Endometriosis
It falls into the abyss of “women’s diseases” (overlooked), diseases that don’t kill you (unimportant) and menstrual problems (taboo) - Rachel E. Gross
image by: Endometriosis Awareness
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Endometriosis is more than just a ‘women’s problem’
Why does a disease which causes pain and infertility… take up to ten years to diagnose?
Endometriosis is common and debilitating. Deposits of tissue resembling the lining of the womb are left in places they would not normally occur. The ovaries, tubes and walls of the pelvis are common targets. The bladder and bowel can be affected and, on rare occasions, far-flung body parts such as the liver can be involved. With every period the deposits bleed, setting off a vicious cycle of inflammation and scarring.
Women with endometriosis commonly experience very painful periods and painful sex. Some will also have pelvic pain which can last throughout the cycle. Bowel symptoms,…
Resources
'Endometriosis made zero sense to me': what will it take to stop women suffering needlessly?
The causes of endometriosis are unclear but, along with the draft guidelines, the Australian government has invested funding towards research, education, and developing and implementing the National Action Plan for Endometriosis.
Depicting the Hidden Agony of Endometriosis in Paintings
Australian artist Ellie Kammer makes oil paintings that visualize the rage of women's silenced pain.
Endometriosis relief is already hard to come by. A common treatment may be causing patients more pain.
Surgery could worsen pain, experts told the paper, especially if patients have damaged nerve endings. After an excision surgery, when surgeons remove diseased tissue, they often slice through some of the nerves that have grown inside the endometrial lesions, which can exacerbate symptoms for patients, depending on the kind of endometriosis they have.
How Tampons Could Be Used To Diagnose Endometriosis
NextGen Jane hopes that through their research into what menstrual blood can tell you about intimate health conditions, they may completely overthrow how conditions like endometriosis are diagnosed.
Lena Dunham has endometriosis. Here are 5 facts about the disorder
Since laparoscopy is an invasive surgery, many women go undiagnosed for years. It often takes between three and 11 years after the onset of symptoms to diagnose the disorder.
Period pain can be “almost as bad as a heart attack.” Why aren’t we researching how to treat it?
There are two main causes of period pain: Primary dysmenorrhea and endometriosis. The former is simply painful periods, with no certain medical explanation, that tends to affect women as soon as they start menstruation. But the distinction between the two conditions is not clear-cut, as many women suffering dysmenorrhea may have undiagnosed endometriosis.
The missed disease? Endometriosis as an example of ‘undone science’
Endometriosis is a chronic gynaecological condition which has been referred to as the ‘missed disease’ due to its unclear aetiology and inconsistencies in its diagnosis and management. Unlike other long-term conditions such as diabetes and asthma, endometriosis has remained largely ignored in government policy and research funding globally.
They Call It a ‘Women’s Disease.’ She Wants to Redefine It.
As a bioengineer, Linda Griffith once grew a human ear on the back of a mouse. Now she is reframing endometriosis as a key to unlocking some of biology’s greatest secrets.
Women with endometriosis experience terrible pain. There’s finally a new treatment
But it comes with some big caveats.
You Could Fly To The Moon 456 Times Before Getting An Endometriosis Diagnosis, Study Finds
Even though over the last five years activists and campaigners have spoken out about the lack of care and understanding of endometriosis it still takes an average of seven and a half years for people to be diagnosed with the condition. Speak Endo reports that around one in three people consult upwards of three doctors and medical specialists before receiving a diagnosis.
A Breakthrough in a Disease That No One Likes To Talk About
Scientists will “talk about breast cancer without batting an eye. But you cannot talk about menstrual problems,” Griffith said. “It’s the third rail, and that needs to change.”
"My Pain, In and of Itself, Had Never Been Valid'
Womanhood is a culture held together through our physical pain, yet the medical profession and society as a whole still refuses to acknowledge it.
Considering surgery for endometriosis? Here’s what you need to know
With progress in the last 100 years, most surgery for endometriosis is done with laparoscopy (key-hole surgery) and uses diathermy (electric current) or laser to either vaporise or cut out endometriosis.
