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!

 

Prelude to a Hysterectomy, Part I

So some of you know that I’m having surgery on Monday.  To those that don’t, well….surprise! I’m having surgery on Monday. I’m having an abdominal hysterectomy.

Now obviously this is not a surgery that you just rush right into.  And obviously there are many possible treatments out there for things like endometriosis.  I’ve had several very concerned (and I am so grateful that they are) friends that are worried it’s a little overkill.  So I thought I would set the record straight as to what I’m doing and why. 

WARNING: I’m going to be talking about my inside girly parts and their workings.  If this makes you squeamish, turn away now!

Part I: The Build up

I’ve had ovarian cysts for years.  Sometimes they’re just painful enough to be annoying.  Other times, I’ve ended up in the hospital with doctors convinced I had appendicitis.   I always had painful cramps and yucky periods, but didn’t think much of it because, hey we’re girls and cramps hurt and periods are yucky, right?  It was just the way my body worked.  So I ignored it and went on with my life.   I was on birth control for a little while to help treat some of the symptoms.

Then I got married, and I wanted babies.  Who doesn’t want babies?  I knew because of stuff that Steve had going on with his body, the chances that we would get pregnant were very very slim.  Like less than 3% slim. But miracles happen, right?  I wanted to do anything I could to increase those odds.  So I haven’t been on birth control for the past three years (which I believe has contributed to some of my current issues) and as you know, nothing happened.  No babies.  Anytime I mentioned this to my GYN, he asked if I wanted to run some tests, look at fertility drugs, etc and I always shrugged it off saying “Oh maybe sometime down the road”…just kind of ignoring the obvious. 

So about a year ago, I started having crazy, and I mean CRAZY emotional mood swings, and they got worse with each month.  They were awful, and they total reminded me of those crazy emotional frenzies I used to fly into when I was a teenager.  There was no doubt in my mind that they were hormonally driven. 

But everything was fine, right?  “Right”, I convinced myself.  “Everything is fine.  You’re just imagining it. Or maybe you’re just getting older and this is what happens in your 30s.  You go nuts like you did at 16.”  Totally normal.

Then there was the spotting in between periods.  That’s normal right?  Everyone has that at some point or another, right? “Right” I convinced myself again.  “Everything is totally normal”.  At my annual in May 2012, the GYN said he could run some tests if I was really concerned, but I waved him off.  I was fine.  I was normal!

I was back in his office a few months later complaining of cystic pain in my left side.  I was also anemic for the first time in my life (this was the first clue that something was very wrong. I’m never anemic. EVER.) I took some iron pills and felt magically better- so much less tired!  I had been draaaaaaggggging for months now.

They did an ultrasound and found that I had a quarter size normal cyst on my left ovary and a baseball sized hemorrhagic cyst (that means ‘filled with blood’) on my right ovary.  Okay, I’m not fine.  This is not fine or normal at all!  But, these cysts go away on their own.  So we decided do some “watchful waiting” and see if they would shrink over a couple of months.  At my GYN’s recommendation, I went back onto birth control, just to normalize everything.   And for several months I regularly marched into his office every month to get rescanned.  Finally, we got to the point where he said, “Lexie, there’s no change.  If you come back in here next month at the same size, we’re going in to take it out.”  Okay, I agreed.  And went on with life.

Two weeks later, on Monday morning I woke up with a really sore throat and fever.  I went into my regular doctor’s office convinced that I had strep throat.  They did the full workup: flu, strep, CBC blood count, etc.  I tested positive for strep, and my white blood cell count was up.  Anything above 10 is abnormal, and mine was at a 12 (but that’s totally normal for strep).  I got the strep shot, a steroid shot, and a prescription for a serious hospital grade antibiotic. 

Tuesday morning, I was at home recovering when I had severe abdominal pain.  The pain in my throat was nothing like the pain in my lower stomach.  I couldn’t even unfold all the way.  I figured it was just the antibiotic messing with my digestive system and muddled through, watching all the “Keeping Up With the Kardashians” reruns.

Wednesday morning, I woke up at 4:30 am in so much pain that I knew it wasn’t the antibiotics.  And I had a fever.  I went back to my regular doctor thinking it was appendicitis (again, given my past history I probably should have just gone straight to by GYN, but I wasn’t thinking, ok?).  They did another CBC on me and my White Blood Cell count had shot up to 21 in two days on TWO different antibiotics.  This is most definitely NOT NORMAL.  She sent me for an abdominal ultrasound and general surgeon consult.  The abdominal ultrasound was inconclusive, but the blood cell count was so screwy that the surgeon was still worried about appendicitis.  So he started poking around on my stomach.  He hit one spot to the right of my belly button that hurt so bad my leg flew off of the table and my knee missed his nose by mere inches.  “Yep, I think it’s appendicitis,” he proclaimed.  “Let’s get a CT Scan.”  So off I went to the hospital for a scan.  I had to drink the nasty barium milkshakes and get the contrast and all that fun stuff. 

