(Photo: Getty Images)
When Michelle Johnson was diagnosed
with endometriosis, she thought she had the flu.
“Winters here in Chicago are brutal,” she says. “So when I found
myself very fatigued and lethargic with a bad fever, I thought it was just the
weather.”
She ended up in the ER after the fever hit 104°F. After 9 hours of tests for
life-threatening concerns like a ruptured appendix, she found out she actually
had stage 4 endometriosis. Endometrial growths had gotten so large they were
pressing on her kidneys, restricting the flow of urine, which had led to a
kidney infection that caused the sky-high fever. She’d been having increasingly
heavy and frequent periods, but she thought it was “part of being a
woman,” she says. It wasn’t: “The doctors guessed I had had
endometriosis for at least 10 years, unchecked, undiagnosed.” She was
33.
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A little endometriosis 101 for the
unfamiliar: Cells that typically grow in the lining of the uterus, called the
endometrium, can end up in other places, where they really don’t belong,
says Marc R. Laufer, MD, a Harvard professor, chief of gynecology at
Boston Children’s Hospital, and the director of the Boston Center for
Endometriosis. “Those cells implant in those other locations and cause
pain if left untreated or undiagnosed." (Looking for more health
news? Get your FREE trial of Prevention magazine +
12 FREE gifts.)
That’s because they grow—and bleed—as
if they were still at home in the uterus. "Every time a woman has a
period, there are these micro-periods happening,” says Tamer Seckin, MD, a
specialist in endometriosis in private practice in New York and the co-founder
and medical director of the Endometriosis Foundation of America. The immune
system is altered in some way in women with endometriosis so that no matter how
much swelling and inflammation the body sends to the pelvic cavity to try to
clean away the blood that doesn’t belong, the implanted cells are still able to
thrive, acting almost like cancer in many ways. Growths on the ovaries, called
endometriomas or chocolate cysts, can permanently damage a woman’s fertility.
Cysts may grow on the bowels, bladder, or, more rarely, even infiltrate the
lungs.
There’s a ton we still don’t know
about why this happens, but the predominant theory is called retrograde
menstruation. The thinking goes that every month when a woman menstruates, some
of the blood that leaves the uterus escapes into the pelvic cavity that
surrounds the reproductive organs instead of leaving the body. But
we—frustratingly—don’t know why a woman would experience retrograde
menstruation in the first place. There seems to be a genetic link in some instances;
if women in your family have always had painful periods, it’s worth considering
the diagnosis before you write off your pain as a family legacy.
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We do know that endo can begin at a girl’s very first period, and that the most
obvious symptom is pain with menstruation “in the magnitude of killer
cramps,” Seckin says. Endometriosis is in no way “just” cramps
(more on that in a sec); not only is the pain debilitatingly severe, it’s also
often accompanied by nausea, vomiting, constipation, back pain, pain during
sex, and particularly heavy menstrual bleeding.
One of the biggest challenges for doctors, Laufer says, is there’s no way to
test for endometriosis in its earliest stages; it shows up on scans only when
it’s advanced, which makes preserving fertility even trickier, he says. Part of
what he and his Boston Center for Endometriosis colleagues are researching is
surgery-free ways to diagnose the disease early on.
In the meantime, if we’re going
to help the 6 to 10% of women of reproductive age who have endometriosis, we’re
going to have to stop being so hush-hush about it. What are we afraid of, a
little period talk? Psh. Here are a few of the many things only a woman with
endo truly understands. Familiarize yourself so you can be a better friend—or
realize you need treatment yourself.
Endo pain is not a “normal part of
being a woman,” so there will be none of this “suck it up”
nonsense. Thanks, though.
(Photo: Getty Images)
Before you say, “Oh yeah, I
have bad cramps, too!” consider Amy Day’s experience finding out she had
endometriosis: “Over the course of the year after I went off the pill,
each month my period got worse than the month before. One month, I basically
spent 2 days lying on the bathroom floor, unable to move or eat or drink,”
the naturopathic doctor, now 41, says. She was just 27 at the time, and when
she had surgery mere days later, her doctor removed an endometrioma the size of
a grapefruit. “I was offered every painkiller on the block because I had
just had surgery,” she says, “but that level of pain was nothing compared to the amount of pain I had
been in previously.”
