I've been trying to write this story for about 6 months now, but it's a tough one to type out. So it seems fitting with tomorrow being the one year anniversary of my journey with IUD poisoning, to finally sit down and write through the darkness.
I am writing my story for a few reasons: firstly, to release the thoughts and words that I've been living with from my physical body as well as emotional and psychological. (easier said than done, I believe). The second reason is to send my story into the ether to educate women and to simply speak my Truth.
On October 20, 2016 I had an appointment with my Doctor to have an IUD inserted. I hadn't been on birth control for about five years and knew that I didn't want to be on the Pill again (hello crazies). Seemed like the cool, trendy thing to do, to get an IUD. Since I didn't want hormones pumping into my system, I chose to get the copper IUD (Paragard). The procedure isn't all that comfy, but I tolerated it, adding a little bling to my uterus. For the next three weeks, I always knew it was there. I could feel it. I figured that I would get over that sensitivity in time and just moved on.
Fast forward to November 7, 2016: my first period after getting an IUD. I had been warned that my period could be heavier, more painful, so I prepared as well as I could, with teas and other remedies. I'm strong and have a high tolerance for pain (almost dying in childbirth gives you that superpower), so I thought "I've got this".
Holy Shit you guys, it was awful. Pain radiating into my legs, complete exhaustion, abdominal cramping like I had never experienced (even in labor). Plus I just felt like complete shit. I definitely starting second guessing this whole IUD thing.
By Wednesday, I was in a bad state. I went to work, took a yoga class doubled over in pain, barely able to get off the ground, taught for four hours without getting out of my chair (an absolute rarity for me) and took my daughter out to dinner, where I promptly laid down in the booth with no appetite.
By the time I went to bed, I was shaking uncontrollably, convulsing. I had such severe pain radiating from my pelvis once an hour, it felt like contractions. I finally realized: this is not menstrual. There is something really wrong.
The next morning, Thursday November 10, I hobbled into the car, shaking, to take my daughter to school and got home to call the Doctor. Drove myself across town, convulsing (I still don't even know how I did it) the whole way to his office. It probably took me close to 10 minutes to walk from the parking lot to the reception desk. I waited, shaking, thinking the nurse would come get me. I have never ever seen a doctor come out into the waiting area to get a patient. I knew then that that wasn't a good sign.
At this point, I was convinced that my IUD was floating around puncturing all my organs, because that's exactly what it felt like. At the least, I thought it had come loose. My doctor examined me and said that it was exactly where he had inserted it three weeks earlier. He continued to examine me, my vital signs all over the place, my lips turning blue, and still . unable to stop shaking.
"The IUD is exactly where I inserted it three weeks ago, but I think that you might have an infection, and I think you need to go to the hospital right now."
Well, shit, I had so much to do that day and had a whole day of teaching that afternoon. Ok, a few tests won't take too long and I'll feel better and be home to teach and make my daughter dinner.
I got into the ambulance and started sending texts. Making sure my daughter was cared for, that she could stay with her dad overnight. She was already scheduled to stay with him for the weekend, so I figured, perfect, lots of time to rest once I'm home.
I have to say, when an ER is awaiting your arrival via ambulance, it sure speeds up the process to get you into a room. Got into my room immediately and hooked up to many machines. My vitals were all over the place, had a fever and was severely dehydrated. I had numerous tests (and numerous hands up into my vagina, thank you very much), including a vaginal ultrasound and my first of many CT scans.
They were stumped. Could not figure out for eight hours wtf was going on with me. In the meantime, my abdomen/pelvic area was filling up with fluid and I looked about three months pregnant. Because of my crazy vitals, I was admitted overnight for observation. Once I was up in the gynecology/birthing wing, the gynecologist on call came to see me. Yet one more hand up my vagina and she very emphatically assured me that I did not have any infection of any kind. She thought I had gastroenteritis, which is doctor speak for stomach flu.
Right. Bullshit. This was not stomach flu, but whatevs.
The next morning, hurray! My vitals were right where they needed to be to be released and bam! I was allowed to leave the hospital. Despite the fact that I still felt awful, still looked three months pregnant and was still hunched over in pain. I immediately went to see my acupuncturist and had a treatment. I didn't feel great from it, but knew that sometimes it takes a while to reap the benefits of the work. That night I had the "contractions" again, they started all the way down in my pelvis and shot up into my mouth. It almost felt like the shittiest heartburn you could even imagine. Times a million. Nevertheless, I did not sleep at all.
6am the next morning, I am on the phone with the on-call gyno again, and we are on our way. Again, it's nice when they expect you, because they take care of you right away. This time, the gyno on call was a beautiful Angel of Light, Dr. K, who came down from the ICU to meet me in the ER. Within two hours of being admitted into the ER, I was taken to ICU and was septic.
