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Another Important Blog Post on Health, Listening to Women about Their Health, and More Surgery!

My Health Journey As A Woman…

Just under two years ago, I wrote a blog post about getting a Vertical Sleeve Gastrectomy because doctors not taking my period and other health complaints seriously for decades led me to becoming too obese for a hysterectomy. I was hopeful, based on the research I did (much linked in that blog post), that the VSG would be enough of a body reset to fix all the things doctors said it might.  Hopeful, but not convinced. I even said that hysterectomy wasn’t off the table if the VSG didn’t fix the hormone issues.

Sometimes it really fucking sucks to be right. It’s time to evict the bitch, yeet that uterus!

Leonardo Da Vinci’s depiction of a uterus on as part of a special showcase of his anatomical art at Buckingham Palace. It looks like it belongs on a metal album cover.

(For even more information about why I’m excited about this particular surgery, here’s some background and even more emotional thoughts on how having a uterus has made my life miserable, particularly in the past decade…)

For those of you who’ve managed to see me in the safe windows of a pandemic, you’ve seen that I have, in fact, lost a lot of weight. About 100 pounds, give or take.

Give or take being the key phrase.

You see, there’s this thing called “body homeostasis.” In short, the body has natural systems that work to keep it in a standard functioning state even when the world around changes and endangers the body. However, if your body ends up functioning in an unhealthy manner for years and years and years, it can potentially reprogram itself to believe that is the state it is supposed to be its best functionality, even if it’s not. This is one of the many reasons weight loss is so damned difficult: Fat cells hold onto certain hormones, like estrogen, so being fat actually changes how your body releases and uptakes hormones. And the longer you’re fat—and on a constant schedule of weight loss and gain, because what fat person isn’t always under pressure to lose weight?—the more the body starts to normalize its functionality for being fat.

And if you’ve had a hormone imbalance for most of your life too? Or—and, in my case it’s an and—you also have a neurodiverse brain with its own special biochemical cocktail needs?

Your body is pretty fucking certain that your survival depends on a fucked up biochemistry.

That’s why, the older I got, the less helpful any chemical birth control was in period regulation.

We were at the point that any birth control we tried would work fantastic for 6-8 months, and then slowly stop working. Periods would stretch back to eight days, ten days, two weeks, three weeks… And I was back to buying wholesale club-sized pads, pain meds, and whatever herbs and other drugs seemed to cooperate with Adderall for the brain fog, emotional roller coaster, hot-and-cold flashes, anxiety, depression, forgetfulness, fatigue, and so-bad-I’m-in-bed pain.

About a month or so after my VSG, I literally had THE WORST EVER of ALL of the abovementioned symptoms. Yes. ALL. OF. THEM. Oh, and with the tiny tummy, I also got my first-time-ever hypoglycemic episode because, apparently, I’m one of those people whose body doesn’t function in full ketosis. And post-bariatric surgery involves basically a keto diet.

And that’s not even getting into discovering a sensitivity to sugar substitutes and getting seriously sick from that.

It was fucking hell. I was on the phone, in screaming tears with my whole damned medical team. They couldn’t do anything… I had just had serious surgery. All we could do was wait it out. Then, by about the 3-4 month mark, everything started getting better! Periods went away; I was getting more energetic; I WAS NOT IN PAIN!!

There’s a thing about chronic pain people don’t realize unless they’ve had it and then managed to actually get rid of it for a while:  You absolutely forget what it’s like to function while not in pain. It’s almost scary. You don’t believe it’s real. You are stunned: “This is what life is like for other people? Other people live like this?! No wonder everyone else gets so much done!”

I mean, we’re still talking about it being 2020, so I was feeling physically awesome while living in Dumpster Fire World, so there’s that.

In any case, there was an absolutely glorious six months where I felt like what I guess a normal, healthy, fucking human being feels like. And despite the world only mildly abating from Massive Dumpster Fire status, it was, in fact, glorious.

And then the bleeding started again.

At first it was spotting for 3-4 days. I told myself, “Well, this is normal-person period stuff. I can totally live with this.” I also told myself, Every other time your birth control started to fail, it started like this. But, like all the other times, I wanted this to be the exception. I wanted this to finally be the thing that worked. I went through heavy-duty surgery, FFS! I supposedly reset my whole gut biome!

