Well, it came and it went! February 23, 2017, was the day that Dr. Mara Killen of San Diego Womens Health and I presented an Endometriosis workshop at the San Diego Marine Corps Recruit Depot for their Exceptional Family Member Program. (You may remember that Dr. Killen presented on PCOS back in December.)
Our presentation and Q&A session lasted roughly two hours and Dr. Killen gave an excellent talk about Endometriosis, the theories of causation, symptoms, medical treatment options, etc. I covered the alternative options such as diet, lifestyle change, Eastern medicine, mental health, and physical therapy. The gals (and one husband) who showed up came with some incredible questions!
I cannot thank the EFMP and its staffmembers enough for granting us such an incredible opportunity to reach out to our community. And, Dr. Killen, thank you for taking time away from your busy schedule and personal life to offer such valuable information. I will be forever grateful.
Heather was diagnosed with Endometriosis when she was 24 years old. Now 37, she lives in Florida and has started “Heather’s Hope Endo Strong”, and is also a model advocating for chronic illness.
Heather’s Journey: I‘ve suffered with Endometriosis over half of my life. I’ve had 4 surgeries and all were unsuccessful. I did 2 Lupron injections a few years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.
MB was 20 when she was diagnosed. Now 29 and living in Alabama…her pain is back and she’s not sure how to move forward.
MB’s Journey: I had a baby when I was 18. I got married at 19 and then 6 months later started having bad pains so I saw the gynecologist. She did an ultrasound and test and it was a holiday weekend. They called the end of that day saying there was a mass in my uterus and I need to see the doctor after the holiday. That’s it.
Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade. Now she’s 30, living in San Diego, and she’s found our little support group. I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend. Her story follows…
Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…
Jen reached out to us to share her story about her diagnosis with Endometriosis. Now seven years after she found out she had the disease, see how she’s doing today…AND if you’re in the Sarasota, FL, area and hosting any Endo events or need a local EndoSister, here’s your gal!
Jen’s Journey: I was 23 when I was diagnosed with endometriosis, it took Doctors 5 years to diagnose me, I was lucky it wasn’t longer like most. I never had bad periods, but I did have extreme cramping & headaches. I feel pregnant a lot of the time & unfortunately I have to deal with that feeling knowing I’ll never have another child because I had a complete hysterectomy when I was 28.
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.
Amy was 29 years old when she learned she had Endometriosis. Now 38 and living in New Jersey, she has turned her personal battle with Endometriosis into a campaign to help others.
Amy’s Journey: My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.
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.
Tabitha had suffered with the pain associated with Endo long before she was diagnosed with Endometriosis when she was 26. Now 30, she lives in Franklin, TN, and her life may be drastically changing due to her ongoing symptoms.
Tabitha’s Journey: I say I was diagnosed at age 26 but the pain and other symptoms have been treated long before that. I’d say it all started at age 23. But the severe back pain started 2 years ago. In the thoracic region around my T8 and T9. It hurts so bad at times that it’s hard to straighten myself up. I have no diagnosis yet but drs say there’s nothing wrong with my spine as far as anything herrniated and no slipped disks. So what else can it be?