(Really, NO infection 24 hours earlier? Really?)
Let me pause for a moment and comment on my mood during all of this, I was awesome. I was pleasant and kind, and was just looking forward to the problems being fixed. I am a busy women, let's get this done. I pause to say this because I believe it was this positive attitude that got me through all of this. No time for bullshit, fix me.
The cool thing about being admitted into the ICU is that you then have a team of 7+ superheroes that are all there to work to make YOU feel better. A gynecologist, an internal medicine doctor, an infectious disease doctor, a surgeon, the head doctor, and more that I can't even remember. I was so preoccupied with the fact that I wished that I could draw, so that I could sketch out my team into some sort of Marvel characters cartoon, because that's how I saw them. I was also preoccupied with the fact that I wanted a baked potato. These distractions really help keep you grounded when you've just been told that you are septic.
That night I opted to have a central line put into my neck, so that medication could get into my bloodstream faster. Let me tell you, this was one of the worst procedures I have ever had done. It was midnight, they put a huge plastic sheet over my face and upper body (to keep me safe from germs), and let me tell you, suffocation is my biggest fear ever. It's up there with masks and clowns (think about it, it's all related somehow). The nurse on call had no personality, or even a clue to talk to me, keep my mind off the fact that I was having this procedure done and that I felt like I was suffocating to death. And it felt like it took forever. But I knew I was taking one for the team, that this would help me survive.
Fell asleep and very soon after that, flew out of bed (attached to all the machines) having the worst panic attack and vitals exploding. My heart rate reached 245 I think? Not one of my better moments during this whole thing.
The next morning, the Angel of Light comes to see me again. They are still stumped as to wtf is going on, where the fluid is coming from. So instead of having a nice relaxing day recovering from sepsis, they decide to do laparoscopic surgery. In her words: "we will take out the IUD, if there are cysts on your ovaries, they are coming out, if something is wrong with your gall bladder, it's coming out. Whatever is causing this, we will take it out, and we will remove any fluid we come across. This should all take about an hour."
Gosh, I sure hope I have organs left when this is all said and done.
Two and a half hours later, I open my eyes. The first thing I remember is being able to tell that the IUD was no longer inside me. Despite the fact that I felt totally run over by a truck, I felt like I had my body back, no pieces of metal that don't belong in my body. They took the IUD to be cultured, convinced that something had been growing on it causing this infection. Interestingly enough, there was nothing they could find. Nothing growing on it.
After that initial realization, I then saw that I had a drain attached to my body, lower right side of my abdomen. And two surgical marks, inside my belly button and one other that Dr. K and I decided would go right where my c-section scar was (brilliant decision on both our parts, if I may say so).
The next morning, Dr. K and Dr. P (who was the other surgeon involved, another awesome member of my superhero team) came to see me. Apparently, I was suffering from Spontaneous Streptococcal Peritonitis, which usually affects those with failing kidneys, failing livers, and oh yeah, healthy women. Dr. P then said "that was the nastiest thing I have ever seen, would you like to see pictures?"
Apparently, they removed three liters of fluid from my pelvis ("white pus"), and all my organs were in perfect shape. Oh, I KNOW my organs are in perfect shape. I take good care of them. And another thing: there is absolutely nothing about me that is Spontaneous. Nothing. So I call bullshit on this whole thing. I believe my IUD poisoned me. Had a major allergic reaction to it. I had members of my team that definitely leaned to my side of reasoning, while others needed to have textbook answers. But no one EVER would admit that the IUD could've done this. As soon as that thing was out of my body, I knew it had poisoned me.
I spent the next four days recovering, stabilizing my blood pressure and vitals in general. I have to say that the energy in my room was very Zen, grounded and very loving. I believed it to be the Divine Feminine energy. I received an email from a friend during this time and she said, for all the work [I] do with women and young girls, allow that feminine energy to now care for you. And that's exactly how it felt. It was quite amazing.
But then I remember one morning, waking up, feeling this darkness doom and gloom in my room. I looked up and saw the original gynecologist who had prematurely released me. She said, "well I didn't expect to see you here" and proceeded to make excuses for her abhorrent work. I refused to speak to her and made it clear that she was never ever to come near me again.
It was time to be released. I had gone into the hospital when it was warm and sunny, and now left (8 days later) in a freezing snowstorm: in flip flops, yoga pants, a drain in my side and a PICC line in my arm (which replaced the horrible central line in my neck).
It was time to recover, learn how to administer my own antibiotics and get my daughter back. What an emotional reunion it had been, as I had not seen her since I dropped her off at school nine days earlier. I felt so blessed that she was in good care at her dad's along with some amazing friends.
