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30

Dec

Beware of what you read and do not let it dictate your resilience

Posted by steph  Published in Books, Outrageous, Tips and advice

I am posting the article below with reservations. While there are some good points made, I wholly disagree with the website and the pushing of the book from said website. Of the traits below, they ask you to identify which ONE describes you. I say MANY of the traits describe we who deal with chronic debilitating pain. But my criticism of that website does not end, here.

Read the 12 traits, because they present with good advice. Then please read my warning that follows.

12 Traits That Help Us Overcome Adversity and Become Survivors
By The Survivors Club Staff

We are all equipped with unique traits that make us survivors. We overcome the adversity in our lives by employing these tools, sometimes unknowingly. Whether it is a battle with cancer or a run in with a bully on the playground, we deal with crises in our own unique ways. The following 12 traits help each of us get through difficulties in our lives and make us part of The Survivors Club. Which one describes you?

Adaptability
With the skill of adaptability you have the capacity to adjust to new situations and change your attitude and behavior to handle new challenges as they arise. When an obstacle gets in your way, you can modify your approach to accomplish your goals. You quickly let go of the way it used to be and use new strategies and tactics to fit the emerging reality. More than any other psychological strength, adaptability determines who gets into the Survivors Club.

Resilience
You have the ability to bend like a tree in the wind. But you will not break in the face of any adversity in your life. You have the power to rebound and recoil back to your feet. You get up when you are knocked down and continue forward persevering through these hard times. You keep trying even when others around you have fallen off or quit. You refuse to give up.

Faith
Faith is the most powerful and universal survival tool. You trust that God or a higher power has a plan and will look after you. You will be steered through difficult times and trust that you will be given guidance on your actions. If you listen, you will be shown the way. In a crisis, faith gives you remarkable power and confidence to prevail in the face of any form of adversity.

Hope
You believe that no matter how bad life gets, everything will turn out for the best in the end. Your hope isn’t just a rosy sunset on a Hallmark card; it’s a combination of optimism and realism. You are confident that your wishes and desires will be fulfilled. You are an upbeat person who turns negative feelings into positive thoughts. You have power to laugh in the darkest times and see humor even in the toughest situations.

Purpose
Purpose is the booster rocket of survival. You have a passion for life and your dreams. This gives you the power and drive to persevere in the face of incredible adversity. You’re determined and focused on accomplishing your objectives no matter what tries to slow you down. Life is a gift and you plan to make the most out of it. You are driven by a profound sense of duty to a cause and are willing to work tirelessly for your purpose.

Tenacity
Your tenacity is the superglue that keeps you strong in the toughest times. You are capable of holding on throughout any crisis and far out last others around you. You’ve got the persistence and determination to stick to it and keep stepping forward. You’ve got the grit and toughness to hold on when others can’t take the punishment. Sure life hurts everyone, but you can handle the pain and keep going.

Love
You will do anything and go to any lengths for the people you love. Your bonds with family and friends are unbreakable and give you reason to live. Other people depend on you, and you will never let them down. You believe that love is the ultimate purpose. Even in the worst times, the love around you and inside you gives you the strength to go on and thrive.

Empathy
In a crisis, your ability to help others turns out to be a very powerful way to help yourself. Your compassion motivates you to help other people stricken by misfortune. You will do anything to reduce their suffering. When others resort to selfish means of survival, you on the other hand think of others first. You are good at reading new situations and people, and you’re always aware of your surroundings.

Intelligence
You’ve got brains and a talent for learning, thinking and problem solving. Your intelligence is a powerful tool against adversity as well. You see complex and dangerous situations clearly. You examine problems from multiple angles to find realistic solutions. In a crisis, you can figure things out and understand what’s going to happen next.

Ingenuity
You are clever, inventive and resourceful. You can apply acquired knowledge from other situations to overcome immediate challenges. You are a real-life Angus MacGyver, the 1980s secret agent on television. You were given the gift of bricolage: the art of building things from whatever materials are available. You are an improviser and enjoy innovation and invention. Your ingenuity helps you survive adversity.

Flow
You are like a river. You move forward, steadily, relentlessly, and with apparent ease and effortlessness. You don’t need to make adjustments. You sail along, freely and calmly without fuss or muss. You stay cool when others panic and relax when others stress out. You understand the futility — and danger — of trying to control the uncontrollable. Facing a crisis, some fight and others flee, but you flow.

