I decided it was time for a change... So the blog has a new look!
What do you think? Please provide your feedback in the comments section.
In addition to changing some colors and fonts, I have added widgets on the environment and green living.
These topics are of particular importance to endometriosis patients in light of the effects environmental factors can have on endometriosis patients. (See the 3 posts from this past week regarding environment and endometriosis). I also deleted some widgets that were no longer adding value.
In addition, I moved the section previously titled "Some Of My Most Frequently Visited Sites" to the right sidebar (see the bottom of the sidebar).
Look for the "Worthwhile Reading" section to see these informative links.
I think you'll find the new look easier on the eyes and more engaging.
Please let me know what you think!
:)
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/29/2008
Endometriosis Blog: Environment And Endometriosis... What Can We Do To Minimize Symptoms And/Or Possibly Prevent Endometriosis In Our Loved Ones??
Below is a follow-up to two previous posts:
From the Monday August 25 post: “Endometriosis Blog: What Is Epigenetics?? Can Environment Become Heredity”??
From the Tuesday August 26 post: “Endometriosis Blog: Are There Environmental Factors that We Can Control”??
Are you feeling overwhelmed with the problems associated with environmentally harmful products and ingredients??
Here are some websites that may help you to make safer choices for your health & the health of your loved ones!!
Here are some more resources:
In addition to the above sites, you may wish to do more reading on the topic of environment and endometriosis...
Here are a couple of books that I have been really wanting to read for some time but have not gotten to as of yet. (Maybe an endo blog reader out there may read one or both of these books and let me know what they think!!! I’d be happy to post your thoughts on one or both of these books here in this blog).
Unfortunately, there don’t seem to be enough hours in the day for me to read all of the books I’d like to read (!!) but I’ve wanted to read these two for awhile:
If you look through the following website:
http://www.ourstolenfuture.org/Sources/recentbooks.htm, you’ll see a list of books about endocrine disruption.
Endocrine disruption is an important topic for endometriosis patients and changing the personal care products you use can make a huge difference!! (See the Skin Deep website above on how to find safer products to use).
Maybe you have some insights on the environment and endometriosis??? Do you have information on products that are safer than those mass marketed???
This blog doesn’t normally get into specific brands but this is one area where specific brands may be extremely helpful to assist endometriosis patients to know what to look for or what to avoid!
For example, companies like Natracare sell pads and tampons that are made using organic materials. Since the chemicals used to bleach the mass marketed products can actually harm women with endometriosis, it’s good to know there are alternative products available!
Maybe you know of website links or books that provide information on how to reduce or minimize harmful chemical exposures for endometriosis patients?
If so, PLEASE provide this information in your comments to the environmental articles here on this endometriosis and chronic illness blog. You could be helping other patients make healthier choices!!
Some of the best information I have become aware of over the years came from fellow chronically ill patients! So please keep those comments coming!! You may very well have information that can help fellow endometriosis and chronic illness patients tremendously!!
Thank you in advance for your feedback and valuable information. I know there are readers out there with useful information to offer to fellow patients! I have learned over the years that fellow patients can provide incredible amounts of information to assist others who are suffering. Let’s work together to get that helpful information flowing freely!
Finally, I'd like to end with some good news regarding the preventability of many illnesses that ties together much of what has been covered in this post and the two preceding it. Check out this portion of the "Our Stolen Future" website:
From the Monday August 25 post: “Endometriosis Blog: What Is Epigenetics?? Can Environment Become Heredity”??
From the Tuesday August 26 post: “Endometriosis Blog: Are There Environmental Factors that We Can Control”??
Are you feeling overwhelmed with the problems associated with environmentally harmful products and ingredients??
Here are some websites that may help you to make safer choices for your health & the health of your loved ones!!
