The Diagnosis

It’s 10:30 at night, my fiancé is out with some friends, and I am sitting here on the couch vaguely nauseated. I spend a lot of time nauseated these days. Because my doctor is requiring me to take birth control pills. Because he doesn’t want me to ovulate for at least two years. Because he had to cut open my ovary and take out a 5.7 centimeter cyst that was full of blood. Because my uterus is attached to my pelvic wall. Because I have severe stage four endometriosis.

I was diagnosed about two months ago, but it’s still weird to say. I have stage four endometriosis. The staging makes it sound scarier than it is – though honestly, it does scares me – but it’s not cancerous and it’s not life threatening, so it doesn’t begin to compare to what most people go through when they’re told they’re stage four. Endometriosis is a chronic disease in which the tissue from inside the uterus goes rogue and grows wherever it wants. Usually, it stays in the abdominal cavity, planting itself on the outside of other organs, bleeding like it would for a menstrual cycle, which creates inflammation, scar tissue, pain, and general chaos. Mine, thankfully, contained itself to the reproductive organs – the cyst in my ovary and the scar tissue that has adhered my uterus to my pelvic wall, which my doctor says is impossible to remove and I’d bleed out if he tried. He’s frank like that. I kind of like it. After my surgery, he said, “You have the worst case of endometriosis I’ve ever seen,” which at first, I was taken back, he could have at least tried to sugarcoat it a little, but as my fiancé pointed out, at least we know he’s not withholding anything. But I’m getting ahead of myself. Want to hear the story? You probably do because you’ve read this far, and I want to tell it because the world of endo is a little lonely and I need something to distract me from the nausea.

We’ll start at the very beginning. In December of 2014, I decided to get an IUD because the birth control pill I was on was making me crazy, but my doctor at the time couldn’t get it in. She tried repeatedly, which was super painful, and eventually concluded that I was too tense. She was nice about it, but after numerous attempts, deep breathing, and the old “imagine you’re on a beach” (because that’s so easy to do while someone is shoving a hunk of plastic up your cervix), she gave up. I felt like I had failed. I have some anxiety issues anyway, so being told that I couldn’t have an IUD because I couldn’t relax didn’t do much for my self-esteem. Instead, I went on a different pill which made me bloated, fat, and miserable. I eventually took myself off of it and never went back to her office again.

Fast forward to the spring of 2016. I had since moved 150 miles away and had a new doctor. I decided to ask at my annual exam if she would try to put in an IUD. When I told her the story of my first attempt, she made two things very clear 1) She would never prescribe the abortion pill for an IUD placement right out of the gate, which my first doctor did and which made me feel incredibly sick, and 2) There was no way my nervousness could close my cervix. She ordered a Skyla and told me to call the office when my next period started because that’s when IUDs are easiest to put in. Unfortunately (or maybe fortunately considering how the story unfolded), she wasn’t there the day I got my period, so I was given an appointment with a midwife instead. The midwife, who had read my file, said she’d try but that she had one of the doctors on stand-by who’s “great at IUDs,” as she didn’t want to further traumatize me. After two painful jabs, the midwife went to fetch the doctor, who unbeknownst to me, is male. I’d never had a male gyno, and usually I’d have been a bit uncomfortable with the situation, but I was already in pain and so badly wanted the whole thing over with that I wouldn’t have cared if Rob Lowe came in to do it. The doctor, who I’ll call Dr. X, made two attempts and seemed baffled as to why it wouldn’t go in. He stopped and felt my abdomen as I told him that the pain was too much and I wanted to stop. “Your uterus is tipped,” he said, “Has anyone ever told you that?” (They hadn’t.) “Give me one more try and I’m sure I can do it now that I know how it’s tilted.” Miraculously, and painlessly(!), he was done seconds after that. And then he dropped the bomb: “I want you to get an ultrasound because even though it’s tipped, that was too hard. I think you might have a wall in the middle of your uterus, or maybe you have two. We’ll have to see what the ultrasound says.”  I told you he was frank. Needless to say, I was pretty floored, while at the same time just so relieved to have an IUD, be off the pill, and know for sure that it wasn’t my anxiety that failed me the first time.

The ultrasound – which no one warned me would be transvaginal! – showed I had one wall-less uterus. It also showed a 5.4 centimeter ovarian cyst that was full of blood. Awesome. Dr. X told me it could be a “normal” cyst that grew too large and a blood vessel burst into, which would go away on its own, or it was an endometrioma, caused be endometriosis, which would not go away and would require surgery. There was nothing to do but wait and see. So for the next month, I was not to have intercourse, play sports, run, dance, or do anything that would jostle my abdomen and cause the cyst to burst. “If it bursts,” he told me, “call my office immediately, even after hours, and get to the emergency room.” “How will I know if it bursts?” I asked naively. “You’ll be in excruciating pain,” he replied. Double awesome. I spent the next month on the couch whenever possible, hoping and wishing that it wouldn’t burst and would go away.

The follow-up ultrasound showed that it was still there, of course, which I already knew because I could feel it. I had started having to sleep on my other side to avoid the dull ache.  Now at 5.7 centimeters, he was sure that it was an endometrioma, but because it was right on the borderline size of operating or waiting another month, he left the choice up to me…though he made it clear that he thought he was going to operate eventually no matter what I chose. Not wanting it to burst, or twist and kill my ovary (another happy possibility), and trusting his judgment, I decided to have the surgery.

And then I cried for weeks, sure I was going die from the anesthesia or wake up in the middle of the operation, or have some terrible complication…I was so scared of the surgery, I didn’t even consider the fact that he thought I had a chronic disease. I’ll write another post on the day of the surgery itself, but suffice it to say, there were no complications, he saved the ovary, and I have endometriosis and scar tissue all over the outside of my uterus. He lasered off what he could, put in a new IUD (because he had to remove the other one to “move the uterus out of the way while I operate on the ovary”), and stitched me back up.

At the follow-up appointment a week and a half later, he said I needed to be on birth control pills for at least two years because the IUD wouldn’t stop me from ovulating (though it would help with other aspects of endo) and ovulating = menstruating = scar tissue.

So here I am. Nearly two years after I decided I wanted to get off birth control pills because I couldn’t stand the side effects, swallowing my daily Seasonique while my Skyla silently works its magic.

And that, as they say, is that.