Instinct
You posses a remarkable gift that isn’t learned or taught. You have the innate power of instinct and intuition. You don’t need to think very hard — you don’t panic or obsess — you simply act. Your gut feelings come naturally and automatically and you trust yourself to do what’s necessary. In a crisis, you gain immediate insight into your challenge and know what to do. You see signs of danger before anyone else.

I posted this here because I agree with many of the points given, and it serves as good reminders to us, even if it does read like a daily horoscope out of a newspaper.

The more I read of their website, however, the more angry I became. It started with the phrase under Adaptability, which said, “More than any other psychological strength, adaptability determines who gets into the Survivors Club.”

Then I found a link for The Book. The Book is called “The Survivors Club” and the first thing you should always beware is when anyone offers you SECRETS that will better your life or save your life, if you pay them for their product or advice.

Next, the book is all about psychological profiling who will or will not be able to survive in the face of adversity. That’s right, folks, you heard me. This book will dictate whether or not you will FAIL to LIVE through your condition!

You purchase the book to get a ten-digit access code to go back to the website and take a personality test that will serve as self-fulfilling prophecy or psychological warfare, take your pick. Anyone knows that if you are told YOU WILL FAIL or YOU DON’T HAVE WHAT IT TAKES, that it has a horrible impact on one’s psyche. This is a dangerous and irresponsible book and I cannot for the life of me understand how the hell it got published.

This is not some sort of sorority or fraternity club! We are real people suffering every day with things that threaten to consume us at any second!

How I found out about The Survivor’s Club: The Endometriosis Research Center’s Facebook page had posted a link to a story about a woman diagnosed with endometriosis who, like me, started a blog to educate women about endo. On the same page as her article, there was a link to “12 Essential Traits That Make You a Survivor”.

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17

Mar

Endometriosis at Menopause

Posted by steph  Published in Books, Cancer risk, News article

Endometriosis at Menopause
I originally found this article at Canadian Women’s Health Network, but I can no longer find the article there. A search of the web has led me to its potential duplication at findarticles.com.
Friend Indeed, A, Nov/Dec 2003

In the late 1970s and early 1980s, many of you may remember reading about endometriosis as the Career Woman’s Disease. It was so called because it supposedly only affected childless women in their 30s. Today, we know so much more. Endometriosis is now classified as a hormonal and immune-system disease that can affect females from childhood well into old age. In endometriosis, tissue that lines the uterus (endometrium) is found outside the uterus in other areas of the body such as the ovaries, bladder, rectum and intestines. Every month this tissue builds up and sheds during the menstrual cycle, developing into growths or implants that can cause pain. Many women diagnosed with endo may be looking forward to menopause as a time of relief from the pain. Many do experience a reprieve, but new studies show that symptoms may also reappear. In fact, some women may be diagnosed with endo for the first time at menopause or later.

To fill you in on the latest information about endometriosis at menopause, we’ve excerpted parts of a chapter from the recently released Endometriosis: The Complete Reference for Taking Charge of Your Health, by Mary Lou Ballweg, founder, president and executive director of the U. S.-based Endometriosis Association.

Introduction

Will your endo symptoms resolve with menopause? Should you use hormone replacement therapy, or will it reactivate the endo? Even if the endo implants don’t recur, what other health problems should you be aware of? There are no easy answers to these questions and few guideposts for the generation of endoknowledgeable Baby Boomer women now entering menopause.

As you enter your postmenopausal years, you may find that endo no longer plays a central part in your health and life (although that’s not the experience for all women with endo; read on). But it’s critical that you not stop thinking of yourself as a woman with healthcare needs and health risks. Endo pain may be gone, and fertility may no longer be an issue, but you may face other health problems related to immune system dysfunction-allergies, autoimmune diseases, cancers.

Natural menopause

Endo implants, if they have not been removed surgically, may still exist, but the symptoms may no longer be a problem. There are only a few studies in the medical literature about recurrence of endo lesions in menopause (or about appearance of new endo lesions-it may be hard to tell the difference). We now understand mat the lesions of endo depend on estrogen for their growth. It seems reasonable, therefore, to conclude that the lesions would no longer be stimulated when the ovaries produce less estrogen in menopause and monthly bleeding stops. However, smaller amounts of estrogen are still being produced. We don’t yet know how large a factor this might be in women who experience continued endo growth and symptoms. Nor do we know what role the immune system, exposure to environmental toxins, diet, lifestyle choices, weight, and other factors play in endo after menopause.

So what do we know about the incidence of endo symptoms in natural menopause? According to some studies, it is estimated that two to five percent of postmenopausal women have endo, including women up to age 76. Another source shows that an estimated two to four percent of postmenopausal women treated at one institution were diagnosed with endo for the first time during surgery for other problems-42 percent had not been using hormone replacement therapy (HRT). This could contradict the belief that endo needs premenopausal levels of estrogen or added estrogens, such as HRT, to thrive.