Personal Care Product/Cosmetic Safety:
http://www.cosmeticdatabase.com/index.php?nothanks=1 (This is an EXCELLENT database I’ve had listed in my favorites for some time now. I highly recommend it. It has an enormous amount of information and you can search for specific products and compare their safety to other products)!!
http://www.safecosmetics.org/ (The Campaign for Safe Cosmetics is a coalition working to protect your health by calling for the elimination of chemicals used in the cosmetics industry linked to cancer, birth defects, and other health problems).
Is there triclosan in your soap or other personal care products? You may want to read this...
You may also be interested in this...
Environmental Working Group’s Report on Pesticide in Soap, Toothpaste and Breast Milk:
Here are some more resources:
Health Care Without Harm
http://www.noharm.org/us
Women’s Voice for the Earth:
http://www.womenandenvironment.org/newsreports/media/News%20Item%202008/Postarticle
In addition to the above sites, you may wish to do more reading on the topic of environment and endometriosis...
Here are a couple of books that I have been really wanting to read for some time but have not gotten to as of yet. (Maybe an endo blog reader out there may read one or both of these books and let me know what they think!!! I’d be happy to post your thoughts on one or both of these books here in this blog).
Unfortunately, there don’t seem to be enough hours in the day for me to read all of the books I’d like to read (!!) but I’ve wanted to read these two for awhile:
1 - Our Stolen Future by Theo Colborn, Dianne Dumanoski, and John Peterson Myers
See website associated with the above book at---
http://www.endometriosisassn.org/environment.html
2 - Silent Spring by Rachel Carson
If you look through the following website:
http://www.ourstolenfuture.org/Sources/recentbooks.htm, you’ll see a list of books about endocrine disruption.
Endocrine disruption is an important topic for endometriosis patients and changing the personal care products you use can make a huge difference!! (See the Skin Deep website above on how to find safer products to use).
Maybe you have some insights on the environment and endometriosis??? Do you have information on products that are safer than those mass marketed???
This blog doesn’t normally get into specific brands but this is one area where specific brands may be extremely helpful to assist endometriosis patients to know what to look for or what to avoid!
For example, companies like Natracare sell pads and tampons that are made using organic materials. Since the chemicals used to bleach the mass marketed products can actually harm women with endometriosis, it’s good to know there are alternative products available!
Maybe you know of website links or books that provide information on how to reduce or minimize harmful chemical exposures for endometriosis patients?
If so, PLEASE provide this information in your comments to the environmental articles here on this endometriosis and chronic illness blog. You could be helping other patients make healthier choices!!
Some of the best information I have become aware of over the years came from fellow chronically ill patients! So please keep those comments coming!! You may very well have information that can help fellow endometriosis and chronic illness patients tremendously!!
Thank you in advance for your feedback and valuable information. I know there are readers out there with useful information to offer to fellow patients! I have learned over the years that fellow patients can provide incredible amounts of information to assist others who are suffering. Let’s work together to get that helpful information flowing freely!
Finally, I'd like to end with some good news regarding the preventability of many illnesses that ties together much of what has been covered in this post and the two preceding it. Check out this portion of the "Our Stolen Future" website:
http://www.ourstolenfuture.org/Commentary/JPM/2006-0401goodgenesgonebad.html
So don't feel helpless. Information is power. Using the above information to alter your lifestyle choices can help you personally to be healthier and, yes, to possibly prevent loved ones from experiencing the challenges of endometriosis (and other illnesses)!!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/26/2008
Endometriosis Blog: Are There Environmental Factors That We Can Control??
Many women with endometriosis are aware that it can be a genetic disease. While some women are the only ones in their family who have endometriosis (that they are aware of, anyway!), many other women don’t understand why they have endometriosis.
Maybe you already have endometriosis and you don't want to do anything to make it worse. Maybe you have endometriosis and don't want the illness to be expressed in loved ones who may already have genetics working against them. (See previous post: "Endometriosis Blog: What Is Epigenetics?? Can "Environment Become Heredity??)
Having a genetic predisposition to endometriosis does NOT necessarily mean that endometriosis will express itself in vulnerable individuals.
