When I was eleven years old, I started my period. I never knew any different. I had horrible cramps and would double over
in pain from it. My periods would last 5
to 7 days and I would bleed through super pads and super tampons in an hour. I thought this was normal. I never knew anything different. My parents took me to the doctors and they
put me on birth control at 14 to control the ovarian cysts, periods and
cramps. I don’t remember if it ever
help, but I am pretty sure it never really did much except control the cysts. There were times that I would crawl across
the floor to get the Midol to help relieve some sort of pain. My mom never believed me it was that
bad. And there were times she would even
laugh because she thought I was being so dramatic. Her periods weren’t that bad so she had no
concept of how bad mine were and thought I was exaggerating. It seems a lot of people have this same
story. If you have never experienced
this then you have no concept of how bad this is. Doctors had no clue what to do and just assumed
this is just how my periods were. As the years went on doctors would tell me it
isn’t that bad and just to take birth control. I would rather give birth than
have these period cramps, that isn’t normal.
So after
years of dealing with this pain, having three babies (yes I am one of the lucky
ones), we fast forward to me being 29 years old. At this point I have been dealing with this
for 17 years!!!! In March of 2011, I was
hospitalized for pain. At the time the
doctors told me I had PID. I was pumped
full of antibiotics. The pain lasted for
weeks. I had not insurance so I was
going to Planned Parenthood for them to treat me (aside from being
hospitalized). Looking back I am pretty sure I never had PID,
maybe I did, but that was a full blown endometriosis flare. Finally, when I had my post hospital check up
with PP, the nurse practitioner said “Have you ever heard of endometriosis? I am pretty sure you have it.” I ran home to look it up, YES THAT’S WHAT
THIS IS!!! Finally, I had some sort of
answer for the way I had been feeling all these years. But guess what? I had no insurance. There was nothing PP could do for me except
putting me on continuous birth control so I never had a period. I had to wait three more years to finally
have to be able to see a doctor to deal with this. The pain was horrific, at this point the pain
had increased to the point that I was never out of pain, it no longer came in
cycles, it was just constant pain!
In
January of 2014, I was lucky enough to walk into a gynecologist office that
believed my pain. I explained my symptoms. I had horrid constant pain, excruciating pain
with intercourse, pain standing, sitting or lying down, pain with anything I did,
stabbing pain in my pelvis and ovary. I
was never relieved of pain, nothing I did helped. She looked at me and said I think you have
endometriosis, I want to do surgery. She
explained she would go in and do exploratory surgery and if she found
endometriosis she would burn it out. Ok,
sure do surgery make this better. Little
did I know ablation, burning out the endometriosis, was the worst thing we
could do.
After getting
the insurance approvals and on the surgery schedule, late March I finally had
my surgery. I was a basket case the
night before. I had been told my whole
life this wasn’t real and this was how it was, what if she found nothing?!!!! What if it all was in my head?! Well, that wasn’t true! I was covered in endometriosis. She found it on all over my uterus and ovaries
and even on my liver and other places. She burned off what she could and closed
me up. She said it was the worst
endometriosis she had seen and Sweet, I
have endometriosis and now I am done with this.
Little did I know that wasn’t the case!
Come to find out endometriosis is like a weed. If you burn it off, it almost spreads like wildfire
and implants “seeds” everywhere in your abdomen.
The pain
subsided a little but never went away, sure it went down a little but I was
still in pain after the surgery. I went
back into her and she said Lupron is the way to go. It puts you into menopause and stops the endo
from growing, it’s the best bet for endo. I did it.
I took the shot in June of that year.
The hot flashes started, the hair falling out started, and the pain
increased. Little did I know I would
later call this drug the Devil’s drug.
Being on Lupron was hell. I had no
support system that had ever dealt with endometriosis and believed what the
doctor told me. I never looked up Lupron. It is a chemotherapy drug. If I had known then what I know now, I wouldn’t
get within 100 feet of that shot!
So Lupron
failed, birth control pills failed, so hysterectomy is all I can do. Once again no research on my part!!! What is my problem? I have learned my lesson now, I research
everything and trust no words coming out of doctor’s mouths!!!!! Well the nice part is I finally got hooked up
with some endo support groups. Low and
behold there is a doctor here in Oregon who knows more about endo then my
normal gynecologist so I switched doctors.
