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Allison Dean-Woody is a practice manager at WakeMed Primary and Urgent Care – Fuquay-Varina. She believes in fostering a welcoming environment where patients feel heard and respected — since she knows all too well the difference this can make. As someone who lives with the hard-to-diagnose condition — endometriosis — she advocates for a patient-first approach.

Endometriosis Explained

Endometriosis is the presence of endometrial glands and stroma (tissue) outside the uterus. Normally, this tissue is located in the uterine lining. When it travels outside this area, it ends up in uterine connective tissues, the ovaries, fallopian tubes, the bladder, the bowel and, rarely, distant locations, such as the lungs or nervous system.

Endometrial glands and stroma behave just like the lining of the uterus — the tissue thickens and bleeds over the course of each menstrual cycle. Since there’s no exit pathway for material that travels elsewhere in the body, the trapped tissue generates inflammation, scar tissue, adhesions and/or cysts.

The Onset of Symptoms

Allison’s symptoms began during her initial menstrual cycle. She experienced severe pain, bloating and irregular periods. By 13 years of age, she experienced her first hospitalization from endometriosis.

She explains, “My first ovarian cyst ruptured, and I ended up in the emergency room due to the pain. I remember being in the fetal position, thinking I was dying.”

Medical providers determined she was suffering from the side effects of menstruation and sent her home.

Initially, Allison had to deal with the agony of endometriosis only during her menstrual cycle, but before long, the impact became pervasive.

“As time went on,” says Allison, “the pain became constant, and more and more symptoms began to arise.”

Diagnosis After Years of Suffering

While a college student in 2003, Allison, in desperation after months of bladder pain when voiding, visited the college health clinic.

“This provider, luckily, was a former gynecologist who recognized I needed further help. She referred me to a gynecologist in the next town over whom she trusted to be aggressive in diagnosing my issues. He performed my first laparoscopic ablation procedure.”

During laparoscopic ablation, Allison’s gynecologist recognized endometrial like tissue outside her uterine wall. Her bladder and uterus were also fused together with scar-tissue. Through a slender viewing instrument (laparoscope) he’d inserted below her navel, he used instruments to burn off the disease and adhesions.

Allison notes, “I’d had multiple ultrasounds and several magnetic resonance imaging (MRI) scans due to pelvic pain prior to my first laparoscopic ablation.”

It took the laparoscope to find the root cause of the problem. Afterwards, Allison was put on a hormone suppression medication to suppress the pituitary gland signals in the brain that message the ovaries to stimulate estrogen production. This seven-month prescription worked to help slow the growth of endometrial like material. Yet, her adhesions and lesions only worsened throughout that time, causing her ongoing pain.

Endometriosis Regrowth Followed by More Surgery

It wasn’t long before severe pain required additional treatment.

“I have had multiple surgeries since,” reveals Allison. “I finally traveled to the Center for Endometriosis Care in Atlanta, Georgia where they performed a long excision surgery as well as removed my right ovary and my appendix because of the damage endometriosis had caused.”

Prior to excision surgery, Allison was prescribed an intrauterine device to lessen the symptoms. Eventually, however, more surgeries followed.

“I have since had a full hysterectomy (due to adenomyosis), removal of my left ovary as well as four hernias repaired owing to ongoing pain and pelvic floor dysfunction. I regularly attended pelvic floor physical therapy for several years and still attend monthly to manage pain and related symptoms.”

Allison’s condition is unique in that fewer than 10% of patients who undergo excision surgery at the Center for Endometriosis Care experience a return of the condition. Unfortunately, she is one of the few whose endometriosis flared again — though to a lesser degree than initial onset.

How Endometriosis Has Impacted Allison’s Life and Fertility

Up to half of women who struggle with endometriosis will find it difficult to become pregnant. Since Allison suffered with severe endometriosis and lost all of her reproductive organs before she turned 35, she was never able to have biological children.

Looking on the brightside, Allison reflects, “I was unable to have a biological child with my husband; however, he has two girls from a previous marriage, and it has been fun to be a part of their lives.”

The Trauma of Endometriosis

While some people may think of endometriosis as an unfortunate side effect of menstruation, for Allison and many other sufferers, the symptoms have been far-reaching. Endometriosis is not only a whole-body disease, but it can also take a toll mentally, emotionally and financially.

“Endometriosis has not only caused me pain almost daily, it has also meant I will never experience pregnancy and all the moments that come with it. It still causes me fatigue, bloating, pelvic floor pain, bladder pain, bloating (endo belly) and gastrointestinal issues. I have had nine surgeries related to endometriosis. I still struggle with trauma from visits with doctors who didn’t listen to or believe me or who belittled my pain and other symptoms. Also, the financial impact of multiple surgeries, visits to specialists and travel to undergo surgery and get proper treatment are lasting.”

Despite the challenges, Allison still sees the positives in the midst of it all.

“Today, I am better. I manage fairly well as I have developed a lot of coping strategies over the years. I’ve also found a sense of purpose in this struggle by helping other women who are going through an experience I know all too well.”

A Word for Women Living with Endometriosis

Allison has words of comfort and encouragement for women living with unexplained menstrual symptoms or who have been diagnosed with endometriosis.

“Don’t give up; you’re not alone. Others are going through the same thing. It’s not normal to vomit, pass out or miss school or work because of pain. Do not let someone tell you it is simply part of being a woman. There are good doctors who will listen to you and help you. There are quality resources, including the documentary, Below the Belt, which is amazingly informative. Advocate for yourself and don’t give up fighting for you because you deserve to have a better quality of life.”

According to the World Health Organization, 10% of women have endometriosis. It takes years, on average, for women to receive a diagnosis and appropriate treatment.

Where to Seek Care

If you are concerned that you may have symptoms of endometriosis, we encourage you to schedule an appointment with your primary care or OB-GYN provider. In the event of an urgent need, visit urgent care. If your situation is life-threatening, please go to your nearest emergency department.

Symptoms of endometriosis include the following:

  • Pain in the lower abdomen, lower back, pelvis, rectum or vagina
  • Pain during sexual intercourse
  • Pain while defecating or urinating
  • Abnormal menstruation, heavy menstruation, irregular menstruation, painful menstruation or spotting, bloody stool during menstruation
  • Constipation or nausea
  • Abdominal fullness, bloating or cramping
  • Infertility

Disclaimer: The advice of individual medical providers/staff serves as guidance from the specific provider/staff and is not intended to establish standards of clinical practice or rules of law for WakeMed Health and Hospitals.

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