Facing the Pain: One Woman’s Battle with Endometriosis and Polycystic Ovarian Syndrome




Curled up in the fetal position, I’d clutch my abdomen as the cramps grew worse. With each wave of nausea, I’d breathe in and wish the pain away. Even at 14, I knew there was something wrong. None of my other friends experienced their “monthly gifts” quite like I did. None of them required heating pads, constant pain medication, days off from school and frequent visits to the nurse—who knew me by name.

Once a month she’d expect to see me. “That time of the month again,” she’d say, guiding me toward the pink beds. I’d lie there for an hour as the cramps roared through me. The pain radiated through my abdomen around my back, down my legs to my kneecaps. The nausea was unbearable.

Mother Nature would choose when she decided to bring my period. Sometimes I would go three months with no guest appearances. Other times it arrived for two months then disappeared for four.
My doctors said this was normal and gave me painkillers. At 16, I saw my first obstetrician-gynecologist, who ordered tests. He was the first person to give me some sort of diagnosis.

“You have cysts on your ovaries,” he said, pointing to the ultrasound machine. They’re harmless. They’ll go away.” Then he told my mom I needed birth control pills.

 

All in My Head

Women are resistant to pain, which often leads us to ignore vital warning signs. For years I tried to deal with pain, but I wanted doctors to know it was real. I was passed from doctor to doctor, from gastroenterologist to urologist, from general practitioner to obstetrician-gynecologist, and they would run expensive tests and draw buckets of blood. Jumping from birth control pill to birth control pill, I would navigate the mood swings like a ship at sea. With each pill there would be new, strange symptoms like hair loss, acne, weight gain. Finally, at 27, I was diagnosed with irritable bowel syndrome, a disorder caused by anxiety. Then my brigade of doctors slapped me with yet another diagnosis: hypochondria.

Really?

“Historically, until the 1980s, there were chapters in gynecological books on psychosomatic gynecology,” says Dr. Tamer Seckin, a world-renowned laparoscopic surgeon and president and medical director of the Endometriosis Foundation of America. “This was all about pain and how women make up pain, going back to Freud and the issue of secondary pain or projecting other issues. The myths and taboos about menstruation and the way doctors—even female doctors—treat female patients when they come in with pain, not only painful periods but other elements of pain, were never addressed.”

“It’s not in your head. It’s in your pelvis,” says Heather C. Guidone, surgical program director of the Center for Endometriosis Care in Atlanta, Ga. “It’s very frustrating to watch women go through this over the years and believe there’s nothing wrong. But where there is smoke, there is fire, and excision surgery can be extremely beneficial. We are teaching our girls that it is OK to suffer; it is OK to be in pain. And that’s not right.”

I knew something was wrong. I had to be my own detective. A quick Google search for “reproductive specialist” brought up a Web site for Reproductive Associates of Delaware, where I spoke with Dr. Rhonda Wright.
“Tell me about the pain,” Wright said. “What other symptoms do you have?” Not only was she listening and writing things down, she seemed to understand completely.

After more lab tests, I was delivered a firm diagnosis: polycystic ovarian syndrome, also known as PCOS.

“It’s a misnomer because the problem doesn’t arise from your cysts.” says Wright. “It arises from an imbalance of hormones.” On top of the PCOS, she suspected I had endometriosis and made an appointment for me to see medical director Dr. Barbara McGuirk.

 

Into the Vortex

Polycystic? Endometri…huh? I had to say the words over and over on the car ride home. I felt like I was being sucked into a black hole. I learned later that millions of women suffer PCOS or endometriosis. Millions are in pain, frightened and alone.
Blogger and health coach Amy Medling is one of them, which is why she started the PCOS Diva Web site.

“I want women with PCOS to know that PCOS isn’t an end-of-the-world diagnosis,” says Medling. “It’s an opportunity to live life like a diva. By taking control of your health and making a commitment to consistent lifestyle change, you can successfully manage PCOS.”

Medling suggests that women with PCOS eat a gluten-free, dairy-free and soy-free diet that’s high in vegetables and low in fat. She also recommends exercise, meditation and striving for a positive outlook.

Making lifestyle changes is important, but you should be in the right frame of mind. I didn’t know how to take control. I didn’t know where to start.