Endometriosis and infertility
Endometriosis is defined as the presence of endometrial-like tissue (glands and stroma) outside the uterus, which induces a chronic inflammatory reaction, scar tissue, and adhesions that may distort a woman’s pelvic anatomy.
Endometriosis Made a Woman's Lung Collapse—Twice
It's known as a "reproductive disease," but endometriosis has other serious, less-discussed effects.
How To Be Your Own Endometriosis Advocate
Speaking to the Independent Faye Farthing, campaigns and communications manager for Endometriosis UK said, “If you are struggling to get a diagnosis – keep going. Keep a pain and symptoms diary, so you can share with your doctor what symptoms you’re experiencing and how they’re impacting you. And you can always ask for a second opinion or see a different doctor if you are dissatisfied.”
Living with Endometriosis, an Agonizing Disease with No Known Cause or Cure
For most of her life, Chloe has struggled with debilitating periods. When she was 25, she finally went to the hospital. It took four years to diagnose her. Why won't doctors take menstrual pain seriously?
My First Menopause
To treat my endometriosis, I must go through the big change at 41—and then I’ll go through it again later.
Painful Endometriosis Could Hold Clues To Tissue Regeneration, Scientist Says
It's estimated that one in 10 women experience endometriosis during their reproductive years, a condition where cells that line the uterus go rogue by moving to other organs, taking root and spreading there, leading to terrible pain. Many women who have the disorder struggle to be properly diagnosed.
Should Endometriosis Be Treated Like Cancer?
Endometriosis is truly a debilitating disease for many and it may present in several different ways.
The Pain Was Unbearable. So Why Did Doctors Turn Her Away?
ONE EVENING IN July of 2020, a woman named Kathryn went to the hospital in excruciating pain. A 32-year-old psychology grad student in Michigan, Kathryn lived with endometriosis, an agonizing condition that causes uterine-like cells to abnormally develop in the wrong places
The Science of Endometriosis–Endometriosis 101: Clinical Studies
Recorded on June 11, 2021, MIT’s Professor Linda Griffith and Michigan State University’s Dr. Stacey Missmer discussed endometriosis clinical studies and answered questions from the webinar attendees...
Treating Endometriosis as a Women's Disease Hurts Patients of All Genders
Living with endo is already hard when you're a white cis woman. For LGBTQ people dealing with a "women's disease," it's especially painful.
What It's Like to Have Endometriosis, the Disease That Makes Your Periods Hell
While Lena Dunham recently made headlines for the little-known condition, she's not alone. One in ten people with a uterus will suffer from endometriosis at some point, including me.
When Sex Is Excruciating
When the filmmaker Sindha Agha first went to the doctor about her pain, she experienced a phenomenon familiar to many women—she was not taken seriously. Then, it happened again. And again.
Why It Takes So Long To Be Diagnosed With Endometriosis, According To An Expert
Around the globe an estimated one in ten women are affected by endometriosis. This equates to 176 million people. Over the last decade campaigners and charities have worked tirelessly to raise the profile of the condition which can leave sufferers in debilitating chronic pain. However, research suggests that there’s still misconceptions surrounding endometriosis within the medical community and wider society which prevent people getting the help they need.
Why Online UTI and Endometriosis Communities Are a Godsend for Many Women
... it’s never been easier for someone with an internet connection and an unexplained tingling in their fingers to diagnose themselves with anything from multiple sclerosis to Parkinson’s. So it makes sense that medical professionals prefer for their patients to avoid working themselves into an existential crisis and just come into the office. But two recent pieces complicate the idea that all digital symptom sleuthing and commiseration is one and the same.
Endometriosis is more than just a ‘women’s problem’
Why does a disease which causes pain and infertility, and which affects around 10% of UK women, take up to ten years to diagnose?
1 in 10 Women Have Endometriosis. Why Don't Their Doctors Believe Them?
In "Ask Me About My Uterus," Abby Norman exhaustively chronicles her years-long struggle to make doctors take her pain seriously—something everyone who suffers from endometriosis can sadly relate to.
