Sometimes, you really don't know what you got 'til its gone

Hello All!

Let's begin this post with a picture.

There. Now the stage is set. 

Tomorrow marks 7 weeks since my hysterectomy. A few days ago I had my post-op, hey how you doin', follow up. After my Dr. asked me how everything was and if I was feeling good, she said, 

"So, we did a biopsy (of my uterus)."

"Oh, ok." ( I guess it shouldn't have come as a surprise that they did this, but I hadn't really thought about it so it was)

"AND," pause, "You had massive amounts of fibroids!"

I followed this up with a blank stare and some shocked silence. Eventually I said, "What? Really?"

"Yes, that was a surprise!" said my Dr. with real honestly and strangely over the top enthusiasm.

"So, I had fibroids and andenomyosis?"

She glanced at my file, "No, just fibroids."

After few more seconds of trying to take my new diagnosis in, she said something along the lines of fibroids, the kind I'd had, presenting very similar to andenomyosis and that it can be very hard to diagnose. Well, clearly, or not clearly as turned out to be the case, it was a misdiagnosis. After all, she had been sure that I didn't have fibroids. During my appointment in November 2016, she had said that all the bits of things in the muscle of my uterus were most definitely andeomyosis, not fibroids.

So, I'd run with that. I took that condition on. I researched it, joined a group, wrote posts about it, got along with most of the symptoms of adenomyosis AND THEN, turns out I didn't have it at all.

I don't know why, but I felt like a fraud. It was like I'd run around telling everyone that I believed Batman was real guy, and had convinced other people that he was a real guy, only to find out that he wasn't a real guy and I should never have believed in Batman. (Don't worry...I don't really think Batman is a real guy. Or do I?) I was shaken by the misdiagnosis to the point where, by the time I got in the car, after she released me from ever having to see a gyno again (unless my ovaries go nuts), I was half crying, half laughing. 

When I got home I looked up fibroids, and the type of fibroids I had (Intramural fibroids if you're curious.), all the symptoms were spot on with adenomyosis. As well, the only for definite sure-ies way to get rid of them was a hysterectomy. So while I don't regret having the hysterectomy, I truly do wonder if I would have waited longer, or if I would have tried a different treatment approach before saying yes to a hysterectomy. I was left with a feeling of, not regret, but a touch of frustration that my decision to have surgery was based on a condition that I didn't even have. 

In the end, when it's all said and done, I'm feeling MUCH better than I did before my surgery. I probably would have made the same decision since my time of the month was taking up most of my month, my social life, my energy, my well being.

Besides, what can I really do about it? I've had the hysterectomy. My abnormally large uterus that commanded respect, like Batman, is but a legend. I guessing  I really would have just liked knowing the real state of things instead of finding out what I got until after it was gone.

Let's end with a short video.

Until next time,
Respect!
Cin

Post-Op Post

A week ago at this time I was somewhere between naps. Currently I’m trying to find the right words to describe surgery, my short stay at the hospital and my on-going recovery.

What can I say really? I went into the hospital on May 29, 2017 with a uterus and came home on May 30, 2017 without one. I assume by now it's been incinerated and tiny particles of my uterus are now part of a cloud and will soon rain down on strangers in a distant land.

Or on friends and family here in Canada...sorry about that.

If you read my post about my diagnosis of adenomyosis you already know that previous to my hysterectomy I was the owner of an abnormally large uterus, a fact that my gynaecologist/surgeon reminded me of not once, not twice, but three times during my time at the hospital. 

When we were having our pre-op chat she asked me, much as she had at my appointment in February, if we had discussed Mirena, a type of IUD. I said yes we had but that she had said it wouldn’t work for me because my uterus was too large. After a quick scan at my chart she said, “Oh yes that’s right. It is very large and quite wide. The poor Mirena would be lost up there and wonder what it was doing in this monster.”

In our post-op, hey you can go home now chat, she said everything went well, but that they'd discovered I did indeed have fibroids as well as adenomyosis and that my uterus was (emphatic hand gesture) "quite large". (I didn't ask for details, or if they'd had to use a truck and cable to get it out. I just nodded and smiled.)

And now here I sit, or rather recline on my bed like a lady of leisure in my room, without my monster -sized uterus, contemplating my recovery. Aside from a bit of pain, mild discomfort, and times of fatigue I feel okay. I have a month off work and I really hope to make the most of it. Over the last year and a half my life has been interrupted more than once by my condition. I have said no to many things, events and people that enrich my life. I have turned down roles in plays, dinner dates and phone calls with friends, put off writing stories and playing music because I was in pain or tired or had simply run out creative energy. I truly hope to get my life back to where I want it to be.

I want to write more, act more, play more. 

I want to be more than I am right now.