After talking to McGuirk, I went with the laparoscopic surgery. I figured I would tackle the endometriosis first.

Surgery was followed by a period of rest and healing. I was thankful to have a great surgeon who took time to explain everything to me and listen to my concerns. McGuirk found endometriosis lesions on my uterus, bladder and intestines. That explained my digestive problems.

“In the future I want this kind of surgery to be something everyone has the right to,” says Seckin. “Just as people have the right to vote, the right to carry a child, it should be a right to have your endometriosis properly treated.”

I was shocked by just how many women had no idea about endometriosis, or that their pain could be treated. Most didn’t know about PCOS either, though they exhibited the symptoms. I’ve made it my mission to make a change.

Sometimes when your body is sick your mind becomes sick, too. After the surgery, endless doctors’ visits, and nights of excruciating pain, I found myself in a dark place. I wondered why this was happening to me. What had I done to deserve this?

I was comforted to speak with other PCOS divas and endo sisters via Twitter. Some had been through 10 to 15 surgeries, endured excruciating pain, relied on narcotic pain killers, and lived through the anguish of multiple miscarriages. How did I have the right to complain?

The surgery wounds began to heal and I felt hope. I realized the importance of staying positive and I started to pull myself out of that black hole.

With help from PCOS Diva, I managed my symptoms by changing my diet. I took yoga and exercised. Yoga, in fact, helped both my PCOS and endometriosis symptoms.

Allanah Law, yoga teacher, therapist and founder of Yoga Yin, a yoga center in Australia that focuses on women’s health, understands first-hand the pain that accompanies endometriosis. After years of suffering, surgeries, and daily combinations of Codeine and Naprogesic, she decided to take up yoga. It was the best decision she ever made.

“Within the first five years of practicing yoga regularly,” she says, “the pain had dulled from severe to almost non-existent. I also began taking Chinese herbs and, by 32, I was pregnant with my first child.
“In yoga, we focus on calming the mind and letting go of sensation in the body. Yoga does not necessarily heal your pain or disease, but it can change the way you think about it.”

Law says women with PCOS or endometriosis should try yoga. “Both endometriosis and PCOS are hormonal issues,” she says. PCOS is a disease where androgens are increased and progesterone is lowered, leading to an increase in testosterone in the body. Endometriosis, on the other hand, is aggravated by excessive estrogen. Yoga rebalanced the body’s endocrine system, bringing estrogen, progesterone and testosterone into balance.

Yoga became part of my fitness routine, and I felt better physically and emotionally. The more I examined the foods I ate, the better I felt.

“I always tell my patients not to eat anything your grandmother wouldn’t eat,” says McGuirk. “If you can’t pronounce the ingredients, then you should definitely not eat it.”

I began to see light at the end of the tunnel. I understood what Medling meant about keeping a positive frame of mind, and what Law meant when she said to let go.

Today I feel healthier than I have in many years. I take each day as it comes. Some days are worse than others, but I’m ready to take control of the pain.

I’m thankful for this journey. It made me who I am today. And I hope for a world where women’s reproductive health is given the attention it deserves.

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February 2016

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Cost: $13

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Cost: Free

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More information

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Cost: Free with Museum Admission.

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Penn Museum
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Cost: $13

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Cost: Free

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Cost: Free with Museum Admission.

Where:
Penn Museum
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View map »


Website »

More information

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Cost: $13

Where:
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View map »

More information

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Cost: Adults $20; seniors $18; students (with ID) $15; children (ages 6–17) $15

Where:
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3260 South St.
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View map »

More information

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Cost: $0-14

Where:
Hagley Museum
201 Hagley Creek Rd
Wilmington, DE  19807
View map »


Telephone: 302-658-2400
Contact Name: Meg Marcozzi
Website »

More information

This art exhibit features fine art works and three dimensional pieces that embrace the subject “red.” Artist are free to use their imagination and creativity, so works will include...

Cost: Free

Where:
The Gibby Center for the Arts
51 W Main St.
Middletown, DE  19709
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Sponsor: The Gibby Center for the Arts
Telephone: 302-449-5396
Contact Name: Caroline Zeitler
Website »

More information

For more information, please contact: Dave Ruffner ​Rehoboth Beach Film Society 107 Truitt Ave. Rehoboth Beach, DE 19971 302-645-9095, ext. 4 administrator@rehobothfilm.com...

