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
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
on March 13th, 2014. The Million Women March for Endometriosis is
going to be a monumental event where women all over the world will be gathering
in their nation’s capitals to advocate for endometriosis awareness, education
for medical professionals, early screenings, and allocated funding for
endometriosis. I want to share my story with you to tell you why this day is so
important to hundreds of millions of Endo Sisters around the world. 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
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:
Thank you for your consideration, and I hope to see you on March 13th!