Leidy lives in Germany and was 35 years old when she was told she had Endometriosis. Now 42, she would like to share her story with everyone cares to read it. A battle which literally spans the globe in search of answers, a series of numerous misdiagnoses, and Leidy is one hell of a Warrior.
Leidy’s Journey: I am now 42 years old but since my first period, I have had problems.
My main problem is in my bowels. Which misled my specialists to find the correct diagnosis. The only issue I had, related to my period, was irregular bleeding.
Each month I bled during my ovulation. My period lasts sometimes more than a week. And I bled during sexual intercourse. The pain during the period was not severe and Ibuprofen usually was enough to alleviate the pain.
New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years. Today, a year later, she shares her long and difficult Journey with us.
Sarah’s Journey: I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.
It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16 hour class around it and teach it inside a week.
Living in Barbados, Katrina was 29 when she was diagnosed with Endometriosis. Today she’s 34 years old and shares her Journey with us. She truly is a Warrior!
Katrina’s Journey: Life started out normal like any teenager but it soon came to an abrupt hault when I started to mature a bit more then the pains associated with my period was terrifying on the onset of my menstruation. As I grew older the pain got worse at age I was hospitalized for a low blood count due to the amount of blood I had lost in that one cycle it was terrifying.
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…
Melinda lives in Guyana in South America and was 35-years-old when she was diagnosed with Endometriosis. Now 40, she has started an Endometriosis Support Group in her country. May she bring the government, the women, and the medical professionals together to raise Endo awareness and improve healthcare for the Guyanese citizens!
Let me begin by thanking Lisa Drayton from Bloomin’ Uterus for giving me that little nudge I needed to start this Endo conversation in Guyana. My journey with Endometriosis has been a long and very painful one.
During the latter half of my teens I started having severe pains, heavy bleeding, bloating, lower back pain and constipation during my menstrual cycle. The pain was so intense I would sometimes faint.
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?
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.
Nikkia was diagnosed when she was 23 years old. Now 31, she lives in Arizona and she and her husband are trying to conceive their second child. Please keep them in your prayers as they are facing the difficult decision of a hysterectomy due to the complications of her illness.
Nikkia’s Journey: Endometriosis has a long history in my family. My grandmother passed away at a young age of endometrium cancer (the lining of the uterus). My mother has had two surgeries to removed fibroids to the point it didn’t help so they did a partial hysterectomy. For me I started noticing sharp pelvic pain when I was 22 . My husband and I was trying to conceive but was unsuccessful.