Uterus Free!

The hysterectomy was my fourth major surgery. What makes this one weird is that I don’t really feel the effects of it just yet. My first surgery was a microdiscectomy (removing herniated disc material) at the L4-5 (lumbar spine). I went into the ER because I had so much pain I cried every time I took a step and I couldn’t walk upright. As soon as I woke up from the surgery the pain was gone.

The second surgery was the spinal fusion. That one sucked because they did some nerve damage, but the sensation in my left leg was back to normal. (I went to see the surgeon because of the declining sensation in my left leg. He ruined the sensation in my right.)

My third surgery was the tendon transfer to correct the foot drop from the second surgery. I was in a cast but knew that I’d be able to move my foot up and down finally again. They had me try when they changed out my soft cast for a hard one. It was so cool.

But this time? This time they took out an organ that gave me problems. I mean, I’m not bleeding now, but I’d gotten a break just before the surgery and wasn’t bleeding then. I think it’s going to take me a couple months with no bleeding to really feel like something was done. I mean. I have the pain from the incision and the memory of the doctor pulling out the drain they put in. That was the single most painful experience of my life. I cried while they did it and I cried after. It was horrible.

I haven’t worn light-colored pants since 2002 since I could never be sure what my uterus was going to do. I don’t think I’ll stock up my closet with khaki pants anytime soon, but it’s nice knowing that I could if I wanted to.

Walking on Sunshine

The change in my mood has been remarkable since I found out that I would be moving forward with the hysterectomy. For people who are chronically ill, the difference between getting good treatment and not is HUGE.

Being chronically in pain or ill is depressing enough. When you compound it with feeling frustrated that your medical providers aren’t listening or don’t seem to be working toward a solution to the problem it becomes almost unbearable. At that point it’s like there’s no end in sight. The thought of living that way FOREVER is pretty heartbreaking.

I saw the ENT this week as well. He reviewed my CT scan with me and sure enough, my septum is deviated. He said that with surgery I will be able to breath better and suffer fewer sinus infections. Since I’m trying to do a half-marathon (that idea seems crazier and crazier to me now as I cut into my training me), I need to be able to BREATHE while I walk quickly/jog. So, we’re moving forward. My tentative surgery date is November 5. That’s probably too close to the hysterectomy, so we’ll likely be pushing it out a week or so.

I am so thrilled to be moving forward on these two things. Finally not having to worry about endless bleeding and heavy bleeding is such a weight off my shoulders. It’s seriously felt like there was an elephant trying to balance on my head or shoulders. It’ll take a bit after the septoplasty, but to be able to breathe well at night should reduce some of my fatigue during the day and give me the energy I’ll need to train and finish the half.

The other thing I’m excited about is that my shrink gave me a prescription for ADHD medication. I tested “average” on the cognitive skills assessment, which would normally mean no drugs for me. However, given my symptoms she thought I could try it for a month and see if it helps. I won’t be starting until after the hysterectomy though. It’s probably a good time to start since I won’t be doing too too much physically and will have be largely focusing on mental tasks.

These last couple months have been great in terms of moving forward in my health. I hope this trend continues into the foreseeable future! I’m not sure what else I can control at this point, but who knows.

A weird thought

A few days ago my friends and I started joking about turning my body parts into characters in a novel. I was building out a whole storyline based on my medical history, not just about the problems with my uterus.

But, the more I thought about my uterus as a character (played by Julia Roberts), the weirder it got. I have this image in my head of Uterus standing outside of a house, sad and lonely, having just been kicked out by everyone else because she’s been so disruptive (screaming and throwing blood everywhere).

I have always been the person who felt bad for stuffed animals left over at the end of a season, and I tended to buy them myself. When I see someone who’s been excluded, I feel bad. So then I got to feeling bad about kicking Uterus out.

I mean, it is weird, the idea of taking a part of your body and essentially throwing it away. However, if my arm were causing me the kind of problems my uterus does, that shit would be off my body so fast. My cycle (or lack thereof) wreaks havoc in my life. On top of all my other conditions, I just cannot deal with it. It is a physical and mental strain I just don’t want to deal with anymore.

This isn’t about me not physically having children. The idea of being pregnant has always freaked me out. It seems like a parasite just taking your nutrients and making you feel like shit. In my opinion, there is nothing LESS NATURAL than dealing with that for 9 months and then trying to shove something the size of a small watermelon out of something the size of a lemon. I hear the hormones make it so you don’t remember any of that mess, which is how mothers are able to love their children.

Still.

