Dannielle was diagnosed with PCOS when she was 16 and Endometriosis when she was 18 years old. Now 19, she shares her Journey with us. And she is a loud voice for self-advocacy!
Dannielle’s Journey: Hello, my name’s Dannielle and honestly even though I’m young I kinda figured there had been something going on with my body.. in addition to endo, I was diagnosed with Polycystic Ovarian syndrome at 16 as well. The initial process was confusing before I had ever been diagnosed with either PCOS or endometriosis, because after seeing multiple medical professionals, some were saying it was PCOS, and some mentioned endo, only to later on figure out I have both diagnoses now.
Shadoegirl19 was just 16 years old when she learned she had Endometriosis. Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement. Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine. However, she remains incredibly strong and supportive.
Shadoegirl19’s Journey: At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).
Here I go again, once more intrigued by Endometriosis growing in odd places inside the body. Today I’m going to focus on the appendix. I’ve read that many women have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis. But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.
Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo. Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery. Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix. But…knowledge is power.
On December 8, 2016, we had the opportunity to reach out to our local Marine Corps community and teach a workshop about Polycystic Ovary Syndrome, or PCOS.
A few months ago, I received an email from the Marine Corps Community Services Exceptional Family Member Program for the Marine Corps Recruitment Depot/Western Recruiting Region here in San Diego, California. They wanted to know if Bloomin’ Uterus could coordinate a PCOS Workshop for their interested enrolled members, which included staff, service members, and/or family of service members. Of course, I jumped at the chance!
I reached out to Dr. Mara Killen, a nurse practitioner at San Diego Women’s Health, my doctor’s office. The staff at San Diego Women’s Health have been so incredibly helpful in my Endometriosis diagnosis, treatment, and journey and I’m so grateful that Dr. Killen agreed to speak at the PCOS presentation.
So for the past several months, I’ve been using flax milk instead of coconut milk in my tea, cereal, and protein shakes. I’d grown tired of coconut milk, and am also wanting to lose an unwanted and “sudden” 20-pound weight gain. It really wasn’t sudden, I just hadn’t noticed it until none of my pants fit…grrrr.
I’d read the flaxseed (also known as linseed) was a phenomenal source of Omega-3 fatty acids, protein, and fiber, and people boast of it’s anti-inflammatory properties. So I was ecstatic to try it out and actually not mind the flavor of flax milk! It’s gotta be good for my Endo, right?
That is, until this weekend, when someone on an Endo group on Facebook responded to my flax milk post that flax is bad for Endometriosis. Why? She didn’t say until several posts later, but it looks like flax seed and flax oil mimic estrogen, much like soy… *grumble grumble grumble*
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*:
I was contacted by one of our readers who shall remain anonymous. She suffers from Polycystic Ovary Syndrome (PCOS) and Bipolar Disorder. Her OBGYN suspects she has Endometriosis; however, she had to return to college out-of-state and wasn’t able to have her diagnostic surgery. In the meantime, her physician is encouraging her to remain on birth control pills to suppress the possible Endo symptoms. Her symptoms are worsening…
She had heard that there may be a link between Endometriosis and Bipolar Disorder, and that it may be difficult to treat both at the same time due to complications with the medications interacting with each other, or even cancelling the medicinal effects of the pills.
One of my readers recently contacted me asking if I could do some research for her. Her physicians suspect she may have hyperplasia. What is that, you may ask? It’s the changing or enlarging of cells or organs which may develop into cancer. Specifically, she is undergoing tests to see if she has endometrial hyperplasia. Now what’s that? It’s when the uterine lining (the endometrium) is too thick. Her question? Is there a link between Endo and hyperplasia?
I found this to be very interesting as I had an MRI before my diagnostic surgery which found I had abnormally thick uterine lining. The first part of my surgery last year was to go in and perform a D&C (dilation & curettage) to remove some of the thick lining. So now I’m not only researching for my reader, but for myself (although my D&C biopsy came back normal).
Suicide and Endometriosis has been a topic heavy on my heart for the past seven months. Am I suicidal? No. However, last year there were several EndoWarriors who committed suicide. And this year a few more have. Too many. But can easily understand their hopelessness: pain; no cure; the potential for multiple surgeries; regrowth; Western medicine, alternative medicine, natural supplements, snake oils, relief, recurrence, and the cycle starts all over again. Not to mention a sense of being completely alone, misunderstood, misdiagnosed, mistreated by physicians, mislabeled as drug-seekers, fakers, and crazies.
I’ve been trying to think of ways that I can help. In a small way. Or a big way. And I’ve fallen short on ideas… But today I’ve learned of a group where Warriors with suicidal thoughts can go for help. An old-fashioned phone-line group. Yes, that’s right. You can email, PM, or call someone if you need to talk. Talk with someone who is in your shoes. Who knows what you’re going through…because they’re going through it, too. Understand that you are not alone, and understand that people want to listen. And help.