Showing posts with label Endometriosis. Show all posts
Showing posts with label Endometriosis. Show all posts

Tuesday, July 28, 2015

Choices and Understanding

For the past two years I have struggled with the decision whether or not to have a hysterectomy due to my endometriosis.  I came very close once, but ultimately didn't feel right about it.  I had a laparoscopy instead (my fourth) and for almost a year it did bring some relief.

Even with the combination of birth control, my pain started to creep back in.  Before I knew it I was uncomfortable all of the time.  Ninety five percent of the time I awoke already hurting.  The pain would come and go all day long, but always was at it's worst in the morning.  I think it was due to have a full bladder and that irritating the endometriosis that covered it.  I had no choice, but to push through and take care of my kids even though I just wanted to lay down in fetal position all day.  I'm thankful I had my children to teach me to endure despite set backs.  Not to mention, I never knew what pain was connected to endo and what was just normal.  It's hard to decipher what your suppose to feel like when you've always had issues.  To me it wasn't necessarily pain, because I never felt anything BUT uncomfortable.  For all I knew everyone felt like that.  I always wondered if I just ate something that hated me.

Early this year I had a cyst the size of an orange.  It had a possible cancerous spot and after some thought and prayer I decided to have my whole ovary removed.  I knew a hysterectomy was close in sight, so losing one ovary didn't scare me too bad.  Gregg was still in school and we were barely surviving so I knew it was not the time for a full hysterectomy.  I would need a huge incision in order to pull out the giant ovary and safely remove it without spreading possible cancer throughout my body.  I was mentally prepared and just wanted relief.

During my pre-op appointment the day before surgery my doctor did one last exam to make sure the cyst was still there and growing.  Sure enough it was so he went over everything I needed to know and then left the room.  I immediately felt more uncomfortable, but figured it what due to the exam irritating my insides.  I still had to go to the hospital to do my pre-op check in and get blood work done.  I didn't feel good, but the intensity was about the same I had had on and off so I pushed through.  The nurse asked my what my pain level and I said it was a five.  Which makes me laugh now.  After I was done I picked up dinner and went home to finish cleaning the house for the next day.  I didn't feel too different than normal so I decided not to waste an Ibuprofen and to just deal with it.

I awoke the next morning feeling back to normal and we continued on with surgery.  After I had been put to sleep, my doctor decided to do one last exam before cutting me open.  To his surprise the cyst was completely gone.  They did an ultra sound and found lots of fluid floating around my abdomen confirming that the cyst had burst recently.  I came out of anesthesia very confused and also very embarrassed.  How did I not know I had a cyst burst?  Doesn't that send people to the hospital because of the intensity of the pain?

It didn't take long for me to realize that the pain from my endometriosis caused way more pain that a cyst bursting.  It was the first time my doctor or I understood the intense misery I was really enduring every day.  It was time to have a serious conversation with myself about having a hysterectomy.

At first I cried a lot.  I knew the time was near, but I didn't know if I had the strength. My infertility was thrown in my face all over again.  Friends my age were announcing pregnancies and all I could think about was the fact that I should be able to relate to them more than I could to 50 year old woman.  I had always secretly hoped I would become pregnant by surprise and I would finally be able to take a breath of relief.  My burden would be gone and I wouldn't be infertile anymore.  Just like I always suspected.  I obviously hadn't come to terms with being grouped as such.  My mom had six kids for heaven sakes.  I should be freaking out about being pregnant AGAIN not coming to terms with the fact that I will never, NEVER know what it's like to birth a child.

It was sad and tragic and I let myself cry...alot.  I had to mourn the loss.

We set a tentative date for 5 months away when Gregg was done with school.  I knew if I was going to make such a permanent decision I had to have a concrete answer from up above before I could go through with it.  I prayed and prayed and prayed some more.  I weighed the pros and cons and went back and forth on what to do constantly.  After one such prayer a thought came to me saying, "your home will still be filled with children."  It was comforting that there was still an important plan for our family that didn't involve me birthing children, yet I still had reservations that having a hysterectomy at this time was the right thing to do.

The ONLY concrete answer I ever had was that of Free Agency.  Meaning, it was my choice.  If I was done I could be done.  If I needed more time I could have more time.

NOT the answer I wanted.  You see,  I am a rule follower for the most part. Not that I don't make mistakes or occasionally go against the teachings of the LDS church, let's not get into my weaknesses at the moment,  but when making big/huge/permanent choices I like to know the Big Guy is directing me on what to do.  I mean WHAT ON EARTH WAS HAPPENING?  Just tell me yes or no and let's get on with life.  I should not be trusted with such important decisions and yet, here I was.

In an email I received a couple weeks ago from the Church of Jesus Christ of Latter Day Saints they answered this perfectly.  Elder Richard G. Scott said in a general conference talk, "You may want to express thanks when that occurs, for it is evidence of His trust....God will not let you proceed too far without a warning impression if you have made the wrong decision."

I moved forward and actually made the call to schedule surgery.  During and after the phone call I was completely calm.  I took that as a good sign to move forward.  