After being at home for two days, I started noticing that my right side was really sore. I blamed the fact that I had been laying in a hospital bed for eight days and probably lost some muscle. As the day went on, my drain leaked a good amount, and I just couldn't feel comfortable because of my back. A little after my daughter went to bed, I tried going to sleep as well, but my heart was pounding so loudly that I couldn't get it out of my head.
Relax, Allegra. You're a yogi, just breathe and calm down. It's just a panic attack.
But I couldn't, my heart continued to race, and there was nothing I could do to calm it down. I tried to find distractions, still thinking it was a panic attack. But nothing worked, and as time passed, I was having a harder and harder time breathing.
I called the on-call doctor. Guess who it was? Dr. Doom and Gloom. The one who prematurely released me, the one who said I was sans infection. I refused to talk to her, find anyone else, ANYONE. But she was it, so I had to clear that negative energy and trust that she would not fuck up again. She was very helpful and concerned. Told me to try to rest but to come in if it got worse. At the same time, I was texting with my dear friend who was also trying to keep me calm. I was scared and I felt incredibly alone.
At 5am, I made the call: it was time to go back to the ER. I called the doctor and told her I was coming, in whatever breath I had left in me. Texted my friend that I needed her to take me to the ER, and she brought her daughter to my house to stay with Satya. I could barely breathe at this point, and I did not have the positive, optimistic attitude that I had been holding on to up to this point. I left my house without even saying goodbye to my daughter. I couldn't muster the strength, and in all honesty, I was scared that I wasn't ever coming home again. To this day, even though I am healthy and recovered, I regret the fact that my daughter would wake up that next morning without me there, without knowing what happened. We are still working through that abandonment trauma.
Back to the ER I went, and again, I went straight into a room. I was done. Couldn't be friendly, could barely talk, could barely even move as they asked. Apparently, all that fluid that was building up in my pelvis and abdomen moved up into my right lung. I had a pleural effusion, which is basically like a thick orange rind-like substance building between my ribs and my lung. I had so much fluid building up in my lung that it had pushed my heart over to the left side of my body. This is why my heart was racing and pounding so loudly.
My heart had moved. What. The. Fuck.
So I immediately had a chest tube put into my right side and felt a good amount of relief. Up to the ICU I went again. I have to mention that there was probably a good 30-40 year age difference between me and the other ICU patients. All the nurses and doctors just couldn't believe any of it.
Sadly, the chest tube wasn't working as well as they had hoped, so they removed that one and replaced it with another one, in another spot. That seemed to work better.
The next day, one of my very favorite doctors in all of this, Dr. M, a pulmonologist, came to see me, completely bewildered by my chart and everything I had been through. Dr. M was a short yet mighty man, who wore cowboy boots and a huge belt buckle. A no nonsense kind of guy, which I loved. He told me that the fluid was so thick that the chest tube wasn't working well enough and if things didn't improve quickly, they would be opening my chest up to irrigate the cavity of the fluid. So down to radiology I went for a third chest tube. The difference this time was that they would be able to use an ultrasound to find exactly where this needed to go. Um, I could tell you exactly where it needed to go, thanks. So anyway, the radiologist was awesome and I was so used to getting chest tubes at this point that I talked the whole way through the procedure. And BAM! Pin the tail on the donkey. X marks the spot. Back to my room I went, and as soon as I reached my room, I experienced the worst pain I had ever EVER encountered (and I had a labor from hell). Dr M came immediately to see me, said to give it exactly 30 minutes and the pain would subside.
Longest 30 minutes of my life. But he was right, the fog cleared and I felt the best I had felt since this whole ordeal started. Attached to this chest tube was what I called my "suitcase of fluid". It was literally a briefcase looking compartment that collected and measured fluid. Within two hours I had released three liters of fluid. And that was just the start of it.
You know when you have a cold and you blow your nose all the time wondering where the hell all that snot and phlegm comes from? Apparently, that was my entire body.
The next day, Dr. M came back to see me, yet again to say that the chest tube wasn't able to release the fluid as quickly as they needed. Still on the fence about the surgery. But they decided to try another technique: twice a day for ninety minutes they would clamp my chest tube right at the point of insertion, give me a medication that would help break up the thick fluid, and mix me up like a cocktail to do so. Sounds like a party, right? So for 30 minutes I would lay on one side, and then 30 on the other side, and then 30 on my back. They would then unclamp the tube and massive amounts of fluid would leave my body. Quite astonishing actually. So now imagine doing this twice a day, for three days, when your right lung is close to collapsing, your left is filling with fluid and you are digging deeper than you ever thought possible for strength.
Hardest three days of my life.
