I’m on my way to be interviewed by the local news and I’m fucking pissed.
I’ve emailed links about this story to firstname.lastname@example.org twice but heard nothing back. Seriously disappointing, Jezebel. This is a women’s issue-a feminist issue.
Back in 2013, after the birth of my 5th child I decided I was done having children. I could either get a tubal ligation or a device called “Essure,” twin metal coils, one implanted into each Fallopian tube that incite the growth of scar tissue, closing the opening of the tube where it meets the uterus.
I was working in retail at the time and couldn’t afford another six weeks off in addition to the six weeks of maternity leave if just taken. I opted for Essure-a “non-surgical,” in-office procedure that-per my doctor and the manufacturer’s info sheet-might cause mild cramping for three days but after that, I’d be back to normal.
At my procedure, my OBGYN gave me a Valium and had me lie back on a table. There was a man in a suit with a briefcase watching from the corner of the room. It was instantly, unbelievably painful. I sobbed through the procedure, the office waiting room and the whole car ride home. Imagine a metal coil, slightly larger than your nostril being forced in as far it would go and then expanding to hold itself in place. That’s what I’d just done to my Fallopian tubes. I learned that there are a lot of nerve endings in Fallopian tubes
I’d told my OBGYN beforehand that I’d had a copper IUD for about a year once but that I ended up bleeding constantly and I had to have it removed. She said the Essure was a different kind of metal and I wouldn’t have the same issue with it.
I immediately began bleeding. Profusely. The next day I began passing what I guess was tissue-it looked like raw chicken skin; lavender and shiny-in pieces larger than the palm of my hand. I called my OBGYN. This was “normal” but no one had told me this was going to happen and was not mentioned anywhere in the manufacturer’s information I was given
All told, I bled consistently for the next 10 months. I had constant pelvic pain that would occasionally peak to where I couldn’t bend over to tie my shoes if I was lucky. During the worse times, I would vomit uncontrollably. I went to the ER dozens of times. No one could find anything wrong. I had X-rays, CT scans, ultrasounds, blood work...everything they could think of. None of the doctors or nurses there had heard of Essure but one. He said he and his wife had researched it and ultimately decided against it. Every doctor insisted my pain was not from Essure. Even the doctor who had urged his wife not to get Essure said he would “hang his hat” on my having an STD that was causing my pain. I didn’t.
After each ER visit, I’d be told to follow up with my same OBGYN. She offered me an ablation, birth control pills and eventually a hysterectomy. One visit, I had to see a partner in her practice because my doctor was out on maternity leave. This doctor told me that my pain was definitely not from Essure, though she doesn’t do the procedure herself. I asked her why and she said “Leaving metal lodged in soft tissue is not a good idea.” “Why,” I asked, “because it can cause the symptoms I am having?” She told me that Essure was too small to cause pain. I said that needles are smaller than Essure yet it still hurts when you get a shot. She insinuated that I was a pill seeker and refused to answer any more of my questions.
Eventually, I found a group on Facebook called “Essure Problems.” There I found women with stories that echoed my own. Through that group, I found a doctor out of state willing to perform a reversal (although the makers of Essure do not have a recognized, studied, safe procedure in place for Essure removal or reversal.) and I traveled to Florida from Texas for my surgery.
It was full abdominal surgery, but to keep costs down they performed it on an outpatient basis. I had to take out a six thousand dollar loan (that I’m still paying off) and was sent back to my hotel in excruciating pain. I cried for the next 36 hours. The only thing that brought me any relief was listening to “Cherry Wine” by Hozier on repeat. I could not eat, walk or sleep.
I was only granted disability from the date of my surgery onward for three weeks. The prior month where I was in so much pain that I couldn’t stand or walk for any length of time was denied and I lost my income during that period.
After healing from the surgery, I was pain free for six months. It was amazing. But the pain returned.
The first month during ovulation, I felt like I was being stabbed. The second month, I experienced sharp, stabbing pain again during ovulation. I was at work at the time and the pain caused me to start vomiting uncontrollably. They took me to the ER where again, they found nothing wrong and told me to follow up with my OBGYN.