Preparations were made, babysitters found, and before I knew it I was laying on a table with big scary lights above my head ready to be turned on to change my life forever.  My last memory is one of prayer.  I admitted I was scared and needed peace and comfort.  

Before I knew it, my name was being called and I immediately felt horrid pain.  Greater than that was the overwhelming peace covering me like a protective blanket.  I did it.  I made it through.  Despite feeling like...well... like something had been ripped out of me, I felt relief and quite possibly even joy.  

Never have I felt so watched over and comforted during a time that should be upsetting and bitter.  

I was kept in the maternity ward during my night at the hospital.  Twice I had random nurses burst into my room cheerfully asking us where our baby was.  My nurses were like Pit Bull's protecting their young and angrily sent them away.  I literally laughed it off.  The irony, I thought to myself.  During the night I heard newborn after newborn crying in their mother's room.  I was only thankful I could go back to sleep without worrying about feeding a baby.  The next morning as I was being wheeled to our car we shared the elevator with a dad holding gift bags and pastel pink balloons announcing the birth of their new baby girl.  The nurse kept me busy talking about my own two children, bringing memories of their unique and precious deliveries.  I thought, how lucky am I to have M?  She made a choice far harder and more important than I just did and she did it.  I recall during the few weeks before Emme was born, M using the word peace over and over.  Placing Emme was physically and mentally excruciatingly heart wrenching for her, yet she used the word peace several times.  She had complete agency to choose, but she was not left comfortless.  While riding in that hospital elevator I finally understood what it was like to have an army of angels sent to comfort and provide at the most critical moments in our life.  I like to imagine a room full of women calming and holding me during my hospital stay.  I felt them and know they were sent to carry me through.  

About a week after my surgery Gregg and I had a moment alone thanks to my mom coming to help.  I started to cry as I told him about my experience and the realization that the intensity of their warmth had left.  I told him I was ok and I would be ok.  He just needed to know that random tears would be shed here and there as I continued to seek healing from infertility.  

And so it goes...seven weeks post op and I have very minimal pain.  I can already see the benefit of having a hysterectomy.  The choice was mine and I am thankful I was trusted enough to make it.

--Then sings my soul, My Savior God to Thee.  How great Thou art, How great Thou art.  





Friday, January 30, 2015

My Body Hates Me

This winter is getting the best of me.

Muggy air is stupid and makes me want to move far far away.

My body likes to remind me it hates me.

Having a cyst the size of an orange is unusual.

Having a cyst that is possibly a tumor, benign or cancerous, is annoying.

Going into surgery for a cyst that burst the night before is super annoying.

Realizing I would rather endure the pain of a cyst bursting 8 times than deal with my endometriosis any day is sad.

Still having pain after cyst is gone and finding out it's because my endo is attacking my colon and bowels is frustrating.

Having to make big life decisions is overwhelming and scary.

Not understanding why an angel can't come down from Heaven and tell me what to do is confusing.  I just don't feel like it is too much to ask.  I mean...who needs free agency at a time like this anyway? 

I think a tropical island would ease my troubles right about now...


Sunday, February 2, 2014

Super Bowl Pitty Party of One


You should all probably know that I suffer from Endometriosis.  It's possibly the biggest pain in my life. Literally.  I haven't been whining about it as of late because since my last laparoscopy in July, (read about it here and here) my suffering has been down to a minimum.  It helps that I'm still on a POPS birth control which is suppose to stop my periods.  Well, it doesn't, but it has kept my cycles from exploding out of control.  The problem is...Endo grows back and well....over the last few months I've slowly felt myself falling back in the dark vortex that is abdomen pain.  

Today I was really excited about the Super Bowl.  Not because I care about the game, but because I like food.  Especially Super Bowl food.  We were even going to have homemade pizza by the best pizza maker ever.  
My abdomen decided to turn on me like it has so many times before.  I went from "yay, pizza!" to "somebody shoot me" in no time at all.  I shall not forget the back pain and numbness running down my legs.  It's all so very grand.  I've already exceeded the safe amount of Ibuprofen one should take and it's as if my pain laughed in it's face.  I have the tough stuff, but in the last year or so it's made me super itchy and actually keeps me awake instead of asleep.  Getting rid of the pain has been worth it at times, but I don't like it.  Why did I decide against the hysterectomy again? ARG!

So here I sit...alone with my angry thoughts, watching the Super Bowl and tearing up every time a soldier comes on the screen. So many soldiers tonight.  I hope it's over before Downton Abbey because let's be honest, English drama trumps football any day in my eyes.  I really hope Gregg brings home pizza or my face will easily resemble that beautiful uterus above.  By now he knows not to mess with Hangry (Hungry Angry) Endo Lacey so I'm guessing he will.

Monday, August 26, 2013

4th Lap Around Cont...

Read the first part here.

While on POPS (progesterone only BC), I was having quite a bit of pain.  My abdomen was tender all the time, my back ached and I had no energy whatsoever.  I felt like I could sleep all day.  It didn't make me a fun wife or mom.  

