Mollie was diagnosed with Endometriosis when she was 20. Now a year later, she shares her journey with us.
Mollie’s Journey: It all seems full circle to me after about 7 years.
At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.
One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?” So, here I go off to learn things and hopefully share a bit of that newfound knowledge. And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).
Where’s the Pudendal Nerve?
The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas. There’s two: a right and a left pudendal nerve. One or both pudendal nerves may cause issues, which we’ll get into right now!
A bird’s eye view of the pelvic floor muscles
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.
We made it through another week!
Today’s quote comes from Lara, a fellow blogger. She suffers from Endometriosis, Adenomyosis, Pelvic Floor Dysfunction, and Interstitial Cystitis. And I fell in love with her writing…With permission, she allows me to share it with you today. Even if you don’t suffer with the pain and issues of these conditions, her words are powerful to every struggle:
“But I won’t give up. Not today. Not tomorrow. I’ll always fight my hardest to embrace my normal. To not let it anger me, but to let it empower me. Because what other choice do I have? Nada.”
And have a wonderful weekend.
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.
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!
Ginny was diagnosed when she was 31. Now 37, Ginny lives in Arkansas with her wonderful husband. Despite this happy ending, she continues to suffer from the pain and effects of Endometriosis, and continues ongoing treatment…and a hunt for answers.
Ginny’s Journey: My first hospitalization for severe abdominal pain happened at age 16. The intensity of the pain and internal bleeding had caused my blood pressure to drop to 70/30 and my body to go into shock. It was the first of many ER visits for similar symptoms but the only one taken seriously enough to admit me to the hospital overnight.
Courtney lives in Canada, and was diagnosed with Endometriosis a year ago, when she was 28 years old. Now 29, Courtney makes beautiful jewelry and donates a portion of her sales to Canadian charities that deal with Endometriosis and other women’s health issues.
Courtney’s Journey: I’m a pretty private person for the most part, and the thought of sharing my personal medical history on the internet was something that took a great deal of careful consideration on my part. But the more research I do, the more I find that the reluctance of women to share their stories is in part due to the fact that they have often spent years repeating their very personal medical details and symptoms to doctor after doctor, without getting the treatment they need. In many cases, these women are told that this is their “burden as a woman” or worse, not having their concerns taken seriously at all and told that – since the doctor can’t see anything wrong – it must be “in their head”. As personal as it is, I think it’s important for women who feel comfortable enough to do so, to share their story; if not online, at least to their family and friends, so that they may help raise awareness about this disease and help women get the care they deserve!