I also know what happens next in the scene. The people in the house feel bad about kicking Uterus out, so they let her back in. You know what she does next? She continues to go apeshit, shrieking and throwing blood everywhere. HOW ABOUT NO?

I’ve played this game with my uterus before. Thinking everything is getting better only to learn that no, everything is the fucking same. While that sounds like a party, I think I’ll pass. I’m over having Carrie as my uterus.

So, goodbye and good riddance.

Licensed Professionals, BE SMART

The rant to follow probably applies to a broader group of people than licensed professionals (doctors/nurses, lawyers, CPAs, etc.), but for right now, I’m going to contain it to these people. Why? Because I have a lot of experience with some and I am one.

  1. Arrogance isn’t smart. It’s obnoxious. No one likes to associate with arrogant people (unless they’re pretty fucking arrogant themselves). Perhaps check in with some people, not just your friends, about how you come across.
  2. Unless asked, keep your opinion to yourself. First of all, spouting off what you know about something just makes you look like a douche. If no one asked you, why are you offering? To show off what you know? No one likes a know-it-all. Second, you could get yourself in trouble with your licensing agency.
  3. Be wary on social media. Seriously. Social media seems like a great place to share. You can reach potentially hundreds of thousands of people. That’s not always a good thing. Even if you keep your profile locked down, it’s not hard to copy and paste or take a screenshot, and suddenly what you thought was a semi-private conversation has now gone viral.

Where did this come from, you might ask? I posted about how excited I was to have found a gynecologist who will do the hysterectomy for me! I am SO STOKED about this. My days of suffering will hopefully come to an end soon!

Well, someone I went to high school with is now a gynecologist herself. She jumped into the thread to ask why I wanted a hysterectomy. Then proceeded to tell me how I should be pursuing a more conservative course of treatment, that she surprised that I even found a doctor to do it, and talked down to me.

Despite my consistent posts about everything that’s wrong with me, she had no idea about any of my medical history. She has never examined me. I haven’t even seen her since perhaps 1999.

Why was she offering an opinion then? Your guess is as good as mine.

To make sure I wasn’t being too harsh, I asked a dentist friend to look at it. He immediately recognized how unprofessional (and stupid) it was of her to make the statements she made. Someone else messaged me to ask if it was likely that she was getting kickbacks for the medical product she recommended.

Worse than that, I had a discussion with a couple friends who told me that people they knew used the product, and more than a handful had serious issues with it. The product in question is an intrauterine device designed to prevent pregnancy and manage heavy periods. This “friend” undersold the risks that come with using it – perforation of the uterus, the IUD getting lost (LOST IN THE UTE!) and requiring surgery to get it out, and deep depression.  I and a friend both know someone who’s gotten pregnant using it (fuck your 0.1% of pregnancy).

When I spoke with the doctors I knew an IUD wasn’t for, but now I am MORE THAN SURE. I already have depression, I do not need to chance making it worse.

If I had taken this “friend’s” recommendation and used the IUD and something had gone wrong, would she be liable? Possibly. As a lawyer, I would caution all my friends who are licensed professionals against offering advice the way this doctor did. No sense in testing your malpractice insurance.

So yeah, be smart, friends. Be smart.

I hate doctors: Part 76,589

Y’all know about the troubles with my uterus, so I’m not going to go into them again, except to add that this summer I had a 90-day stretch of bleeding WHILE ON PROVERA. Yes, you read that correctly – NINETY DAYS.

And for funsies, 10 of them were of the “how am I still alive to bleed anymore” variety. So yeah, that was fun. I was good and kept going to the gym, but not without nearly destroying a ton of my workout pants.

Anyway, I’m desperate to get rid of my uterus. It’s been the bane of my existence since 2002. I “became a woman” (God do I HATE that expression) in 1995. That means that for 7 years things were fine, and for the last 15 they have been absolute shit. Just complete and utter shit (not unlike Trumplestiltskin).

I figured, what with 90 days of bleeding, the doctor would agree that shit is really fucked up and it’s time to just get rid of the damn thing. At a minimum I expected that we’d at least follow up and make sure that the endometrial hyperplasia is gone (that was my diagnosis after the D&C).

Well, there’s a new head consultant in town and he doesn’t think the endometrial hyperplasia is a big deal. Uh, what? That seems like something we should follow up on since it causes an increased risk for cancer (not a huge risk, 1%, but I’d still like to just make sure).

Not only will we not follow up on that, he just wanted me on more drugs to deal with the heavy bleeding. Hormones haven’t really worked for me in the past (see above re: 90 days of bleeding while on progestin), so I’m not sure why he thinks that would fix things.