Just under a month later, it was just over 5 days of spotting. Not heavy, at least, but enough to be annoying.

Less than three weeks later, it was 7 days, not all spotting.

And so it went.

And then I was bleeding again for 2+ weeks. And worse, my weight was creeping up again.

I had my food and activity journal. I had my Fitbit activity / calorie-burning data all saved and on hand because the logical, OCD part of me had had a feeling this would happen.

I was vindicated; I was furiously crestfallen.

You can’t really gloat about being right all along when the physical pain and misery you’d thought you escaped comes back; you’re too busy remembering all your coping mechanisms to living while in pain and with lower functionality. You still have deadlines and people depending on you; you still have to live.

At this time I met with no argument against the hysterectomy. I even got surgery on my preferred date based on conventions and Scott’s work schedule, so I have the time to recover and Scott is available to take care of me.

After chatting with my doctor, we decided we’d keep one ovary in there as a buffer in case my body decides to seriously flip out after years of functioning on overproduced levels of estrogen.

This all happens in a week!

Intersection of My Health and Women’s Health…

I was all set to post this about two weeks ago. I had contacted most of my clients and / or planned projects with my surgery in mind.

And then there was that little leak from the Supreme Court, and I was thrown into one of those paralyzing emotional Cat 5 tornado of a caliber only people with neurodiverse brains can appreciate. (Not saying neurotypical folk can’t be thrown into a paralyzing emotional tornadoes—particularly uterus-owning folk in regard to this particular thing—but part of the brain chemistry of many neurodiverse conditions, particularly ADHD, is that our emotions are literally “turned up to 11,” beyond what neurotypical people feel.)

I would have been hit with this emotional storm regardless, but less than a month away from a surgery I have fought years to get—even living in one of the most freaking liberal of states when it comes to women’s reproductive rights—that…that was… A. Lot. 

To say the least.

In fact, I do have a lot to say…but I also have A. Lot. to do before my surgery. I also need to look at the emotional energy it takes to talk about this, the potential arguments and having to monitor comments…those are all important considerations when I have limited time and limited energy. I state this, too, because I have friends who feel I should say more.

My short response for this blog:

I respect a woman’s bodily autonomy; there should not be legislation that prevents her from making the best decision for her health and her whole family’s well-being. A woman should not have to fight for access to the best health choices for herself and her situation. Limiting women’s access to health care affects all women’s access to health care. There is SO MUCH INFORMATION showing how the more restrictions we put on women’s healthcare the worse women’s health is. There is a massive, massive, massive correlation to states with stricter laws for women’s reproductive health and higher death rates for women and lower overall health. The fewer restrictions, the better women’s and children’s health is.

Beyond that, I need to respect my own health and body. So please don’t make me moderate comments on this. Be kind to each other. When I’m in a better health situation, perhaps I can put in the emotional and mental work of the post I want to make, along with all the research I’ve collected.

So, with that… I am counting down for my hysterectomy with joy and more hope. I fought hard for this, and I shouldn’t have had to. But the time is finally here!

For those of you with other uterus-owning persons in your life, particularly if they are young, listen to them when they talk about their periods and issues. And help and support them so they don’t have to suffer what I went  through.

Love and health to all of you!

Where I’ve been, What I’ve Been Through, and More Surgery

So, yeah, it’s “been a minute” (to borrow a Southern phrase I learned in said “minute”) since my last blog post. Sorry. But this one is the whole explanation why!

Back in 2017, I shared this post about surgery I had to have because of a big ole fibroid making my life super, extra, mega miserable. That’ll give you a few more background details.

Where to start…

Continue Reading →

Surgery Prep

It’s been over a year since my last blog post that was part of #HoldOntoTheLight…

This one probably could be too, but I just want to get it out there because I’m going into surgery tomorrow and I’ve been procrastinating on writing it for a while.

The surgery is fairly minor, though I do get anesthesia.

