Angie Firmalino’s Story
My husband and I married in 2005. I brought a 7 year old daughter to the marriage, and he brought his 9 year old daughter and her 11 year old half-brother. After a year of marriage, we decided to try to conceive. If I were to become pregnant, we agreed this would be the last child for us both. I became pregnant in August of 2008.
In May of 2009, I had an emergency C-section. In my birth plan, and during discussions with my doctor’s office during pre-natal care, I told them that if I were to end up with a C-section, I desired a tubal ligation. The on call surgeon did not perform the desired tubal ligation. Three months later, I was heavily persuaded by my obgyn to get the Essure Procedure. Unfortunately, I agreed to that.
August 27, 2009, I had the Essure Procedure. It was an extremely painful procedure and truly horrifying. I received three jabbing shots of lidocaine into my cervix. I spent 45 excruciating minutes in the stirrups in terrible pain during the insertion. My doctor had a very hard time finding one of my fallopian tube Ostia (openings), yet he continued, determined to get that coil in. I couldn’t get up off of the table after the procedure for about fifteen minutes. I was curled over in pain. (However, the doctor wrote in my file that the procedure took ten minutes, and that I tolerated the procedure “excellent”, far from the truth.) The next few days were painful, with heavy bleeding and cramping.
Over the next several months, the bleeding and pain did not stop. The doctor’s office never called me to schedule the required three month follow up HSG test. I honestly didn’t care, as I was not interested in volunteering myself up for another pelvic torture session. I couldn’t have sex anyway, it was too painful, and so I wasn’t worried about conceiving! I initially was told that the HSG was to check to see if I was occluded, but I was never told it was also to check placement. I was informed that after three months most women were occluded, some women took a little bit longer. Six months passed and the office finally called me, only to offer me an appointment for the HSG at 7:00 am, in a hospital that was an hour away! I told her that I had a nine month old baby, and two young daughters to get on the bus, and I couldn’t get to an appointment that early. She replied, “Well, it’s the only time they do this type of appointment, but at six months you should be fully occluded anyway….so don’t worry about it.” I replied, “Oh ok that sounds fine with me! We both laugh.” (Then she proceeded to write in my file that I refused the HSG due to child care.)
Almost two years passed, and I had these symptoms: sharp stabbing pain in my lower left side, back pain, heavy and constant bleeding, joint pains, fevers, fatigue, and depression. I realized that I hadn’t had an annual exam or a pap in a while, so I scheduled one. During that exam the midwife asked me how I was doing. So I proceed to tell her, and included that I had been bleeding for 30 days straight. She said, “Well that is not good” and scheduled a vaginal ultrasound. During the ultrasound, the tech asked me if I had an IUD. I said, “No, I had the Essure procedure”. She turned the monitor away from me and excused herself from the room. She came back in with the doctor. He took a look and said,”Wow, looks like one of her Essure coils is in her uterus.” Then he said, “Get dressed and meet me in my office.” He then proceeded to tell me he can remove it vaginally in the office and will give me whatever pain medication I would like! I must have looked like a deer in the headlights because he said, “Fuck no, you don’t want to do that right?” At that very moment, I knew this doctor was never going to touch me again. I walked out crying and never went back.
A few months later, after going to several doctors, I settled on an obgyn who was willing to remove them. She seemed kind and caring. I didn’t know anything about proper essure removal, because at the time, there was no information about it available anywhere. On April 20, 2011, she attempted to remove both essure coils, hysteroscopically (vaginally) under anesthesia and did a tubal ligation through my abdomen. One coil was embedded in my uterine wall, the other was almost, but not completely, expelled out of the other fallopian tube and was curled up on itself in my uterus. She cut out the embedded one, but had to pull that other out. She met with me after surgery and told me everything went fine, and she removed both devices and tied my tubes. Recovery was quite rough, but the sharp stabbing pain on my lower left side was gone, and my periods returned to normal. However I still suffered from fatigue, joint pain, back pain, and a new problem, debilitating headaches. I started a page on Facebook called Essure Problems, to warn my friends and family about this procedure, and share what I had been through. I was blown away to find so many women joining and telling similar stories, awful stories. I started to do some online research on Essure, and soon came across a website that talked about Essure removal, and how proper removal was essential, but difficult, because if you pulled on the coils at all they would break. I was concerned after finding this out. Right around this same time, the sharp stabbing pains had started coming back in my lower left side, in the same area that bothered me before removal surgery. My periods were getting longer and heavier again. I went back to the surgeon who removed the devices, to share the information I had found on removal, and to tell her that my pain was back, and bleeding was starting to worsen. I asked her if it was possible that she had left anything behind, and fragments. She couldn’t get me out of the door fast enough, she wouldn’t even LOOK at the information I had brought to her and told me she had gotten it ALL out. Then she said all I will do for you is order an ultrasound. I went for the ultrasound. I got a call from a nurse several days later, telling me that there was a small fibroid in my uterus, and that doctor could do a D&C. I asked if the fibroid was in the same area that my Essure coil had been embedded, and after being put on hold for what seemed like forever, she came back on the line to tell me she didn’t know what I was referring to. I said no thank you, to the D&C, and never went back to her again.