Surgical menopause

Women who have had their ovaries removed may find that, in spite of the challenges of being thrown suddenly into menopause, they have finally seen the end of excruciating pelvic pain and other symptoms of endo. We know differently. The Association’s data show that endo symptoms continued in 35.7 percent of 731 women who had undergone surgical menopause. In another study of postmenopausal women with chronic pelvic pain, endo was found during laparoscopy in 37 percent of 65 women whose uterus and ovaries had been removed. As well, new endo was found in 13 percent (three cases), but these may represent endo undiagnosed at the first surgery. The incidence of endo was more common in women who had used estrogen replacement therapy (ERT) after their initial surgery.

If you experience endo symptoms in menopause

Be stubborn if you are worried! Try to find a gynecologist who has experience in treating endo. If you see a general surgeon for bowel pain, be aware that she may not consider endo (or the gastrointestinal problems of those with endo) as a possibility. Make sure the surgeon or gynecologist knows about your history with endo. Insist on a rectovaginal bimanual exam; not all doctors do this routinely. If there is tenderness, you may have endo; if not, the pain may be caused by adhesions from previous surgeries and old endo.

Treatment options for peri- and postmenopausal endo

Medical therapy is even less understood in postmenopausal women with endo than in those with perimenopausal endo. Side effects of danazol [a drug that diminishes luteinizing hormone, halting ovulation] increase the risk of problems in women with severe high blood pressure, congestive heart failure or impaired kidney function. We might be dealing not only with endo in menopause, but also with age-related medical problems [e.g. heart disease] that must be considered as well.

Unless there are medical or other reasons not to do this, some endo experts suggest that the procedure of choice in postmenopausal women is “definitive” surgery. This means the complete removal of all visible endo, the uterus, tubes, ovaries and adhesions (when possible). This is a contentious issue. While a number of endo experts emphasized the importance of cutting out all visible endo, not all agreed that the ovaries must also be removed, even in menopause.

In women who have already been castrated and continue to experience endo symptoms, surgery can be done to confirm that endo tissue is still present, to rule out cancer, and to remove all visible endo.

Hormone replacement therapy

The question of whether or not hormone replacement therapy is a safe and helpful option for women with endo is of great concern to many women. Unfortunately, we cannot simply look to the medical literature for guidance. Studies on HRT are usually not specific to women with endo.

Many women are concerned HRT might reactivate their endo. When speaking with your doctor about HRT, be sure to ask how it can help reduce bothersome menopausal symptoms, but also discuss the risks. Of specific concern to women with endo are breast and ovarian cancer, non-Hodgkin’s lymphoma, melanoma, and transformation of endo into cancer. [The book has a chapter explaining the strong association of endo with these cancers.]

Bio-identical hormones

Unlike the synthetic and animal-derived hormones [such as Premarin and Provera], bio-identical hormones have exactly the same chemical structure as the hormones that women’s bodies produce. They include the three estrogens (estradiol, estriol, and estrone in products such as Estrace, Vivelle, Climara, and Estraderm patches) and micronized progesterone (such as Prometrium and Crinone vaginal gel). According to pharmacist Maria Ahlgrimm, R.Ph., an Association Advisor and co-author of The HRT Solution, bio-identical hormones have a different biological effect than synthetic or animal-derived hormones. They fit like a key in a lock, into the hormone receptors, making the hormones readily available within the body and better able to be broken down and eliminated. [No long-term clinical trials comparable to the Women’s Health Initiative have been conducted on bioidentical hormones. Risks are unknown.]

Endo and osteoporosis

A number of risk factors for osteoporosis are particularly relevant for women with endo:

* Hormonal treatments (such as GnRH agonist therapy) that purposely reduce estrogen levels

* Hormone imbalances, including problems with progesterone (a bone-stimulating hormone)

* Gastrointestinal problems that could lead to poor absorption of bone-building minerals and other nutrients

* Severe allergic disease, which increases body acidity, resulting in minerals being pulled from the bones to balance blood pH

Hormone therapy is now commonly used as addback therapy in premenopausal women who use GnRH agonists (the agonists put them into a “pseudomenopause”). Because women using the agonists can lose up to six percent of bone mineral density in the first six months of use, estrogen is added (usually with progestin or progesterone) to reduce this bone loss and allow the use of the therapy for longer than six months. We don’t know at thus time if repeated use of GnRH agonists will result in women entering menopause with below-average bone density. We also don’t know if add-back therapy successfully prevents bone loss; some studies show that it doesn’t completely.

