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.  

The Phone Call

Life was about to get busy. We were really focused on Em and were having a lot of evaluations and appointments for her. Almost every day I didn't work we had some type of appointment.  Plus, she demanded our full attention at all times.  Gregg was excepted into an amazing MBA program which we felt very blessed about, but I knew I would be alone most days from sunup to sundown.  Scary thought.

Let's just say at this point I was content with our one child. Not because I didn't want more kids, but because I felt so overwhelmed.  We were just starting to get professional help with Em and didn't know she had ADHD.  Plus, we were drained after countless infertility tries and going back and forth with starting the adoption process again. We decided to put our next child on the back burner.  With Gregg going back to school and Em needing a lot of attention it seemed like the best decision.  I really felt like we had a boy coming, but after trying so hard to get him here I told The Lord I did my part and the rest was up to him.  (Never worked for me before)  

Out the blue, a week before Easter, I saw Em's birth aunt's phone number appear on my phone screen.  I always get excited to talk to Em's birth family so I quickly answered.  She shared with us that M (Mem's birthmom) was pregnant again and wondered our feelings about her placing the baby with us again. I was both caught off guard and yet wasn't. It was like I was waiting for a phone call like this. Not necessarily from M, but from someone.  It just made it even better that it was about M!  I told J (M's sister) that we would love to adopt again. I knew Gregg would too so I didn't even have to talk to him. J told me to expect a phone call from M soon so we could talk about it.  After we hung up I text Gregg to come home soon because I had BIG BIG news. He had no clue what I was talking about. :)  I couldn't hold it in any longer.  I called him and shared what had just happened. He was shocked, excited, and down right speechless. Meanwhile, M's number popped up on my screen so I hung up with Gregg and answered her phone call. 

M confirmed what J had told me. She told me she was unexpectedly pregnant again and had no idea what to do. Her mom mentioned that we wanted to adopt another baby (we told her mom last time we saw them we were starting the adoption process again) and immediately a peace came over her. She knew that was exactly what she wanted to do and her family was happy with her decision as well. She thanked us for raising Em like we have and giving her the opportunities we have.  That totally made my year.  To get a compliment like that from the woman who chose us to parent her child was so amazing.

The next week was so exciting.  We had amazing news and wanted to shout it from the roof tops.  We were like the character from SNL that couldn't keep a secret and had to run through windows to keep her mouth shut.

With Easter being that weekend, we found candy binkis that we slipped pieces of paper in that said, "you're going to have a new cousin October 15, 2013."  Then we put that into a big egg and wrote all of our nieces and nephews names on the outside.  Gregg's family was completely caught off guard and there were many tears of joy.  With my family, we did an Easter egg hunt and the kids knew not to open the egg with their name on it until we were all together.  Once they opened it my family started to question who was pregnant.  I think I was the last on their mind!  Finally, the accusation came to me and I explained that I was not pregnant, but that Em would be getting a biological sibling.  They were ecstatic and we had some more tears.  Gregg and I were so happy that we got to surprise everyone in a fun way.  We never thought we would be able to so we loved every minute of it!

Sorry the lighting is so bad!

I can't even express how truly blessed we are to have an open relationship with M and her family.  If we didn't, it would be very likely we would not have crossed M's mind.  Because she has been a part of our lives, she has been able to see Em grow and know she made the right decision for her.  Plus, she knows we keep our promises because we have with Em.  If we didn't have visits with M's family, her mom would never have a clue we wanted to adopt or have more children at all and wouldn't have been so quick to tell M our plans.  We are so thankful for the angel M has been in our lives!

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!