Talking about my uterus, again

First things first, if you do NOT want to read about my uterus or my blood, you should definitely skip this post. You heard me, move along. There is plenty of other crap on the internet you can read without having to hear all about my lady parts. Off you go.


Alright. So it is now fair to assume that anyone still here is well aware of any possible queasiness as I discuss my bits and I am not to be held responsible for thigh clenching, wincing, and general sympathy pains. Ok, good talk. Moving on.

A year ago I wrote about the horrific and fairly regular lady parts pain I have experienced for YEARS as a result of at-the-time not yet diagnosed poly cystic ovarian syndrome (PCOS) and endometriosis (endo). Basically, I’d get these horrible cramps that would practically knock me out, my body regularly going into shock to deal with it. And then ON TOP OF THAT a few times a year I’d have a cyst on my ovary rupture, the only thing that helped relieve that particular flavor of hell is morphine, which they (wisely) keep locked up in the Emergency Room/Instacare. So, there I would go, sometimes of my own accord, others via friendly chauffeur (a friend, not an Uber driver), and once via ambulance because I honest-to-God thought I was going to die, alone, on the bathroom floor.

I have really great insurance and access to some fantastic doctors, that being said, for several years I had a new OB/GYN every six months through zero fault or initiative of my own. Same clinic, new doc. I finally threw a TREMENDOUS fit about it because the level of care I was receiving/not receiving was plummeting while my health concerns escalated. And, low and behold, I have had Dr. Mark ever since. He is smart and kind and slightly effeminate in a way that makes me feel comfortable around him, despite his being all up in my biznass. He is patient and takes his time to explain everything, he listens to me and fields all my questions. I trust him.

He’s the first one who diagnosed my PCOS and also the one who is pretty damn sure I also have endometriosis as well. I don’t have an official diagnosis on that because, in general, it requires going in and scraping out the affected parts for testing.

A quick summary: PCOS is when you have cysts growing on your ovaries or fallopian tubes, sometimes they just sit there doing nothing, sometimes they interfere with trying to get pregnant, and sometimes–my case–they rupture for NO GOOD REASON except that ovarian cysts are assholes.

Endometriosis is when you have the tissue that is supposed to only line your uterus growing outside your uterus. But it acts the same way in-your-uterus tissue acts. So, it thickens, preparing for a baby, and then tries to slough itself off…only, there’s no place for it to go (like, down your vagina and absorbed by a tampon/pad/whatever and then to the Great Beyond). So, it boils down to me having internal abdominal bleeding every month, and my body trying it’s hardest to absorb that tissue and blood. The best part? Endo can continue to spread onto the other organs it touches, like a fucking cancer, and everywhere endo touches will then most likely generate OTHER endo cells, the kind that cause internal abdominal bleeding every. single. month. There is no real cure. Doctors can go in and laproscopically scrape out all the offending tissue, whcih will slow the growth, but for most women it will eventually grow back. You can have a hysterectomy to eliminate the feeding ground,  but that is a pretty extreme step that I’m not quite ready for.

Ok, so Dr. Mark and I decided to try an IUD to see if that would help treat some of the most painful symptoms of both PCOS and endo. Now, I was pretty nervous about an IUD. I had tried a bunch of other kinds of birth control to reduce the cysts and the endo pain, and they all had pretty horrible side effects (the most traumatizing being 6 and 8-week long periods where I was soaking through two jumbo tampons an hour, every hour). I’m pretty sure I have some kind of PSTD from those months. My concern with an IUD was that it would generate the same kind of never-ending period, but that instead of just pulling off the patch, or removing the ring, or stopping the pills, I’d have to go to the hospital and have a procedure. It seemed a lot riskier to me.

But, Dr. Mark assured me that he could get me an appointment to have a “malfunctioning” IUD removed within 48 hours, so we decided to go for it. Prior to getting it put in, I had to have a few tests, you know, standard procedure, blah blah blah.

What was supposed to be something close to “we’ll just take a look and maybe need to take a sample” (for the uninitiated: that’s what a doc takes a little scrape of tissue from the inside of your vagina) ended up being a big, ole bloody mess. Instead of the “look-see” he ended up taking SEVEN significant samples from the inside of my vag. Seven! And the sample sites wouldn’t stop bleeding. He eventually sent the nurse running for some silver nitrate, which chemically cauterizes a wound, and it took multiple applications for me to stop bleeding. Ya’ll, there was blood everywhere. On my legs, on my doctor’s coat, I soaked through all the pads they brought AND the others in the room AND the ones he sent a frazzled nurse scurrying off to retrieve. There was blood on the floor and probably on their shoes. It was….it was a fucking war zone.

