I have updated information on two pages on this site – Support and Endo Organisations – which are always found in the header bar above.

Online Support For Endometriosis

Organisations

And I have updated the Organisations sidebar on the right of this page which contains the same information as the Organisations page itself.

Myth!

endometriosis.org writes:
“‘Women’s problems’ perplexed nineteenth century doctors, who saw them as indicative of women’s unstable and delicate psychological constitutions. Even though attitudes towards women improved during the twentieth century, some of the old beliefs still linger unconsciously, and affect the medical profession’s attitudes towards women’s complaints, including period pain.

“As a result, while seeking help for their pelvic pain (which may occur apart from menses), many women with endometriosis are told that their (often severe) period pain is ‘normal’, ‘part of being a woman’, or ‘in their head’. Others are told that they have ‘a low pain threshold’, or are ‘psychologically inadequate’.

“The net is that if pain interferes with daily life (going to school/work, partaking in day-to-day activities) it is not normal.

“If pain interferes with your day-to-day life, please seek help and ask to be investigated to determine the cause of your pain.”

The Endometriosis Association writes: “Menstrual pain that keeps you from participating in usual activities is not normal. Some women never experience menstrual cramps. Others have only mild, occasional pain. If your cramps are severe and/or frequent, it is a sign of a problem.”

EndoCenter.org writes:
“What’s the Big Deal? It’s Just “Killer Cramps,” Right?

“Wrong. This mistaken assumption diminishes and invalidates the suffering of every individual with the disease and can lead to feelings of isolation. Endometriosis isn’t just ‘bad periods.’

“So – What IS Normal?? Minor cramping during menses, often treated with over the counter remedies. Each month, tissue lining the uterus (endometrium) breaks down, sheds and exits the body resulting in normal menstruation. Inflammatory hormones – particularly those known as prostaglandins – are linked to the minor cramping and discomfort of a normal period. This is called “dysmenorrhea”.  Dysmenorrhea is not the same as endometriosis, nor is the disease simply comprised of ‘normal’ endometrium in abnormal places – as many sources and organizations mistakenly assert.

“Symptoms vary, but classic signs [of endometriosis] include severe dysmenorrhea, painful sex, chronic pelvic pain, Middleschmertz (painful ovulation), bowel or bladder associated pain or symptoms, infertility and often chronic fatigue, collapsed lung in thoracic endometriosis, and more. Endometriosis can cause pain in menstruators and non-menstruators alike.”

This and other myths can be found here.

MYTH!

EndoAlert (site no longer exists) wrote:
“Anyone claiming to be able to cure endometriosis with whatever product they are selling should be considered skeptically. It’s improper to say they “cure” the disease as there is no cure. What they are doing, if successful, is relieving the symptoms of endometriosis. It is common sense that a healthy diet and excercise can boost your immune system and make you feel better all around. However, there are many unscrupulous people who are willing to prey on people in pain by selling gimmicks or, worse yet, medication they do not fully understand. Before you try any new diet, excercise, or medication discuss it with your doctor”.

Endometriosis.net writes: “Currently, there is no scientific consensus on the effect of utilizing herbs and supplements for endometriosis and its related symptoms. However, herbs and supplements can impact different individuals in different ways, and some may experience relief from symptoms when using certain herbs or supplements in a healthy and safe manner.”

There are a couple of well-known endometriosis organisations out there strongly selling their viewpoint that people should be on certain types of diets and supplements, and that such diets and supplements can prevent endometriosis. My opinion of these doctors and organisations is not high as a result, since endometriosis cannot be prevented – we are born with it.

You can find this and other myths here.

MYTH!

The Endometriosis Research Center (ERC) says:
“Hysterectomy – not a cure and inappropriate for young women!”

Endometriosis.org says:
“Hysterectomy (surgical removal of the uterus) does not guarantee relief from endometriosis-related symptoms and can neither be classified as a “treatment“, nor as a “cure” for endometriosis. Furthermore, surgery is surgeon dependent, and if all the endometriosis is not removed as at the same time as the removal of your uterus and/or your ovaries — you may still have endometriosis (and associated symptoms) after this irreversible procedure.”