One author suggests a baseline bone density test before starting GnRH therapy to determine wherner you have high or low bone density to start. A urine test (NTx) can also determine the rate of bone breakdown, which can help you and your doctor adjust your dose and type of HRT, or lead you to consider it, to prevent further bone loss.

From ENDOMETRIOSIS by Mary Lou Ballweg and the Endometriosis Association. Copyright @ 2004 by the Endometriosis Association. Reprinted by permission of the McGraw-Hill Companies, www.books.mcgraw-hill.com (ISBN 0-07-141248-4) All rights reserved. US$17.95 CDN$25.95, pp. 494, including 36 pages of footnotes.
Copyright Initiatives for Women’s Health, Inc. Nov/Dec 2003
Provided by ProQuest Information and Learning Company. All rights Reserved

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10

Mar

New crowdsourced book on endometriosis

Posted by steph  Published in Books, Endometriosis Awareness

Introducing the First Crowdsourced Book on Endometriosis!

Get the book now Full-color paperback ($29.95 + s/h) – view sample pages

PDF via email ($19.95)

FREE PDF via email if you invite 19 friends to join CureTogether

Endometriosis Heroes:
137 Women Share Their Experiences and Treatments

By Alexandra Carmichael and 137 CureTogether Members

All proceeds from Endometriosis Heroes go to fund the endometriosis data community at CureTogether.org.

62 pages

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Don't Have Endo? Please Read!

  • What Is Endometriosis?

  • The Letter From Survivors

  • Public Service Announcement!

  • We Are Not Seekers

  • What I Should Have Said

  • "...but have you tried..."

  • Sick Humor: The top ten worst
    suggestions commonly given to
    someone with a chronic illness


  • Our Life In Comics

Important Pages

  • Endopaedia

  • Research and Medical Journals

  • Myths about Endometriosis

  • YouTube Video Blogs of Yore

  • Applying For Disability

  • Be Aware!

  • Endo and Menopause

  • Is Endo A Cancer?

  • Job Discrimination

  • Fallen Endo Siblings

Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers are effective.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers relieve
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers reduce
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
Vicodin) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Strongest
painkillers relieve pain (Oxycontin,
Morphine)

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain. Stronger painkillers are
minimally effective. Strongest painkillers
reduce pain for 3-4 hours.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.
Strongest painkillers are only partially
effective.

10 - Unconscious. Pain makes you
pass out. Strongest painkillers are only
partially effective.

© Andrea Mankoski

Organisations

  • Endo Black

  • endoQueer

  • The Endo Coalition

  • endometriosis.org

  • World Endometriosis Society

  • Endometriosis UK

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • Endometriosis Research Center

  • Endometriosis Association

  • Endometriosis Foundation of America

  • Worldwide EndoMarch

  • Worldwide Organisations and Support Networks (ongoing update)

Endo Products


  • Naturally Hip
    - cloth menstrual pads

  • Pelvic Pain Solutions
    - Microwavable corn-filled cloth
    heating pads.


  • Endo Awareness swag
    - As found on Etsy

Archival Blogroll

 (Blogs I connected with from the early days)
  • Antonia's Epic Endo Journey
  • Canadian Girl In Pain
  • Chances Our
  • Chronic Healing
  • Dear Thyroid
  • Endo Empowered
  • Endo Friendo
  • Endo Times
  • Endo Trauma
  • Endo Writer
  • Endometriosis: The Silent Life Sentence
  • Field Notes from an Evolutionary Psychologist
  • Foxy In The Waiting Room
  • Get Well blog
  • I Will Not Suffer In Silence
  • Lupron Journal
  • My Endometriosis Story – Lily Williams Art
  • My Journey With Endometriosis
  • My Life With Endo & Infertility
  • Pop Goes The Feasible
  • Reading List & Resources for chronic pain, including endometriosis
  • Resilience
  • Sallie Speaks
  • SansUterus
  • Surviving Endo
  • The Ins and Outs of Endo
  • Whispered Words …
  • Yellow Paper Dress

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Recent Post

  • Trans Endo Siblings – I see you.
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  • Endometriosis In Transgender Men Is Still Poorly Understood
  • Stats on Endometriosis
  • Worldwide Virtual Endometriosis Conference
  • Did you know? Racism led to the belief that Endometriosis only develops in white career women who delay childbirth.
  • The Mankoski Pain Scale

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