I was a sobbing mess, Blue Eyes nearly lost it, and Dr. Mark felt truly horrible about the entire ordeal, but explained that what he saw did not look normal and he had to make sure, which, frankly, I agree with. A few days later my test results came back as “not cancer, which is good, but these aren’t normal cells either, so we definitely need to keep a close watch on them.” Um, yay? At any rate, that sort-of All Clear meant I could schedule a day to get the IUD.

Dr. Mark, bless his heart, wanted to make sure I was well drugged for this next procedure. I am unnaturally small in my lady bits, especially when you think that I’m not petite in any other way. I often require the pediatric duck-bill clamp thing during a pelvic exam. To insert an IUD I’d have to be jacked open farther than I’d ever been before, and for quite a bit longer so he could get the thing placed correctly. We were both nervous about it, rightfully so. I took Pitocin (drug often used to promote labor) for a couple of hours prior to my appointment, in order to soften the insides of my lady bits and allow that damn clamp thing to do it’s gruesome job. I also took a doctor-recommended double dose of Valium to help control my anxiety and reduce muscle tension. No, I did not drive myself to the hospital, I was all sorts of loopy and still had a few more pills for the actual procedure. I took Percoset when I arrived and then it was Go Time. Even through my drug-induced haze I was super nervous, the last time I’d been in that room had been HELL and I was having flashbacks of ALL THE BLOODY THINGS.

Ya’ll, modern pharmaceuticals are freaking amaze-balls. I took more Pitocin and Valium during the procedure, which lasted about 20 minutes. It hurt, don’t get me wrong. I could still feel pain and all sorts of hurtiness. There were actual tears and I probably squeezed the hand off my poor Dad* but this procedure did not cause nearly the trauma the one a month before had, IUD was placed, clamps removed, and I got to lay there for as long as I wanted before shuffling out of the hospital and back home to bed.

*My Dad drove me to the hospital and sat with me while the doc did his thing. Blue Eyes had an out-of-state work thing he couldn’t change, I’m not on speaking terms with my Mom, and I figured my Dad would be able to keep it together even if I totally lost it, and he’s the best candidate for helping me get BACK up the stairs into my apartment. Weird? Maybe. But I was really glad he was there with me, despite the very strange looks we got from nurses and waiting room people. He’s 6’6″ with a full head of impressive white hair. Without business attire/makeup/demeanor I am usually mistaken for someone in my early 20’s…I’m sure people assumed he was the father of my unborn child and not, you know, my actual father. Whatever, it certainly isn’t the first time that assumption has been made, and probably won’t be the last. People are the worst.

For three months after my IUD I had horrible cramping almost every day and a lot of bleeding…I sent a report to Dr. Mark every two weeks. It’s not unheard of for someone to have those symptoms for the first three months, but it’s kind of unusual. After about 8 weeks Dr. Mark asked me to come in to just make sure the IUD hadn’t come loose and was poking around in my uterus, willy nilly. Nope, it was there, right where it was supposed to be. Dr. Mark offered to take it out if it was too uncomfortable, but I really really wanted this to be the last thing I’d have to try for a couple of years, so I opted to stick it out for at least three months, he refilled my pain pill prescription and sent me on my way.

At exactly three and a half months the pain suddenly stopped. Completely. Gone.  No more bleeding, no more cramping, just…nothing. I had finally triumphed over my damn uterus. While trying other birth control options I had these horrible six and eight-week long periods where I was using two-at-a-time jumbo tampons and changing them out every hour. My regular periods pre-IUD were five or six days of jumbo tampons changed out every two hours. For both of those I would routinely lose pretty large blood clots (like, several inches long and thicker than two of my fingers), periods have been traumatizing for me for as long as I can remember.

Enter: IUD. Currently, my periods require one of those ridiculously tiny pale yellow tampons that I can wear all day or all night without any messes. I honestly feel like I’m using doll-sized tampons. “This is the size of my PINKY finger! Are you sure it has enough oomph to do the job!?” Time and time again, it does. Amazing. Fucking amazing. Nine months after getting an IUD I still have some cramping every so often but my periods are almost non-existent. Now, if I could only find a similar magical device for my ribs and back, I might start to feel like a real person!!

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A number of years ago I was in a pretty ugly car accident. It was almost midnight, I was on my way home, and some criminal was leading a high speed chase of at least 30 police vehicles from three different departments (two separate cities and the highway patrol). He ran a red light in a residential area going about 60 miles per hour and slammed into my car, T-bone style. I spun through the intersection, he kept going, cops in pursuit. I found out later that he had stopped a few blocks down the street and tried to escape on foot, only to be caught by an enormous German Shepherd, the crook was taken to the hospital to treat his dog bites, and then to jail, where he languished for weeks. The dog was given a police treat and loaded back into the K9 truck to catch the next criminal. The news reports said the driver was evading police, who were only trying to pull him over for a headlight violation. Uh, that’s not true. The only thing I really remember pre-impact was two headlights coming right at me. But, whatever, I guess it’s good that a) he was caught and b) he miraculously had insurance, not that I knew that for another 6 weeks (because, who calls their insurance agent from  jail), but whatever.

