March is Endometriosis Awareness Month. I was struggling with what to blog about when
I came across the Endometriosis Awareness
Month Challenge 2020 on one of the Facebook groups I follow (Endometriosis
& Me). I’m really not a fan of all of the silly “challenges” that keep
popping up on social media. Most of them are dumb and not challenging, but I
think this one actually is a true challenge. It’s hard living with an embarrassing
and invisible disease. Unlike many other ailments, no one wants to talk about
your raging period and terrible cramps. Gross, right? But, I will talk about
it. The stigma surrounding menstruation needs to end.
Instead of posting once
per day as the challenge suggests, I will answer all the questions now—with
only few sentences each because no one wants to spend the rest of their evening
reading this blog. LOL So, here goes…
1.
My diagnosis… I’ve never bothered to ask
which stage of endometriosis I have. All I know is that it’s pretty severe and
it’s caused my infertility.
2.
Endometriosis means… that my daily life
is constantly interrupted by my period and all its side effects (which can
happen at any time, not just during that “time of the month”).
3.
Surgeries... one laparoscopy to remove
the cysts. I have pictures if you want to see!
4.
What helps me… coffee.
5.
My symptoms are… heavy flow, debilitating
cramps, really bad headaches, nausea, depression & anxiety, bloating, and
constipation.
6.
My symptoms began… pretty much as soon as
I started having periods.
7.
Medications I’ve been on… I’ve been
offered Orilissa but decided against it after researching the medication and
its side effects. I am currently taking Hydrocodone/acetaminophen for pain. Yes,
I am aware of the opioid epidemic. No, I’m not an addict.
8.
Treatments I’ve had… just the one
surgery. I haven’t been offered or considered “alternative” medicine/treatments.
9.
What I knew about endometriosis before
diagnosis… nothing. It wasn’t treated as a “real” disease until a few years
ago.
10.
Endometriosis makes me wish… I was
postmenopausal.
11.
Distractions from the pain… when I take
an FMLA day off work, I usually lay on the couch with my dogs and read or watch
television (one of the rare times that I actually watch TV!).
12.
My first symptoms… having to go home from
school because my cramps were so damn painful (I could barely walk down the
hallway without doubling over in pain and concentrating on my lessons was
completely out of the question)
13.
People that help me… I haven’t really
asked for help (as in physical aid) so I’m not sure.
14.
My pain level… funny story… after my
first ultrasound (to get a view of just how bad it was in my uterus, NOT for
pregnancy), my OB-GYN said, “Girl, you have the highest pain tolerance of anyone
I’ve ever seen. Any other girl would have come to me for treatment years ago.
How did you even handle this?” Yeah, I’m a badass.
15.
Things that make me happy when I struggle…knowing
that I’m approved for intermittent FMLA so I can stay home from work and take
it easy.
16.
Endometriosis sufferers who inspire me…
Padma Lakshmi. Brandy Higgins Lytle (owner and founder at No so Mommy… blog and online community).
17.
Something that comforts me…that
endometriosis is, for the most part, a recognized disease now. I have resources
and a community to turn to if/when I need support.
18.
My scars…one on my belly button from the laparoscopy
(it’s pretty gnarly).
19.
Other illnesses I suffer with…nothing
else that’s been officially diagnosed
20.
Why I raise awareness…women shouldn’t be embarrassed
by their periods… a natural biological function. If you can talk about your weird rash, that
one time your got food poisoning and the contents of your newborn’s diaper, you
can talk about menstruation.
21.
Support groups… I’m not a part of any
actual support groups but I do follow a few hashtags and groups on social media.
Not so Mommy, Hilariously Infertile, EndoMEtriosis, etc.
22.
Time until diagnosis… I was diagnosed in
2015. I don’t remember when I started having periods so I can’t do the math but
I assume it was probably a decade or so.
23.
Physical transformation…weight gain; endo
belly is real, guys. I am constantly bloated and uncomfortable.
24.
Living with invisible illness…isn’t great
but is manageable. Once I acknowledged that I had a legitimate illness and started seeking help, it became
much better. It all starts with stepping out of your comfort zone, asking
questions and not being afraid of being judged.
25.
Daily impact…I know it’s a long way to
scroll back up but refer back to #2 & #5.
26.
Positives of the disease…my OB-GYN and
employer actually believed me when I talked to them about having endometriosis.
I’ve heard that is very rare so I must be one of the lucky ones.
27.
Endometriosis in 5 words… absolutely DREADING
everything about my period!! (Okay so that’s 6 words, my bad)
28.
My achievements despite endometriosis…
RagsReborn Gifts!!! Being able to run a small business despite the pain and
anxiety (let me tell you, participating at a craft show while on my period is no
small feat)
29.
An endometriosis myth…Getting pregnant
will cure endometriosis. Well, that’s cool but did you know that endometriosis causes
infertility so how do you expect me to get pregnant? Ugh.
30.
Worst medical experience…my former OB-GYN
(Dr. Robin Mikel) accused me of opioid abuse when I explained my pain level and
asked for her to prescribe a higher dosage of ibuprofen. She didn’t even stop
to think that I might have endometriosis or any sort of disease at all. She just
saw a young girl (I was in my early twenties) and assumed I was a recreational
user.
31.
Best medical experience …after my
uncomfortable appointment with Dr. Mikel, I immediately tracked down my
pervious OB-GYN, Dr. Shelia Newcomb (she left Integris Women’s Health to go to
a private practice and Dr. Mikal was her replacement.) That is when I got my
diagnosis and treatment options.