsurgically, the dr was to go in and cut the Essure-containing part of the Fallopian tube at both ends and remove it. He was then supposed to reattach the now Essure-free end of the tube to the uterus. This shouldn’t result in broken coils or fragments left behind, unless they’re just knocking us out and yanking out the coils (something Essure’s manufacturer explicitly warns against). Is that why my inserts are missing? Is that why one coil is bent and broken?Were my coils broken while still in my body and that’s why I haven’t recovered? It certainly seems like the lady with multiple fragments’ coils were.
In the meantime, I have less and less to offer my kids. I can’t take them to the park or to Chuck E Cheese like we used to-both because I don’t have the energy and we don’t have the money. I spend my days riding the wave of nausea, cold sweat, dizziness and terrible pain. I’ve contacted a handful of lawyers (Not to sue Essure or its manufacturer, Bayer, because they are protected by PMA or pre-market approval which means we are legally barred from suing them) about the reversal surgeon’s strange behavior as well as my other surgeon ordering surgery by the end of 2015 and then just peacing out. All but two lawyers have called back and said I don’t have a case.
So everything, our financial security, my health, our security is on the line. This life I built for my kids, all by myself, from hitting rock bottom and landing in a women’s shelter to having our own place to live and a career that allowed for me to not rely on child support (that frequently goes unpaid), excellent medical care, and even a little left over for a family camping vacation each year...all of those things I love about my life and my kids’ lives hinge on this one doctor’s appointment coming up on March 7th. I am constantly consumed by fear and scrambling for a back up plan that will not come to me. I don’t know what to do. I’m sorry this is so long, but this is where I am. Thanks for wondering about me. Most of my time is spent curled in a ball on a couch...it really sometimes feels like I no longer exist but for pain.