In all of the many books and webpages I’ve read since my Endometriosis diagnosis, I’ve read the same stats over and over. 1 in 10 people born with a uterus will develop Endometriosis. 176 million affected worldwide. But where did those stats come from? When were they last updated? How do they track it?
After scouring the web, I finally found some of the sources of those figures, but nothing that actually gives me a current number of diagnoses around the world today:
But the term “women” is no longer an accurate reflection regarding the statistics. There are non-binary, transgender, others who do not identify as women, and even cis-men who suffer with Endometriosis.
Sunday is Reader’s Choice Day! If there’s something you’re curious about with Endometriosis, treatments, my journey, etc., please feel free to comment below! I’d be happy to do some research and write about it 🙂
When I was first diagnosed in June of this year with Endometriosis, I searched for art to make me feel more beautiful. I needed something… And I found “Sinta” on Etsy by GiGiMarie Stationary. After contacting the artist and asking if the painting could be placed onto a journal and explained why, we bonded : GiGi painted “Sinta” after she learned of her own diagnosis with Endometriosis. We all cope in our own ways, eh?
GiGi custom-ordered me a journal with her artwork on it. And her painting also hangs in my living room, a daily reminder that we are still beautiful. And we’ve been friends ever since.
So before I started blogging, I was keeping a daily journal of my daily diet, activities, exercise, symptoms, and pain levels. I must admit, I’ve been bad these past 2 weeks (more blogging than journaling!). But I will get back into it : for ME! I don’t do the whole “Dear Diary” thing I did when I was a kid, and the entries are only about a page long each, but it sure get’s the job done!
If you haven’t tried it, it’s fascinating! You keep track of your daily meals, beverages, snacks, activities (if they’re beyond your normal day), exercise (if anyyy), symptoms, and pain levels (and locations), and if needed: what pain killers (and doses) you had to take that day. Below is an example of a “Pain Diagram”, where you log the location and severity of pain. I doodle in my journal, or just note something like: “Pain: 4/10; Location: lower back.” My pain scale is 1 – 10, 1 being the lowest, 10 the most intense.
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.
I’ve been advised that once my Lupron Depot treatments are concluded in January, I will be starting a continuous birth control pill. This is in the hopes to continue to suppress my monthly period, and theoretically my Endometriosis symptoms. Endometriosis is “fed” by our Estrogen levels. Doctors may not know what causes Endo, but they mostly agree that it feeds and reacts to our Estrogen levels, as well as the influence of xenoestrogens (environmental estrogens).
But How & Why is it expected to work? I totally like to know the science behind things…
I didn’t know my Stage level and had to ask my doctor. My Endometriosis was Stage 4, the most severe it can get. Probably because it was brewing inside me undetected for nearly 2 decades. Ugly disease. (Update: As of June 6, 2019, I’ve now had a total of four excision surgeries; each one classified my illness as Stage 4).
The interesting things about Stages: the Stage Level doesn’t necessarily dictate our symptom or pain levels. Someone with Stage 1 can have severe pain, while someone with Stage 4 may not even realize it. Just one more mystery o’Endo.