Many of you have read my blog entry Stress Levels May Affect Endo. In that blog, I mention Dr. Caroline Appleyard, her colleagues, and their research. Dr. Appleyard and Dr. Flores Caldera have agreed to answer some questions I’ve posed to them. Both doctors are incredibly busy; however, have still managed the time to answer these questions!
Q&A Session with Idhaliz Flores Caldera, Ph.D.
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Lauren was diagnosed in 2011. She has had ongoing battles with fertility, miscarriages, and a battle for disability benefits. Her story is a heartbreaking one.
Lauren’s Journey: I first started going to South Jersey Fertility in February 2010, to help conceive a pregnancy. On August 4, 2011, I started to develop excruciating pelvic and abdominal pain. The pain was so bad, I had to go to the emergency room.
On September 16, 2011, I had a laparoscopy, which found classic endometriosis lesions of the left pelvic sidewall and a single band-like adhesion involving the right ovary to the uterus. There was a large peritioneal window under the right ovary. This is consistent with endometriosis.
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Most of my blogs are started out of my own curiosity, and this one is no different.
I’ve read in numerous sources that people with Endometriosis need to keep our livers in tip-top condition; well-greased and in proper working order. I’ve seen a few Facebook posts from other EndoWarriors that they have heightened levels of *something* when they have a liver panel blood test done, and they wonder if their Endometriosis may have something to do with that. That struck a chord with me because I have Gilbert’s Syndrome, which is a liver disease diagnosed through heightened liver panel results.
Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome? My liver blood panel test results?
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I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!). I was diagnosed when I was 35 years old in 2014.
My Journey: I started my period when I was 12 or 13 years old. I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal. I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow. I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this. Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…
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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.
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Tara was 24 when she was diagnosed with Endometriosis. Now 32 years old, she shares her experience with us…
Tara’s Journey: I am sick. I am chronic illness. I am not curable. I am angry. I am scared. I am pain. I am draining. I am sad. I am a fighter. I am strong. I am weak. I believe. I hope. I dream. I wish. I love. I suffer. I struggle. I laugh. I cry. I scream. I am mad. I am endometriosis.
Endometriosis has changed my life in more ways than I could ever possibly explain. It has ripped away part of me and has destroyed many of my hopes and dreams. I feel like an alien is living inside my body. I am no longer in control of my future. Endometriosis owns me. It holds ownership to one of the biggest dreams I have ever held. It has taken away my right as a woman to bare a child. It has left me hopeless, resentful, angry, confused, and scared, scared to death that one day it may take my life. No endometriosis cannot kill me, I understand that but it can cause things that can.
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As much as I’d like to giggle, I’m not talking the *funny* kind of gas. I’m referring to the Carbon Dioxide gas trapped in your body after a laparoscopic surgery. Approximately 35-80% of patients who undergo a laparoscopic surgery complain of shoulder pain. It is reportedly supposed to last for up to 72 hours, but some patients have the ongoing pain for longer (mine lasted a few days longer).
During a laparoscopic surgery, Carbon Dioxide is injected into our abdomens to create a distended abdomen, a big balloon, so the surgeons can look around inside without all of our crammed organs in the way. Some of that gas remains in our systems after surgery, causing pain. There are a few theories as to what causes the post-op pain in our shoulders:
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I have heard that sometimes when physicians conduct a hysterectomy where the uterus was shredded/broken down and removed through small incisions then biopsied, cancerous cells could be detected during the biopsy. And that the presence of those cancerous cells may remain in the abdominal cavity post-procedure, which may spread and continue to develop. Some women who this happened to ended up having to go through a intense radiation therapy treatment to remove the cancerous cells.
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Aubree was 29 when she was diagnosed with Endometriosis. Now 33, she lives in Colorado and has found not only acceptance of her disease, but peace. And she’s found her healing through self-love and a natural holistic approach. She has even written a book about her journey and her path to inner-peace and healing.
Aubree’s Journey: I suffered with extremely painful periods from the very beginning. I complained about them for years to my doctors, but nobody really paid them much attention. One of my family doctors prescribed me Ibuprofen, but this didn’t touch the pain.
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Bloomin' Uterus 