I transferred this post from my crochet blog. I wanted to make sure that all of my endometriosis posts were together.
The Million March for Endometriois is a cause that is very near and
dear to me. I am a longtime sufferer of endometriosis and recently
diagnosed with adenomyosis. The march has been set up to bring more
awareness to this illness and the debilitating pain and infertility that
it can cause. There are not enough physicians that truly understand
this problem. There are many women that have a similar story to mine and
it is not the way that women should be made to live.(Story will be
below. Please note that the story is graphic, with not so pleasant
information in it.)
I am making Endometriosis Awareness
Ribbon Scarves to show my support for the cause. The scarves are the
official attire for the march! I have spoken with a coordinator of the
event and we are going to paint Washington DC YELLOW ! There are many objectives for this march, all of which NEED to be accomplished.
Picture 1 is acrylic. Picture 2 is the light weight 100% Cotton. Picture 3 is a thicker warmer 100% Cotton.
Endometriosis
is an illness that causes endometrial cells to grow outside of the
uterus, which it is still unknown why. When those cells grow, they
attach to other organs in the body. When it is that time of the month,
all the cells react as though they are inside of the uterus, and can
cause significant pain and complications with normal bodily functions.
My Story:
I
became a "woman" when I was 13 years of age. From the very start, I had
severe pain associated with my monthly. I missed 2-3 days of school
every month. I was lucky to have a doctor that understood that I was not
making up the pain and he wrote me a note for school, so that I did not
get into trouble for missing so much school. My school was very
understanding and did not reprimand me for missing school. It wasn't
like I was enjoying myself, or running around having a good time. I was
in the bathroom, laying on the floor, writhing and crying out in pain. I
chose to stay in the bathroom because I would go through bouts of
diarrhea and vomiting, along with extremely heavy bleeding. It was a
wonderful thing to go through when I was supposed to be a
child/teenager.
I ended up going to the hospital about 7 times in
one year when I was 15-16. At that time I lived somewhere else and had
doctor after doctor tell me that they did not know what was wrong with
me. I was essentially hemorrhaging for 2 weeks at a time and would get a
break for 2 whole days and then it would start again. I came back to
the doctor that I had that was understanding and he told me that he
suspected Endometriosis and put me on the DepoProvera shot, after trying
many other Birth Control Pills to help with the symptoms that I
suffered from. He said that it would help to maintain the illness and
keep it from growing. (WRONG)
Fast forward to 2004, The pain had
gotten so bad and the Depo Shots were no longer effective. The shots
were supposed to be given every ninety days, and I was having to get
them every sixty and I was still having a monthly, which hadn't happened
for the many years I had taken it. I found a really good female Doctor
at Baylor in Dallas. She was kind and explained things in a familiar and
funny way. For instance, I had multiple cysts on my ovaries and she
explained to me what my ovary SHOULD look like on the sonogram and what
it DID look like. "You ovary is supposed to look like a chocolate chip
cookie, with more cookie than chip. You have WAAAAAY more chip that you
do cookie." LOL That made sense to me and it made me laugh, which is a
hard thing to do when you are in so much pain. She ended up doing a lap
surgery and found that I was a Stage 4 Endo sufferer. She said that they
found it on every organ in my abdomen. As good as the doctor was, she
did not have the knowledge to remove the endometriosis completely, and
therefore made it worse for me in the long run.
