As I head into surgery next week I am reflective over the last 7 years that has brought me to this place. I would like to say that I am not scared but I am. The what if’s that surround me are terrifying. Looking back at these last seven years is also terrifying. Do I really want to live in this place of worry any longer and the answer is no.
Essure is a permanent birth control device that was marketed by doctors as a safe, worry free sterilization device. Only two 4mm long coils were to be placed in each fallopian tube to make scar tissue so the access to sperm would be eliminated. A non invasive procedure that could be done in the office of your OBGYN while awake. Win win for everyone.
Essure trials were done by pre market approval as set by the FDA. This was a single study of just months with about 100 women for a device that would be implanted for eternity. I have many issues with how the FDA approves new medical devices. I don’t believe I could ever trust them again.
My journey began in December 2012 I was 22 years old. I was in my last week of pregnancy I had gained roughly 36lbs. I had my daughter on December 7th. Nothing was wrong, perfect delivery. Healthy baby girl. Healthy Jamie. Go home the next day. On December 14th we had a Christmas party at my in-laws house. I was feeling good, no more bleeding. I was my pre-pregnancy weight of 120lbs at this party. I wore an awesome dress with heels. Was able to breastfeed beautifully.
We have our follow-up baby appointments. Time marches on into January 2013. Six weeks after giving birth which had been a wonderful time for us we went in for my essure appointment. I am taken into a room where I am instructed to undress. I am given a depo shot in the hip which is an injection of birth control because it takes three months for the scar tissue to form. I try to tell them I don’t want that shot because I am breastfeeding. I am told it won’t affect it. I lay back on the table, put my feet into the stirrups and try to relax. She inserts the duck thing and pulls it apart. Then she loads the applicator. She sticks it in and pushes and I hear click, click, click, click. Horrible pain not pressure. She loads the applicator again and I hear the click, click, click again. Soaring pain again.
While still laying on the table almost in tears she tells me I might spot for a couple of days. Rest today and I should be able to return to normal activities tomorrow. I need to stop by the desk to schedule my dye test for confirmation it worked. I’m thinking I am a wuss and to just suck it up I am fine (this is how I deal with things. I push through telling myself you are fine). I go to stand up from the table, which I haven’t moved from in twenty minutes. As I swing around and place my feet on the floor and hop up blood goes everywhere to puddle around my feet and toes.
I feel my eyes go wide. No one said anything about this. I feel weak. I believe I stand there for a minute thinking someone would come and check on me. Sadly this does not happen. As I contemplate my next move this anger and embarrassment take over me. I already felt violated from the procedure. I did not like it and felt I was underprepared for what it actually felt like. Then to not be warned that when I stood up I would be covered in my blood with no help was the tipping point for me. I cleaned up the best I could. Myself and the floor all the while just being pissed at this whole thing. It was then I knew I had been bamboozled just not to the full extent I know now.
I get dressed and I am almost in tears. I walk to the lobby to find my husband who had just started feeding Gwen. I tell him we have to go. He says he can’t because he is feeding her. I told him fine you can stay but I am leaving to give me my keys and I practically ran out the door. Obviously something was wrong with me so as he watches me high tell it out of there he packs up the girl and follows me out as quickly as possible. I am just sitting in my car trying to process what just happened.
On the hour drive home he questions me. I don’t remember what all I told him if I told him anything. I was so embarrassed and vulnerable and a prude. Talking about this was not something I wanted to do. I know that. I was also very preoccupied with bleeding all over my gray seats.
When we got home and I was in bed I remember thinking ok maybe this was a fluke. You have your dream of being sterile. Everyone is different. Maybe fleeing the scene was not the best course of action. Calm down it couldn’t have been that bad. This is what I told myself.
I return to “regular” activities the next day. I return to my job as a mom of two. I am still in terrible pain, but everyone is different. Again, I might just be a wuss. Still bleeding but I just had a medical procedure that shoved two coils into my snooch. All these symptoms I could explain away.
Three days go by still bleeding, still hurting. Days go by and for me no change but Gwendolynn starts getting mad. She’s two months old there is not a lot for her to be mad about. So I go through the list. I breastfeed her. I sing to her. I changed her. I burp her. I play with her. I try to nap her. I breastfeed her some more. Still no change. I put her down and get my electric pump. Strap that sucker on and nothing. No milk. The girl is starving.
We buy formula but I am devastated. I sent Atticus to my parents house so me and Gwen could do a three day weekend breastfeeding boot camp. I drank tons of mother’s milk. I prayed. We did skin to skin all day all night. I kept Gwen on my boobs for three days. But the cow had dried up. “I told you so” never felt so empty. I regret that the most maybe. Bamboozled and lied to.