As many as 70% of women have some cramping with a period at least once in a
while, Seckin says, but there aren’t many women who have cramps so severe they
require narcotic pain meds or have to stay home from work. “So many young
girls and young women especially are just putting up with painful periods and
not getting the help they need because they think they’re supposed to deal with
it,” Day says. “If a young girl feels disadvantaged in any way by a
painful period, that’s not right,” Laufer agrees.
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And please spare us the
“just get pregnant” business.
(Photo: Getty Images)
“I didn’t want to be on
powerful drugs, so I asked for the most natural treatment available, and I was
told I should have a baby,” Day says. “I was 28 years old, not ready
to start a family, and told for a medical treatment to bring another human
being into this world who I’ll have to care for and raise?!” Seriously, folks:
Not the greatest reason we’ve ever heard to have kids.
Yes, getting pregnant can reduce some endo symptoms. With a bun in the oven, a
woman’s progesterone levels are higher, and because endometriosis is fueled by
estrogen, the surplus of progesterone can suppress the disease. That’s how this
whole “just get pregnant” thing probably got started. But it’s not a
cure. Nine months later, symptoms will return in most women—and she’ll have a
baby to care for, too.
That’s assuming, of course, that a woman with endometriosis can even get
pregnant to begin with. Somewhere between a third and half of women with endo
won’t be able to because their reproductive organs will be so damaged by the
disease. Among women who already know they’re infertile, 20% are likely to have
endometriosis and not know it, Laufer says, “either because they haven’t
felt the symptoms or they normalize the symptoms."
When Day was ready to start a family, she found she
couldn’t.
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Getting a hysterectomy is a
last resort, at best.
Since endometriosis stems from the uterus, it makes some sense to assume
removing the uterus would remove the problem. A hysterectomy can be effective
in lessening pain, but it’s still not a cure, considering cysts can grow on any
number of other organs. The hope is to avoid hysterectomy, Laufer says. He’s
treated teenagers who were told they needed the operation simply because their
previous doctors were frustrated by their lack of options. "One should
always seek out another opinion and consider something less radical,” he
says.
Plus, many women with endo would still like the opportunity to at least try to
get pregnant when they’re ready. “I did want to at some point try to have
children, so for me a hysterectomy wasn’t an option,” Johnson says,
although doctors urged her to consider it. “They were pushy with that; I
knew I had to find an alternative.” She’s 40 now, and still hopeful.
“I do still plan to have children; that’s definitely still in the cards
for me,” she says. “If I find that’s not possible, adoption is very
much a strong second option.”
There
should be frequent-flyer perks in the operating room…
(Photo: Getty Images)
The best possible treatment for
endometriosis starts with excision surgery, Seckin says, which removes the
growths and their roots. (Another option is ablation, a process that
essentially burns off the lesions with a laser, leaving the roots intact. It
should really only be used in the early stages of the disease, if at all.) But
because some endometriosis is either hard to see or hard to excise completely
(or both!), sometimes surgery doesn’t get everything, or endometriosis comes
back, and a second, third, heck, seventh surgery may be needed. Day has had two
surgeries, 11 years apart. Johnson, a licensed massage therapist, has also had
two, and says some of the women she works with as an advocate with the
Endometriosis Association have had as many as 10.
…But surgery also isn’t a
magic bullet.
Surgery helps, certainly, but there is no cure. “In my mind, endometriosis
was this glob of something,” Johnson says. She, like many, assumed once
the glob was out, life would go back to normal. Not only was it too dangerous
to her other organs to remove 100% of her endometriosis, she’s also had a
recurrence. “They take it out, but you still have a menstrual cycle, which
feeds the disease,” she says.
That’s why many women use
hormonal treatment, whether it’s a birth control pill or the vaginal ring, to
“turn off” the menstrual cycle to keep lingering symptoms under
control, Laufer says. On continuous hormones, a woman won’t have a regular
period, and therefore shouldn’t have the endo pain associated with it. Experts
recommend hormonal medications until a woman is done having kids. When
fertility is no longer a concern, she can then reevaluate treatment based on
how bad the pain continues to be. At menopause, the drop in estrogen tends to
result in a drop in endometriosis symptoms, Laufer says, but pain may also
continue later in life. “Nothing in this disease is black and white,”
he says.
Many women with endometriosis rely on prescription painkillers—nothing else
dulls the pain enough to allow them to carry on with their daily lives. But
Seckin is concerned about addiction to some of these powerful drugs; in the
care of less-experienced doctors, some women are told there’s no other option
and are essentially bullied into taking meds they then come to depend on.
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Diet Soda
This discomfort talking
about—gasp!—periods is getting so old.