EndoAct
EndoAct’s goal is to drive policy action on endometriosis in Canada. By bringing together people living with endometriosis, health care professionals, and researchers, we represent Pan-Canadian expertise on endometriosis. Together, we are raising awareness about the problems faced by the endometriosis community and solutions to ensure that everyone in Canada who has this condition gets the right care, in the right place at the right time.
SpeakENDO.com
SpeakENDO.com is your go-to resource for endometriosis. Get tips on how to fully express your symptoms, learn to advocate for your own care, and hear from others who've been there.
EMLWY
Endometriosis: my life with you, or EMLWY as I often refer to it, is my own little personal project to help me gain some stability. It is my source of therapy that I want to share with the world in the hope that it can help others too. That and it allows me to have a massive rant at the world whenever I want!
Endometriosis Association
The ultimate goal of the Endometriosis Association is to find a cure and prevention for endometriosis while at the same time providing education, support, and research to those affected.
Endometriosis Foundation of America
The Endometriosis Foundation of America strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.
Endometriosis UK
We're here to provide vital support services, reliable information and a community for those affected by endometriosis.
Endometriosis Update
This Blog aims to report what is going on in the area of endometriosis research in plain and simple terms, so that everyone can keep up to date. Updates will be pretty sporadic but I'll try to report items of interest as often as possible.
Endometriosis.org
Endometriosis.org is the global platform which links all stake holders in endometriosis - one of the most common causes of pelvic pain and infertility in women.
QENDO
We support anyone affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain, by offering them the tools, services and programs to understand and take control of their health.
Surviving Endometriosis
My battle with endometriosis.
Endo Sucks
Pinterest site.
Endo Writer
endo writer wants to • make sense of endometriosis • raise awareness of endo, so women don't have to suffer • raise awareness of progesterone intolerance, so women don't have to suffer • share research... • encourage research
Endometriosis Explained
In the “new view” of “endometriosis” these symptoms are caused by injuries to pelvic nerves caused by (1) difficult vaginal deliveries, (2) straining during defaecation, (3) minor gynaecological surgery (D&C) for conditions such as miscarriage, (4) occasional direct trauma.
Endometriosis: the silent life sentence
Endometriosis is that spaz you didn’t invite to the party, of course, but who shows up anyway; the “friend” who always drinks too much and ends up dancing on the table, whilst stripping down to their knickers. It’s Naproxen and a heating pad to the rescue. And maybe, just maybe this time, endometriosis will take the hint, climb down off the table that is my uterus (just stay with me, people), and scram. A girl can hope.
Hope Garden
My journey dealing with endometriosis.
Living with Endometriosis
The pain remains. I am a warrior woman fighting the pain, fighting the workplace establishment that’s only concerned about their bottom line and not their employees, and fighting the medical industry that’s only concerned with kickbacks from the dangerous pharmaceutical industry.
My Endo Diary
I don't proclaim to be an expert. I'm just an endometriosis sufferer, talking about what I know. Wanting to raise awareness of endometriosis and share my endo diary with you.
My Journey with Endometriosis
By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!
The ICI Experience
A blog about all aspects of the experience of living with Invisible Chronic Illness (ICI), with a new focus on Endometriosis and Pelvic Floor Dysfunction.
MayoClinic
Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.
MedicineNet
While most cases of endometriosis are diagnosed in women aged around 25 to 35 years, endometriosis has been reported in girls as young as 11 years of age. Endometriosis is rare in postmenopausal women.
MedlinePlus
This "misplaced" tissue can cause pain, infertility, and very heavy periods. The pain is usually in the abdomen, lower back or pelvic areas. Some women have no symptoms at all. Having trouble getting pregnant may be the first sign.
Patient
Endometriosis can cause painful periods, persistent pain in the pelvic area, infertility, and other symptoms. The symptoms can range from mild to severe. Treatment options include painkillers, hormone treatments, and surgery.
WomensHealth.gov
The most common symptom is pain. The pain happens most often during your period, but it can also happen at other times. Endometriosis may also make it harder to get pregnant. Several different treatment options can help manage the symptoms and improve your chances of getting pregnant.
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