Surgery Made Real

Surgery Made Real may sound like a funny title 3 weeks after I really had surgery.  But I had no clue how a post op appointment could make the surgery even more real.  I mean think about it, I took a nice nap and then woke up.  My husband and family sat in the waiting room feeling like those 4 hours took forever, not me!!!

I knew I had endom it was diagnosed 8 months ago, this surgery wasn't answering that question.  We were just going in for a quick 2 maybe 3 hour surgery to clean more out and do a hysterectomy.  Well 4 hours later I was done.

Fast forward now to the post op appt.  I was super anxious and freaked out.  I had to clue what the pathology report would say, was I supposed to be in pain at this point, and what is our next step of action.  First thing, all pathology reports said ENDOMETRIOSIS.  Good I guess, considering the alternative!  The part that shocked Big J and I was that it was EVERYWHERE!!!  I had no clue it was so widespread.  Diaphragm, behind my rectum, ligaments, both ovaries, abdomen walls, etc.  The worst of it was my bladder.  The dr had to cut the spot out so deep she had to sew the muscles inside my bladder back together and then check for a leak.  There was brown and black endo everywhere!!!  My left side was hit the hardest.  That is where all my pain was so that isn't huge news. But I can now lay on my right side and not feel like my left ovary is pulling down because of the weight.  Who knows if that is what was happening but that is what it felt like!!! Next shocker, I had fibroids!  WHAT?!!!  I have had ultrasounds never show anything and just had surgery, I don't get it!  My sister C just went thru that I never though I was there too!!! Third, I had adenomyosis.  That isn't much of a shock because I have the endo so that adeno just goes with it.    Last shocker!!!!  About 2 days before my appt I noticed a large lump under one of my incisions, so I asked her.  After going back and forth, it may be a hernia.  Who knows if it is or not but I have to go for a CT scan next week to check!  UMMM  NO!!!!  I didn't sign up for that one!

So needless to say I was in a state of shock leaving the Dr's office the other day, that is the part where the surgery was made real for me.  I didn't think it was going to be that BAD of endo being that I just had surgery 8 months before.  That was crazy.  I know there are women who have it was worst than I do but holy cow.  I am just so glad I have a specialist fighting this with me.

The recovery from all this will be about 3 months, so I have to stay down still some but I can get up and do things if I take it easy.  If you know me I am not one to take it easy!!!  Well, I guess I have to try!

My battle thru the years- My Story

When I was a teenager I had horribly painful periods.  I would double over in pain almost every month.  I was put on birth control pills at 14 years old.  NO ONE ever thought anything more.  EXTREMELY PAINFUL PERIODS ARE NOT NORMAL!!!!  I would hide in the bathroom in High School doubled over due to cramps.  Fast forward now to 29 years old.  By this point I have had 3 pregnancies and 2 miscarriages.  I have also thought my children were miracles but now I know what a blessing they are and how blessed I am to have them.  At 29 years old I was hospitalized for 4 days due to what the doctors thought was PID (Pelvic Inflammatory Disease).  I was pumped full of antibiotics, it never helped the pain.  DUH!!!  I was having a flare up of the endo!!!  I am not sure at this point it really was PID, maybe it was but I really doubt it!  I continued to go to OB/GYNs and none of them thought anything of my symptoms.  Oh well I guess I am doomed to a life of this.  

Finally, the beginning of 2014, my BFF J suggested I go see her gynecologist.  I did.  FINALLY A DOCTOR BELIEVED ME!!!  Dr. J (wow I have a lot of J's in my life lol) suspected it was Endo immediately.   She scheduled a surgery as fast as she could and got me in there in March of 2014.  Soon as she got eyes on my guts she knew it was Endo.  She did an ablation surgery, where the spots of Endo is burned off.  The Endo covered my left ovary, bladder (where she took a biopsy) and abdominal walls.  Phew this was going to be over!!!  After recovery from surgery, I was pain free!!  Thank God!  I was going to finally feel better.  HAHAHA, YA RIGHT!  I wasn't that lucky!  Within a month of the surgery I was back in pain.  