In many circles, it’s still taboo to talk about bleeding and vaginas and
uteruses. But we wouldn’t shy away from discussing endometriosis if we called
it, say, an immune disorder, Day says. Women with endo often deal with comments
that they don’t look sick. “It’s not a disease you can see,” Laufer
says. “You can’t see that a woman’s got this, yet she’s suffering.”
There’s a pervasive sense that the misunderstanding of endometriosis stems from
the age-old association menstruation has with being somehow dirty or bad,
Seckin says. Some doctors treat painful periods as a symptom of some underlying
psychological issue—maybe things aren’t going well in school for a teenage
girl, and her doctor implies her complaints are an excuse for her bad grades.
“There’s a cultural misconception that when there’s pain with a period, it
is all in a woman’s head,” he says.
It certainly makes dating extra tricky, Johnson says. Not only is endo a top
cause of infertility, for many women it’s accompanied by incessant bleeding and
pain so bad it can make sex nearly impossible—and what woman wants to bring that up on a third date? Johnson says many
women she’s worked with tell stories of getting friend-zoned after having the
endometriosis talk with a formerly interested guy. “It’s difficult to find
a caring and compassionate partner,” she says.
Yes, you can talk back to
your doctor…
Women with endo know it can take a while to find someone who truly listens, but
they also know it’s worth it. Johnson says she’s “fired” about three
different docs. Two years after surgery, still dealing with excruciating pain,
she was told by her team of care providers that they didn’t know what else to
do. “They had exhausted all the options from their limited knowledge of
the disease,” she says. She was left to find an endo specialist herself,
with the help of online support groups.
Even some ob-gyns don’t always comprehend the seriousness of endometriosis
pain. “It’s a shame, but gynecologists are missing this disease
constantly,” Seckin says. He suggests looking for someone who specializes
in endometriosis specifically. “If you get blown off by your first doctor,
go to another doctor,” Day says.
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…But
doing so can feel very isolating.
(Photo: Getty Images)
Being told by her doctors that
they didn’t know what else to try was “very disheartening,” Johnson
says. She started going to therapy for clinical depression, which she later
learned was not uncommon among women with endometriosis. “If I have to
live with this, and I can’t even get any consistent relief, if this is what my
life has been reduced to, if the doctors can’t help me, what am I to do?”
she remembers thinking. It can feel all-encompassing, she says, and it’s not
uncommon for women with endometriosis to end their own lives. “It’s not
difficult to spiral into that dark place.”
Indeed, chronic pain of any cause has been linked with higher
rates of depression and suicide. “Many women are
depressed because no one understands,” Seckin says. “Doctors have to
have more compassion, more empathy.”
As
if the pain wasn’t bad enough, sometimes it’s totally unpredictable, because
that’s always fun.
After 3 or 4 months symptom-free, you’re riding high, confident you’ve turned a
corner somehow. Then, Johnson says, you’ll be at work and out of nowhere start
bleeding “quickly, suddenly, and aggressively.” Women with
endometriosis learn to always be prepared, whether it means stashing sanitary
napkins, pain pills, wipes, or those handy bleach-on-the-go pens in their purses
and gym bags, she says. Because of endo’s unforeseeable nature, it’s constantly
getting in the way of women’s social lives, she says. “You can make plans
to go out—you bought the ticket, you’ve got the outfit—but the morning of,
you’ll be hit with a flare-up and you can’t go.”
Eating
well and getting enough sleep are non-negotiable.
(Photo: Getty Images)
After surgery and along with hormones,
experts recommend approaching endometriosis care from all angles: A holistic
approach to treatment can include working with a physical therapist to limit
pelvic pain, adopting an anti-inflammation diet, even acupuncture, Seckin says.
Day advocates for clean living: She opts for green cleaners, eats organic, and
keeps stress in check to quiet inflammation and pain. Johnson says even though
a little gentle exercise may help with the pain, sometimes being active
exacerbates it or brings on new bleeding.
We can’t say it enough: There is no cure.
Have we repeated this enough yet? Surgery can lessen some symptoms, and
medications can help too, but nothing puts endo to rest for good. “There’s
still some unspoken perception that surgeries and medications will make this
thing go away,” Johnson says. “You have to redefine what normal is
for you. It will never look like what it did before your diagnosis, and that is
incredibly frustrating.”
By Sarah Klein
This article ‘11 Things Only Someone With Endometriosis Understands’ originally ran on Prevention.com.