Cost: Free

Where:
, DE


Sponsor: Rehoboth Beach Film Society
Telephone: 302-645-9095
Contact Name: Jeri Kaplan
Website »

More information

Nanticoke Memorial Hospital will host Lymphedema support groups on the third Thursday of each month at the Seaford Library and Cultural Center from 1:30 PM to 3:00 PM. This free support group is...

Cost: FREE

Where:
Seaford Library & Cultural Center
600 N Market St, Ext
Seaford, DE  19973
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Sponsor: Nanticoke Health Services
Telephone: 302-629-6224
Contact Name: Robert Donati
Website »

More information

Looking for something different for your children to do this summer? Look no further than the Summer Camp Fair at the Delaware Museum of Natural History on Thursday, Feb. 18, 2016. This free...

Cost: Free

Where:
Delaware Museum of Natural History
4840 Kennett Pike
Wilmington, DE  19807
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More information

Nanticoke Physician Network General & Bariatric Surgery will be hosting bariatric support groups on the first Tuesday and third Thursday of each month from 5:30 pm to 6:30 pm at Nanticoke Memorial...

Cost: FREE

Where:
Nanticoke Memorial Hospital
801 Middleford Road
Seaford, DE  19973
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Sponsor: Nanticoke Physician Network General & Bariatric Surgery
Telephone: 302-629-6611 x 8810
Contact Name: Shelly Geis

More information

Rebecca Kobrin of Columbia University will discuss her paper, “Credit to the Nation: Jewish Immigrants, the World of Immigrant Banking and American Finance, 1873–1914.” The...

Cost: Free

Where:
Copeland Room of Hagley’s library building
298 Buck Road
Wilmington, DE  19807
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Telephone: 658-2400
Contact Name: Meg Marcozzi
Website »

More information

Ditch the winter whites for a world of dazzling color at Longwood Gardens, where you can stroll through thousands of orchids in bloom. Kennett Square, www.longwoodgardens.org 

Where:
, DE

More information

Regional artists Carol Tippit Woolworth, Catherine Drabkin, Pahl Alexander Hluchan, Colleen Randall and Dan Jackson explore the concept of place—physical, emotional and spiritual—in...

Where:
, DE

More information

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Our Winter Group Show features oil paintings by Rosemary Castiglioni, Jim Gears and Mary Ann Weselyk. Still-life paintings with subtle color variations by...

Cost: Free

Where:
The Station Gallery
3922 Kennett Pike
Greenville, DE  19807
View map »


Telephone: 302-654-8638
Website »

More information

What was behind the legendary story of King Midas and his golden touch? That is the question to be answered—not with chests full of gold, but with a spectacular array of ancient artifacts,...

Cost: Adults $20; seniors $18; students (with ID) $15; children (ages 6–17) $15

Where:
Penn Museum
3260 South St.
Philadelphia, PA  19104
View map »

More information

The Philly Home Show will inspire your inner HGTV star at the Pennsylvania Convention Center in Philadelphia from Feb. 12–14 and 19–21. The show will feature highly interactive...

Cost: $13

Where:
Pennsylvania Convention Center
1101 Arch St.
Philadelphia, PA  19104
View map »

More information

Explore some of the diverse ways that human beings have understood sex and sexuality, gender and gender diversity in this small but broad new exhibition, presented in conjunction with the 2015-2016...

Cost: Free with Museum Admission.

Where:
Penn Museum
3260 South St.
Philadelphia, PA  19104
View map »


Website »

More information

Two-hour guided tours are offered at 10:30 a.m. and 1:30 p.m. Monday through Friday. Guests will visit Eleutherian Mills Residence, the first du Pont family home built in America; the First Office...

Cost: $0-14

Where:
Hagley Museum
201 Hagley Creek Rd
Wilmington, DE  19807
View map »


Telephone: 302-658-2400
Contact Name: Meg Marcozzi
Website »

More information

For more information, please contact: Dave Ruffner ​Rehoboth Beach Film Society 107 Truitt Ave. Rehoboth Beach, DE 19971 302-645-9095, ext. 4 administrator@rehobothfilm.com...