The new doctor agreed that I needed a hysterectomy because she was
pretty sure I had adenomyosis also! We
scheduled that surgery for December of 2014.
The emotions of the ups and downs of this year was horrible. Between the pain, failing treatments and now
having a hysterectomy presented to me, it
was horrible. Sure I was done having
kids but for someone to take that option away from me, I wasn’t ready for
it! But I went through with the surgery.
The doctor scheduled the surgery
for 2 hours, I had just had the endo cleaned out, there shouldn’t be too much
so it was basically a little clean-up and a hysterectomy. Boy were we wrong!!! I was in surgery for four hours. I was totally covered in endometriosis. I had it on my bladder, which got
reconstructed, my ovary was attached to my colon, my left ovary was totally
encased in endo, it was on my diaphragm, ligaments, tendons, nerves, cul de sac,
to name a few. It was everywhere. Those were the big areas. She excised (cut out) what she could but some
areas were so delicate that she had to ablate them. Dammit, ablation again. I was diagnosed with Stage IV endometriosis,
adenomyosis and fibroids in and on my uterus.
Recovery was hell. It was the longest recovery ever. I kept reminding myself I had basically three
surgeries all in one, bladder reconstruction, hysterectomy and excision of endo. After three months of recovery I realized
that I was healed and this pain wasn’t going away. I told the doctor I am pretty sure my body
hates me and that I was still in pain.
She told me I would be lucky if my pain ever went below a three on the
pain scale in my life. Woah that is not what
I was expecting. I went into that
surgery with the expectation that this was going to be it. Excision is the way to go. It is the best chance of relief of
endometriosis. We took out the uterus
which was so much pain from the adeno and the fibroids, I should be fine now,
at the very least it should have bought me a few pain free years. The emotions that happened for months after
that were a roller coaster. I thank God
every day for my kids and husband because if it weren’t for them I wouldn’t be
here writing this. The depression and
desperation were deep. I went through all
the steps of grieving. I was grieving
the loss of a life that I thought I would have.
The loss of the idea of the mom I wanted to be. The loss of the idea of the wife I wanted to
be and of course the person I wanted to be.
Since that last surgery I have been
to countless number of doctors, I experience numbness and tingling in my extremities,
uterus pain, pain with sex, pain with bowels and urinating, pain sneezing, hot
flashes, crazy all over the place emotions, so much more!!!! I have been diagnosed with fibromyalgia,
probably thanks to Lupron. I have been to
more doctor appointments than I ever have in my life. I have seen more specialists than I care to
admit. And I have more specialty
appointments coming up in the next few months.
I have had to quit even working from home, I couldn’t handle that. I cancel plans and stay at home a lot. If you know me, you know that isn’t me, I
like to be anywhere but home, I like to go go go. I can’t!
I have had to accept snuggling my kids is better than taking them places. I have learned to decide that today’s
activities are worth doing and scheduling in time to recover or decide today’s activities
aren’t worth the recovery and cancel it.
I have learned to live by the spoon theory. (If you haven’t read it,
google it, it is worth it!) I have
learned that I am teaching my kids to be sympathetic, self-sufficient,
compassionate, empathetic, flexible, and patient. Most kids will never get these lessons, heck
most adults don’t understand these things, but my kids are professional at
it!
The journey continues and will be
full of ups and downs. It will be emotional
and painful. It will be full of
questions and hopefully some answers.
Until we can get a cure for this we will have to raise awareness and
hope that doctors become more empathetic about our pain. We are not drug seekers, exaggerators or
crazy in our head. This is real. This is our daily life. It is our daily life. There are people out there that understand. Find a support group of people to surround yourself
with. Other people that are going
through this is invaluable, their knowledge and experience is something you can’t
find with your best friend. Yes a
supportive family and friends are great but there is nothing like some that says
I know what you are feeling.
Endometriosis has robbed me of the
life I thought I would have. But I
refuse to let it rob my daughters of lives, if heaven forbid they end up with
this horrid disease also. This is why we
need awareness and research. This
disease affects more women then breast cancer does, 10% of women are affected
by this disease. Someone said if you
know 10 women you know endometriosis.
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