I’m certainly no scientist or medical researcher. However, I have heard presentations and I have read about environmental links between endometriosis and various chemicals and pesticides. Such potentially harmful chemicals and pesticides can be found in personal care products, cosmetics, and even the food we eat!
Below are numerous sources of information regarding environmental factors that may impact endometriosis patients.
I believe it's good to have some basic understanding of products and chemicals that can be particularly harmful to endometriosis patients (or that may help endometriosis to express itself in genetically vulnerable individuals).
Here is some information that you may find of interest if you have endometriosis and/or if you have loved ones who don't have endometriosis but may be at increased risk genetically for it.
By getting informed about environmental risks associated with endometriosis, it's possible you may be able to prevent someone you love from experiencing this potentially devastating illness!
Here are some websites of interest to learn more about this...
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
First, the Endometriosis Association’s “Endo & the Environment” website section:
http://www.endometriosisassn.org/environment.html (general environmental information)
Here is some more information from The Endometriosis Association:
http://www.endometriosisassn.org/pvc.html (information on PVC)
The Endometriosis Association’s information on endocrine disruptors, PCBs (polychlorinated biphenyls), and dioxin (including downloadable PDFs):
http://www.endometriosisassn.org/pcb.html
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
All of this information can be overwhelming. While learning about the many risk factors associated with endometriosis can be daunting, the good news is that there are factors you can control like avoiding chemicals known to be potentially harmful, focusing on sound nutritional choices (i.e. eating as much organic food as possible to avoid pesticide exposure, for example), and using products that are less likely to aggravate symptoms or put loved ones at risk for developing or worsening endometriosis.
Look in the next post for some more information regarding risk factors for endometriosis patients and some possible ways to prevent or minimize suffering associated with endometriosis.
While the process of learning about potentially harmful products and chemicals for endometriosis patients can be overwhelming, I believe it's important to get a handle on the basic information. Having knowledge of what the risks are and how to minimize or avoid them is a way of taking control and managing (or maybe even preventing) endometriosis symptoms.
So stay tuned for more information that may help you to take some control when dealing with this challenging illness. Every little bit helps and making some small changes can make a difference.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Maybe you already have endometriosis and you don't want to do anything to make it worse. Maybe you have endometriosis and don't want the illness to be expressed in loved ones who may already have genetics working against them. (See previous post: "Endometriosis Blog: What Is Epigenetics?? Can "Environment Become Heredity??)
Having a genetic predisposition to endometriosis does NOT necessarily mean that endometriosis will express itself in vulnerable individuals.
I’m certainly no scientist or medical researcher. However, I have heard presentations and I have read about environmental links between endometriosis and various chemicals and pesticides. Such potentially harmful chemicals and pesticides can be found in personal care products, cosmetics, and even the food we eat!
Did you know that cooking/microwaving foods in plastic can cause chemicals from the plastic to leach into the food? Did you know that some of these leached chemicals can mimic estrogens in the body?!
Did you know that PVC (i.e. used to make shower curtains, IV fluid bags, and many other items) can also cause harm... particularly to women with endometriosis whose immune systems are likely to already be compromised (and who have more medical interventions than many other people do)?!
Are you aware that the bleaching process used to whiten sanitary pads and tampons (to apparently create the illusion that they are "sterile") can be harmful too and that there are organic alternatives available on the market?!
Below are numerous sources of information regarding environmental factors that may impact endometriosis patients.
I believe it's good to have some basic understanding of products and chemicals that can be particularly harmful to endometriosis patients (or that may help endometriosis to express itself in genetically vulnerable individuals).
Here is some information that you may find of interest if you have endometriosis and/or if you have loved ones who don't have endometriosis but may be at increased risk genetically for it.
By getting informed about environmental risks associated with endometriosis, it's possible you may be able to prevent someone you love from experiencing this potentially devastating illness!