Eventually, I went to my primary care doctor and told him about the information I had found about Essure removal, and discussed my concerns about how she removed my devices. I explained that the pain had returned and more symptoms were piling up. He immediately did a pelvic x-ray. It showed several “foreign bodies” in my pelvis! I then ordered the operative notes from the removal surgery, only to find out, she broke a coil when pulling it out! I was mortified. I knew what those “foreign bodies” were, I had fragments. In the midst of all of this, I had also gone through one shoulder surgery, and one elbow surgery. My joints were deteriorating.
The rest reads like a diary entry:
Last week, my knee “blew up” while just leaning on it. At least that is what it felt like. I just had an MRI of that knee, and I have a severe ACL sprain, bone contusions, and tendonosis. Next week, March 14, 2014, I am having a total hysterectomy. A new doctor is removing my uterus, cervix, fallopian tubes and one ovary, possible both. Then I will face the knee injury. I’ve had enough. My body is deteriorating. I weigh 107 pounds. I get sick all of the time, I have no energy, no strength, and it hurts to eat food. It feels like I am 100 years old. I just want my life back, my health back. I want to be able to play with my four year old son. He’s never known a healthy mother. My poor husband doesn’t have the wife he married. It hurts to have sex which has put a huge strain on our marriage. I feel hopeless.
Update, surgery went well. Pathology x rayed my tissues!! Metal fragments were found in the left fundus of my uterus. I was right.
VALIDATION and a glimmer of hope, that maybe, just maybe, I will get better!
It is April 4th, 2014 today. My hysterectomy was March 14th. I came home from that surgery and was healing fine. I had minimal spotting, and my pain was manageable. On March 24th, I had my first post op appointment. My doctor did an exam, and he saw a small tear in the sub mucosal layer, but other than that he said everything looked good. Well, next day, Tuesday the 25th, I started bleeding. By the evening, it was fairly heavy. I called the office in the morning and they told me to come in. I was seen by the attending physician and he also saw the small tear in the sub mucosal layer, so he cauterized it right there in the office. I went home. The bleeding did not stop. I called the next day, 26th, and was told to come in prepared for surgery! I went to the hospital, was prepped and brought into surgery. They repaired the entire sub mucosal layer, said I had a few tears. I went home that same day. The next six days the bleeding varied. Some days just spotting some days more than that. On Tuesday morning, April 1st, the bleeding started to get heavy again. I called the office. I was told to come in. The doctor examined me, and said the sub mucosal layer was all still intact, which meant the blood was coming from the other side of my vaginal cuff. He ordered blood work, and ultrasounds. I go do the blood work, come back for the ultrasounds. First the ultrasound was over my belly, next it was vaginally. As soon as the tech pulled the wand out, I started to hemorrhage! Blood was everywhere. All over her table, her floor…. She called the doctor. He came in and said were going to the OR stat! They put me in a wheelchair, and I’m bleeding out fast. They get me through registration, up to the OR floor, get me in a gown, in a room, IV in, and I’m waiting for the OR to open up for me. About an hour passes. The IV fluids are filling my bladder. So I ask my husband to help me up to use the bathroom. I made it a few steps and exploded blood and clots all over the floor. It looked like my insides had dropped out of me! About a gallon of blood splashed onto the floor, up the walls, all over the toilet. There were huge chunks of blood clots the size of a deer’s liver (my husband’s words) all over the place. My husband yells for a nurse. They rush in the room to help me and clean up the bloody mess and one nurse yells OR STAT!!!! They put me on a table and off I went. Everyone in the OR recognized me. All I could hear is “she’s back AGAIN?” it was horrifying. As they had me transfer to the operating table, blood was dripping all over the floor. That is all I remember. I came to in recovery. I had a catheter in and vaginal packing. Very uncomfortable. Luckily the doctor didn’t have to go in through the abdomen, he was able to go in vaginally, undo all the vaginal cuff layers, and find the bleed. He cauterized everything, and did a deeper stitching with stronger thread. Hopefully that is the last time I ever see that operating room. I hope this is the end to this nightmare.