Giving up breastfeeding because of my depo shot was devastating. Hindsight being 20/20 I was still in pain, still bleeding and would be for a long time so I most likely would have given it up eventually but my choice and my options were taken from me. That stung my heart.
So months go by. I had Medicaid at the time. Even if I had wanted to do the dye test I couldn’t because my Medicaid ran out before the three month time period. I did some reading up on the things I was experiencing and found out all this horrible information that was not disclosed to me about the essure. Found out that these coils could migrate, one was found in a woman’s brain. That you could still get pregnant. That they can perforate many organs around that area. There were a slew of symptoms, the next one always more horrible than the last. Still bleeding. Still hurting.
I started drinking it hurt so much but being numb helped to not feel anything.
One night I was in awful pain. My medicaid was about to run out. I believe it was the last day I would have it. So I ran up to the ER. I tell them I have been bleeding constantly. I had this essure put in a little more than two months ago. I am in a ton of pain. Could they do my dye test because I am afraid it might have migrated. They don’t know what essure is. They can’t do a dye test. They give me an x-ray and say that they are properly placed; even though they don’t know anything about it. Basically it’s all in my head. That’s when I decided I was on my own for this essure journey.
Two years passed and my body mellowed out. Stopped bleeding constantly. The pain was always there but manageable. I read up on it every couple of months and found out about pet fibers. Saw that doctors were taking them out wrong which caused worse symptoms than the regular coils did. Every period was heavy. Gross even. A fog settled in my brain. I think I might have been depressed. I honestly can’t really remember what I did those two years. Gwendolynn was small so I mostly stayed home with her.
I know one day around this time I was laying on the couch horribly cramping feeling like crap when it occurred to me that I was letting essure win. I was literally watching my life go by while I heat pad myself on the couch. I was 25! Yes, this is horrible. Yes, this hurts. Yes, I wish I could sue someone. Unfortunately, I can’t. What I can do is get up off the damn couch and start living life vs sitting here feeling sorry for myself. I told myself it doesn’t matter if I am laying down or doing the dishes I am still in pain. I might as well have some fun while in pain.
That is exactly what I did. Over these next two to three years I really tried to make the best of an unforgivable situation. I was scared to get them taken out at this point because I knew that the coils had to be extracted whole. You can’t cut or pull them out, but few doctors knew this at the time and I did not want a full hysterectomy and my pain and periods were a hot mess but a controllable and ignorable hot mess. I also did not want to argue with a bunch of doctors over whether or not my issues were from essure. I did not have the energy for that or the money to go see specialist after specialist. So I drank on bad days and lived my life.
I went and got a two day a week job at a coffee shop. I started crafting again. I saw friends. I went out. I always carried tampons and pads and loaded up on periods. I started a business that taught me a lot. I was still hurting but I felt like I had plateaued here and it was manageable. Maybe I wasn’t 100% myself but I could do something besides complain. I wasn’t always comfortable but I could ignore it. Man, did I get great at ignoring it. I applaud myself for that ability.
I don’t remember when I started gaining weight. But one day I woke up and was 130lbs. Then 150lbs. I have tried several times to lose weight but nothing was successful. I have always been in the 120lb range so this is so foriegn to me to be this big. It is mostly in my stomach. It looks like I am pregnant. I have even had people ask when I was due. I had a lady at a funeral tell me I looked bigger in 2016. I was still able to wear the beautiful black dress with red trimming at that time. I can no longer fit into that. Over half of my wardrobe is out of the question now. Can you believe most of the time I wear shorts and T-Shirts because my dresses don’t fit and I can’t lose weight? I swore I would never be that basic but here we are.
My hips hurt. My mom thinks my hands look arthritic. I have constant brain fog. I have low energy. My eyes are more sensitive than they used to be. My joints hurt. My periods are bad. My cramps are worse. I am stiff. My hair falls out. It feels like my muscles are always tense, if you poke me it hurts. I have a hard time getting comfortable sitting in a chair because it feels like it stabs my sides. My kidneys hurt even if I don’t drink for weeks. Bruises take a long time to heal. My abdomen always hurts somewhere. My teeth hurt. I have an itchy rash that doesn’t go away..
These are the symptoms I can think of right now that I have been saying were manageable for the last two to three years. None of these things occurred prior to my essure placement. I was in my twenties feeling fifty. Looking back I am in awe that I taught myself to live like that.
Things now are no longer manageable.