UofM Health says:
“Taking out the ovaries (oophorectomy) and the uterus (hysterectomy) usually relieves pain. But the pain relief doesn’t always last. Pain comes back in up to 15 out of 100 women who have this surgery. This means that in 85 out of 100 women who have surgery, the pain doesn’t come back. If you have your ovaries removed, you can choose to take estrogen therapy. It will protect your bones and prevent menopause symptoms after your ovaries are removed. But it may also make endometriosis come back.”

You can find this and other myths here.

Fact or Myth? Endometriosis is a rare disease.

Myth!

“Endometriosis is one of the most common gynecological diseases, affecting more than 5.5 million women in North America alone.” – The National Institute of Child Health and Human Development (NICHD).
“It is estimated that between 2 percent and 10 percent of American women – or 5.5 million women and girls – of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility.” – Ohio State University Medical Center.
“…endometriosis is a complex hormonal and immune chronic disease causing multiple symptoms, including pain, which disrupt the lives of an estimated 89 million women and girls worldwide.” – The Endometriosis Association.
“Endometriosis is an often painful disease affecting an estimated 176 million individuals around the world.” – The Endometriosis Research Center (ERC).

This and other myths can be found here.

MYTH!!!!

Dr. Joseph W. Krotec and RN Sharon Perkins write in Endometriosis for Dummies:

“Even doctors used to believe that endometriosis was a psychological disease. The prevailing attitude was that, if you just stopped thinking about yourself all the time, all the pain would disappear. Some doctors actually believed that a woman’s positive attitude would make the pain go away. Unfortunately, some professionals still use this rationale today.

“Although a positive attitude is certainly good to have throughout your life, you probably know that attitude doesn’t decrease your endometriosis one bit. Endometriosis isn’t just in your head (although it can be; endometriosis has been found in the brain! See Chapter 6 for more info) — it’s in your pelvis, and it hurts.”

This and other myths can be found here.

Endometriosis is an autoimmune illness that one is born with. Doctors do not know what causes endometriosis – there may be several causes. So much misinformation and ignorance still exists about the origins of endo that many people spend years being dismissed, degraded, and mis-diagnosed by doctors before surgical diagnosis confirms endometriosis. People spend many more years being treated like guinea pigs because doctors cannot agree on effective medical and medicinal treatment of endometriosis.

The symptoms of endometriosis vary from person to person, but often include the following:

• Chronic pelvic pain, often extending to the lower back
• Heavy menstrual cycles
• Mittelschmerz (mid-cycle pain and/or bleeding)
• Pain during intercourse
• Moderate to severe fatigue
• Painful urination or bladder complications during menstruation
• Painful bowel movements during menstruation
• Rectal bleeding before and/or during menstruation
• Diarrhea, constipation or nausea during menstruation
• Frequent Urinary Tract Infections and/or yeast infections
• Infertility
• Low-grade fever
• Migraine headaches
• Nausea
• Dizziness
• Hypoglycemia (low blood sugar)-like symptoms
• Joint pain
• Feeling out of breath or easily winded

Stats are still sketchy as to how many people suffer with endometriosis.

• “Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide”. – Endometriosis Association
• “Current estimates suggest that 6% to 10% of women of reproductive age have endometriosis, or approximately 5 million women in the United States”. – National Institutes of Health
• “Endometriosis is a very common condition affecting up to 10 per cent of women between 16 and 50 years of age, often without producing any symptoms”. –NetDoctor
• “Endometriosis is estimated to occur in roughly 6–10% of women. It is most common in those in their thirties and forties.” WHAT?!? NO! THIS IS MISINFORMATION!!!
  – Wikipedia, citing the womenshealth.gov website from 2014.
• “Endometriosis is estimated to affect over one million women (estimates range from 3% to 18% of women) in the United States”. –Medicine Net

Treatment of endometriosis can include pain medication, surgery, hormonal treatment, and alternative medicine, but it must be noted that currently, the only definitive diagnosis of endometriosis is firstly made via laparoscopy. HOWEVER, most people with these symptoms already know they have endometriosis – you don’t need to wait for a definitive diagnosis to start asking your doctor for help TODAY!Any good reproductive endocrinologist worth their salt will be able to help you until you have ‘the official’ diagnostic surgery. The diagnosis is merely to see how bad things are inside so you can continue to get the ongoing care you need. 