Well. It is April 20th, the day before Easter. Yesterday was my first post op since the third surgery. The doctor did an exam. He told me that the edges of the cuff were still very raw, and I was still on all restrictions. There was a small amount of blood on his glove after the exam that he showed me. He said not to worry if I had a little spotting that day. At 7:00 pm, I started bleeding. Not spotting, bleeding. I filled a pad in an hour. I called the office on call, and was advised to go to the ER. The on call doctor, and the assisting physician from all three surgeries examined me. They could not find where I was bleeding from. So they packed my vagina, and said I could go home or stay the night. I went home. Today I have to go back to get the packing out at 1:00. I don’t know what will happen after that. I made my children’s Easter baskets, just in case I do not come home. I am scared.
They took out the packing, and the bleeding had stopped. However, my insides are not healing. Was told to go off ibuprofen completely, which is nearly impossible for me, as I am dependent on it to function. But I am not healing. They have no idea why my tissues are still raw. I am a mystery. It was suggested that I go to a hematologist or rheumatologist to get to the bottom of the underlying issue of what’s going on with my immune system. I am completely lost. I don’t know where to go for help. It seems everyone thinks all my joint issues are unrelated, that my fevers and headaches are unrelated. The chronic dry eyes…. Etc. I know what foreign body reaction is. I have had to educate myself. But I cannot find anyone to help me. Now that I have had all of my reproductive organs removed, the last of the medical device is out of me. But I don’t know if my body will ever recover. I don’t want to live on ibuprofen and pain medication for the rest of my life, I want to be the normal, healthy, strong woman I used to be.
So here I am, Tuesday, September 9, 2014. This past Thursday I was experiencing some odd pressure down in my vaginal area. I felt like my insides were going to fall out. Friday morning, I had some urine retention, and continued pressure throughout the day. Friday night I stood up from my computer and I felt a gush. I went to the bathroom, and it was bloody discharge. From that moment until Monday morning I kept having gushes of blood and discharge, and blood every time I wiped. I went to my OBGYN on Monday morning. The vaginal exam was excruciating, and I ended up crying after he left the room. He ordered an ultrasound. That too was painful. Then he did another exam with his partner in the room. They said the ultrasound was ok, no pooling blood or hematomas, but my vaginal cuff was oozing and bleeding. I also had white blood cells and blood in my urine. The doctor cauterized my cuff with silver nitrate and gave me estrogen cream to insert every night for two weeks, and an antibiotic. I cannot believe that after all this time, I am STILL not healed in there.
I am on full restrictions again for two weeks. This is ridiculous. Fuck you Essure, and fuck you Bayer.
Later that day after I got home, the doctor called me, to inform me he forgot to check my labs. I have a very serious BV infection and need to get on stronger antibiotics.
I went through two rounds of antibiotics to get rid of the infection.
Also his course of action for getting rid of the granulation tissue on my cuff is to cauterize me with silver nitrate every two weeks.
It is now January 2015, and I am still going for silver nitrate treatments every two weeks. Every time I get it done, I am in pain for three days and bleed or spot. The cuff is finally starting to heal he says. Sex is still impossible and painful. Even if it wasn’t, I have such anxiety even trying that it just isn’t worth it, I usually just end up panicking and crying. I’m not too sure how a marriage can survive this. Maybe my husband is a saint. Who knows? But I know that it has ruined my sex life forever.
To all of you doctors who are still implanting this poison into women’s bodies….. Please stop. But if you won’t, because we all know how much money you make doing it, at the very least, listen to your patient when things go wrong, and learn proper essure removal. Stop butchering our insides.
Oh let me not forget the newest diagnosis, cervical facet syndrome and occipital neuralgia. To top off the bursitis, tendonitis, tendonosis, and epicondylitis. Great. I’ve started the injections for these headaches, to no avail. They seem to make things worse. Fun times, fun times.
It is now the end of February 2015. I’ve had two sets of nerve injections in my neck that did not work. I have recently had one set of trigger point injections in my neck muscles and he also gave me a sample of Amrix, an extended release muscle relaxer. For the four days that I had it, I had relief. He wrote me a prescription for Amrix, but my insurance denied the medication and it is $900 per month. So yeah, that’s my headache update.