We have finally reached Thanksgiving Day. Day 3 of this horrible cocktail shaking procedure. Yet again, Dr. M came in to say, there is still the chance we will have to do surgery tomorrow if we can't get more fluid out of the body. And then another pulmonologist came in to see me, and I have to say, he wasn't the character I had come to love in Dr. M. This one pretty much said: You need to do everything in your power to get this fluid moving in your body, walk around, do yoga, whatever it takes. Or tomorrow, we're spreading your ribs and ripping you open.
Let's go for a walk, shall we?
I became a maniac. Walked up and down the halls, did cat/cows, any kind of yoga that I was able to do with a clamped tube attached to a suitcase of fluid. I worked my ass off. In fact I don't think I have ever physically worked as hard as that day. There was no way in hell I was having surgery. I had just had one the week before, and this one was going to be huge. And scary. Not an option.
The next morning, both Dr. M and Dr. Not-so-Friendly came to see me. Both of them said, "I don't know what you did yesterday, but you do not need surgery." And I very proudly told both of them, "YOU'RE DAMN RIGHT I DON'T NEED SURGERY". I don't think I have ever been as proud of myself as I was in those moments. I pretty much performed a miracle on myself, with zero physical strength left in me. It was my sheer will that saved me.
Basically for the first time during this entire experience, I cried. I cried so hard out of relief. And I think all my pain meds kicked in all at once. I sorry-not-sorry call this day "AbstractLand". I don't remember the rest of this day at all. I mentally vacated. It was about time too. I had spent close to three weeks so incredibly present and knowing everything that was going on, learning so much along the way. And it was intense, all the time. So, I took a mental breather. All I remember is every once in a while coming into consciousness laughing my ass off because I was hanging out with the characters from Wizard of Oz and the characters from Inside Out when they go into AbstractLand. No joke, I was having a party of one and having a blast. My nurses and friends didn't quite see it the same way....
The final three days in the hospital were finally restful, getting rid of the drain, the chest tube and just observing. When Sunday November 27 came around, I could not believe that I finally was going home. And so help me God, it was for good.
The month of December was all about doctor appointments, self-administering a total of 7 weeks of antibiotics, and finding my strength again. Reuniting with Satya again, on a more profound level than before. This time I knew I was home for good.
The thing you don't learn when you leave the hospital after an experience like this is that there is no preparation for the emotional and psychological aftermath. Or that there is such a thing as Post-Sepsis Syndrome. It's a real thing and I am still suffering from it. Wrapping your brain around the fact that you, YOU needed all of that care, half a million dollars in medical bills. YOU. And that on more than one occasion, you were very, very close to death. That is all really hard information to wrap your brain around. In fact, I'm still trying to wrap my brain around it now. Writing it all out makes it feel like a very very bad nightmare, but then I see my scars, I can close my eyes and remember the darkness in my ICU rooms, and be right back there, in the thick of it all. The PTSD is still strong, but I am working through it. Physically I don't know if I will ever be as strong as I was prior to this, or if I will ever experience a fully inflated right lung again, but I now honor where I was a year ago, and I celebrate where I am today.
I'm not going to give an Academy Awards thank you speech to my friends and loved ones who cared and supported me through all of this, and continue to do so. You know who you are, and I look forward to spending quality time together at the end of this month for my Celebration of Life party.
My doctors and nurses at Lutheran Medical Center were amazing. I can probably count on less than one hand the care I received that wasn't great: one doctor, two poor excuses for nurses, and a service person who was so clueless that they left me in my wheelchair in a corner in the dark, hoping someone would come get me. Ahem. But when you're admitted for 17 days, you have a lot of doctors and a lot of nurses. Amazing human beings. I spent much of my time there in awe of their work and their service. Some of the biggest hearts I've ever encountered. I will never ever forget them.
When you experience something like this, you dig deep and find strength you never knew you had. I felt completely guided the entire time, by a Higher Power, and even during the darkest, scariest moments, I knew it wasn't my time to leave. I hadn't taught my Satya everything she needed to learn from me yet. And if that isn't a force to be reckoned with, I don't know what is.
Since sharing parts of my story, I have learned of so many women who have had horrible and scary experiences with their IUDs. Maybe not as extreme as my story, but enough for me to want to share and educate women as much as I can. I have read awful stories, and have seen the number of lawsuits against both Paragard and Mirena and it frightens me. I had had an in depth consultation with my doctor prior to my appointment, where he went over the possible side effects. Sepsis, "Spontaneous" Streptococcal Peritonitis, Pleural effusion, and near death were never mentioned. Was it the copper? Possible nickel allergy? I won't ever know, and I don't plan to press the issue. I am so grateful to be alive, as healthy as I am, and a lot wiser.