Anyway, as you can imagine, there was quite a bit of damage done to my car (totaled! RIP Daisy, the adorable yellow VW bug!), and to myself. I had pretty severe whiplash, bulging discs in my neck, I felt like my spine was compressing into my chest cavity, my pelvis—which is supposed to be a nice, even, triangle shape—got twisted almost off the base of my spine (yes, really), and my ribs were so far out of place they were literally cutting off circulation down my left arm, which was slowly going numb while I waited for an appointment with a spine specialist.

The day of that accident I was in the best physical shape of my life, I had run 12 miles without stopping, my last long run prior to a half marathon I was signed up for a few weeks later. After the accident, I could hardly walk, and anything more than a block left me in a sobbing heap. I couldn’t sit, sleep, or stand without incredible pain. I spent months packed in ice and going to two (or three) different doctor’s appointments a day, I was in and out of neck traction, trying to prevent my neck from corkscrewing itself into my chest. I lost my job, learned what a jerk my boyfriend was, and–for the first time–about my Dad’s incredible bedside manner.

Fast forward 8 years. I can run again, but haven’t quite made it back to that 12 mile mark. My neck bothers me fairly regularly, but it’s usually something a trip to the physical therapist or chiropractor can fix. I sleep with an orthopedic pillow and often with a wedge under my knees to keep my spine in alignment. My pelvis is…well, it’s a process. Make a “gun” shape with your thumb and pointer finger on both hands, now put your thumbs together and your pointers together, the latter pointing to the floor, palms towards you. See that nice, even triangle? That’s what your pelvis is supposed to look like. Now, take your left hand and rotate it 90 degrees, palm parallel to the floor. That’s what happened to my pelvis. Your pelvis is a joint—granted, one that isn’t supposed to move all that often—in women it is supposed to unhinge a bit for birthing babies. So, I didn’t shatter my pelvis, I just hyper-extended it in a major way. And sometimes, despite YEARS of physical therapy, it slips out of place and needs to be popped back into place. Yes, it’s as painful as it sounds.

That experience aside, post-accident my biggest problems come from my ribs. Ribs are also joints, but again, not ones that are supposed to move very much, just enough to allow you to take a deep breath without anything breaking. During my collision-induced spin I managed to yank my emergency break hard enough to stop myself before I slammed into any other vehicles. But, the combination of the spinning car, spinning body, seat-belt restraint, and sudden, violent stop popped my ribs out (8 of them) and tore and stretched the muscles in my back in unnatural ways. My muscles were no longer strong enough or tight enough to hold my ribs in place, and again, despite years of therapy, my ribs do not stay put. I have anywhere from 3-6 ribs put back in place every time I visit the physical therapist. The ones that are particularly horrible are the ones that are underneath my shoulder blades, they pop out towards my shoulder (not in towards my lungs), so every time I move my arms there is what feels like bone grating against bone. Washing my hair is out of the question, simple tasks like doing the dishes or vacuuming bring me to tears, breathing hurts. I can usually find one position, carefully padded and supported by pillows, that will not hurt, and it is not unheard of for me to spend two full days laying there, not even picking up the remote to advance Netflix to the next episode, I just wait for it to advance itself.

Last Thursday my ribs and back were so out of whack I could not brush my teeth, or comb my hair, or sit up by myself. It was excruciating, perhaps the worst episode I’ve ever experienced, and it pisses me off that the reason they popped out was because I rolled over and slept on my side for a few hours one night. That’s it. Seriously. And, my ribs popped out like comically too-tight shirt buttons after Thanksgiving; my pain was at an 8 of a 10 point scale. And, of course, my physical therapist is 700 miles away at the University of Utah. Of course.  I have a couple of foam rollers that I’ve learned how to use to help nudge my ribs back in place. I tried, I really did. But I couldn’t even get myself in position on the roller without sobbing. I was a complete wreck. Luckily, thanks to a recommendation by Kayla, I got into see a chiropractor who managed to force a few of the worst ribs back to where they were supposed to go. I still have a few out, but I can function like a normal human (showering, brushing my own teeth, etc). I have a follow up appointment tomorrow where I hope he can get these last ones back in place.

You want to know the suckiest part about chronic pain? The chronic part. At least for me, there is no real permanent solution. Short of slicing open my back and fusing every single rib to my spine, there is no way to keep them in place (and, uh, that sounds horrifying in and of itself). This is something I will deal with for the rest of my life. A few weeks of general discomfort followed by a couple of days of horrifying, excruciating pain. Rinse and repeat.

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