L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.
L.’s Journey: This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.
Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia. Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles, but also shares her victories.
Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.
One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about. So what happens when I know nothing? I research!
What is a polyp?
A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above). They’re most commonly found in the colon, but can be found in the uterus (known as uterine or endometrial polyps), cervix, stomach, throat, nose, and ear canal. There can be just one polyp…or there can be lots.
Have you heard of pelvic floor dysfunction? I hadn’t; not before meeting women who suffer from it. And I’d never heard of a pelvic floor before that, either. We’re going to focus today on pelvic floor dysfunction in women (although men can get it). But what is it?
The pelvic floor is made up of a lot of little muscles, nerves, and tissues all working together for your body to function. Imagine it as a tightly-woven basket at the underside of your pelvis, sweeping from front to back, and side to side. Not only does it support the organs of the pelvis, but it also wraps around the urethra, rectum, and vagina. When these muscles, nerves, and tissues stop working properly (they are too tense or too lax), it’s called pelvic floor dysfunction. It can cause pain and difficulty with urination, defecation, intercourse, and lower back pain.
This morning I found out Surgery No. 2 is imminent, thanks to my Endometriosis. The date will be sometime in September; I’ll know more in a few days. I met with my doctor today to discuss my ongoing symptoms and worsening pain. After a long talk and history, an a transvaginal ultrasound (OUCH), and another looooong talk in his office: he felt it’s time to peek under the hood. I knew going in today that the surgical option was likely it. I wish we could tell if it was present in other ways. But nope. My CT was normal. My US was normal. But, as you and I both know, it may not always show up on imaging studies. My symptom history is what convinced him:
Alexandra is a fellow blogger out of Brisbane, Australia. Today she share’s her Endometriosis journey with us. She was diagnosed when she was 20, and now five years later here she goes, starting us out with a *bang*:
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?
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.