I'm a little late to week 3 because I have been busy working on two projects: the support group Endo Sisters Healing Together, and an Endometriosis Awareness Music Project, that will combine original songs with awareness videos aimed at teen outreach and education. I've been a busy bee, also organizing a Boston FlashMob...but here it is! Week 3's assignment...letter to my Congresswoman!
I hope this inspires you to write your own letter to your representative! To find yours, head over here!
February 6th, 2014
Congresswoman Niki Tsongas
1607 Longworth
House Office
Building
20515
Dear Congresswoman Tsongas,
My name is Kelsey, and I have stage IV endometriosis. In
the last year, I have spent the majority of my free time researching
endometriosis, and becoming active in the endometriosis community. I have volunteered
for various awareness projects, including a video documentary. I also recently
co-founded Endo Sisters Healing Together, an online and in-person support group
for New England-based women with endometriosis. I am writing to you today to
tell you my story, and invite you to an amazing event happening in Washington , D.C.
Endometriosis is a very common, misunderstood, and
under-diagnosed disease that affects 1 in 10 women, or roughly 176 million
women worldwide. In women with endometriosis, cells similar to the lining of
the uterus, the endometrium, are displaced during fetal development and grow in
other places in the body. These displaced cells, or lesions, can create their
own estrogen supply, essentially feeding themselves. As the disease grows and
matures, it develops nerve and blood supply. These complex glands and stroma
react to cyclical hormone changes, causing inflammation, sticky bands of scar
tissue called adhesions, which can cause anatomical distortion and organ
dysfunction, and debilitating pain daily, with periods, and with intercourse.
Endometriomas, cysts formed from endometriosis, can grow on ovaries, damaging
the tissue around it. These do not resolve on their own, can cause extreme pain
and bleeding if they rupture, and require surgical excision. On average, it
takes a woman with endo eight years to get diagnosed.
One of the biggest problems with endometriosis is the delay
in diagnosis. On average, a woman with endometriosis suffers eight years of
being told her pain is all in her head, that pain with periods is normal, and
that there is nothing wrong with her. In reality, endometriosis can cause real
damage to not only reproductive organs, but every other organ in the pelvis.
Endometriosis lesions and adhesions are commonly found on the uterus, ovaries,
bladder, bowel, peritoneum (lining of the pelvis), and are also found on the
ureters, kidneys, and rarely in the heart, lungs, and brain. Endometriosis
causes debilitating pain, but can also lead to life-threatening complications
such as bowel obstructions, kidney failure due to retroperitoneal fibrosis
(scar tissue growing on the ureters), as well as impacting her ability to
function daily.
The wonderful news is that with early diagnosis and complete
excision, young women need not suffer for years in pain, and endure hormonal
suppressive treatments that come with their own damaging side effects. There
are only 100 excision surgeons in the US skilled enough to remove disease
effectively. With excision, the chance of recurrence is very small, because
they cut out the disease like a cancer, rather than burning the surface of the
disease. The common technique used by the remaining 52,000 gynecologists is
called ablation, which leaves disease beneath the burned surface that can
continue to grow and come back. Endometriosis is not treated through hormonal
suppression, hysterectomy, menopause, or pregnancy. The only effective way to
remove disease is through excision surgery.
It took me nearly 15 years, countless doctors and years of
hormonal suppressive therapies to begin on the path to true healing. Birth
control pills, progesterone therapy to shut down my ovaries, and Lupron caused
symptoms including medical menopause, hot flashes, night sweats, extreme weight
gain, increased blood pressure and higher cholesterol, and depression. The
worst symptoms came with Lupron, a drug developed for prostate cancer, which
caused hair loss, ovarian dysfunction, and bone density loss in my spine. This
could have been avoided if my doctors had been more educated in the origins and
effective treatment options for my disease. I continue to experience some long
term side effects from these drugs, years later.
After 15 years, at the age of 28, a seven centimeter complex
cyst finally convinced my doctors to perform a laparoscopic surgery. I had been
begging for surgery since they first suspected endometriosis when I was 22. The
surgeon assured me that she would use excision, but in reality, she merely
burned the surface of the disease. Just six months later, my pain was back, and
I was struggling to get pregnant. After discovering that I was not ovulating, a
fertility specialist prescribed Clomid, and my life changed. I developed a five
centimeter endometrioma on my right ovary, which ruptured. From that day on, my
life changed dramatically. I was in extreme, daily pain, causing me to drop out
of graduate school and spend the majority of my time in bed in agonizing pain. It
felt like steel rods were in my body, and I could barely move. However, my
doctor in Massachusetts
refused to refer me for another surgery, saying it was too soon for my
endometriosis to return. She threw her hands up and told me to try in-vetro
fertilization. How could I be a mother when I could barely function from day to
day? I needed help.
Finally, in June 2013, I traveled to St. Louis to have my second laparoscopic
surgery. This excision surgery with Dr. Patrick Yeung, Jr., occurred just 11
months after my first surgery in Boston .
Dr. Yeung found my pelvic organs completely adhered by endometriosis and
adhesions. During a six hour surgery, 18 separate tissue samples, confirmed by
pathology to be endometriosis, were found on my bladder, uterus, both ovaries,
peritoneum, appendix, ureters, fallopian tube, left round ligament, cul-de-sac,
pelvic brim, bilateral ovarian fossa, bilateral utero-sacral ligament, and
recto-cervical space. I also had endometriosis on my bowel, and significant
retroperitoneal fibrosis on my ureters. If left untreated, these conditions
could have led to life threatening bowel obstructions or kidney failure.
Endometriosis is truly an epidemic. It is more common than
AIDS and cancer. It is estimated to cost $119 billion annually in healthcare
and loss of productivity in the workplace. Endometriosis causes severe damage
to internal organs, and yet takes an average of eight years to diagnose. The
majority of surgeons can not effectively remove the disease, and so women are
put on band aid pain solutions, like hormonal suppression and narcotic pain
medications. They struggle to function daily, miss work, drop out of school,
and feel hopeless. You can help us make a change.
I hope you will join me in telling the world that it is time
to end the silence!
I have also enclosed a copy of my full story of living with
endometriosis.
For more information, please visit:
www.millionwomenmarch2014.org
www.endocenter.org
www.endofound.org
www.centerforendometriosiscare.com
endometriosisfoundation.org
Thank you for your consideration, and I hope to see you on
March 13th!
Sincerely,
Thank you so much Kelsey for being an endo advocate! I too think this world needs a serious wake up call to just how devistating this disease really is! Its so hard to do when your lucky just to be able to get out of bed! We need more women to spread awareness any way we can! I truly appreciate your dedication and hopefully soon endometriosis will be recognized and sympathized as much as breast cancer!
ReplyDeleteThanks Catlin! I'm going to keep doing my best! :)
ReplyDelete