My gynecologist has now retired, and has passed me on to his associate. When I went in for my most recent bi weekly silver nitrate treatment, he said that in these past ten months of having the silver nitrate treatments, he does not see much of an improvement, and wants to take me back to the OR to cut off all of the granulation tissue from my vaginal cuff. I took some time to think about that. I have finally decided that I am not going to do that, nor am I going to continue any more silver nitrate treatments. It is what it is in there, and I just need a break from medical intervention for a while. A long while.
It is April 24, 2015 now. I have not gone back for any more silver nitrate treatments and did not go through with surgery for the vaginal cuff. So far, knock on wood, I have not had any more episodes of bleeding or discharge. I am scared to have an exam, or to attempt sex, but we have tried it a few times, and the pain is decreasing some. Hopefully it will be gone one day.
My left elbow has had all the cortisone injections it can have, and I now await an appointment with an orthopedic surgeon to schedule that surgery. My right shoulder is at the same point, but I know how hard the shoulder recovery is, and I cannot face that any time soon. The elbow surgery just seems a lot easier to face. I keep wearing the knee brace when I have to walk long periods of time, as the sprain never quite healed. I haven’t faced that decision yet. One joint at a time.
I’ve had two sets of trigger point injections in my back and neck muscles now. The first set gave me a few days of relief, the second set didn’t help at all. I think the first time only worked because of the Amrix. I decided to take a break from those injections and even PT for a while and just try to manage the headache pain on my own for the summer. I’m sick of all the jack assing back and forth to appointments. I cannot afford the time or gas any more.
I’m going to try to get through this summer with just pain management. Probably schedule my elbow surgery for fall.
I now have a growth on my upper chest wall, as they call it. It is actually my side or my back, under my arm. Like the back of my arm pit. The ultrasound could not identify what it was. Ruled out lymph node, fluid sac, and fatty tumor. So, it’s not one of those. MRI next week on the lump. My God. Someone asked me if I think the lump is related to Essure. I said directly, no. Indirectly, probably. I’m sure it’s just some odd growth related to my fucked up immune system. Who knows, at any rate, it sucks.
Sept 2015. Just had an axial nerve injection last week. The most painful of them all. No relief from the neck pain or headaches. Next week I get to have surgery on my left elbow. The fun continues….
In two weeks I head to DC to attend and present at the FDA meeting on Essure. This ought to be interesting.
April 5, 2016
Wow, it’s been a while since my last update. Elbow surgery completed, healed fine. Have about 80% use of it again, which is much better than before surgery. Of course the surgeon spent about a total of 15 minutes with me during the initial and follow up appointments combined, so no luck there finding out if any of my joint issues are related. The weird part of surgery though, was they were not able to put me under with IV sedation. So I was awake my entire surgery which was weird. I couldn’t feel it, but just knowing that sedation was a problem was concerning. My worries are that I am becoming sort of immune from these types of medicines. I notice my pain medication rarely taking effect any more, and my joints seem to be getting worse and worse, faster and faster. I no longer can go without a knee brace, and I cannot walk for long periods of time any more. My headaches have worsened, as the pain in my neck now goes down about two more vertebrae to the big bone at the back of my neck. I am never without muscle spasm, so I continually feel like I have a stiff neck, and in the worst way.
I had gone to my primary care doctor for pain in my lower right side of my back, thinking maybe I had a kidney infection. He did a urine culture, and it showed blood. He sent me for CT scan, thinking possible kidney stones. CT scan showed it was a cyst on my remaining ovary about twice the size of my ovary. Sure, the one thing they didn’t take out of me, now does grows a cyst. Well, at least I didn’t have to pass a kidney stone! I was required to follow up on the blood in the urine though. So went back for second urine screening only to find out there was even more blood. I have now had an ultrasound, and the cyst is shrinking, but the cyst couldn’t be the cause of the blood in my urine. So I have a referral to an urologist. Yuk. Haven’t made that apt yet.
Also had my annual mammogram. Because of dense breast tissue they wanted an ultrasound. That showed two masses, one in each breast. Today I go for what I assume will be biopsies at the surgical center in Hudson. I shall keep you posted.
Breast surgeon was super nice, and said she felt comfortable with the ultrasound report and images, saying that the masses were most likely benign, but that I will need to follow up with another ultrasound in six months. No biopsy required at this point. Phew. Mass on my chest wall still growing larger. Headaches worsening.
4/27/16 Today I got a cortisone injection in my right shoulder. Hopefully that will bring me a little relief for a few months. My knee is killing me, but I have not yet made an appointment to go back to the ortho. Currently I have a referral to a new rheumatologist, an urologist, and a cardiologist. I have yet to make any of those appointments. Most likely I will not.