Finally after a few hours they did the scan. I went back to my room to wait for the radiologist and surgeon to consult over the results.  10 minutes later, the radiologist came to find me.  He said “The surgeon wants to talk to you”.   I was taken back into the radiologist’s booth where I could see the cross sections of my abdomen.  I’m trying to listen to my surgeon talk to me on the phone, but I’m looking at my CT scan and all I can think is “What is that giant blob in the middle of my lower stomach?  It’s got tentacles or something.”  I finally tune back into the surgeon and he’s saying, “...not appendicitis, but a very enlarged ovarian cyst.  Can you call your GYN tonight?”  I looked at the clock and laughed. “No.  It’s like 7:30pm.  His office is totally closed.”  The surgeon replied back completely seriously, “Then call him first thing in the morning.  Send him these scans.  He needs to see them as soon as possible.”  I agreed that I would, and went home. 

Thursday morning, I went in to the GYN’s office.  They looked at the CT Scans and confirmed what the surgeon had said: that giant blob with tentacles was the cyst and it was very very angry.  So my Dr. sent me back in to get another ultrasound just to compare it to the previous ultrasounds. 

Now, something I’ve learned about ultrasound techs: they will not tell you ANYTHING about what they see.  I’ve asked them repeatedly and they’re just not allowed to do it.  So alarm bells went off when the tech asked me, “Now honey, is this cyst on your right ovary or your left?”  Me: “Uh….right…..I think….”  Tech: “Well, I just can’t really tell because it’s so big it's touching both.”  Awesome.   I immediately name the cyst The Hulk because it’s soooo big, and soooo angry.

I walk back to the consult room and the GYN tells me, “We’ve got to take it out. We’re going to book you for a laparoscopy as soon as possible.”  The nurses start running around and booking the OR.  The soonest they could find OR space was the following Tuesday, which is normally my GYN’s day off, but he said he would come in to do the surgery (which I thought was really nice of him). 

So I limp through the weekend and make it to Tuesday.  I’ve read everything I can about Laparoscopic cystectomies.  I watch videos.  I learn about the different kinds of cysts.  I read about the recovery and what makes it easier and better.  I had done my research (like the librarian I am) and I was prepped.  We roll into the hospital and the staff got me ready for surgery.    Before I got all woozy, Steve and I had a very serious conversation that went something like this.

Me: “You know **** ( a very good friend of the family- name kept confidential) went into a surgery like this in her 30s and midway through the surgery they decided she needed a hysterectomy.”
Steve: “Really?  What happened?”
Me: “I’m not sure entirely.  I think there were tumors or something.  Anyways, at that point she didn’t have any living family, so my mom was her Power of Attorney.  So the surgeon comes out midsurgery and tells my mom, ‘We need to do a hysterectomy, do we have your permission to do so?’  And my mom had to decide this poor woman’s reproductive fate in a split second.”

Steve: “Whoa.”
Me: “I know, right?  I just want you to know that if they come out and say the same thing to you, go ahead and say yes.  I won’t be mad.  Your priorities are my health #1 and everything else #2, k?”
Steve nodded: “Okay, got it.” 

And with that we were ready.

 Sidenote: For those you who know me well, you know I don’t drink- like at all, ever.  So Steve thought it was hilarious to watch them give me loopy drugs.  Apparently I was dancing in my bed and yelling things like “Whoo hoo!  Now, this is the good stuff!  PAR-TAY!” while the nurses just shook their heads.   Totally embarrassing.  I have no memory of this at all.

I wake up about an hour or so later, completely feisty and hungry (that’s how I always wake up from surgery- I pretty much turn into a belligerent cavewoman).  The nurse started feeding me cup after cup of ice chips and finally let me have a Sprite.  Meanwhile, I’m blasting her about why doesn’t she have a Library Card and how she really should get a Library Card, and she really needs to read the Sookie Stackhouse series.  I think she was very glad to drop me off into my recovery room where Steve was waiting for me. 

They roll me in and I ask Steve, “So how’d it go?”   And that’s when everything changed.

(Story continued in Part II: http://kingdomoflala.blogspot.com/2013/05/prelude-to-hysterectomy-part-ii.html)