By this point I was pretty fed up with it all.  I decided it was time to get real about thinking about a hysterectomy.  My doctor and I had a good conversation about it and he promised my quality of life would go up big time if I decided that path, but that it was a big decision that needed a lot of thought.  I asked many questions and felt good about his answers.  I was actually getting excited about the end result and being pain free in my abdomen.  

I started to pray earnestly about the decision to have this major surgery.  I asked anyone I could about their experience having a hysterectomy.   I searched the scriptures, Gregg and I fasted and finally we went to the temple.  By this point it had been a couple of months and I still didn't have an answer so I just knew in the temple I would receive peace about getting a hysterectomy.  I didn't...I was so uneasy and confused the whole time.  Finally, I whispered my angst to my husband and he so wisely told me that maybe that was my answer.  Maybe it just wasn't right at this time.  I knew as he said it that he was right.  It wasn't the right time.  The timing to me felt so good, but the Lord knows better than I do.  I returned home a little sad, a little confused with my future, but with an answer.  I wouldn't be having a hysterectomy quite yet.  

I had Gregg give my a Priesthood Blessing when we got home and in it he promised me I would have a hysterectomy one day and that I would know for a surety that it was the right time.  I finally felt peace about not going through with it.  I'm thankful for the knowledge that the Lord knows of my pain and my future.  

I decided to have another Laparoscopy instead.  My fourth since finding out about my endo.  I wasn't and I'm not ready to do another round of Lupron so I figured if I could clear out some junk and stay on the POPS it might help bit.  

The day of surgery I was having a lot of pain so I was ready as ever.  The surgery went great and they found quite a bit of endo.  Although I still had some pain from my incisions, my abdomen felt better than it had in months.  It didn't take long to see I made the right decision to have a Laparoscopy.  My energy was back and I felt like I could make it through work so much easier.  I'm still not sure what's in store for my future, but I'm happy I at least have a break from most of the pain I was having even if it is temporary.  Meanwhile, the POPS aren't doing that great at stopping my periods because I started a new brand for insurance purposes (dang insurance), but I'm hoping my body just needs a few months to get used to them.  

So, there you have it.  A glimpse into what it feels like to be an endo queen (my awesome term for us endo girls).  If it's TMI feel free not to read my blog.  If you can relate, feel free to share your experiences.  I'd love to hear them!



Monday, August 19, 2013

4th Lap Around

Let me just start by saying endometriosis sucks.  Okay now that I have that out there I will continue.  I have done what seems like every treatment possible for endometriosis.  Yeah, pretty sure I've done it all.  To flash back to 2010, I was on a daily birth control pill that stopped my periods so the endo wouldn't grow back so fast.  Out of the blue I started getting major migraines that mimicked mini strokes.  Not a good sign.  Long story short, I was immediately taken off the birth control containing estrogen and put on a progesterone only pill.  Also known as POPS or pills that women take during breast feeding.  Oh and can I mention I had a quite large hole in my heart.  You can learn more about it here  

Two months later we were picked to be parents by a wonderful women who will forever be our angel.  Ems was born and we were shiny new happy parents.  At that point my abdomen was not so happy.  The pill was just not working so I went in to my doctor and had a long tearful, okay bawling talk.  He is the sweetest doctor, but he made it very clear, I NEEDED to get pregnant.  Meaning, more infertility fun for my husband and I.  But, my daughter is only four months old I blubbered out.  What really scared me wasn't the prospect that my kids would be close together, it was that I was tired.  TIRED of infertility.  I just wanted to enjoy my life as it was at the time. 

I went on Lupron (a drug that shrinks endo) and had my third laparoscopy to give us the best chances to get pregnant.  After what felt like a thousand months of infertility treatments, we came out the other side battered, egos bruised, and not pregnant.  My periods were becoming unbearable and after a particular HORRIBLE cycle I decided I could not handle them anymore.  I went back on a birth control with both estrogen and progesterone.  My heart had been fixed so my doctor figured I'd be okay to go back on the stronger birth control.  

He was wrong.  About five or so months later I got a migraine.  I hadn't had one since my heart surgery.  Once I started feeling better from that one, I immediately got the aura (flashes of light) and went into another one.  After having six in three days I called my doctor and he had me go off the birth control at once.  He said I will NEVER go on that type of birth control again.  The risk of stroke would be too high.  Estrogen and migraines just don't go together.  So then came the question of what to do next.  I know what you women are thinking.  Why not use an IUD?   IUDs are not an option because they don't block the right hormones that stop endo from growing.  

So options are as follows...

-Go back on POPS. Which is pretty temporary and doesn't stop the pain completely
-Do a round of Lupron.  Which makes me super crazy and mean and also is a temporary fix
-Do another Laparoscopy.  Also temporary, but can ease some of the pain.  Surgery is never fun though.
-The ulimate, Hysterectomy.  Permanent fix, but it's just that...permanent.  I wouldn't have to worry about my endo ever again though and after having pain every day for years, it was sounding better and better.  

I decided to go back on POPS while I thought and prayed about what answer would be best.

To not make this whine fest eight pages long I will continue in another post.