Tuesday, June 4, 2013

10 Things I Learned From My Hysterectomy

Having a hysterectomy at age 31 is pretty brutal, and as a result you tend to learn some life lessons. 

Before my hysterectomy I had a laparoscopy which was supposed to remove an ovarian cyst.  While I was preparing for that surgery, I came across a really helpful list on the Internet of "10 Things I Have Learned from my Laparoscopy" (http://www.medhelp.org/posts/Ovarian-Cysts/Top-10-things-I-have-learned-from-laproscopic-cyst-ovary-removal/show/518374?page=1

Boy, I wish I had a list like that for my hysterectomy!  As I have a dear friend going through this in the next week or so, I thought I'd write down some of the hints, tricks, and lessons I've learned during the last two weeks in hopes that it will help my fellow hyster-sisters out there!

1. YOU ARE NOT ALONE.
Statistically speaking, it is the second most common surgery in the United States with an average of 622,000 women undergoing this surgery each year.   There are currently 22 million women in the United States who have undergone this procedure and one out of every three women can expect to have it before they turn 60. But statistics can seem cold and unfriendly when you're lying there on the hospital bed.  So here are some other options:

Hyster-Sisters: most of those 22 million women are online and talking about their experience.  And you can find the best vault of knowledge about ANYTHING (and I do mean ANYTHING) related to hysterectomies at http://www.hystersisters.com/.  They'll prepare for your hysterectomy, be with you through the surgery (you get a special roll call/shout out on your surgery date!), recommend what outfit to wear home, and be there to help you through the healing process.  There is no question too weird, too distasteful, or too painful to ask them.  And it helps to know that you have an online community just waiting and ready to accept you with open arms. 

Friends and Family -  You will find out that you are way more loved than you ever thought possible. I was very open about my surgery because I knew I would need all of that support.  From visits, to meals brought over (more about that in a second), cards, and Facebook posts you will find an outpouring of love.  I find it very hard to ever ask for help, but I am making a very conscious effort to ask for something when I need it.  I found it gives others a service opportunity they didn't have before (most are extremely excited to help) and it strengthens our relationship.  Plus I know that I will be there if they ever need anything.

2.  FOOD GLORIOUS FOOD.
And when those Friends and Family converge on you and say "How can I help?  Can I bring you a meal?" you'll get really overwhelmed really quickly.  Luckily, I have a sister who is great at organizing crowds.  She signed our family up for www.takethemameal.com and became our meal coordinator.  It was so nice to not have to worry about the coordinating of who would bring what when and just be grateful and excited when the meals showed up.  The only downside is that Steve is now bemoaning the loss of his girlish figure from all these cookies :)

3. PANTS ARE THE ENEMY.
There's lots of talk on the HysterSisters website about "swelly belly".  For those who are uninitiated, swelly belly is where your stomach swells around the incision site, especially for those who have abdominal hysterectomies.  Now with my hysterectomy, I've compared scars with some of my C-section friends, and my scar is about twice their size.  They've got nice little 6 inch scars.  Mine runs from hip to hip.  From things I've felt, read, and things the nurses have let slip, I'm pretty sure my doctor was up to his elbows digging around in there.  That's hard for a body to get over.  So there is definitely some swelling.  My normal pooch (that most of us girls have right below our belly buttons) swelled to unbelievable proportions and is just now sort of getting back to normal.  Some of the Hystersisters say it took theirs 6mos-1year to get back to completely normal.  That makes most of your old wardrobe now defunct.  And bless their hearts, the Hystersisters do offer these lovely "waistband extender kits" which to me just look like you're wearing granny panties and can't button your jeans.  So I stayed away from those, but hey- it's an option.  http://www.hystersisters.com/store/accessories/waistband-extender-kit/

 In addition, those incision sites?  They hurt.  The thought of wearing anything with any sort of button and zip waist makes me squirm in horror.  Some hystersister recommend wearing maternity pants for the first few months after your surgery.  I don't know that I'm that far gone- although I have considered it.  Instead I invested in several pairs of maxi dresses and skirts that have elastic waists and are nice and flowy.  That was one of the best things I've ever done.  They are so comfy!  And with no pinchy waist parts. 

4. PEOPLE VISITING THE HOSPITAL IS A BAD IDEA.
So many people have said, "Oh I wanted to come see you in the hospital" and I am oh-so-glad they didn't.  For several reasons.

The day of your hysterectomy they'll dig out some internal organs, stitch you back up, and then send you to your room where you will be expected to GET UP OFF OF YOUR STRETCHER AND WALK TO YOUR BED!  My response: "Unless you are Jesus here to heal me, I'm not getting up and walking off of this thing."  It took several nurses and a round or two of some anti-anxiety meds to get me onto my bed.  So get ready for that.  Had I been mentally prepared for that I might not have been such a whiner.