This information is also linked from my main page in the navigation bar.

Daily Planner: December 10 (Chico, CA)
ENDOMETRIOSIS SUPPORT: 6:30-8 p.m. Women w/Endometriosis, Support Group of Butte County, helps women find out about the disorder through books, Web sites and physicians. Chico library conference room, 1108 Sherman Ave. Becky Hejl at 966-5275. Meets once a month, Wednesdays.

Twin Cities Endometriosis Support Group (Minneapolis-Saint Paul, Minnesota)
A local group of the Endometriosis Association offering local information, general information and links to other resources. Meets at the Edina Community Lutheran Church once a month.

Endometriosis Association’s List of In-Person Support Groups in the U.S.
To contact the group facilitator or to form a group in your area:
Call or email the Endometriosis Association headquarters in Milwaukee at (414) 355-2200 support@endometriosisassn.org
The Endometriosis Association is also affiliated with support groups in South America, Europe, Asia, and Africa. We also have sister groups in the United Kingdom, Australia, and New Zealand. Please contact headquarters for more information.

This site was started to collect information out on the web about Endometriosis, and store it in one place where I can easily reference the info. I realised you too might want access to this info, so here it is, available to all.

What is Endometriosis?
Endometriosis is an incurable illness which affects women.
Endometriosis starts in the lining of the uterus, which is called the Endometrium. The medical field is still trying to figure the disease out, and so there are debates as to how and when the disease begins, and how the disease operates (see left sidebar for research and definitions). The most commonly accepted theory at the moment is that Endometriosis is the result of “retrograde menstruation”, whereby some of the menstrual fluid escapes from the uterus into the pelvic cavity, thereby landing on surrounding tissues and organs, such as the ovaries, fallopian tubes, abdominal wall, intestinal walls, bowel, bladder, etc. This is actually common to most women at some point or another. However, in women with compromised or faulty immune systems, the fluid that escapes is not reabsorbed by the body as it would be in women with more robust immune systems. When the excess fluid is not reabsorbed, it settles on the tissues and organs and becomes a growth. The fluid, now solidified into a growth, contains the same uterine hormones it did when it was inside the uterus.

At the next menstrual cycle, the uterine tissue is activated by hormones to start sloughing off again. The growths outside of the uterus heed the same hormonal call and also start sloughing off, or bleeding. Whichever organs or tissues these growths are attached to at the time then begin reacting to a foreign body, and they set off their pain receptors.

Hence, if the fluid had settled onto your ovaries or fallopian tubes, your abdominal wall or intestinal walls, your bowel or bladder, then when those pain receptors get set off, you’re in for a world of hurt. Over time, the growths turn into lesions, then into scar tissue and/or sticky adhesions.

Doctors to this day still do not know much about Endometriosis, so most doctors rush to other diagnoses and treatments before arriving at a diagnosis of Endometriosis. Many women, myself included, report being diagnosed with Irritable Bowel Syndrome (IBS) and treated for that. When treatment doesn’t work, doctors try more damaging medications and treatments. Two of my doctors gave up on me and told me to go see a chiropractor!!!

If you are not sure whether you have Endometriosis, check out the left sidebar under “Definitions of Endo” to see if the symptoms match what you are going through. If you feel there is a match, see a gynaecologist to request a full physical, pap smear and sonogram on the basis that you think you have Endometriosis.

If you already have a diagnosis of Endometriosis, I hope the links I have provided on this site serve you well.

Much love goes out to all of us who suffer from this disease.