This isn't an
exciting fun post, especially for you guys. This is an informative post
if you will about the life of someone who has endometriosis.
Some parts may be TMI
for some, but I'm here to set the record straight. I'd encourage you to stop
reading here if you're not in for that. Trust me you can get through the first part....all that scientific mumbo jumbo.
The
mayo clinic gives this definition for endometriosis:
In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.
Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.”
That last
sentence there, “Fortunately, effective treatments are available.”
Umm I must have
missed those effective treatments in the 6 years I have been diagnosed with
this disease…who knows how long I’ve actually had it.
By effective
treatments do they mean surgery to ‘rid’ the disease until it decides to rear
its ugly head again? Surgery is always a fun, cheap option (sarcasm font). Because
you see there is no cure for this, no magic pill. Yes, there are different
things such as birth control pills that can help you have a better way of life.
But once you have this disease there is no getting rid of it for good. It may
stay dormant for a period of time, which happened to me; praise Jesus for that
break! You can’t even determine you have this disease unless you have exploratory
surgery; which I had back in 2008.
Here is
another definition from endometriosisassn.org:
“Endometriosis
is a painful, chronic disease that affects at least 6.3 million women and girls
in the U.S., 1 million in Canada, and millions more worldwide. It occurs when
tissue like that which lines the uterus (tissue called the endometrium) is
found outside the uterus.This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions.”
Now I tried to
shorten these definitions aka take out names of lady parts and such that might
be just a little much… Man I feel like I should be embarrassed to write/post
this blog, but the girl writing these words right now has been in pain for FOUR
weeks straight, with every week getting worse so forgive me if I’m not embarrassed
or concerned about you reading this and thinking it’s not lady like.
Through the
years with some of my ailments I have had, mainly cervical cancer and endo I
have realized how uneducated some people are about certain things. They will
have an idea in their head of what those things bring or are about, or my
favorite; they will google it and become a specialist on the matter. We all
know everything on the internet is 100% true, am I right!? You don’t even want
me to get started on google and cervical cancer. You can read all the internet
has to offer on that, read discussion boards, etc. but every situation is
different. Almost all cases of cervical cancer are from HPV; there are very few
cases of having cervical cancer and not getting it from HPV…my doctor has said
around 10%. Well, guess what!? I would not be me if I did not fall in a very
rare category now would I?? I am indeed one of those cases of having cervical
cancer, but not having HPV. The type I had can come out of nowhere and fast unlike 'normal' cervical cancer, which means I have to keep watch on it very often...it's a good thing I like my doctor ;)
Now to what
bothers me about people’s thoughts on endometriosis: It’s just a bad period, it
only hurts while you’re on your period, tons of people have it; it’s not that
big of a deal, you don’t look sick.
Lawd. I can assure
you I have not been on my cycle for 4 weeks now. Yes, a cycle is what can trigger
the whole endo process but when an endo flare up occurs you are not on your
cycle the WHOLE time. It’s not just a girl being a girl ‘that time of the month’.
Rolling my eyes right now, for real.
So that’s just a
few background facts for you. Now onto the life of someone who has endo. Aka
the last four weeks in my shoes.
You never know
when you will have a flare up. I can’t tell you how many times my friends have
heard me say ‘my ovaries hurt’ or ‘my insides hurt’. As gross as that sounds it
really is an accurate way of explaining it…not just one part of your body
hurts, your whole pelvic region is in pain. It’s hard to explain this pain,
someone good with words might be better at it. For me a mild pain or when you
feel a flare up coming on could be when ‘my ovaries hurt’; this throbbing pain where
you eventually feel like your ovaries are so swollen they may explode with any
sudden movement, when you stand up from sitting down and it feels like someone
stabbed you and you bend over unable to walk. When one of my flare ups is in
full swing I usually refer to that as ‘my insides hurt’. It’s almost like a
heartbeat in your pelvic region and each time it ‘beats’ it feels like someone
has both hands squeezing your insides, like you are about to explode. And this continues
ALL day long. The pain is so intense at times you just want to sit in the floor
and cry. Even when you medicate with Toradol, Lortab, Percocet, whatever your
doctor gives you the pain is always there…not near as intense with some of
those medicines, but you just always feel it…if that makes sense. The pain gets
so intense that it will go into my legs and back. I will lay there and start
thinking ‘Hmm maybe this isn’t the endo, maybe I have a tumor pressing against
my leg’…I’m telling you the pain is that bad sometimes there is no telling what
you mind can come up with. Your body is SO tired all you can think about doing
when you’re not in bed is getting in bed and going to sleep, but when you are
finally back in bed you just toss and turn unable to sleep because you can’t
get comfortable.
