If you’re ready to start a family, having endometriosis may make
it more difficult. A review published in December 2012 in Obstetrics and
Gynecology Clinics of North America indicates that as many as 30 to 50 percent
of women with endometriosis struggle with infertility. The challenges are
emotional as well as physical.
“If a woman has been diagnosed with endometriosis, which
results in secondary infertility, and she has decided that she wants to start a
family, then she’s experiencing distress from two different angles,” explains reproductive
endocrinologist Judi Chervenak, MD,
associate clinical professor of obstetrics and gynecology in women’s health at
Montefiore Medical Center in New York City.
“The first [stressor] is that she has a medical
condition, which is resulting in infertility and which could also be causing
her physical distress,” Dr. Chervenak says.
“But she also is experiencing emotional distress, in that her physical
condition is limiting her ability for that which she so desires.”
From the wish to have a baby to the diagnosis of reproductive
problems and the often lengthy process of trying to conceive, the experience of
infertility can cause anger, confusion, depression, a sense of helplessness,
and frustration.
Struggling With
Loss
With infertility “you experience loss, the
loss of the image you have of yourself as a healthy person, as a fertile
person,” explains Mary Lou
Ballweg, co-founder and executive director of the Endometriosis
Association. “It’s like losing a dream.”
Shannon Carney, a 36 year-old from Milwaukee,
experienced painful periods for years before she was diagnosed with
endometriosis at age 32. “I had symptoms back as far as
I can remember,” says Carney. She also had trouble conceiving. Around
the time she was getting advice on endometriosis treatment options, she
unexpectedly became pregnant. But the intense joy she felt turned into “the
worst, devastating grief” when she had a miscarriage at eight weeks.
“How did I cope?” she asks out loud, “through self-educating
myself, which then led me to other women who had similar experiences. Everyone
has their own road map. It’s too late for me — I can’t go back and change
things. I can’t go back to get the diagnosis 10 years earlier, when I was
healthier and could have tried for a baby then. Now I want to spread education
and awareness about endometriosis to as many women as I can,” says
Carney, who is the education program coordinator for the Endometriosis
Association.
Tips for Handling
Endometriosis-Related Fertility Issues
If a jumble of painful emotions is affecting you, take heart:
there are resources you can turn to. Start with these tips:
Remember you aren’t alone. In the United States, about 1 in 10
women between the ages 15 and 44 have trouble getting or staying pregnant,
according to the Centers for Disease Control and Prevention. And endometriosis
affects about 176 million women worldwide — or about 1 in 10 women, according
to the American College of Obstetrics and Gynecology. As many as half of these
women are struggling to get or stay pregnant.
It’s OK to feeling anxious, sad, and stressed. “Infertility was long thought to be the cardinal symptom of
endometriosis,” explains Ballweg. “But now we
know that usually, pain comes first; long before infertility issues, there’s
the physical pain of the disease.” This means you’ve probably been
dealing with difficult issues for a while. So while the emotional pain of
infertility is particularly difficult, it’s important to not feel weak in any
way for feeling the way you do, or if you need help coping.
You may go through several stages of feelings. The process of
coping with a fertility problem can be likened to the well-known “grief cycle”
described by the Swiss doctor, Elizabeth
Kubler Ross. This response to grief involves going through periods of
shock, denial, anger, bargaining, depression, testing, and acceptance. Ballweg
cautions that dealing with a reproductive problem, especially if you’re trying
to conceive, may mean revisiting the stages of grief over and over.
Information is your friend. “The more you
know, the more empowered you’ll feel,” says Ballweg. Learn as much as
you can about endometriosis as well as infertility. Resolve from the National
Infertility Association offers links to support, learning, and action on
infertility issues around the country.
Develop an action plan. Keep an ongoing list of questions for your
doctors. Knowing that you are taking positive steps forward will
probably also make you feel more in control about your future. Ask for
information on endometriosis resources in your community.
Don’t be afraid to ask for support. Whether it’s expressing
yourself through journaling, talking to a social worker, or joining an
endometriosis support group, it’s important to voice your fears and
frustrations in some way. Endometriosis and general infertility support groups
can be found all over the country.
The most important thing, says Ballweg, is to make getting well,
not just getting pregnant, your focus. Things have changed over the last few
years, she says. “It used to be, let’s just get her pregnant. Now it’s, ‘first,
let’s get you well.’” And there’s so much that can be done to have that happen,
she says.
When you’re in a lot of pain, and your life is upside down, it can
help to learn about the disease, learn about the toxicities — learn about it
all. “There’s so much to it, so much to learn and do
about first getting well,” she says. (Everyday Health)
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