After that
surgery, I had no funds to keep going to the doctor, as now I had a pre
existing condition. I was unable to acquire ins that would cover my
treatment, so I lived in agony until 2013. By this time, I had had a
miscarriage (April 2007), and had not been to the doctor since 2004, so
no pre existing. My husband and I had been trying to get pregnant since
our miscarriage, with no success. The pain and complications had gotten
so severe that I was ready to shoot myself. Dying would be so much
easier than going through the pain up to 2 times a month. Mind you, the
pain is not only when I have my monthly visitor. It lasted for weeks. It
messed up my bowels and caused pain with marital "fun", which wasn't so
fun. I would sit in the living room and cry, and run to the bathroom
and cry, puke, and be on the toilet. Imagine you are on the toilet with
diarrhea and you have a waste basket in front of you because you are
vomiting too. Sounds fun right? Well, add being in the worst pain that
you can imagine. After I would get off of my monthly, I would get
extremely constipated and then out of nowhere would have to run to
bathroom with diarrhea (another wonderful side affect of Endo)
I
was able to get on my husband's medical ins through his job at the
beginning of this year. We had finally paid off some of our large bills
and were able to afford the premiums. I did a Google search for a gyno
that specialized in treating endometriosis. It brought up several names,
but only one woman. (I prefer women because I was unfortunately raped
as a child, and feel uncomfortable with men doctors) I made an
appointment and went to see her. I described my situation and all of the
complications that I was having. I even told her that I was to the
point of wanting to die because the pain was so unbearable. She looked
at me and told me that I was "normal", having cramps like most women,
and sent me home with a years worth of Aleve. Yeah, ALEVE. I walked out
of her office furious. My husband was even more upset than me. He knew
that what I was going through was not "normal". He has a mother and 2
sisters, and he had never seen anyone in agony the way that I was. I
joined a support group on Facebook, because I knew that I was NOT
NORMAL, and was referred to Dr Dulemba. He is a real Specialist that
treats only women who have Endo and the complications that results from
having endo. I made an appointment with him and saw him at the end of
March. His sonographer did a sonogram and found a endometrial mass on
one of my ovarian tubes and saw that my ovaries were not moving, meaning
they were adhered to something else in my abdomen. We set up surgery
for April 3rd and he found that I was far from normal. On the post op
report it is said that my anatomy was unidentifiable due to every organ
in my abdomen was adhered together and they couldn't tell one organ from
another. Dr Dulemba was given permission to take pictures to use as a
teaching tool. He said that when he got in there, it was so much worse
than he had originally thought, that he did not have time to take
pictures. He was more focused on getting me ":fixed" than anything. He
also told me that there is a point system that they use to determine
what stage of endometriosis you have. You reach a Stage 4 at 40 points
and he quit counting at 72. He found that I have Adenomyosis, which
happens when the endometriosis penetrates the uterine muscle. The only
way to treat the adeno is to have a hysterectomy. There is no cure for
the endometriosis. Dr Dulemba excised the endo, which is the best
treatment available for this illness right now. He disconnected all of
my organs and patched me back up. He attempted to keep the adhesions
from coming back, but he suspects that some of them have returned.
Needless
to say, I am now at a point where I am going to have to fight with the
insurance company, United Health Care, because the hospital that my In
Network doctor uses, is Out Of Network. The hospital bill is over
$177,000 and UHC is only willing to pay a little over $34,000. So now, I
not only fight my body and the pain, I have to fight the insurance
company. I HAD to have this surgery. It wasn't something that was an
elective surgery. I need another surgery because I am having major
issues with pain and trouble with severe constipation. I am not able to
have the surgery because I owe the hospital over $140,000 and the ins
has informed me that I am close to my yearly max, though they aren't
paying that out.
I am considering a hysterectomy because I have no
quality of life. I am not able to do normal, everyday things. I can't
do dishes, wash laundry, vacuum, or play with my dogs. I can't have a
marital relationship with my husband, so can't get pregnant, even if it
were possible.
No one should have to deal with
this.This is torture. I am being punished for being ill, for getting the
necessary treatment, and for wanting to be a productive member of
society. I would love to be able to go to the lake with friends and
family, to Six Flags or Hurricane Harbor, or even go outside and help
with yard work. I spend my days inside my house, hiding from the world.
How is it fair? I know that life isn't fair, but this is beyond unfair.
There is no reason that women should have to live in fear and agony. My
hope is that this march will bring more awareness and many more changes
to the medical community and how they treat us. We are passed over and
pushed aside as though we don't matter. Some of us are no better than
some cancer patients. No we won't die from Endometriosis, but we can die
from some of the complications. Some of us, like me, suffer from severe
pain. More women suffer from endo than are suffering from Breast Cancer
(my grandmother is a survivor, so I am not trying to take anything away
from it's importance), yet little attention and/or knowledge is focused
on this illness. I think it is time there is and there are atleast a
million other women that agree with me.
If you are
interested in going to this event, please visit
http://www.millionwomanmarch2014.org/ to see how you can participate. If
you are planning on going, please visit my website and buy a scarf to
wear to the event. A portion of the proceeds will be donated to help.
Barbara Page is getting all of the information available to make this
scarf the Official Attire for the March for Endo 2014!
Thank
you for reading and I hope that you walk away with a little more
knowledge about Endometriosis. If you know a young lady/woman that is
suffering from painful periods, please don't think it is "normal". Pain
is your body's way of telling you that there is a problem. Don't ignore
it.
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