It probably started back in summer of 2019. It is my belief that I didn’t notice these changes because I have gotten so good at ignoring all the pain my body is in because there has been no relief in these past seven years. Looking back I did notice things changing. I looked them up on Google. They seemed to be normal. The pain was there which would probably tigger someone else but I am always in pain so it was just a normal day, week, month for me. So I went on my merry way thinking everything was fine.
January 2020, it was discovered that I had left a tampon in for probably about 5 days. I had to go to work but I was running a fever at the time so I asked if we could call in someone to finish my shift so I could go to Urgent Care. I was in horrific pain that day. I normally at work can put on my customer service smile and forget about the pain but that day it was overwhelming. I am also one not to make a huge fuss about stuff. Especially my stuff so I tried to just remain calm. It is probably nothing. Relief comes at 8:01pm. All the Urgent Care’s in my town are closed, but I left work early so I have to get a doctor’s note so I run up to the ER.
I tell them I am an idiot and I was just afraid of TSS. They put my feet in the stirrups, she stuck in the duck thing and opened me up. She pulls it out and tells me I have gonorrhea. There is no way I have gonorrhea. But she’s the doctor I am freaking out in my head. She starts asking me who I am sleeping with when I tell her my husband she starts man bashing. The whole thing was absolutely traumatizing and made me madder than a hornet. I am sitting there waiting for other tests and twocome up positive for BV and a UTI. They said it would take a week to process the STD test.
I know my husband and I know me and we are not sleeping around. But I waited until I got my STD test back before I went and made a stink. On Friday morning I call the ER and they tell me if you haven’t been contacted then you don’t have one. I told them it was my test and I want the results now. They said it was clean. I already knew that and I filed a complaint against that doctor because screw that and her. I have enough problems without some stupid ER doctor without any testing telling me my husband is stepping out. OMG still so mad.
I get my antibiotics. I took them for maybe two weeks and it felt like forever, three times a day. It was a horrible infection that was probably festering for months. Then, I am supposed to get a follow up appointment. Here is where I decided to look into BV and essure because I am a little young to have it. I just turned 31 and from what I understand this is a menopausal problem mostly. Yes, BV is a side effect of the essure. I was wrong. I had not plateaued. Bamboozled and lied to.
From my reading if you get one BV infection you will get another and another and another. That is unmanageable for me. I won’t do it. So I took my knowledge of essure extraction and started looking for doctors who do it right the first time. I found one in Austin, Tx; Dr. Tassone. I made my appointment. I found Dr. Moorehead to follow up care of my BV infection and set the appointments.
Then, coronavirus. This halted many things. I was not able to do the follow up care with Dr. Moorehead. I had to postpone my surgery with Dr. Tassone. I know many people who were and are currently in this same situation.
Now we are at the end of June. Last week, I started seeing some of the things I had ignored last summer. I have another BV infection. I call Dr. Moorehead and he is so backed up until mid July-August for new patients. I call Dr. Tassone and tell him I need antibiotics, I think I have another BV infection and new patient appointments are backed up until mid July. He said he would look into it. The same day Dr. Tassone office calls and said there was a cancellation and I can have my surgery July 2nd.
Relief is in sight.
Luckily, my work was already aware that when I got the surgery call I was going. Luckily, my husband already has most of those days off. Luckily, we are in a position to drop everything and run to Austin to have this surgery.
So today I am thankful.
Thankful for so many things. Thankfully I am sterile. That was the ultimate goal in all of this and it was successful. Thankful that I waited and didn’t have them removed wrong during those first two years of hell. Thankful that my body has fought off these devils with great overcoming strength. Thankful that in the scale of women’s stories that mine is on the lower end of the scale of terrifying. Thankful for my husband and him putting up with my mood swings and my bad days. Thankful that my kids have been kind and concerning. Thankful that Dr. Tassone is just two and a half hours away and he is the best in the business of essure extraction. Thankful that this part of the journey ends in 7 days.
But the journey is not over. There is massive healing that needs to happen in my body on an individual level. There is massive healing that needs to happen in this country. There is massive healing and justice that needs to happen for women implanted with the essure whose stories are sadder than mine ever thought about being. Bayer should be held accountable for all that has happened to me and to others.
Again, I am scared. Not of surgery but that I won’t be normal again. That pain will encompass my life until I die. That the weight won’t come off.
But as the days become shorter I know with every fiber of my being this is the exact time it is supposed to happen. This essure device has shown me how strong my mind is. Maybe these symptoms won’t go away but at least the anxiety of migration, preferation, and pregnancy will be long gone and I will finally have true peace of mind. To be free of that is something I am very excited about.
Jamie -An Essure Survivor