Prelude to a Hysterectomy, Part II

(If you haven't read Part I, you can find it here: http://kingdomoflala.blogspot.com/2013/05/prelude-to-hysterectomy-part-i.html)

Part II: What A Mess.

Steve looks down at me in the bed and says, “You need a hysterectomy.”

Now remember, I’m still in post-surgery cavewoman mode, so I reach out from the bed and pinch him really hard on the arm. “That’s not funny.” (I thought he was teasing me because of our conversation before the surgery.)  “How did it really go?” 

At this point he’s taken a good full step back out of my reach and repeats, “You need a hysterectomy.  The doctor came out in the middle of surgery and said they couldn’t remove the cyst.  It’s too big.  And there’s too much tissue.  And you have severe endometriosis.  And you’ve got organs growing on other organs.”  He shows me some of the pictures they took during the laparoscopy. 

“You see all this stuff that looks like grape jelly everywhere? That’s endometriosis.  And you see that line, that’s your fallopian tube, with your ovary totally tucked behind where it should be.  The Dr. says that as you are now, you’re completely infertile.”

I digest this, still in cavewoman mode.  “So they didn’t take anything out.”

Steve: “Nope.”
Me (yelling): “Didn’t you tell them to take it all out if they had to???”

Steve (totally calm- this is why we’re together): “I did tell them that.  But your Dr. wants you to have all the facts and then make the decision.  You’ve got three choices: leave everything the way it is and be in pain, remove the cyst via a C section like surgery and have it come back to be in pain, or a full hysterectomy.”

I flop back on the bed and give a very cavewomanly snort. 

We go home and Steve feeds me chocolate, Percoset, and episodes of Justified.  He’s a good husband.

Wednesday: I spend all day researching my options.  I know all about hysterectomies now.  I know about the different kinds, I know about the procedures.  I know about the risks, I know about the alternative options.  I’m not a Jedi Master of the National Library of Medicine for nothin’ folks.

But what I don’t know are all of my details.  What has my doctor so concerned?  What made him walk out of a surgery like that?  There has to be more than what Steve remembers. I look at the pictures again and again.  I look up pictures of healthy pink ovaries and uteruses online and compare them to mine covered in grape jelly and contorted into weird shapes.  Not looking so good. I have a post op appointment set for Thursday morning at 9:30 am.    

Thursday: We get to the Doctor’s office at 9:15.  He’s off on an emergency C section so it’s going to be awhile.  The nurses decide to go ahead and get me processed and back to a room though.  One of my favorite nurses is doing the weight, temperature, blood pressure, etc.  While she’s doing all this I ask her, “So, did he tell you about my surgery?”  She nodded and said, “He says you need a hysterectomy.”  I take a deep breath.  “Yep.  That’s what I’ve heard. I’m wondering if he’ll tell me about other options?”  She nods and said, “Oh, of course he will.  But you need to know two things.  #1: I’ve worked here for 10 years and I can count on one hand the number of times he’s walked out of a surgery like yours without touching anything.   And #2: I can also count on one hand the number of times he’s recommended a hysterectomy to someone your age.  He’s pretty serious about this.”   Me: “Oh goody.”

The doctor finally makes it in and he’s able to tell me what I’m seeing in the pictures.  The grape jelly stuff is Stage IV Endometriosis.  This is when your uterine lining goes a little haywire and grows outside of where it should (i.e. your uterus).  The problem with this is not only is painful, but if left unchecked for a while (like mine had) it swells and bleeds with your cycle and causes inflammation and adhesions in the surrounding tissues.  And mine is growing on my uterus, bladder, and kidneys.  And then there’s the adhesions. The adhesions are bad news. Because of these adhesions, my uterus is now fused with my colon.  My ovaries are completely twisted around and fused with another section of my lower bowel (big time concern because of a really bad history of colon cancer in the women of my family.  You don’t want anything growing anywhere near there. Ever.) There are a few uterine fibroids hanging out (another concern because my mother had a hysterectomy in her 40s due to uterine fibroids).  And The Hulk is still there, hanging out between the ovaries in all its softball sized glory.  Although now instead of thinking it’s a hemorrhagic cyst, they think it’s an endometrioma, a benign tumor caused by endometriosis.   

Why didn’t they see any of this stuff before the laparoscopy?  Endo is particularly hard to detect outside of laparoscopy because CTs, ultrasounds, xrays, etc aren’t in color.  And color is one of the only ways you can ID Endo.  Adhesions are also very difficult to find outside of a visual confirmation.  So it took the laparoscopy to find all of this.