That’s a lot of pressure isn’t it, Cindy? Yes, you are right. It really is. A few weeks ago, I asked my husband what happens if I don’t live up to the freedom of not having a uterus. He just shook his head and asked, “Who is putting this pressure on you?”

“Nobody but me.”  I said.

If I go back to work not having done anything except finish all of Silicon Valley or read two or three books or sat on my front deck and watch the clouds drift by will I have failed my new-found freedom? Or will I simply taken that freedom and used it to give myself a break from feeling like I always should be accomplishing something?

Or worse, what if I really don’t have anything to say, to write about, to learn on the ukulele that hasn’t already been done by 1000 other people and I no longer have an abnormally large uterus to hide behind and use as an excuse to not do anything? What if this is it? My creative drive has actually dried up and I may as well get used to my future accomplishments being things like catching up on Suits. (which is a great show! I mean no disrespect!)

However, I know I'm just being silly. That last paragraph was self-indulgent nonsense. While in the next month I may not write an epic saga or become an expert on the ukulele I know that my purpose here and now, no matter how big or small the project, is to be creative. It is the force that drives me. My new-found freedom and need to be creative is not new-found at all. 

It’s just been hiding for a while behind an abnormally large monster.

The best to you,

Cin: Now uterus free.

Massive Hysteria

I don’t mean to brag but, I have an abnormally large uterus.

Or at least that’s what my gynaecologist told me last November as she studied with, dare I say, intense awe at my uterine ultra sound scans.

It’s hard to know how to respond to a statement like that. And she said it not once, but twice!  Emphatically, along with “It’s huge! And very chunky!”

Instead of saying, “Oh go on with you! I’ll bet you say that to all the girls!” I just said, “Okay…"

The inspection of my scans continued in between glances at my file and explanations of what I didn’t have.

“You do not have fibroids!”

Back to my file.

“Your ovaries are fine!”

Back to my scans.

“You had an endometrial biopsy! Who gave you that?”

Back to my file.

“You have…”

Back to my scans.

“Andenomyosis!”

“What is that?”  I asked. The word meant nothing to me except that it sort of sounded like endometriosis and as it turns out, sort of is like endometriosis. You see, while endometriosis is when the endometrial tissue grows outside the uterus in all sorts of places, adenomyosis is when the endometrial tissue, instead of just growing in the uterus like good endometrial tissue is suppose to, grows in the muscle of the uterus. So, every month, when my uterus gets rid of the tissue in its painfully dramatic fashion, it also gets rid of the endometrial tissue in the muscle of my uterus.

While I listened to my gynaechologist give me the story of adenomyosis and all the issues that come with it, my symptoms suddenly made perfect sense and I was flooded with relief. I wasn’t crazy! It’s not all in my head! My pain is real and I have good reason to feel miserable a great deal of the time!

After the explanation she immediately launched into a talk about treatments. They were four-fold.

“One! You could have an ablation, but I would not recommend it (didn’t she just do that?). It won’t work and you will come back to me saying you’re in more pain!”

“Two! You could get an IUD that would release progesterone into your uterus thereby slowing the bleeding! But, in a uterus of your size (thanks?) I wouldn’t recommend it.”

“Three! We could try pain management with a stronger pain killer and continued use of Tranexamic Acid to slow the bleeding.” (You know, the stuff they prescribe to people after they’ve had dental surgery? To stop the bleeding?)

“Four! A partial hysterectomy. What would you like to do?”

I sat quietly for a few seconds, mulling over my situation and the four, but really two, options laid out before me.

“Um…” I said, “Let’s try pain management first and then if that doesn’t work…a hysterectomy?”

“Ok!” she said as grabbed her prescription pad and started writing. "I'll prescribe enough for three months and then you can come back in for a follow up."

I thanked her very much but before I left I needed to have a peek at my scans. I leaned over her desk to get a good look at my large, chunky uterus. The endometrial tissue was all over it, peppering the entire surface. It looked like a constellation with a concentration of stars in the top left corner of my uterus. I pointed that area out to her and said a lot of my pain seemed to be focused right there.

She said, “Well yes! Look at it! This area…”and with a gesture akin to jazz hands she exclaimed, “This area commands respect!”

I did not laugh. I did not say, “Damn right it does!” but smiled because it was one of the best things, regarding my physical self, that I’d ever heard.

And now, here I am on my 44^th birthday. Last week, after three months of not so much pain management as much as learning that stronger meds don’t really help, and my life is still being interrupted by being bouts of stabbing pain, I’ve decided to have a hysterectomy. I am nervous, but I know, once it’s all said and done, I will feel a whole lot better.

And I will look back fondly at the girl who once had an abnormally large uterus that commanded respect.