Whether partial or full, a hysterectomy is not a cure for Endometriosis. It may help relieve some symptoms (and in some women: all), but there is no guarantee.
Michelle had suffered with the pain associated with Endo long before she was diagnosed with Endometriosis when she was 21. Now 52, she lives in Bury, Lancashire in the UK. Her story is one of the more dramatic ones I’ve read so far:
Michelle’s Journey: I had excruciating period pain from being 16. My doctor at the time told my mum I was hypochondriac and could not take pain. We all believed him.
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There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis. And it’s estimated that 5 million in the United States have Endometriosis. 1 in 10 supposedly have, or will have, this disease. One. In. Ten.
An incurable, recurring disease which causes pain and infertility, among many other symptoms. A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both. And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before. And the only tried and true way to diagnosis the disease with with surgery!
So one thing hit me today. This disease is a driving economic force! What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices. If you live elsewhere and are curious, I encourage you to figure this out. For all of you living in the States, let’s find out together!
Continue readingA friend asked me to look up any connections between Endometriosis and Cesarean Sections. So, here we go. Lots of science in this one! Some studies show that less than 1% of women who undergo a cesarean section end up developing incisional Endometriosis (Endometriosis in or along the c-section scar). However, that tiny little 1% number has a staggering amount of studies involving a lot of women who suffer from this form of Endo.
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Here we go again, inspired to write due to a dietary “restriction.” I’ve read that as an Endo Sufferer, I should avoid (or drastically cut back from) soy and soy-based products. I’ve read soy mimics and increases estrogen levels, which we’ve come to understand can affect our Endometriosis growth and symptoms. So today, I want to do my own research.
Soy products are the “richest sources of isoflavones” that humans can eat. What the heck is an isoflavone? It’s a “plant-based compound with estrogenic activity” English, Lisa, ENGLISH! It means it’s a plant-based compound that mimics estrogen. So, soy has a very rich, or high levels, of a property, a compound, a thing…that acts like, or mimics, estrogen. The isoflavones can attach themselves to estrogen receptors throughout the body, and either mimic or block certain estrogen effects in tissues.
Why is that bad? Well, it’s not, for everyone. Estrogen may help prevent certain forms of cancer (breast, uterine, or prostrate), stimulate bone growth, or help women suffering with post-menopausal symptoms. But for those of us who suffer from what very-well may be an estrogen-driven disease, it can be very bad.
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Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THE question…), “Are there any reports of men having Endometriosis?” I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses. So, we have our topic for today!!
In rare cases, cis-men develop Endometriosis. Transmen also suffer from the disease. But we will focus on cis-men for this blog: it appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment. Here’s what I could find:
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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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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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Bloomin' Uterus 