April is Adenomyosis Awareness Month. Ado-what-o? A disease, similar to Endo; some say Ado is the cousin to Endometriosis. And many people with Endo also suffer with Adenomyosis. So, I figured I’d spread a bit of awareness of Ado during this month and learn something in the process.
A few folks who attended our Endo walk suffer also from Adeno. And one who showed up to our last Endo support group meeting suffers from Ado (but not Endo). It’s a term I’m beginning to hear a lot more about. But, what is it?
So, if you’re reading this you probably already know a little bit about Endometriosis. Recently at our support group meeting, the question of iron levels and anemia came up. With all that bleeding, can we suffer from anemia or an iron deficiency?
And, again, the topic of iron levels and Endo came up at our Endometriosis Awareness & Support Walk: could the blood left in my pelvic region from shedding Endo have caused the “abnormally high” iron levels during a blood test?
Kelly was 15 years old when she was diagnosed with Endometriosis. Nearly a decade later, she shares her journey with us.
Kelly’s Journey: Hi! My name is Kelly; I was diagnosed with endometriosis while I was in high school at the age of 15. I had problems with my period but was too scared to tell my mom because I didn’t want to go to the gynecologist. Needless to say, she eventually found out and I was forced to go. My period would last a month at a time, then a week free, then it would be back. While this was happening, I was losing tons of blood so I would see my primary doctor to be put on iron pills because they didn’t know how or why I was losing so much blood. Like I said my mom found out and I was put on birth control which regulated my period.
Kyla is 34-years-old. Nine weeks ago she had a total hysterectomy and is struggling with a potential diagnosis of Endometriosis and needs our help…
Kyla’s Journey: Hello everyone .. I recently had a total Da Vinci hysterectomy with bilateral tube removal due to several years of horrible pain with my monthly cycles and irregular bleeding with painful intercourse. I have had a very rough recovery, suffering 2 large hematomas and am still slowly recovering at 9 weeks post op. I have suspected for a long time that I had/have endo. My Dr. Has not discussed her findings during my hysto. ..she has only told me that she removed extensive scar tissue.
You may have heard that you can’t see Endometriosis on an imaging study. Well, this is true…BUT, it’s not to say that imaging studies are useless in helping to suspect/diagnose Endometriosis. They can spot things that may indicate Endometriosis is present…One such tool is a transvaginal ultrasound (aka TVU, TVS, or TVUS).
Have you ever heard of, or had, a transvaginal ultrasound? Let me tell you : it’s not the ultrasounds you see in the movies. No cold cream squished onto my belly with a technician rubbing a scanner along my abdomen. Nope…imagine if you will : squishy cold cream rubbed onto the tip of a rather large probe…and said probe is shoved up your hoohaw (yes, that’s a technical term). It allows a better look at your organs around your feminine bits. It’s not the most comfortable procedure in the world…and can downright hurt at times. But…
Hailey lives in Okalahoma. When she was 22 years old, she received her Endometriosis diagnosis. Now, over a decade later, she offers some stellar words of advice!!
Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.
As you may know, Endometriosis is not limited to just your reproductive bits & pieces. It can implant, grow, and fester in many places; the bowel included. But what does that mean? How do you know if it’s on your bowel? Today’s blog will go into that…Read on, dear Reader…read on. Word of warning : I will be using words like fart and poop! Why dance around the subject with flowery words when I feel like I’m a giggly 12-year-old girl?
It is estimated that between 5-15% (and some even doctors guess it’s actually between 3-34%) of women with Endometriosis suffer from Endo on their bowels. Bowel Endometriosis may affect the colon, the rectum, the large intestine, the small intestine, the colon, or the sigmoid colon. The implants may be physically located on the bowels, or even just located adjacent to them in areas like the Pouch of Douglas, uterosacral ligaments, or rectovaginal septum. The close proximity of the inflamed and irritated lesions may be enough to induce bowel Endometriosis symptoms. And these symptoms may also be caused by adhesions pulling or twisting the bowels.
Charlie lives in the UK, and was diagnosed with Endometriosis when she was 16. Now 19, and two surgeries later, her pain is already returning. This is her story.
Charlie’s Journey:
So, I guess we should start at the beginning.
This post will feature words that usually have a stigma behind them or make some people feel uncomfortable such as ‘periods’ so look out.
Peggy & Roy cutting their birthday cake – July 2015
You may have heard about Peggy Santa Maria on CBS-TV, LAor read about her in the Contra Costa Times or various online blogs. I bumped into the CBS-TV LA link, which was aired on their 5pm news on December 25, 2015, and just had to know more about her. The e-mail address on their site didn’t work, so I reached out to my friend, Margaret, at The Vital Health Institute, who got us in touch.
If you don’t know about Peggy and her husband Roy, they host The Endo Inn. The what? As Roy says, “Stay at the Endo Inn while you have your Endo taken out.” They have converted their guest bedroom into The Endo Inn, a room where a woman and her guest can stay while she recovers from surgery for her Endometriosis, free of charge and for several weeks, if needed. This includes access to all of the house for cooking, doing laundry, entailing everything that covers “living,” and The Endo Inn becomes “their home.” Roy and Peggy have been doing this since January 18, 2000.
More about The Endo Inn shortly…but right now I want to focus on the beautiful people behind it: Peggy and Roy. I had the pleasure of speaking with Peggy several days ago, spending over an hour on the phone with this purely delightful woman.
Bloomin' Uterus 