Here are some websites of interest to learn more about this...
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
First, the Endometriosis Association’s “Endo & the Environment” website section:
http://www.endometriosisassn.org/environment.html (general environmental information)
Here is some more information from The Endometriosis Association:
http://www.endometriosisassn.org/pvc.html (information on PVC)
The Endometriosis Association’s information on endocrine disruptors, PCBs (polychlorinated biphenyls), and dioxin (including downloadable PDFs):
http://www.endometriosisassn.org/pcb.html
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
All of this information can be overwhelming. While learning about the many risk factors associated with endometriosis can be daunting, the good news is that there are factors you can control like avoiding chemicals known to be potentially harmful, focusing on sound nutritional choices (i.e. eating as much organic food as possible to avoid pesticide exposure, for example), and using products that are less likely to aggravate symptoms or put loved ones at risk for developing or worsening endometriosis.
Look in the next post for some more information regarding risk factors for endometriosis patients and some possible ways to prevent or minimize suffering associated with endometriosis.
While the process of learning about potentially harmful products and chemicals for endometriosis patients can be overwhelming, I believe it's important to get a handle on the basic information. Having knowledge of what the risks are and how to minimize or avoid them is a way of taking control and managing (or maybe even preventing) endometriosis symptoms.
So stay tuned for more information that may help you to take some control when dealing with this challenging illness. Every little bit helps and making some small changes can make a difference.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/25/2008
Endometriosis Blog: What Is Epigenetics?? Can "Environment Become Heredity"??
I will not be able to post at my previous frequency anytime soon but wanted to post something new.
I came across a fascinating article today. It was of interest to me as an endometriosis patient. I think it is of particular interest to those patients who have also experienced infertility, cancer, and other issues that are often affected by environmental factors.
If you can get through some scientific terminology, this article is worth the effort. If you feel like you're getting "stuck" in the more scientific terms, try to keep reading past them to get the main idea of the article. The notion that "environment can become heredity" is really an interesting concept.
According to an article called "Environment Becomes Heredity" by a science writer named Valerie Brown (Miller-McCune - Turning Research Into Solutions, August 24, 2008):
Here's the link to this interesting article "Environment Becomes Heredity":
http://www.miller-mccune.com/article/489
If you managed to wade through the scientific information in the above article and would like to learn more about epigenetics, see:
http://en.wikipedia.org/wiki/Epigenetics
Look for more information on endocrine disruption (something mentioned briefly in this article and something of particular interest to endometriosis patients) in upcoming posts.
Finally, here is one more article on epigenetics. It's not as recent as the article mentioned above but it is also interesting:
http://www.ehponline.org/members/2006/114-3/focus.html
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I came across a fascinating article today. It was of interest to me as an endometriosis patient. I think it is of particular interest to those patients who have also experienced infertility, cancer, and other issues that are often affected by environmental factors.
If you can get through some scientific terminology, this article is worth the effort. If you feel like you're getting "stuck" in the more scientific terms, try to keep reading past them to get the main idea of the article. The notion that "environment can become heredity" is really an interesting concept.
According to an article called "Environment Becomes Heredity" by a science writer named Valerie Brown (Miller-McCune - Turning Research Into Solutions, August 24, 2008):
"Advances in the field of epigenetics show that environmental contaminants can turn genes “on” and “off,” triggering serious diseases that are handed down through generations. But there’s also a more heartening prospect: The same diseases may be treated by relatively simple changes in nourishment and lifestyle."
Here's the link to this interesting article "Environment Becomes Heredity":
http://www.miller-mccune.com/article/489
If you managed to wade through the scientific information in the above article and would like to learn more about epigenetics, see:
http://en.wikipedia.org/wiki/Epigenetics
Look for more information on endocrine disruption (something mentioned briefly in this article and something of particular interest to endometriosis patients) in upcoming posts.