In May 2014, without researching anything because I was just reaching for anything to help, I agreed to try Lupron.  Within 3 weeks, I felt better again!  This medicine is supposed to put the woman into a fake menopause.  Ya I had hot flashes, night sweats, fatigue, nausea etc. but that was all better than the pain I was feeling.  Then by 10 weeks after the shot the pain started to come back.  So of course Dr. J said I was a perfect candidate for the second shot of this.  12 weeks I did the second shot.  I started losing my hair by clumps, thank goodness I have a ton of hair.  I looked up the medicine, this is a chemotherpy drug!!!!  It is used to treat prostate cancer and they found the side effects can help the Endo.  CRAP, what have I done to my body!!!!!!  I never received any relief of pain from the second shot.  Dr J suggested we do a full hysterectomy, she reassured me her patients all have had relief from the pain and the Endo doesn't come back.  So this time I got smart RESEARCH STUPID!!!  There is no way the Doctor can tell you that.  THERE IS NO CURE FOR ENDO!!!  Hysterectomies DON'T stop the Endo!!!  So I started becoming uncomfortable with Dr. J doing my surgery.  

I researched Endo support groups!  I came across Powerful Endo Women on Facebook and met my new amazing friend and support S.  Well S informed me that there are 6 specialists in the United States and us here in Portland Metro happen to be about 45 mins from one!!!  I was really reluctant at first, I just wanted to have this surgery and be done with it.  What if Dr. P wasn't going to do my surgery?  What if the pain I felt wasn't what we thought this whole time?  Was I going to have to start all over?  So after hem-ing and ha-ing for a few weeks I went to see Dr. P.  HOLY COW SHE IS AMAZING!!!  

Dr. P agreed I needed to be in surgery and by Dec. 2 I was in surgery with her.  A robot and Dr. P did my surgery.  Crazy thoughts letting a robot inside you.  Dr. P does an excision surgery, where the spots of Endo is cut out.  This stops the regrowth of the Endo in those spots and does not let the Endo spread like a dandelion all over the abdomen like the ablation surgery does.  We also decided to more than likely take out the left ovary due to the majority of my paining stemming from there and to take out everything but the right ovary.  My 2 to 3 hour surgery turned into 4 hours.  There were way more spots of Endo that she thought.  I haven't gone in for my post op yet, that is in 2 more days but from what we know there was Endo covering the left ovary, abdomen, behind the rectum, a spot on the diaphragm, some on the right ovary and on the uterus.  We will see what else she has to say when we meet with her.  

The recovery has sucked.  But in the first 2 weeks Little J got the stomach flu, I then got it, then KZ got croup, and I have some nerve damage from the surgery.  Oh well such is the life of a mom, right?  Things are better now that I am 3 weeks post op tomorrow.  It's slow but there is improvements.  

This post was really long, but I had to catch you up on 20 years!!!  LOL  

A Little About Me!!!

First off, I want to thank you for taking the time to read my blog!!!  It makes me feel special to see that people would want to hear my story!!!  I am a wife, mom of 3 munchkins, KT, Little J and KZ, and WAHM that is a Independent Director with The Pampered Chef.  My husband, Big J (not his real name but the world doesn't need to know everything, right? LOL) is an amazing Chef and loves his career!!!  I love everything we have become as our little family has grown, expanded and matured!  I can't wait to see what the future holds for all of us!!  Every perfect picture has to have a downside to it, right?  This is where the evil disease comes into play!

I have Endometriosis!  Endo is a disease where the endometrial tissues releases into the abdominal cavity, this tissue is supposed to be released into your uterus.  The problem starts because this tissue then begins to act as if it should in your uterus but has no where to escape and is trapped in your abdomen.  It causes mild to severe pain every month!  It causes scars, adhesions and even can bind organs together!  Fertility issues even may arise.  1 in 10 women suffer from this, that is a lot of people for the amount of awareness out there!  Autism was 1 in 10 a few years ago and EVERBODY knew about that!  It is time to make a difference out there and not let this topic be so taboo!   This is a type of disease that the longer you let it attack you the more damage it does internally and mentally.  Yes it deals with the VAGINA but it affects so much more!  Endo not only takes a toll on the woman's body but it also can affect relationships, mental health and self worth.