On October 24, 2014 I posted a blog on ‘The low down on Endo’
At that time my endometriosis had been back in full
swing for a while, but I was still ‘living with it’. That was actually the lost
post that I wrote to this date. Jump a year later to Fall of 2015, it had only
gotten worse and I finally decided to have another endo surgery. My second
surgery was on December 22, 2015. When I have this surgery there is always a
fear that goes through my head of ‘what if he doesn’t find anything at all and
it was a waste?’, ‘what if he finds something really bad?’. You never really
know what they’re going to find until you wake up after surgery.
Well, he found something alright. The endo was back and
I was covered in adhesions, I had organs attached to each other from it and
even intestines in the wrong place because of all the inflammation. When I
heard that I was so relieved. 1. The surgery wasn’t a waste and 2. I actually
had a reason for being in pain, having no energy…getting off work at 4:30 and
going straight to bed for so long. I had a reason for being that way…I wasn’t
just being a titty baby. With endo most people can’t look at you and tell you
have it or something is wrong with you and if you’re really good at putting on
a good face people may not have any clue something is wrong with you, when it’s
a struggle to even get out of bed most days.
So I had proof, evidence of why I felt and acted the way
I did. I even had some very graphic pictures of it all. In my head I would be
sore for 2 weeks, go back to work and feel great to start off this New Year. I
would actually be able to get back in the gym and would have the fresh start to
be a new me by my 30th birthday.
I can’t. I literally can’t even with how wrong the
wonderful story I had in my head was…
It took me a good 6 weeks to heal from surgery. And
probably 8-10 weeks to be back to normal.
The surgery was intensive, he had to do a lot of work while he was in there;
more than we had expected. Recovery was long. It was long and mentally
draining. If that wasn’t devastating enough I was still hurting after surgery.
It was hard to tell if it was actual endo pain or from surgery for a while. My
doctor decided it was still endo pain on my right side. That it was hidden in
the lining of my right side, ‘white endometriosis’. Because why not?? I mean really…
Our next step was to start Lupron injections. My
pharmacy insurance (Prime) was a joke during the whole process of setting this
up. It took a full month to get set up and they were awful sending me back and
forth to Prime and BlueCross. I’m living with a chronic pain, a disease that
has no cure…I’m gonna need you to get your shit (language) together. That being
said the last possible day to get my insurance worked out to start injections
it was finally solved.
I’m not even sure how to tackle this explanation.
Lupron. It is a drug that put my body into chemical menopause. At 29 I was in
full blown menopause. It has many, many side effects, there are ‘Anti-Lupron’ support
groups out there. If you take time to google it there are some people out there
that REALLY hate this drug. It is even given to men with prostate cancer. If you do not take add back hormones (I am not) you cannot take the drug no more than 3-6 months. Two
things my doctor always tried to keep me from having to do was Lupron
injections and the Depo shot, because of the side effects. But with me still
wanting to have kids one day we were now upon those options.
SIDE EFFECTS: Mild burning/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, trouble sleeping, reduced sexual interest, vaginal discomfort/dryness, vaginal bleeding, swelling of the ankles/feet, increased urination at night, or dizziness may occur.
SIDE EFFECTS: Mild burning/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, trouble sleeping, reduced sexual interest, vaginal discomfort/dryness, vaginal bleeding, swelling of the ankles/feet, increased urination at night, or dizziness may occur.
Last week I got my last Lupron injection so here is a mini
diary of my time on Lupron:
Month 1:
The side effects were very minimum. The shot hurt my
muscles/bones the first few days. The next few weeks I had headaches. But, I was
pain free for a few weeks. Pain free for the first time in months! That was
huge. After all the bad stuff I had read about this drug, I thought it was
absolutely amazing.
Month 2:
The shot gave me flu like symptoms the first few days.
My body and muscles ached. I started having hot flashes. I would go from hot to
cold. At work I had a heater on me one moment and was fanning myself the next,
but they weren't completely awful…just inconvenient. I had AWFUL headaches/migraines
for a few weeks. I had a few moments of being nauseous. My memory was shot.
Month 3:
I’m only one week into my third and last injection. And let
me just say thank God it is the last. It hit me instantly. My doctor warned me
it would be the worst, but Lawd. My whole body hurt and ached for the entire first week & a week and a half
in if I have a busy day I still come home hurting/aching. I am drained. I’m still
having nauseous moments. I am having hot flashes allll day looonngg. My brain
is gone. Like pregnancy brain there is a Lupron brain, for sure. I wouldn't say I'm mean on lupron with mood swings, but I would say I'm very blunt and when I feel like something is not worth my energy I will let you know. I’d say the
worst part of month 3 is hot flashes, joint pain, no energy & foggy brain.
So April 6, 2016…On my 30th birthday I am in
full blown menopause (temporary) and because I’m still having slight endo pain
here and there I will be put on the Depo shot in a month. A lot of people have
trouble turning 30, but turning 30 and still feeling ‘broke down’, turning 30
and knowing depo is your last hope of living pain free without a hysterectomy….bless
it, just bless it.
All that being said I’m alive, I have good days, it’s
baseball season & my Dawgs are killing it and I’m going to New Orleans this
weekend with some great friends to ring in my 30’s. Here’s hoping to the 30’s being
the new 20's and having a clean bill of health! From 24-30 cancer or
endometriosis has consumed my life it seems, and frankly I’m not about that
life.
I want to personally thank everyone who has had to put up with me these last few years of all this and especially these last 8 months (8 months straight of being in the doctors office). Thank you to the friends and family who understand and try to be knowledgeable with it all...you have no idea how much that means to me!
-Casey