Finally, here is one more article on epigenetics. It's not as recent as the article mentioned above but it is also interesting:
http://www.ehponline.org/members/2006/114-3/focus.html
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Endometriosis Blog: Quote of the Day
Quote of the day... The importance of communicating and discussing our challenges (and triumphs!) with others is crucially important. Please see the quote below. It sums up the importance of keeping lines of communication open:
This quote was provided by:
Ed Madara ed@selfhelpgroups.org
Director 973-989-1122 x15
N.J. & American Self-Help Group Clearinghouses
www.selfhelpgroups.org
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
"However much we are affected by the things of the world,
however deeply they may stir and stimulate us,
they become human for us only when we can discuss them with our fellows...
We humanize what is going on in the world and in ourselves only by speaking of it,
and in the course of speaking of it we learn to be human."
- Hanna Arendt in "Confiding"
This quote was provided by:
Ed Madara ed@selfhelpgroups.org
Director 973-989-1122 x15
N.J. & American Self-Help Group Clearinghouses
www.selfhelpgroups.org
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/19/2008
Endometriosis Blog: Family Emergency/Blog On Hold
Due to a family emergency, my blogging is on hold for now. Please read through the numerous previous articles in the meantime!!! The archives are chock full of articles. Please be patient until I can resume a more typical blogging schedule! Thank you!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/18/2008
Endometriosis Blog: Gratitude Moment!
Above is an image I wanted readers to have the pleasure of viewing. This symbol is called a mandala...
It was used with permission from Jennifer Jones at:
http://www.mandalaspiritart.com/
You can learn more about mandalas at the above site. Many more mandalas can be found there.
Today I wanted to post something simple but meaningful. I wanted to "lighten things up" with the beautiful image above... and I wanted to post a "Gratitude Moment" to two wonderful women.
I'd like to thank these two very special people!!!
These are two women who have consistently posted thought-provoking, supportive, insightful, hopeful, positive comments on this blog. If you look through the comments on most articles on this blog, you'll see one or both of them listed as having commented:
Alicia (aka "yaya")
Mckay k
These two women have been incredibly supportive of this blog and I wanted to dedicate a "Gratitude Moment" to each of them!
Each of them is also a blogger.
Alicia has endometriosis and infertility. She occasionally includes these as topics on her "Random Thoughts" blog. (She descibes her Yayastuff blog as --- "Random thoughts, Daily Thoughts, Life, Friends, Family, Nanny Job"):
http://yayastuff.blogspot.com/
Mckay k writes two blogs. One is on chronic illness and the other is about her Koi Pond/Garden. (She is an avid gardener and also has multiple chronic illnesses):
Chronic Illness Blog:
http://livingwithachronicillness.blogspot.com/
Koi Pond Blog:
http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=123987592
These two women are strong, intelligent, supportive, helpful, and kind. I am grateful to have them in my life. One lives nearby and another lives far away. Regardless of who lives where, both of these women have had a profound impact on this blog with their frequent comments and great observations/information!
I would like to publicly thank each of them for helping me be a better blogger and a better person! They are both inspirational to me!
THANK YOU Alicia! THANK YOU Mckay k!
PLEASE NOTE:
This was written last week. I was unable to access my computer and post this at that time. I will probably not be able to update my blog regularly for awhile. I will get back on schedule as soon as possible but wanted to finally get this posted.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/11/2008
Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!
Awhile back, I published the results of our first POLL --- see July archives for that article: "Wednesday, July 16, 2008 UPDATE: What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer). A Follow-up!"
The most selected category in that poll was co-existing illnesses/conditions.
Therefore, I have added two new links on "co-existing illnesses to endometriosis" at the bottom of my homepage in my most frequently visited sites. (Just scroll down to the bottom of this page to view the links).