I should mention that no other OBGYN would take me on as a patient because they hadn’t been the one to place my Essure device. They all-even ones who had been my doctor before and delivered my babies-refused to touch my case.
That second month of ovulation pain also included sharp, stabbing pain during my period. I begrudgingly followed up with my OBGYN. She did an ultrasound and said she could see blood trapped in what she assumed was scar tissue around my “cul-de-sac” (scar tissue is not visible by any external imaging). She said that she couldn’t get an image of my left ovary, a problem they’d also had at the ER. She said that I should just take birth control pills because then I wouldn’t ovulate or have periods anymore
The third month, the pain came back full time. I still tried to work but was missing at least a day per week. I felt trapped, like I was never going to get better. I went back to the Essure Problems board and found another OBGYN, one who cleared time in his schedule every week to meet with women having problems with Essure. From the time that I called him, I only had to wait a week for my consult. (Other doctors were willing to do a surgical consult, one was booking appointments a month out, another was booking five months out. A third one hasn’t called back to this day.) None of these doctors were in my hometown although I live in a major metropolitan area We had to drive 200 miles each way to see the doctor who treated me, like this is goddamn Little House on the Prairie.
He, too, had trouble getting an image of my left ovary and once he did, he said it was stuck in place. I screamed through my pelvic exam, I was in so much pain. He set up a laparoscopic procedure for me for the following week so they could clearly see what was happening in my body.
During my laparoscopic procedure, they found the source of my pain. The scar tissue that Essure was supposed to cause to grow only in the ends of my Fallopian tubes had grown there, and outside my Fallopian tubes and outside my uterus; fusing my ovaries, tubes, the fat pad that separates my reproductive and digestive systems and my bowels together. Then the scar tissue wrapped tightly around them, like a mummy. As it turns out, ovaries and Fallopian tubes have similar nerve endings to testicles. He explained that I was feeling like someone with their testicle stapled to their leg, every. Single. Day.
The FDA had a hearing on September 24th where a panel heard from doctors, engineers and women who have suffered from Essure side effects. Essure’s owner, Bayer, was present. All that came out of this hearing was that Essure would be classified as a surgical device and that maybe it shouldn’t be put in women who have problems with metal in their bodies. Oh, and that maybe there should be a medically sound procedure for removing Essure if something should go wrong. Which it has, for at least the 24,000 of us who found the Facebook group. I’m sure there are many more women who were told by their doctor that Essure is not the problem and they believed them. Who wouldn’t believe a doctor’s opinion? I went to nine doctors before anyone did a laparoscopy to find the source of my pain. Can you imagine being told that there is no verifiable source for your daily, excruciating pain? To be told that maybe you’re crazy, or a pill addict or have an STD? And to keep going to doctors in spite of it?
So now, I’m in a car on the way to be interviewed by the local news about what Essure has done to my body. The only way to completely, safely remove it and have a likely chance of no scar tissue regrowth is a total hysterectomy. I chose a reversal, not knowing that there is a risk in reversal that the PET fibers that comprise the center of the Essure coils and cause inflammation and scar tissue in everything they touch were likely to be left behind in my body. These too are invisible by a scan. The only way to completely remove them is to remove any internal body parts that are being affected by them. But I can’t have my digestive system removed. So we have to work with what we’ve got. My doctor said that a hysterectomy is in my near future, but I’m hoping for a miracle. He said I have one of the five most damaged reproductive systems he’s seen in his career. (After he saw me last week, he upgraded me to the auspicious title of the worst reproductive system he’s ever seen.)
You and I both know damn well that if the FDA had approved a product that resulted in 24,000 men having to lose their penises and testicles that these men would not have to plead their case on Facebook or the local news or be given a comments section on the FDA’s docket. (A comments section that is missing about a third of the submitted comments, including two of mine-including one that contains the images from my laparoscopic procedure-proof that my pain was caused by an overgrowth of scar tissue that had never happened to my body prior to Essure.) Dont believe me? Check it out for yourself.