This flare up
has been one of my worst or I most definitely would not be posting this for the
world to see. I never know when I start getting these feelings how long they
will last; just the week before my cycle, during my cycle, or maybe just the
week after my cycle. Or maybe all of the above plus more!?
This is one of
the first times I’ve actually gotten to see my doctor during all the
pain. It’s usually once it has gotten better with scheduling of appointments
and not knowing how I will feel one day to the next. So I came baring a list of
all questions endo, I came in pain, I came mentally and physically drained. For
weeks now I have gotten off work and went home straight to bed, ya’ll I get off
work at 4:30…this is not ok.
After my ‘normal’
(because I’m so normal) 6 month check-up he took me to his office to discuss endo
and my list. I feel like the poor man thought he was back in medical school. We
had medical books pulled out the little pharmaceutical book (not sure what you
medical ppl calls those) pulled out. I was on a hunt for answers and relief. I
had brought names of medicines I had researched…anything. This is why I LOVE my
doctor and am ecstatic that I’m back in his care. He sat there with me and
heard my plea, he assured me he believed I was in pain, and he checked
everything possible hoping that I had researched something new that he had not
heard of yet.
Sadly that was
not the case. There is no new magic pill out there for endo. Every medicine I
had brought to him I was already on just in a different form. We went over what
few options I have out there which are very little for someone my age still
wanting to have kids. Let me just tell you if I had kids or even just ONE kid
right now there is a solution to my problem and I’d do it no questions asked,
but that is not the case or solution for me at the moment.
So basically my
solution is to continue with medicines I’m already on and to medicate with pain
medicines during these flare ups. Remembering the pain medicines do not make
the pain go away all together, they just dull it.
Even though
these last few weeks have been absolutely awful pain wise, I am still one of
the lucky ones (in my eyes) when it comes to having endo. Mine laid dormant for
a few years and I can count on one hand how many flare ups I have a year
(thanks to medication my doctor has me on). Some women are not that lucky and
because of these reasons when I do have a bout that is this difficult I don’t
go running begging for surgery. I don’t want to do something that serious and
costly when it only happens to me a few times a year. One reason I’ve never
really talked or complained about endometriosis is because it is something that
happens to me so little considering what others go through, but with this awful
flare up I’m reminded how bad this disease is, how little information is out there
about it, how stupid you feel for letting an ‘invisible’ disease affect your
way of life.
March is national
Endometriosis Awareness Month and you better believe I’ll be putting a voice
out there come this March about this disease; this chronic illness. Even if it
does only affect my life a few times a year, during those times it is awful and
no one should have to go through it. Especially the unlucky ones who have it so
much worse, I can’t even imagine.
So the next time
I miss work because the pain is so bad I can barely move, the next time I can’t
make a trip that I’ve planned, the next time I’m in bed at 5:00PM don’t be so
quickly to judge. By no means do I want you to feel sorry for me, I just want
you to understand. Also, understand that I am not a druggie, those drugs are
just the only thing keeping me going at that given time.
That my friends
is the low down on Endo. If you have any mind blowing news that me and my doctor
have not heard of, please share. I’m up for anything at this point. Also, my
doctor and I did discuss foods to eat/not eat that might help give some relief.
So please do not post foods for me no to eat, which is basically everything…. In
case there are sufferers of this disease reading and curious, no caffeine and soy are two
that he has seen results from…all the others he said you just have to play with
and see how it works with your body.
Through all my
research on endo I’ve come across some things that make me laugh…enjoy! Also you should instagram search #endometriosis....if you have it you'll understand and love it. ha!
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| But really though...... |
-Casey