Please check out these two just-added links to chronic illness sites on co-existing illnesses to endometriosis:
IC Disease - Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions:
http://icdisease.today.com/category/endometriosis/
Fighting Fatigue.org - Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia & Interstitial Cystitis Disease:
http://www.fightingfatigue.org/
*****P.S. Speaking of POLLS, please don't forget about the support group/self-help group POLL located in the right sidebar of this blog!!! The more feedback I get from readers, the better I can tailor this blog to meet your needs!*****
+++++++++++++++
UPDATE-----Due to a programming problem I haven't yet been able to fix, the favorites at the bottom of my blog have a space above them. They are still there!! It just takes scrolling down all the way to the bottom to see them. I apologize for the inconvenience. To see the new links mentioned in this post (among others), please just scroll all the way to the bottom of this homepage and you will see them. Thank you for your patience while I figure out why this programming problem happened and what to do about it.
+++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
The most selected category in that poll was co-existing illnesses/conditions.
Therefore, I have added two new links on "co-existing illnesses to endometriosis" at the bottom of my homepage in my most frequently visited sites. (Just scroll down to the bottom of this page to view the links).
Please check out these two just-added links to chronic illness sites on co-existing illnesses to endometriosis:
IC Disease - Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions:
http://icdisease.today.com/category/endometriosis/
Fighting Fatigue.org - Top Resource Site For Chronic Fatigue Syndrome, Fibromyalgia & Interstitial Cystitis Disease:
http://www.fightingfatigue.org/
*****P.S. Speaking of POLLS, please don't forget about the support group/self-help group POLL located in the right sidebar of this blog!!! The more feedback I get from readers, the better I can tailor this blog to meet your needs!*****
+++++++++++++++
UPDATE-----Due to a programming problem I haven't yet been able to fix, the favorites at the bottom of my blog have a space above them. They are still there!! It just takes scrolling down all the way to the bottom to see them. I apologize for the inconvenience. To see the new links mentioned in this post (among others), please just scroll all the way to the bottom of this homepage and you will see them. Thank you for your patience while I figure out why this programming problem happened and what to do about it.
+++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/08/2008
Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!
On August 8, 2001 we held our first local endometriosis support group meeting.
Prior to the meeting, I had done various things to create awareness about our new group.
I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.
When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.
I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.
Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.
In the last 7 years our group has been busy:
+ Our support group was featured on the local news
+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia
+ We shared information regarding hormone replacement therapy
+ We shared information about local physicians
+ We learned of a national news story regarding disability claims
+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)
+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)
+ I passed along online newsletter from the Interstitial Cystitis Association
+ We shared information about making medical exams easier (especially pelvic exams)
+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist
+ We learned of a website about adhesions
+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)
+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)
+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery
+ We merged 2 support groups
+ We got local TV stations to agree to air endo public service announcements
+ We generated awareness about endometriosis in our community
+ Occasionally group members even brought snacks to meetings!
+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)
+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines
+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)
+ Some group members signed a petition objecting to "drive through mastectomies"
+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy
+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.
+ A group member shared a recipe book that might be helpful for endometriosis patients
+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices
+ Group members supported each other during difficult times (such as surgeries)
+ We shared info with each other regarding infertility HMO coverage
+ We donated a copy of The Endometriosis Sourcebook to a public library
+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information
+ We learned of a study showing that chronic pain can alter the brain
+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!
+ We shared information regarding a drug recall that impacted some of our group members
+ We shared information on books that group members found helpful
+ We supported patients who experienced miscarriage and infertility
+ We discussed prescription treatments, surgical options, and alternative medicine modalities
+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)
+ We shared links to news stories we'd seen on TV or in print
+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)
+ We LISTENED to each other!
***UPDATE***
RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient
Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Prior to the meeting, I had done various things to create awareness about our new group.
I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.
When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.
I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.
Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.