On the right side of the screen, you’ll see that (as of this writing) 2,201 comments have been received but when you look at the “View All Comments” link in the center of the page, it shows a total of 1,453. I’ve commented three times, each time giving the reference number of my previous posts so as not to appear to be deceitfully padding the numbers. I’ve always used my own name. I carefully cropped my identifying information out of the photos of my procedure so as not to violate the terms set forth for the posts (also viewable on the right side of the page). My last post was “Do you believe us yet?” with my surgical photos attached. I posted it on September 30th. It is not there.
Multiple women who participated in the clinical trials testified at the hearing that their responses to questions during the trial were altered without their consent to show lower levels of pain and bleeding. Some women who reported pain were never again asked about pain in any of their subsequent visits. Some women dictated their answers to nurses who wrote wrote down completely different responses-all of them making Essure appear safer. These clinical trials won Essure something called “preemption” meaning unless the FDA withdraws that status, none of us can sue essure’s manufacturer
They knew this would happen to us and they let it happen anyway. Because we are women and our credibility is doubted from the outset, the only way we are going to effect change is by raising our voices together. I hope this piece is seen and heard and that it adds more voices of outrage to the cause.
My surgery from September failed. The scar tissue returned, this time almost immediately.
I still haven’t returned to work. The surgeon who did my procedure in September used something called Interceed in an attempt to prevent the scar tissue from growing back. It has a 65% success rate. I am not a part of that 65%.
The surgeon who helped me in September said that I needed someone more specialized to help me since I need a repeat surgery. I found this doctor in another city, 300 miles from my home. I met her once for a consultation in late October. She said I will need an extensive procedure over 9 hours with 4 types of surgeons participating. She said it would be difficult to schedule, as the holidays were quickly approaching. I left under the impression that she would schedule me ASAP and I would recover and return to work.
Three weeks later, she contacted me to tell me that she would like for me to complete two months of physical therapy before she operates. The physical therapist mashes around on my abdomen, trying to loosen the scar tissue from the outside to make the procedure easier once the surgeons do it. It is incredibly painful
The new surgeon gave me a note for work that said to please excuse me for an undetermined amount of time due to complications from my previous surgery and that I will return to work after I recover from my next surgeries.
There will be two surgeries and I will have to stay in this city, 300 miles from home, while they are performed. The first procedure will remove the new scar tissue and she will then sew Gore Tex to my insides to inhibit scar tissue regrowth. The scar tissue grows back between the 5th and 7th days post-op. Her plan is to leave the Gore Tex in place for 10 days and then do a second surgery to remove it. It’s a new approach to preventing scar tissue regrowth. No doctor where I live has heard of it, which is why I am required to stay there-300 miles from home-for two weeks. That way if complications arise, a doctor who understands the procedure will be available to me. I could get an infection, I could bleed uncontrollably. I do not know who will care for my children during this time.
Of course, the company who manages leave for my employer did not accept her vague note in support of my disability claim. I returned to my GP who ordered two weeks of bed rest. I supplied the leave company with that note. At the end of the two weeks, I returned to the first surgeon (200 miles from home) to have my leave extended further. The new surgeon refused to be more specific than the note she had already written. The old surgeon was willing to take a guess at my return to work date by adding the two months of physical therapy, the two weeks for the procedure, and the six weeks of recovery. No more laparoscopic procedures are possible for me because the damage is so great now.
Two days ago, I received an email from the leave management company saying that my disability has been denied going all the way back to 11/6. I haven’t been paid in over a month and my job is no longer protected.
They would not approve the two weeks of bed rest from my GP because they felt that was “just her opinion.” (A doctor’s opinion.) They wouldn’t tell me what was in the fax they received from my first surgeon. They insinuated that I am a liar because all of my symptoms are self-reported...because there is no scan that will show you internal scar tissue the only way to see it is to open me up-a fact of which the leave company is aware. My old surgeon won’t operate because he says I need someone more specialized and my new surgeon won’t operate because she first wants me to complete the two months of physical therapy. She never mentioned physical therapy at my consultation appointment. She decided I needed it three weeks after my initial appointment with her, after I’d left several messages inquiring about when my surgery would be scheduled.
