Life before and after endometriosis: The Shauna Fuller Story

Krysta Anderson, Gleaner Writer

Shauna Fuller is the director of information technology and special projects at Kingston Bookshop. She never thought that her relatively calm life would suddenly be disrupted by excruciating pain, missed diagnosis and surgical procedures.

Fuller told Outlook, "I could barely walk up the stairs and I was gasping for air. When I went to the doctor, he told me I had asthma and gave me an inhaler and some tablets. I thought, 'How could I have developed asthma at 29 years old?' A few weeks passed and I was very lethargic and I couldn't walk more than 10 feet without stopping for a breath. I felt like I was choking every time I laid in bed."

Fuller became convinced that her symptoms had nothing to do with asthma. Her condition was exacerbated and the pain was so unbearable that she was rushed to the hospital and was immediately admitted. It was then that she was told that she had spontaneous pneumothorax, commonly known as a collapsed lung.

Missed diagnosis

She surmised that her smoking had finally caught up with her. After suffering many painful medical procedures and lengthy stays in the hospital, she decided to seek medical advice in Florida. There it was revealed that her lungs had collapsed over a year before, and she had to undergo surgery. "I woke up disoriented, in pain and unable to speak, because I was intubated, with a large tube down my throat." The doctor told her that her lung was the size of a tennis ball and tightly wrapped in mucus. For 10 days, she underwent numerous tests and X-rays.

The surgery was a success, but they still could not tell her why her lungs collapsed, and she was released.

A weaker and still undiagnosed Fuller had to take a few months off from work. "I had to be retaught how to walk, and had to use an incentivespirometer- an awkward-looking tool used to rebuild my lungs. My doctors feared that my lungs would collapse at any given time, for reasons beyond their understanding."

A few of her friends who were doctors checked in on her and suggested that she look into endometriosis. She visited a gynaecologist in Florida who told her that theory was not possible. She returned home and after months of tests and doing her own research and laparoscopy, it showed that she had stage four endometriosis.

After the
Diagnosis

Fuller told Outlook that
since her diagnosis, her quality of life has improved vastly. "After
surgery, I was placed on hormonal treatment which really helped me with
the symptoms ... particularly the pain. I still experience intermittent
pain, but it's definitely not as bad as it used to be. Before surgery,
on any given day, I could be crippled with pain, unable to move for
hours. That doesn't happen anymore."

She explained
to Outlook that endometriosis is a conditon in which
the cells of the lining of the womb (uterus) are found outside of the
uterus.

"Every month, the endometrium - uterine lining
- builds up with blood cells and other chemicals to prepare for
pregnancy. When pregnancy doesn't occur, the endometrium sheds the blood
and women have a period. A similar reaction takes place in these stray
cells (endometrial implants) that have found their way to the pelvic
area and other areas of the body such as the skin, eyes, spine, lungs
and brain. They react to the hormones, break down and bleed, but the
blood and tissues that they shed have no way of leaving the body. This
causes internal bleeding, breakdown of the blood and tissue from these
sites, and inflammation. This can cause extreme pain, infertility, scar
tissue formation, adhesions, and bowel
problems."

There are four stages of endometriosis,
with stage four being the worst. "My doctor explains it like this,
'imagine a bunch of balloons together and you pour glue all over it'.
That's what my pelvic area looked like when they diagnosed me. All my
organs were stuck together."

Fuller's endometrial
tissues are still on her diaphragm and while she can be treated, there
is no known cure for the disease.

Through her
experience, Fuller has become a beacon of light for individuals going
through endometriosis and other diseases.

She has
dedicated her life to educating Jamaican women about the disease. She
started the B.A.S.E. (Better Awareness And Support of Endometriosis)
Foundation, which was incorporated on March 1. The main objective is to
encourage awareness among women, the general public, and provide
financial and moral support, as well as information to women who suffer
or could be suffering from the disease. "We have been in very close
dialogue with the management team of the Hugh Wynter Fertility
Management Unit. In fact, we have had to refer medical questions that
we've received on the website to these doctors. They are dealing with
this disease and its impact on women, so we hope to support each other
to spread the awareness, because we all have the same objectives -
better awareness, early detection, and support for these
women."

Lady Patricia Allen is the patron of the
organisation and the month of March is Endometriosis Awareness Month.
Fuller notes that through various mediums persons are becoming aware of
the disease and becoming volunteers.

Since her ordeal
that began in 2009, Shauna Fuller, now Clarke, continues to enjoy
everything her life has to offer, with her husband, family and
friends.

Endometriosis

• The disease can affect females as
  young as 15 years old.
  
• Symptoms include: painful menstruation,
  intermittent and/or chronic pelvic pain, bowel or urinary disorders,
  gastrointestinal and urinary tract distress, rectal pain, painful
  intercourse, severe cramps lasting more than one to two days,
  infertility, loss of pregnancy, and autoimmune-related
  disorders