Some Infertility Symptoms Manifest in Children

Note: I’ve created a new category this morning — Memo to the Fertile Community.

Below is a story sure to strike fear in the hearts of moms and dads out there — your eight-year-old daughter could be at the beginning of a long descent into infertility. I would never want to wish the sort of pain associated with endometriosis or infertility on anyone, let alone a slip of a girl. Even I was surprised to learn that the condition could manifest itself in someone so young.

My intent in highlighting this piece is to attempt to change a few minds about just who is affected by infertility and how early the symptoms can begin.  It is stories like this that can help tear down the stereotype that the vast majority of infertility problems stem from 40+ career women who ‘forgot’ to have children and are now going to extreme lengths to coax old eggs into a successful pregnancy.

I had my first infertility doctor discussion when I was in my late 20s — hardly over the hill. My physician recommended a Hysterosalpingogram to see if there was a blockage in my fallopian tubes.  This was the first in a long series of doctor appointments, surgeries and treatments aimed at unraveling the mystery of my infertility.  In the end, doctors at a world-class medical facility were left scratching their heads wondering about the exact cause of my inability to conceive. We were left with it could be a little bit of this and a little bit of that.  I remain today into the maddening category of ‘unexplained infertility.’

You can’t treat what you don’t fully understand.

So, moms and dads out there, I hope your daughters never have to live through any type of infertility experience, but please note that the condition is widespread and can affect females at a tender age.

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27 February 2007(c) Copyright 2007, The Miami Herald. All Rights Reserved.

Valerie Berrin started having pelvic pain when she was 8, a pain she couldn’t
really describe — ”sometimes sharp, sometimes dull and almost constant.” Four
years later, after two surgeries and visits to several specialists, she was
diagnosed with endometriosis, a disease in which tissue similar to the lining of
the uterus grows where it doesn’t belong.

This isn’t something the Pinecrest teen would have wanted to speak openly
about, especially to a reporter. ‘Before, I’d say, `This is my private
business.’ ”

Now 18, she’s speaking to friends and Gulliver Prep classmates “to help
others so they won’t have to spend years wondering why their periods are so
bad.”

She even organized a mother/daughter forum at South Miami Hospital last
November to educate girls about their bodies and to encourage mothers to talk
openly with their daughters. Her panel of experts covered such topics as the
human papillomavirus, which can cause cervical cancer; nutrition and eating
disorders; sex and honoring your body; and, of course, endometriosis, the growth
of endometrial tissue in locations such as the ovaries, fallopian tubes and
abdominal cavity. The disease often causes severe menstrual cramps and pelvic
pain. Untreated, it can result in a high risk of infertility.

Berrin’s menstrual periods didn’t start until she was 12, but she had
symptoms of endometriosis at age 8, which is rare, though not unheard of.

A baby can be born with ”congenital endometrial cells” outside of the
uterus, says Dr. John Rock, founding dean of Florida International University’s
College of Medicine, which is scheduled to begin admitting students in 2009.
“Under the influence of estrogen, prior to menstruation, they can start to grow
and scar and cause pain.”

HALLMARK SYMPTOM

Pelvic pain was Berrin’s only complaint, a hallmark symptom among sufferers,
says Rock, ”particularly when you have deep infiltrating endometriosis.” And
although Berrin’s older sister was diagnosed with the disease at 19 after eight
years of excruciating menstrual periods, it didn’t occur to their mother that
Berrin’s problem was gynecologically related.

”She was too young,” Fran Berrin says. “When a little girl says her tummy
hurts you think it’s a [gastrointestinal] related problem. We never really
linked the girls together.”

After visits to two pediatric gastroenterologists — one at the University of
Miami and another in Milwaukee in the spring of 2001 — Berrin returned to UM
for exploratory laparoscopic surgery. ”You have a major problem here but you
need a pediatric gynecologist, and our community doesn’t have one,” the surgeon
told Fran Berrin, who was growing more and more frustrated as her child
continued to suffer.

Rock understands that making an accurate diagnosis “can be problematic. If
you don’t recognize the possibility, the disease can be missed.”

MISSING STATISTICS

Even though the majority of the 5.5 million females in North America who have
endometriosis are in their child-bearing years, the disease has been diagnosed
in children prior to menstruation, Rock says, but the incidence among children
is unknown because many never seek care.

Berrin’s next appointment was at Harvard’s Children’s Hospital Boston, where
Dr. Marc Laufer, a pediatric gynecologist, performed surgery in September 2001
and diagnosed her with endometriosis. Now ”we could treat her appropriately,”
Fran Berrin says.

The following year, Berrin started seeing Rock, an expert on endometriosis
and reproductive endocrinology who had been treating her sister. At that time,
he held a leadership position in the department of gynecology and obstetrics at
Emory University. Berrin had three laparoscopic surgeries and a laparotomy —
open surgery — performed by Rock and his colleagues over the next several years
to remove growths. Her last surgery was in April 2006.

The disease ”most likely will be a lifelong problem,” Rock says. After you
remove the growths, they recur less frequently. “Hopefully she will not require
further treatment, but you never know.”

The way Berrin sees it, without the visits with specialists, the missed
diagnoses and surgeries, she never would have known as much as she does now. So
she’s spreading her knowledge. “My friends, my peers don’t know much about
their own bodies. . . . Some think that since we go to a private school we live
in a bubble and can’t get sexually transmitted diseases.”

And so, before Berrin’s panel of experts spoke at her mother/daughter forum
last November, she addressed the crowd: “I have been battling endometriosis
since I was 8 years old. . . . I know firsthand what it’s like to be vulnerable.
. . . [My sister] and I have found the best medical care and were able to
preserve our reproductive organs. But many people are not as lucky. . . . I want
you to walk away more empowered so you can lead a healthy life. . . . Remember,
the first doctor you see might not be the right one for you.”