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.
At the time I had never heard of Endometriosis and no one in the hospital nor any of my doctors ever mentioned it. I was diagnosed, or more likely misdiagnosed, with Pelvic Inflammatory Disease, told that my fallopian tubes were full of scar tissue and that I would likely have difficulty conceiving. At such a young age, I really didn’t take the latter part seriously. It all seemed like a bad dream; my mind clouded by pain and morphine; leaving me with more questions than answers.
I was married at age 19. My first marriage only lasted five years, largely due to my inability to be intimate due to excruciating pain during sex, which I didn’t understand and was too shy to discuss. I was only on birth control for a year or so but never became pregnant.
Due to a lack of health insurance, my abdominal pain went mostly untreated for many years. I was forced to self-medicate, however I could, to endure the painful periods and random bouts of pain throughout the month, which often brought me to my knees, writhing and crying out in pain, until I passed out, if I was lucky.In 2007 my wonderful husband (then fiance) and I had started trying to start a family. During this time I was bounced back and forth between internal medicine doctors, gastroenterologists, and gynecologists. My horrible GI symptoms were dismissed as IBS.
After 2 years of unsuccessful fertility treatments, my doctor agreed to do an exploratory laparoscopy. I already suspected that I had Endometriosis, from researching my own symptoms, but didn’t fully understand it. My suspicion was confirmed after my surgery, at which time I was diagnosed with Endometriosis, PCOS, Endosalpingiosis, and a bicornate uterus. Unfortunately, I was never educated as to what any of these diagnoses meant. I thought the surgery had fixed me.I had no idea that there was NO CURE. I would soon learn this the hard way, as my symptoms returned and in less than one year I was back in the ER.
A second surgery in 2012 revealed more Endometriosis and many pelvic adhesions, binding together various organs within my abdomen. We continued fertility treatments after my second surgery but they failed and we have no children. Fast forward three years and my symptoms are back in full force now and worse than ever before.
I have since educated myself on this disease and know that excision surgery by a specialist is what I desperately need. Unfortunately financial limitations have made that impossible due to my husband and I both having other chronic health conditions requiring expensive treatments and pain management. We are holding out hope that one day things will change and proper treatment will be within our reach.
Words of Advice for Us: Educate yourself. Read and connect with other Endo Sisters and take advantage of the wealth of information and experience available in online support groups.
The Last Word: Don’t ever allow a doctor to dismiss your pain and symptoms. If they do, dismiss them, move on and find someone who will listen. No one should have to suffer with unanswered questions, waiting 15 years for a diagnosis and treatment, as I did. This disease has cost me SO much, physically, emotionally, and financially. My goal is to spread awareness in hope of better treatment for future generations and ultimately a cure for Endometriosis.
I want to send a special Thank You out to Ginny for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Ginny, may you keep us updated on your progress and know that we are all thinking about you. And thank you for your incredible words of wisdom. May we all take them to heart. Thank you!!! Yours, Lisa.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.