Cost: Free

Where:
, DE


Sponsor: Rehoboth Beach Film Society
Telephone: 302-645-9095
Contact Name: Jeri Kaplan
Website »

More information

This art exhibit features fine art works and three dimensional pieces that embrace the subject “red.” Artist are free to use their imagination and creativity, so works will include...

Cost: Free

Where:
The Gibby Center for the Arts
51 W Main St.
Middletown, DE  19709
View map »


Sponsor: The Gibby Center for the Arts
Telephone: 302-449-5396
Contact Name: Caroline Zeitler
Website »

More information

Meeting every Friday, Bayhealth Kent General Hospital, 640 s. State Street, Dover, 7:30 pm., Private Dining Room #3 in the basement. For those who have, or think they may have a gambling problem....

Cost: 0.00

Where:
Bayhealth Kent General Hospital
640 S. State Street
Private Dining Room #3
Dover, DE  19901
View map »


Telephone: 800-855-2CALLGA
Website »

More information

A spoiled orphan girl is sent to live with her uncle on the Yorkshire moors and discovers renewed life, for herself and her sickly cousin, in bringing her dead aunt’s secret garden back to...

Cost: $15–$18

Where:
The Secret Garden
47 W Main St.
Middletown, DE  19709
View map »


Sponsor: The Everett Theatre
Telephone: 302-540-8561
Contact Name: Chris Everett
Website »

More information

Freud’s Last Session centers on a hypothetical meeting between legendary psychoanalyst Dr. Sigmund Freud and young, rising Oxford Don, C.S. Lewis, to his home in London on the day England...

Cost: $18 online, $20 at the door

Where:
Bootless Stageworks
1301 N Broom Street
Wilmington , DE  19806
View map »


Sponsor: Bootless Stageworks
Telephone: 302-887-9300
Contact Name: Rosanne DellAversano
Website »

More information

Regional artists Carol Tippit Woolworth, Catherine Drabkin, Pahl Alexander Hluchan, Colleen Randall and Dan Jackson explore the concept of place—physical, emotional and spiritual—in...

Where:
, DE

More information

Ditch the winter whites for a world of dazzling color at Longwood Gardens, where you can stroll through thousands of orchids in bloom. Kennett Square, www.longwoodgardens.org 

Where:
, DE

More information

Show More...
Show Less...

Pup-Purr-i...A little bit of everythng for pet lovers The PAWS for People 7th Annual Winter Conference is designed for pet enthusiasts, owners and all those who love animals.  Cost of admission...

Cost: $45 through 2.6; $50 after 2.6

Where:
Nemours A. I. du Pont Hospital for Children
1600 Rockland Road
Wilmington, DE  19803
View map »


Sponsor: PAWS for People
Telephone: 302-351-5622
Contact Name: Clarice Ritchie
Website »

More information

Our Winter Group Show features oil paintings by Rosemary Castiglioni, Jim Gears and Mary Ann Weselyk. Still-life paintings with subtle color variations by...

Cost: Free

Where:
The Station Gallery
3922 Kennett Pike
Greenville, DE  19807
View map »


Telephone: 302-654-8638
Website »

More information

The Philly Home Show will inspire your inner HGTV star at the Pennsylvania Convention Center in Philadelphia from Feb. 12–14 and 19–21. The show will feature highly interactive...

Cost: $13

Where:
Pennsylvania Convention Center
1101 Arch St.
Philadelphia, PA  19104
View map »

More information

What was behind the legendary story of King Midas and his golden touch? That is the question to be answered—not with chests full of gold, but with a spectacular array of ancient artifacts,...

Cost: Adults $20; seniors $18; students (with ID) $15; children (ages 6–17) $15

Where:
Penn Museum
3260 South St.
Philadelphia, PA  19104
View map »

More information

Guests can explore three floors of exhibitions in the Visitor Center, stroll along the river through dozens of historic structures from the Industrial Revolution, and explore the gardens and...

Cost: $0-14

Where:
Hagley Museum
201 Hagley Creek Rd
Wilmington, DE  19807
View map »


Telephone: 302-658-2400
Contact Name: Meg Marcozzi
Website »

More information

Explore some of the diverse ways that human beings have understood sex and sexuality, gender and gender diversity in this small but broad new exhibition, presented in conjunction with the 2015-2016...

