Ami was diagnosed with Endometriosis when she was 47 years old. Now a year later, she shares with us:
Ami’s Journey: One year ago I experienced a worsening pelvic prolapse (following a uterine prolapse years ago) and simultaneous debilitating sciatica. All doctors insisted the two were unrelated. Although muscle atrophy contributed to both. I underwent several months of physical therapy and 2 epidural steroid injections to treat the sciatica and then prolapse repair in December.
So, Wednesday is the big day. I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed. Figured I’d share it in case you didn’t know.
Endometriosis lesions (also called implants) grow wherever they damn well please inside the body. My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow. However, much like an iceberg, more than just the visible tip exists beneath the surface. Some people liken it to an invasive cancer, although not fatal.
Marixsa is a fellow blogger and Endo advocate. She was diagnosed when she was 28 years old. Now 33, her story is a heartbreaking, yet encouraging, one. Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage. Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination. She continues to fight, for herself and for other EndoSisters. And I hold her among my heroes.
Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:
There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis. And it’s estimated that 5 million in the United States have Endometriosis. 1 in 10 supposedly have, or will have, this disease. One. In. Ten.
An incurable, recurring disease which causes pain and infertility, among many other symptoms. A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both. And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before. And the only tried and true way to diagnosis the disease with with surgery!
So one thing hit me today. This disease is a driving economic force! What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices. If you live elsewhere and are curious, I encourage you to figure this out. For all of you living in the States, let’s find out together!
Lauren was diagnosed in 2011. She has had ongoing battles with fertility, miscarriages, and a battle for disability benefits. Her story is a heartbreaking one.
Lauren’s Journey: I first started going to South Jersey Fertility in February 2010, to help conceive a pregnancy. On August 4, 2011, I started to develop excruciating pelvic and abdominal pain. The pain was so bad, I had to go to the emergency room.
On September 16, 2011, I had a laparoscopy, which found classic endometriosis lesions of the left pelvic sidewall and a single band-like adhesion involving the right ovary to the uterus. There was a large peritioneal window under the right ovary. This is consistent with endometriosis.
The first recorded vaginal hysterectomy was in the 2nd Century AD, performed by Soranus of Epheus for a prolapsed uterus. During the 18th Century, there was a 90% mortality rate for women who underwent hysterectomies. And in 1843, Dr. Clay performed the first successful subtotal hysterectomy in Manchester, England, although the poor women died several days after her surgery. In 1847, chloroform was introduced as an anesthesia during surgeries, but due to it’s toxicity, surgeries had to be performed within one hour. In 1853, Dr. Burnham of Massachusetts, performed the first successful abdominal subtotal hysterectomy with a surviving patient. Interestingly enough, it was somewhat accidental: while excising an ovarian cyst, his patient vomited (there was no anesthesia) and the force of her vomiting pushed the uterus out of the abdominal incision. Unable to return the uterus to the cavity, Dr. Burnham was forced to remove it. During his next 15 hysterectomies, he only lost 3 patients. In 1878, German doctor, Freund, introduced the first reproducible “simple” hysterectomy; and in 1898, Austrian doctor, Schauta and his student Wertheim, performed the first successful radical hysterectomy for uterine cancer. In 1929, Dr. Richardson of the United States performed the first total abdominal hysterectomy. France introduced the gynecological laparoscopic surgery in the1940s; however, the first laparoscopic hysterectomy was not performed until 1988 by Dr. Reich. The DaVinci robotic laparascopic system was approved by the FDA in 2000 and the first robotic laparoscopic hysterectomy was performed in 2005.
In June of 2014, my surgeon opted to perform a robotic laparoscopic surgery to remove the cysts from my ovaries. Little did we know, the surgery would progress into an excision surgery to remove Endometriosis implants that we didn’t know existed inside. A traditional laparoscopic surgery is performed through a rather large incision in your abdomen, while robotic is done through small “ports” (incisions) where robotic tools are inserted and the doctor operates at a remote station, controlling the wee robotic arms. AND there’s pictures!
The surgeon’s plan was to go through my bellybutton, extending it a little bit with a small incision, remove the cysts, and close up my bellybutton (a single incision laparascopy). Voila: done. However, it was discussed that he may need to open up multiple ports if things “weren’t as they seemed” once inside (the middle image below). Which is exactly what needed to be done. The robotic surgery avoided the traditional, large incision (first image below).