In the last 7 years our group has been busy:
+ Our support group was featured on the local news
+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia
+ We shared information regarding hormone replacement therapy
+ We shared information about local physicians
+ We learned of a national news story regarding disability claims
+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)
+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)
+ I passed along online newsletter from the Interstitial Cystitis Association
+ We shared information about making medical exams easier (especially pelvic exams)
+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist
+ We learned of a website about adhesions
+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)
+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)
+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery
+ We merged 2 support groups
+ We got local TV stations to agree to air endo public service announcements
+ We generated awareness about endometriosis in our community
+ Occasionally group members even brought snacks to meetings!
+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)
+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines
+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)
+ Some group members signed a petition objecting to "drive through mastectomies"
+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy
+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.
+ A group member shared a recipe book that might be helpful for endometriosis patients
+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices
+ Group members supported each other during difficult times (such as surgeries)
+ We shared info with each other regarding infertility HMO coverage
+ We donated a copy of The Endometriosis Sourcebook to a public library
+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information
+ We learned of a study showing that chronic pain can alter the brain
+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!
+ We shared information regarding a drug recall that impacted some of our group members
+ We shared information on books that group members found helpful
+ We supported patients who experienced miscarriage and infertility
+ We discussed prescription treatments, surgical options, and alternative medicine modalities
+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)
+ We shared links to news stories we'd seen on TV or in print
+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)
+ We LISTENED to each other!
***UPDATE***
RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient
Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!
I'll end this post with a quote regarding support & self-help groups:
"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."
From American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/07/2008
Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!
We’ll call post this “Part Two”:
I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.
Here is where I left off:
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!
So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…
The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/
Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.
The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!
Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).
Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.
Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.
I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.
IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!
At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!
So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.
What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.
The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.
By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!
The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.
From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.
I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!
The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.
Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!
Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.
Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.
Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.
I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!
So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.
To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.
Please see my previous posts:
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.
This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.
For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.
The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.
Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.
This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.
I am still in touch with the former support Group-Leaders from both cities!
It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.
EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!
I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!
I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!
I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!
I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!
You may have an appropriate support group in your backyard and not even know it!!!
I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.
Here is where I left off:
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!
So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…
The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/
I PERSONALLY HAVE FOUND A WOMAN NAMED SHELLEY HOUCHIN TO BE EXTRAORDINARILY HELPFUL AND SUPPORTIVE! SHE IS THE SUPPORT PROGRAM COORDINATOR AT THE ENDOMETRIOSIS ASSOCIATION HEADQUARTERS. I WOULD HIGHLY RECOMMEND CONTACTING SHELLEY IF YOU HAVE ANY QUESTIONS ABOUT ENDOMETRIOSIS SUPPORT GROUPS OR THE ENDOMETRIOSIS ASSOCIATION IN GENERAL. THIS WOMAN IS VERY PASSIONATE ABOUT HELPING ENDOMETRIOSIS PATIENTS AND IS A FANTASTIC RESOURCE! SO IF YOU CALL OR EMAIL THE ENDOMETRIOSIS ASSOCIATION, JUST ASK FOR SHELLEY HOUCHIN AND SHE WILL BE VERY HELPFUL!!!
Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.
The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!
Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).
Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.
Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.
I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.
IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!
At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!
So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.
What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.
The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.
By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!
The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.
From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.
I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!
The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.
Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!
Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.
Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.
Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.
I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!
So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.
To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.
Please see my previous posts:
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.
This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.
For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.
The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.
Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.
This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.
I am still in touch with the former support Group-Leaders from both cities!
It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.
EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!
I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!
I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!
I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!
I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!
You may have an appropriate support group in your backyard and not even know it!!!