Oh, who am I kidding?  I totally still would have been a whiner.

You're in pain, you're in recovery, and you're under the influence of many pain meds.  Make sure that whomever does come to see you knows that.

But don't worry about it too much- you won't spend that long in there.  I had an abdominal hysterectomy WHERE THEY SLICED OPEN MY STOMACH AND REMOVED THINGS and less than 36 hours later, they let me roll out of the door.  As I was informed, this is the norm now thanks to some new health care system laws.  And honestly? I was ready.  I even talked them into letting me go a little early (which wasn't that hard because the nurses were so ready to get rid of me).  So you won't even be in the hospital that long. 

Just tell everyone to wait until you get home.  And if you aren't up to seeing visitors tell them "No, I'm really not up for it".  I did it several times.  Because honestly, there are times that you're just going to want to sleep.

5. BE READY TO WATCH SOME JUNK TV.
I thought, "Oh, I'll make sure to have a nice stack of books to read".  Bad idea.  After the surgery and on the pain meds I was so loopy, I had an even worse attention span than usual.  I'd try to read and end up falling asleep.  I'd try to watch movies but loose interest half the way through.   My saving grace was Netflix, Amazon Prime, and Hulu.  I developed an addiction to the shows Nashville and Grimm. Nice little 45 minute episodes that I could nap inbetween. And that's pretty much all I did for the first two weeks.  After about 14 days or so, I started getting back to my normal self and picked up some books.  But for awhile I really wasn't up to reading! 

6. HORMONES ARE THE ROOT OF ALL EVIL AND ACNE.
Once they remove everything they're supposed to remove, you'll go into surgical menopause.  And everything I read on Hystersisters is right: It hits you like a semi truck on days 4-6. 

There were tears.  Like snot running down my face, worst PMS of my life, "I don't even know why I'm crying!" tears.   And they lasted for about 3 days.  Then miraculously I woke up one morning and they were gone!  And then...the hot flashes settled in. 

Now, I can't be on any hormone therapy for 6 weeks because of my acute endometriosis.  Estrogen feeds the endometrial cells and we have to make sure that every single one of those suckers dries up and dies.  Otherwise they could come back to haunt me and stick all of my organs together again.  So what do you do?  I stand in front of my freezer a lot.  And I live with my hair up in a ponytail.  At the recommendation of one of the Nurses, I take B vitamins and Folic Acid and those seem to have reduced the number and intensity of the hot flashes immensely.   I also get to experience some really fun (not really fun) night sweats.  I have several pillows and I just change them out during the night when one gets too funky.  I do a lot of sheet laundry.  It's just life and we're getting used to it.

Those are all of the weird things that happen with menopause.  Now the upsides: 
  • I AM COMPLETELY PIMPLE FREE!!!  Yes!  I turns out it was those hormones that caused all of my skin problems all along!  I'm having the best skin I've ever had in my life. 
  • Once the PMS funk had passed, I am having the most stable and positive moods that I have had in YEARS.  Seriously.  I blame anything mean or harsh that I said in the last 19 years on hormones. 
  • My constant craving for sugar and sweets and empty carbs has disappeared.  Y'all, I used to eat all the time.  Like ALL THE TIME.  It helped a little bit with the nausea (which again, was also caused by the hormones of doom) but mostly I just craved food.  Constantly.  It's a very interesting experience for me to only eat 3 times a day at meal time and not crave more during the rest of the day.
  • All the nausea and headaches and pain caused by the endometriosis (which came on so slowly I just thought I was getting older- didn't realize there was anything THAT wrong) is gone.   I seriously feel like myself for the first time in years.  And it's a wonderful, wonderful feeling.  It's one of those things where you don't realize how screwed up you really were until you feel better!
7. WATER BOTTLES ARE YOUR FRIEND.
This is another tip I read on HysterSisters.  Take a waterbottle or two and stick it in your freezer.  Let it freeze complete solid and then stick it in an old gym sock.  It's the perfect size to sit on your incision while you watch TV and rest.  They'll tell you to alternate cold with heat, but if you're anything like me and my hot flashes, the idea of heat is totally repugnant.  So I just alternate cold and not cold.  And it feels heavenly.  Best of all because it's in a bottle and the ice is so thick, it won't melt as quickly as an icepack and it doesn't leak.  It's the best thing ever.