The short, less-icky version:

I’ve got a good-sized fibroid in my uterus that’s also on my cervix that’s been making my life miserable for a while now. They’re going to remove it via hysteriscopic surgery (i.e. no incision, using my own openings). And then they’re going to put in a IUD that’s supposed to help out with the other misery-causing issues that led to the fibroid being there in the first place.

Most urgent information… I’m going to be mostly offline / resting for the next week. I expect the procedure to be fairly easy.

The long and icky version of this is part of an ongoing medical condition that I only had doctors take seriously in 2014, though it has likely been an issue since I started having periods.

Yes, we’re getting into periods. Turn back if you’re scared; here there be woman dragons.

(I say that dripping with sarcasm, because I think everyone really ought to be educated about how half our population’s bodies work… and because I think this “ew” factor and ignorance that comes up with women’s health is a part of why I suffered as I have for over 20 some odd years…)

It took me having to go to the ER and nearly getting admitted due to a kidney infection that developed due to a bladder infection due to a uterine track infection that I neglected symptoms to because I couldn’t differentiate them from the symptoms I was already suffering due to a 6-week long period.

Short version of THAT: About six months’ worth of tests from a specialist OB-GYN and a urinary gynecologist, and I learn I produce too much estrogen, likely have produced too much estrogen my whole adolescent and adult life, because of that likely couldn’t have kids if I wanted, oh and my uterus is actually tilted and twisted (also affecting the “kid breeding potential”) and THAT contributed to my life-long war with my bladder that has led me to more embarrassment and pain than I want to get into with this blog post.

Yeah. All that.

After a few failed procedures (posted on FB and maybe I’ll do a blog post on them later… it’s almost time for The Walking Dead)… my OB-GYN gave me an arm implant that was supposed to even out my hormones and potentially make my periods go a way for almost three blessed years!

Less than a year and a half after said implant… I’m bleeding again. I was bleeding and in pain at…

Every. Single. Convention. I attended in 2017. All of them. Every month.

And it was going from five days to six days, to seven days…

And the time between periods was getting less and less and less…

It wasn’t until I spent more than half of Necon in July in my hotel room, in bed, puking and bleeding and exhausted, that I demanded another appointment with the OB-GYN.

I then had to go home and record three more months of my cycles for something to be done. (Despite the fact I had very clearly recorded the prior six months in red marker on my calendar for her to see already.)

I cheated and called her in two and a half months because I was on my third bleeding cycle. It fucked with my DragonCon.

More tests, more visits, and A REASON!

I had a fibroid.  A big one. Oh, and it was also on top of my cervix.

If you didn’t follow the link above for what a fibroid is, here is another one to the Mayo Clinic. I include that one because it has a handy list of symptoms, which I’ll copy here:

  • Heavy menstrual bleeding
  • Menstrual periods lasting more than a week
  • Pelvic pressure or pain
  • Frequent urination
  • Difficulty emptying the bladder
  • Constipation
  • Backache or leg pains

I have Every. Single. One. Oh, and also anemia. I need to sleep all the time, and I have no energy. Everything, everything I do and have been doing takes two to three times the effort.

So, add in depression, feeling like a failure, and all the emotional baggage that goes with that.

Thing is, I get most of those symptoms with my messed-up estrogen and twisty-tilty uterus anyway…  This fibroid was just exacerbating a regular level of misery I live with each month. Hopefully, this IUD will help with the hormones.

But seeing as the arm implant failed after a little over a year, I’m not all that hopeful.  I’m just glad to get the fibroid that’s making things worse out…

What I want is a full hysterectomy. Kids aren’t in the planning, and there’s always adoption and fostering if we do change our minds.  I have no need for these parts.

But I got a hard “no” on that from the doc. That’s its own blog post.

I plan on returning to blogging. I’ll talk about that as things continue.

But, for now, I’m going into surgery.

And I have a medical affirmation for at least part of my suffering, for many of the failures I’ve felt over the past year, for not being as productive and being more “flaky,” for the exhaustion and the anger and uncontrolled emotions, for the pain…

Having a name for it, having a cause does matter. Having a plan and having power over it… that’s in progress.

 

For now, I will take well wishes, hope, prayers, and whatever anyone wants to send.