“It’s not that bad." “Suck it up." “It’s all in your head." “You’re
being overdramatic." “That’s just a normal period." Yeah, periods can hurt.
Cramping and bloating and back pain are kinda to be expected when your body is literally
expelling the inside of an organ. but at what point is a certain level of pain not
normal?
The whole idea that periods are supposed to hurt
often means that folks may not get the help they need
to manage certain conditions ...conditions
like endometriosis. -What endometriosis is, is when you have cells
that are similar to the lining of the uterus, but those similar cells are found external,
or outside of the uterus. -Let's put that in the context
of a period.
So, each cycle, endometrial cells inside the uterus are reacting to changing hormone levels
by breaking down and then being released
through the vagina as a period.
But with endometriosis, the endometrial-like
tissue growing outside of the uterus is doing the same thing. Except these cells have no
way to get out of the body. Symptoms of endo will vary, especially based
on where the endometrial-like tissue is growing in the body,
and often these symptoms aren’t taken that
seriously, they're brushed off as just a ‘bad period’.
But for Jenneh, her endo was found on her
diaphragm. -So I was having nausea. I was starting to
have difficulty with running. I was having crazy constipation, bloating, pain with sex.
And this gynecologist asked me if I had ever heard of endometriosis. And I told her, “No,
I'd never heard of it before.” -Endometriosis is this invisible disease and
the way that so many patients describe the disease is like barbed wire being wrapped
around their abdomen. Endo's found anywhere in their body. So the patient
looks okay. They look healthy, but they feel miserable.
-The clumps of tissue that grow outside the uterus are called implants, and they can literally
pull on and distort internal organs and muscles. Those degrading cells can cause inflammation
that spreads to the surrounding area. In severe cases, implants may eventually scar and basically
act like glue, causing organs to stick together when they shouldn’t.
All of this contributes to the increased risk of issues like ectopic pregnancy and infertility
in those with endometriosis because when it’s found around the reproductive organs,
rogue endometrial-like
tissue can wreak havoc and prevent normal ovulation.
But the lack of awareness around this disease means that many who struggle with it may not
get diagnosed for a long time—on average, it takes about 7 to 10 years.
-You can't imagine what it's like in the office to see patient after patient tell their journey
and tell their story of this debilitating, awful pain. They're just not living their
lives to the fullest. So we just really need to do a better job at making sure that that
doesn't continue. -And the wait to get diagnosed can seriously
impact someone’s life in the meantime.
Like Jenneh, whose diagnosis took four years.
-I lost my career, I’m still not back in grad school, I have friends that I’ve lost,
I thankfully have a really supportive family, but I know that it can fracture family relationships
and marriages. -So why does it take so long to get a diagnosis,
and to get treatment? Endo wasn’t even discovered until
the 1920s, and it took decades for the condition to be regularly included in medical training.
In France, for example, endometriosis was just added to the medical training curriculum,
and in many countries education on effective treatment options is still not regularly included
in training even for gynecologists. As if to add insult to injury, there’s only
one way to definitively diagnose endo and it’s surgery. A doctor will go in through
a tiny incision and take a biopsy to make sure that
there really is endometrial-tissue growing outside the uterus.
-If we as gynecologists were simply armed with the knowledge that the symptoms of endometriosis
can cross all organ systems. With the symptoms that I'd mentioned before, we would be picking
up so many more patients, and we'd be really shortening the suffering and stopping that
10-year diagnostic delay. -Other factors play a role too. A recent study
found that Black and Hispanic women are typically diagnosed with endo at later ages than their
white counterparts, and this reflects the larger societal biases
and inequalities related to race and ethnicity.
-I think that if I weren't a nurse, and specifically a nurse at the hospital that I was working
at, I think that my experience would have been a lot different. And that's not saying
much, because it still took me going from doctor to doctor to doctor and feeling
like no one was listening to me so I can't even imagine how much more for someone who
was not me. -So, what’s the good news? There are ways
to manage this condition. Hormonal medications like the birth control
pill can often ease symptoms. Pain
medication can also help, but it just masks the pain.
And it's really important to remember that none
of these options actually make the endometrial-like tissue go away.
Now, surgery is another treatment for endo.
There are two kinds of surgery—ablation and excision. Ablation is where the tissue
is basically burned away, and excision is when the implants are cut out. Excision is
the preferred treatment for most cases of endometriosis, especially where that endometriosis
has deeply infiltrated other areas of the body.
More research could help us better understand the appropriate treatment
for different stages and types of endometriosis. And surgery isn’t a perfect cure either—because
while that endometrial-like tissue won’t grow back in an area where it’s been cut out,
the tissue could develop in new areas of the body and pain could persist after treatment.
With all this goin’ on, you can see why
it’s so important to speak with a specialist and make sure your care plan for endometriosis
makes sense for your specific situation. A glimmer of hope here—in the last few years
more and more of the underlying cellular mechanisms have been explored for why this tissue is
growing where it’s not supposed to. But this research has yet to be translated into
better treatment options. This comes down to what we talked about in
our very first episode of this series. Issues like endo have only been acknowledged and
thoroughly investigated by the medical community relatively recently.
So the more we talk about it, the
more we advocate for more research and better solutions,
hopefully the faster we're going to get better the outcomes
for real, everyday people.
-I know that the symptoms that come with endometriosis
can kind of be a constellation and all over the place, and you're seeing all these different
specialists and no one's putting the pieces together. Ultimately, though, it's not in
your head, your pain is real, your symptoms are real, and to keep fighting until you find
someone who believes that. -If you or someone you know is struggling
with pain or with getting a diagnosis, we’ve left some resources in the description.
Thank you all so much for watching Seeker’s Body Language, and we hope you learned something
new in this episode. If you have another topic like this you want us to cover in this series,
let us know in the comments,
and I’ll see ya next time.