We talk about alternate options to a hysterectomy.  Most of the things the doctor suggests are things that I’ve read about the day before.  And they all have a reoccurring theme: the cysts, the endometriosis, the fibroids, they will all come back and we’d have to do it all over again.  Meanwhile I will be going through the same awful hormone cycles, periods, bleeding, cramps, and cystic pain.  And putting myself at a higher risk for fibroids and colon/bowel cancer. (And it could also possibly be causing some of my IBS symptoms).  And for what?  There’s a less than 3% chance Steve and I will ever be able to have our own children.  And honestly, with all this growing around in there, that percentage goes down even lower. 

I ask my Doctor: “So, when you first got in there and you saw all of this” (gesturing to the mess in my  pictures), “What was your first gut reaction?”

He looked me straight in the eye and grimly says, “Hysterectomy”. 
So I take a deep breath and say, “Ok.  That’s what we’ll do. Let’s talk procedure.”

It has to be an abdominal hysterectomy- not a laparoscopic or vaginal- to get everything (like The Hulk) out.  In addition, because everything is fused to everything else with adhesions, they need to be able to see AND feel the difference between the organ tissues.   This guarantees they don’t take a chunk of my colon off with the uterus. 

And of course I ask, “Is there any chance that this could be cancerous?”

The doctor replies that we won’t know for sure until the pathology comes back from the labs, but that he would be shocked if it was.  Everything looks very benign.  So that’s a relief.

My next question is, “When?”  as I’m assuming they’re going to wait a few weeks till they can schedule an OR or something.  The doctor says, “As soon as possible.”  He then brings his scheduling nurse in to set it up.  She tells us that the soonest date will probably be June 4, but that the Dr really wants it sooner than that (this sets off alarm bells in both Steve and my head, as I have a dear friends with cancer who needs a similar surgery at UAB and they’ve got her scheduled for mid June.  Something’s up). 

“Also”, the nurse tells us, “it’s going to be a little tricky to schedule because he wants another surgeon in the room with him.” Again alarm bells….that seems unusual.  So we nod and leave the office, assuming that it’s going to be in early June.  That afternoon I get a call from the doctor’s office.  They’ve scheduled the surgery for Monday, May 20 @ 7:30 am.  This time was not available when we were there earlier in the day.  I’m willing to bet they bumped someone out of this slot.  Again, alarm bells. I think the doctor is more worried than he’s letting on.  And that makes me feel even more secure in the decision I've made.

So Friday, I set about getting everything ready for next week.  The people at work are incredibly understanding and very helpful.  I have short term disability insurance (which I don’t really remember signing up for, but that I’m very grateful I did now) which will cover the 6 weeks or so that I’ll be out.  And my staff is so supportive.  I really do work with some of the best people in the world.

The other thing I really wanted to do before surgery is see my psychiatrist and my therapist.  After all this is a pretty monumental life change.  But I don’t hold my breath- it takes weeks to schedule an appointment and get in with either one of them.  But just for fun, I call Thursday afternoon to see if either has any cancellations.  And miracle of miracles, they both do.    I was able to see both of them on Friday and have full support from both.  That means a lot to me, as I know that this will not be an easy transition.  But both were very encouraging and agree that in the long run this will probably be the best choice for me and my health.

Recovery time for something like this is similar to a C section.  They’ve told me to plan on 6-8 weeks.  However, I was also told to plan on an entire week out after the laparoscopy and aside from the Percoset I took the night of, I was painkiller free most of the time.  Up and walking and back at work three days later.  Compared to the amount of pain I’ve gone through with cysts and cramps, it was really no big deal.  I’m hoping that the same will hold true from the hysterectomy surgery.  I know I won’t bounce back quite as quickly, but I’m hoping to be up and moving around at least a week afterwards.  We’ll just have to wait and see.  I don’t sit still very well.

So I apologize is this has all been too TMI.  It’s been incredibly therapeutic for me to write and I thought it might help squash some of the rumors and shock that’s flying around out there. 

Basically, I feel like I have been guided along on this process (not sure why or why now) by God’s hand.  Things have fallen into place step by step.  I feel a real measure of peace about the whole thing.  I have considered other options, but have determined that this is the right course for me and my family.  I appreciate all of the love, support, and prayers that you have showered over me in the last week.  Keep ‘em coming…because I’m pretty sure I’ll need it as I go through the recovery!