8. PILLOWS CAN BE HELPFUL.
They'll tell you to take a "tummy pillow" with you to the hospital to help you get up and walk around.  Personally I didn't find that very helpful but apparently some do.  However, I did find the pillows very helpful in that I am a side sleeper and after abdominal surgery- side sleeping is almost impossible.   But pillows propped up strategically can help. Position #1- If you can roll on to your side, slide your bottom leg straight, and move your top leg up in a 90 degree angle (kind of like a yoga position) with the pillow under it, you can sleep on your side.   Position #2- If you create a little nest out of pillows on either side of you, you can kind of turn sideways on your back and it's kind of like sleeping on your side- but you're still on your back.  Honestly, as comfy as Position #1 is, I've found the swelling in the morning is a lot less painful and stuffy in Position #2.

9. GET OFF OF THE PAIN PILLS ASAP.
I'm not talking like the day after or anything.  If you need the pain pills take them.  The only problem with being on the pain pills is that you can't actually feel anything.  You'll be up and walking around and feeling fine- when you're anything but.  I weaned myself off of the pain pills and on to Ibuprofen and Tylenol as soon as possible.  This helps dull the pain, but you still know where and what is hurting.  It can help you target your ice pack.  It will also keep you resting like you know you should, but won't if you're painless.  And if you get used to the way your incision/etc feels then you'll know when something is wrong or really wrong.  I had a pretty bad bladder infection in week 2, but I don't think I would have felt it if I was still on the pain pills.  I'm glad I was off of them and able to say, "You know, I'm hurting in places I didn't hurt yesterday and in a very weird way.  Time to call the doctor!"

10. LEARN THE HYSTER-ROLL.
There are actually plenty of posts about this on Hystersisters.com, but I just wanted to point it out.  You will not be able to sit straight up after your surgery.  I'm 2.5 weeks out and I tried it the yesterday and it still hurt like %^&*.  So how do you go from lying down to sitting up?  You do the Hyster-Roll.  When you're lying down, roll up onto your side.  Bring your knees in at a 90 degree angle, or dangle them off of the bed, couch, etc.  Using your arms, push yourself up going hand over hand until you are sitting upright.  It'll take you awhile to get used to getting up like this.  There were several times where I woke up in the middle of the night to use the bathroom, forgot that I had an incision and tried to sit up like normal only to fall back into the bed in extreme pain.  However, if you keep working at it, the Hyster-Roll gets easier and easier and becomes a habit. 

I'm not going to lie.  Getting over a hysterectomy is hard.  It's hard physically, and it's hard emotionally.  Don't be afraid to take the time and space that you need to recuperate.   Make sure you have a support system in place.  But more than anything: remember that you are loved and you are not alone!



6 comments:

  1. Hi lexie. Seriously the funniest blog I've read in awhile. I don't read many as they have to be really good to draw my attention & I don't have alot of time w 4 kiddos ....but so refreshing being 1 week post op from my partial hysterectomy/removal of 13cm uterine muscle mass.
    Made ma laugh a lot which u know is the danger zone 😂😮 ENJOYED. One hyster-sis to another 😄 kerri

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  2. Hi Lexie, thank you for sharing your experience with us. I am scheduled to have my abdominal hysterectomy in about 16 days. So I am searching online to see what I need to prepare for the surgery. Although I am a little scared reading what you have experienced, it helps me to get a more clear picture of what to expect. So I just want to say "THANK YOU."

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  3. Oh I really enjoyed this post, especially the part about the gurney. I'm having triplet fibroids delivered on 9/12, they have me measuring at almost 6mos, and on a lovely med called Megace to keep me from bleeding out until then. What they didn't tell me was it is primarily a chemo med (gee thanks) and secondarily used for people with HIV/failure to thrive to gain weight. Now if that isn't just awful. Here, take a pill for three months so your hemoglobin is ok for us to do surgery that will make it next to impossible to lose weight, and BTW, you might just gain 30 lbs first. Thanks for writing about the things they don't tell you so we can all hopefully go in a little better prepared. Can't wait to read more of your posts!

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  4. I am a Nurse and prepare people for surgery daily, but knowing that I will be that patient is a little different. I am nervous about the recovery, although I believe that my divinci robotic hysterectomy will be much easier to recover from than the full horozontal cut in the abdomen. My surgery is 1 week away and I just keep reading and realizing how wonderful my muscles are right now and how many things wont come easy while my belly heals. Hopefully, I get to keep my ovaries (although I have mixed feelings on that too). This is the first post that Ive read. Now Im off to find out about the hyster sister website that you mentioned. Thanks sooo much for sharing your experience!

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  5. Am 36 yrs. I desire to give birth. After the surgery I feel so bad that I can,t get pregnant. And I noticed that am no longer fit the way I used to. Pls I need your advice.

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  6. Thank you, thank you, for a wonderful post that I found at just the right time. I learned today that I'll need an abdominal hysterectomy next week, and this has helped me process what is going to happen to my body in the days and weeks afterward.

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