Diagnosed in 2017, Jazz shares her Endometriosis story with us today.
Jazz’s Journey: I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.
After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis. Two years later, she shares her story with us.
Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didn’t do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.
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*:
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.
Donna lives in Britain and was in her early 20’s when she was diagnosed with Endometriosis. Nearly 20 years later, she tells us her story…including something that happened to her eyes about 10 years ago. She continues to live with Endometriosis and her eye-issue.
Donna’s Journey: Hi my name is Donna, it all started when I was nine years old when I started my periods. My childhood was ripped away from a very young age. I never had normal periods my cycle was every 14 days. When I would bleed I would often drench the bed with blood. My Mum took me to my doctor and he decided to put me on hormone replacement tablets to begin with. The pain I would experience was unreal yet no one really understood. Year in and year out my periods stayed at a 14 to 19 day cycle.
So, if you’re reading this you probably already know a little bit about Endometriosis. Recently at our support group meeting, the question of iron levels and anemia came up. With all that bleeding, can we suffer from anemia or an iron deficiency?
And, again, the topic of iron levels and Endo came up at our Endometriosis Awareness & Support Walk: could the blood left in my pelvic region from shedding Endo have caused the “abnormally high” iron levels during a blood test?
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.
Another rare location I’ve heard can be invaded by Endometriosis is our brain. Yep. Our gray matter. But, again, curiosity led me to find documented cases, symptoms, and treatments. So I’ve scoured the interwebs for just such a thing, but it was difficult to find much of anything! This is not meant to scare anyone, or to create an Army of Hypochondriacs. It’s meant to let everyone know that, yes, it does happen. And this is what to look for…and what can be done for it..
From what I can find (which was very, very little), it appears that symptoms may include headaches or seizures. As of 2010, there have only been 3 documented cases of cerebral Endometriosis (at least in English-language literature).
I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs. An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood. Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month. Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc. Here goes! This is NOT meant to scare you. Just educate us all, including myself.
Endometriosis is usually found within the pelvic cavity, but has also been known to be found northward and latching onto the liver and diaphragm. It has also been found on the membranes surrounding the lungs and heart. Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes.
Thoracic or Pulmonary Endometriosis is when Endometriosis implants/adhesions are found in your thoracic region, and can be found on your trachea, bronchi, diaphragm, lungs, or heart. It was first medically documented in 1953. Today, we focus on the lungs.