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.

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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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Ovaries, Menses, and Morphine

Warning, I’m about to get all up in my own lady part business. If you get queasy reading about ovaries or uteruses (uteri?) or blood or pain, you should probably move along today to something else.

Ah, I know, here is a video about a baby elephant playing tag with a dog. Try watching that instead.

For those of you who are still with me, hi, welcome to my lady parts.

Sunday night I had another ovarian cyst rupture. Luckily, I was already at Urgent Care when that happened. I started blacking out from pain; the nurse gave me a shot of morphine and then did an ultrasound to confirm what I already knew: ruptured cyst. Now, I’ve dealt with my fair share of pain over the years—ribs popping out of my spine a half-dozen at a time, multiple times per week; I’ve had ribs so far away from my rib cage that they were cutting off blood circulation in the arteries that run under my collar bone and down my arm. My pelvis was cranked almost 90 degrees from where it should be and my neck and spine at one point were collapsing into my chest cavity. I’ve taken an airbag to the face, had a concussion so severe my brain was actually bleeding into my cranial cavity and pooling under my eye sockets (hello, killer black eyes!). THAT ALL BEING SAID, rupturing cysts are the only thing so far that have sent me in to shock, that have made me throw up from pain and black out just to escape my own body.

This is probably my 7th or 8th ruptured cyst in the last 10 years and it just doesn’t ever get easier. Apparently, about 30 percent of women have cysts on their ovaries, for many women those cysts can be shrunk by taking birth control. Unfortunately, the 3 or 4 types of birth control I’ve tried give me terrible 6 week long periods, soaking through super-absorbent tampons in an hour and losing fist-sized blood clots, then a blissful 1-2 week break followed by another 6 week long period. Seeing my own blood in the toilet almost always gives me a little panic attack, I’m sure this is leftover from the sexual abuse I suffered as an early twenty-something (and resulting non-menstrual blood that filled the toilet), but I have to give myself a little pep talk before I can put in a tampon or stand up so I don’t start hyperventilating. I can’t function having to do that for six weeks at a time my whole life; it’s just not worth it. Once upon a time there were surgical options to have those cysts scraped out, it’s super invasive and very painful, and the problem is that within a few months or a few years the cysts grow back. Big Insurance isn’t really keen on paying for multiple, ineffective surgeries; and most women aren’t all that thrilled with the idea of multiple very invasive surgeries without any real chance of fixing the problem. I have toyed with the idea of an IUD, but apparently my lady parts are super tiny and my doctor is legit concerned that I’m not big enough to get the damn thing in. Yes, IUDs are small, thumb sized, really, but the duck-bill clamp-thingies they have to use to open you up enough to embed it in your uterine wall are…not so small. They are terrifying, actually; for me the duck-bill clamps are far worse than a pap smear or anything else that happens at the OB/GYN’s office. Dah, it makes me hurt just thinking about them.

So. Where does this leave me? I have periods on a somewhat normal schedule, no birth control, bad cramps most of the time, and every 6-18 months I have a cyst rupture, get a shot of morphine take a day off work, and get back to my life. Is it ideal? No, it’s not. But it’s so much better than bleeding for 75% of my life.

Also, can we talk about morphine for a minute? I’ve never tried hard drugs, not even pot, and I’ve never really wanted to. But, oooohmygoodness, if that stuff makes you feel HALF the kind of relaxed happy that morphine does I can absolutely see how people can get addicted. Frankly, I am pretty sure I would get addicted after trying it once. Morphine makes all the hurt go away, and I can feel it coursing through my vein, warming up my arm and shoulder, and when it hits my heart there is this immediate flood of calm and happy that shoots through my whole body. Lawsy, it’s a good thing that I only receive morphine a) under extreme pain and b) administered by a medical professional. If I could get that stuff in a sippy cup I’d be sucking that thing constantly. Sooooo good!

(Yes, part of my love of morphine probably stems from the indescribable pain it immediately takes away. But the other part is the perfectly calm, happy feeling that is so very rare for me to experience. Also, probably exacerbated by the horrible, nauseating, will-I-live-through-this-feeling terror that happens immediately before a morphine shot. See: ruptured cyst.)

On Monday morning, while I was carefully tucked in to bed with a new book, I posted on Facebook about my experience, and the more I think about it the more I would love to see some kind of study. I wonder how men would react to the lovely side effects of having a period. What would happen if all of a sudden their penis started shooting blood for 5-7 days, combined with a penile Charlie horse (cramps)? And what if every doctor and website calmly assured them that this was normal, and even that it was a “beautiful and important part of manhood and fatherhood.” (Ha! Snort.) And what if a few weeks later it happened again, and then again, and again? For thirty-plus years. How would they—the general male populous—handle it? And what if every so often a balloon of blood and goo exploded inside their testicles? No reason, no warning, no cure, just BAM!–paintball to the testes. Do you think Research and Development labs would try a little harder to figure out a better solution? Do you think insurance companies would be more willing to invest in a procedure that eliminated this kind of thing? Do you think pharmacists would be able to distribute morphine to sufferers? (Ok, that last one might be a bit of a stretch…but still, would they?) It is a pretty solid assumption that the heads of medical research labs, insurance agencies, and Big Pharma are mostly men, and if they had this kind of debilitating horror to deal with every month you can bet your ass they would try and find some way to reduce their pain and suffering.

Reason #20,304 why more women should pursue STEM-related fields, why they should seek advanced degrees and pioneer research projects. Go to college, ladies, and stay there until you have that degree!

And in the meantime, I’ll be here with my sippy cup.

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