Cost: Free with Museum Admission.

Where:
Penn Museum
3260 South St.
Philadelphia, PA  19104
View map »


Website »

More information

Create and innovate at Hagley! Enjoy a family-friendly festival of invention, creativity and resourcefulness in celebration of the Maker movement. It will feature demonstrations from area...

Cost: $0-14

Where:
Hagley Museum
201 Hagley Creek Rd
2
Wilmington, DE  19807
View map »


Telephone: 302-658-2400
Contact Name: Meg Marcozzi
Website »

More information

For more information, please contact: Dave Ruffner ​Rehoboth Beach Film Society 107 Truitt Ave. Rehoboth Beach, DE 19971 302-645-9095, ext. 4 administrator@rehobothfilm.com...

Cost: Free

Where:
, DE


Sponsor: Rehoboth Beach Film Society
Telephone: 302-645-9095
Contact Name: Jeri Kaplan
Website »

More information

This art exhibit features fine art works and three dimensional pieces that embrace the subject “red.” Artist are free to use their imagination and creativity, so works will include...

Cost: Free

Where:
The Gibby Center for the Arts
51 W Main St.
Middletown, DE  19709
View map »


Sponsor: The Gibby Center for the Arts
Telephone: 302-449-5396
Contact Name: Caroline Zeitler
Website »

More information

Hailed by The New York Times as "a young piano visionary" and "one of the leading figures in the current renaissance of performer-composers," pianist Michael Brown, a 2015 Avery...

Cost: $30. Free for ages 10-18 & accompanying adult. $10 for students 18 & older.

Where:
Bethel United Methodist Church Hall
Fourth & Market Streets
Lewes, DE  19958
View map »


Sponsor: Coastal Concerts, Inc.
Telephone: 888-212-6458
Contact Name: Edna Ellett
Website »

More information

The St. Elizabeth High School Alumni Association is hosting an art exhibition and auction on Saturday, February 20, 2016. The event will be held in the newly refurbished Grant Hall...

Where:
Grant Hall at St. Elizabeth Church
809 S Broom St.
Wilmington, DE
View map »

More information

Featuring Diane Monroe, jazz violinist in "What Is This Thing Called Freedom? The Transforming and Timeless Songs of Protest." Saturday, Feb. 20, 2016 at 7:30 p.m....

Cost: Free

Where:
Trinity Episcopal Church
1108 N. Adams Street
Wilmington, DE  19801
View map »


Sponsor: Jackson ImmunoResearch
Telephone: 302-652-8605
Website »

More information

A spoiled orphan girl is sent to live with her uncle on the Yorkshire moors and discovers renewed life, for herself and her sickly cousin, in bringing her dead aunt’s secret garden back to...

Cost: $15–$18

Where:
The Secret Garden
47 W Main St.
Middletown, DE  19709
View map »


Sponsor: The Everett Theatre
Telephone: 302-540-8561
Contact Name: Chris Everett
Website »

More information

Freud’s Last Session centers on a hypothetical meeting between legendary psychoanalyst Dr. Sigmund Freud and young, rising Oxford Don, C.S. Lewis, to his home in London on the day England...

Cost: $18 online, $20 at the door

Where:
Bootless Stageworks
1301 N Broom Street
Wilmington , DE  19806
View map »


Sponsor: Bootless Stageworks
Telephone: 302-887-9300
Contact Name: Rosanne DellAversano
Website »

More information

Direct from TAO’s successful, sold-out, world-premiere run at the Edinburgh Festival Fringe, this brand-new production, "TAO: Seventeen Samurai," stops at The Playhouse on its...

Cost: $33–$39

Where:
The Playhouse
1007 N. Market Street
Wilmington, DE  19801
View map »

More information

Ditch the winter whites for a world of dazzling color at Longwood Gardens, where you can stroll through thousands of orchids in bloom. Kennett Square, www.longwoodgardens.org 

Where:
, DE

More information

Regional artists Carol Tippit Woolworth, Catherine Drabkin, Pahl Alexander Hluchan, Colleen Randall and Dan Jackson explore the concept of place—physical, emotional and spiritual—in...

Where:
, DE

More information

Show More...
Show Less...
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