We went round and round about the Mini Pill or an IUD, neither of which I want. So then we chatted about a hysterectomy. We chatted at length. “You don’t want kids?” “No, I don’t.” “What if you change your mind?” “I won’t.” “Well, hypothetically, people can change their minds.” “Yes, I agree with you. But I’m me.”

I explained all the reasons I don’t want my uterus: My body can’t sustain a pregnancy, I’m like quadruple high-risk (diabetes, thyroid issue, lupus, age), I have mental health conditions that are heritable and I have NEGATIVE interest in passing them on, even if the chance is slim.

He went on to tell me that it could be a complicated surgery. Yes, thanks, I get that. I’ve had a SPINAL FUSION.

My favorite part was this exchange:

Doctor: I cannot make you take treatment you do not want.
Me: That’s true.
Doctor: Similarly, you cannot make me do a treatment I do not want to do.
Me: That’s also true.

So we hit an impasse. I didn’t want what he offered and he didn’t do what I think is best for my body.

I got so frustrated I cried.

This guy could not let go of the fertility aspect. Even though he asked me at one point, “You’re 36, don’t use contraception, and you’ve never been pregnant.”

HOSTILE UTERUS, DUDE. GET WITH THE PROGRAM.

Seriously though, this was a waste of an hour of my time that I am not going to get back. He HEARD me but he damn sure wasn’t LISTENING. I have had major problems for FIFTEEN YEARS. YEARS, my friend. And that’s enough?

The fact that I’m telling you how much it impacts my life to bleed heavily and for extended periods of time isn’t enough. I made him well aware of the list of other conditions I have. Did not matter.

Ultimately he passed me off to another doctor to talk about an endometrial ablation. I left unsatisfied because I was pretty sure that wasn’t the answer. Some research later, it’s definitely not. I’ll still meet with that doctor and see if I can convince her of the validity of my choice for a hysterectomy.

If she can’t help me, then I’ll talk to someone else. And if they don’t work, someone else. I will go until someone is going to fucking listen to me and UNDERSTAND where *I*, their patient, am coming from.

 

 

 

Waiting is the pits

IN my never-ending saga of medical drama, I had a D&C yesterday so that the doctors can try to figure out why my uterus hates me. This isn’t the first time I’ve had one. I had polyps in 2008 that they took out by D&C. I assumed it was polyps this time too. I was wrong.

Turns out, it was an abnormally thickened endometrial lining with cystic lesions and increased vascularity. That doesn’t sound good, and Dr. Google confirms that’s likely the case. They’re calling it endometrial hyperplasia and the goal now is to determine if that’s true, the type (with or without atypica), or whether it’s cancer.

So now I wait.

I’ve already researched the hell out of all of it. Apparently 30-33% of cancer cases started as endometrial hyperplasia with atypia. If it’s atypia or cancer, the uterus comes out. If it’s cancer, the ovaries go too. I’d like to keep the ovaries to avoid an early menopause, but I’m not fucking around with cancer. Most of the time if there’s cancer in the uterus, it’s also in the ovaries. Thanks, but no thanks.

So I’m left with two weeks before my appointment, knowing the results will likely be available after a week. That’s the type of waiting that kills me. SOMEONE knows what’s going on, but it’s NOT ME. I want it to be ME. Even if I couldn’t see the doctor, I could get the report and obsessively research whatever it is. I like to be informed so I can ask good questions while I’m with the doctor, rather than getting the information and not knowing what to ask while I’m there.

At the end of the day, it is what it is. I’m trying to fill my time with creative and productive activity so I don’t worry. I ordered a puzzle that should be here before too long, which will hopefully take me some time to complete. I’m going to try to spend more time designing cross-stitch patterns, t-shirt and sticker designs, and some things for the direct sales companies I work with.

It’s still going to be a tough two weeks. I doubt I’ll make it that long. I think they have my appointment with the wrong doctor anyway, so I may try to do a walk-in appointment. I also need to go to the dentist for a cavity and also get a pap smear (since the doc saw something she thinks needs to be checked out to make sure it’s not cervical cancer – joy), so maybe I’ll sneak in then.

Before anyone tells me that it’ll all be okay, I won’t need a hysterectomy, please understand that whatever is needed, I’m fine with. I’ve had problems for so long that the idea of hysterectomy is actually a relief. I just need to get things better, so I’m less stressed and have less pain. I can’t deal with that on top of everything else.

I’m trying to keep it simple, stupid 😉