I can’t even just have a “simple” hysterectomy at this point. The scar tissue has spread beyond my reproductive system. The interior walls of my pelvis and my digestive system are also affected. Something more effective than Interceed has to be used or the scar tissue will keep growing back. My right ovary can’t be visualized on an ultrasound, pelvic or transvaginal. They think it has fused to my rectum. A hysterectomy won’t resolve my issues because the damage was ignored for so long
I’m now not getting paid. I haven’t been paid. My job is not protected. I don’t know what my employer will do but they have grounds to fire me at this point. If they do, I will lose my health insurance and won’t be able to afford any surgery at all. I suppose this means I will just live in pain forever. I have until Christmas Eve to make the leave company believe that what is happening to me is real. They won’t tell me what is in any of the most recent supporting documents my doctors have sent. The leave company has “72 business hours to review them,” moving us closer and closer to the deadline without me knowing what they need or how to get it or what to do.
I am terrified.
I’ve reached out to my GP, physical therapist and my first surgeon to try to get more definitive information to share with the leave company. They know my job is at stake. We have already lost our government child care subsidy since I have been sick so long. We will have to go through the 6-12 month waiting list to get it again once I am well enough to work. Had my new surgeon been able to give me a tentative return to work date, we wouldn’t have lost it. She knew this.
My trust in her has been shaken. The next closest surgeons who can do the procedure we had planned are in Iowa and Nebraska; much further from home than 300 miles. I know someone in the city where my next two surgeries were originally planned, I had a free place to stay and someone to monitor my health. I have no one in Nebraska or Iowa.
I in addition to insinuating that they don’t believe my disability claim, the leave company has hired a nurse specifically to review my case because they don’t believe anything is wrong with me.
My pain management doctor will not communicate with the leave company at all. After my most recent visit with my old surgeon, he recommended a change in my medication because what I’m taking does not effectively manage my pain. I am “under contract” with my pain management doctor, meaning all prescription medication for the treatment of pain can only be written by him. My old surgeon contacted him to recommend the change. The pain management doctor refused, saying that he doesn’t see any reason to change it, despite knowing it is not working for me. I got the impression that he didn’t like his opinion being challenged. But my surgeon has been in my body, he has scoured my medical records and I trust him. My pain management doctor declined to even glance at my medical and surgical records saying that “They don’t really matter.”
Yesterday I took three of my daughters to a Girl Scout event I can usually sit or even stand (if there’s something to lean on) for about an hour I made it to an hour and a half but had to leave at that point. My pain was at a ten the next 24 hours. Nothing helped. I promised the kids I’d take them to see Santa today and I did, but now I’m in a wheelchair. I no longer recognize myself or my life
If I don’t get paid anymore while I’m out, I don’t know what will happen to us. But even that outcome would be manageable. If I lose my job and health insurance, there is no way I can pay for these two upcoming surgeries.
I am so afraid.
My friends set up a Go Fund Me page for the kids and me. If you would like to read more about my story, please visit www.gofundme.com/jazzhandsjess
It’s ok to not donate the most important thing that you can do with this information is to spread it far and wide. There are women suffering just like me who have been dismissed by their doctors and believed their incorrect, uninformed opinions. I want to reach them and tell them to keep fighting. I want to tell them where the doctors who will believe them are.
I’m now taking two different types of anxiety medication but still I lay in my bed with my heart pounding thinking about the havoc I’ve wreaked on my family’s life. I feel like the ultimate failure to my children. I researched Essure before having it implanted but found nothing negative. I believed the manufacturer who said that I may have three days of mild cramping but nothing further. When I told my implanting doctor about my year of constant bleeding when I had a copper IUD, I believed her when she assured me I wouldn’t have the same issue with Essure-even though it’s metal too. One bad decision, made believing I’d done my due diligence, has negatively impacted every day of my life since. And it’s only getting worse
**I have gone back and mildly edited for spelling errors and clarification purposes. I raged typed this on an iPhone while riding in a car.