I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:
“One of the most important capabilities of community self-help groups is that ordinary people can develop such groups in their local communities when none exist, and subsequently their group usually serves as an extraordinary resource to many in that area for several years. I still find it amazing that to start a group, a person doesn't need a grant, an agency, or even an office - just the inspiration and a few other people who share their experience and hope. What significantly helps in providing such inspiration is a person's knowledge of an existing national organization or a model group, which can provide them with basic information so they don't have to ‘re-invent the wheel.’ "
This quote is attributed to E. Madara, "Mutual Aid Self-Help Group Developments” Community Psychologist, 39 (3), Fall, 2006, p. 21.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/05/2008
Endometriosis Blog: My Personal History As An Endometriosis Patient
I decided for today's post to go back to the "beginning" of my journey with endometriosis. I feel I should give some background on what led up to the diagnosis… to put things in context. After 10 years of suffering, I was finally diagnosed with endometriosis by a laparoscopy at the age of 23.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/04/2008
Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
This is a follow-up to the following post:
Monday, July 28, 2008 Endo Blog: What Is "Self-Help"?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
Since posting this article, I have received some fantastic information offline that I'd like to share with you about self-help groups and support groups.
First, I would like to re-emphasize that if there is not an endometriosis support group in your area (or a support group for other chronic illnesses)... that you might want to give serious consideration to starting one yourself!!
If you don't know where to begin finding or forming a group, here is an organization that can help!!!
http://www.selfhelpgroups.org/
I would also like to include here the first of many interesting quotes that were sent to me on the topic of self-help and/or support groups, their value, and the research that supports their worthwhile contributions to those who need them (not to mention the health benefits that volunteering provides to the person volunteering)!
IF YOU NEED SUPPORT AND DON'T KNOW ANYONE WITH ENDOMETRIOSIS IN YOUR LOCAL AREA, JOINING OR FORMING A SUPPORT GROUP FOR YOUR ILLNESS IS EXTREMELY HELPFUL, IF NOT LIFE-CHANGING!
Anyway, I will close with one of the quotes that was recently sent to me. I received a treasure trove of quotes. So you can expect to see many more where this one came from:
Self-help and/or support groups are invaluable to endometriosis patients!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Monday, July 28, 2008 Endo Blog: What Is "Self-Help"?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
Since posting this article, I have received some fantastic information offline that I'd like to share with you about self-help groups and support groups.
First, I would like to re-emphasize that if there is not an endometriosis support group in your area (or a support group for other chronic illnesses)... that you might want to give serious consideration to starting one yourself!!
If you don't know where to begin finding or forming a group, here is an organization that can help!!!
http://www.selfhelpgroups.org/
I would also like to include here the first of many interesting quotes that were sent to me on the topic of self-help and/or support groups, their value, and the research that supports their worthwhile contributions to those who need them (not to mention the health benefits that volunteering provides to the person volunteering)!
IF YOU NEED SUPPORT AND DON'T KNOW ANYONE WITH ENDOMETRIOSIS IN YOUR LOCAL AREA, JOINING OR FORMING A SUPPORT GROUP FOR YOUR ILLNESS IS EXTREMELY HELPFUL, IF NOT LIFE-CHANGING!
Anyway, I will close with one of the quotes that was recently sent to me. I received a treasure trove of quotes. So you can expect to see many more where this one came from:
"Mutual help groups are a powerful and constructive means for people to help themselves and each other. The basic dignity of each human being is expressed in his or her capacity to be involved in a reciprocal helping exchange. Out of this compassion comes cooperation. From this cooperation comes community."
- Phyllis Silverman, Ph.D., Dept. of Psychiatry, Harvard Medical School, in The Self-Help Sourcebook, 6th Edition, 1998, p. 26 (Our Clearinghouse provides free copies of the 7th Edition of our Sourcebook to those college faculty, who wish to use/distribute free copies to any of their classes. Anyone can use our more up-to-date, free, online keyword-searchable database of national, online, and model groups. Just go to www.selfhelpgroups.org click on the "American Clearinghouse," and enter your keyword in the yellow box).
Self-help and/or support groups are invaluable to endometriosis patients!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
8/03/2008
Endometriosis Blog: Still Away From Endometriosis Blog But Hope To Be Back Soon!
I hope to be back very soon to write a proper post. I welcome your continued comments and will moderate the already-existing comments soon!!
Whether you are a regular reader of this blog or a first-time visitor, please feel free to look through previous postings and keep up the insightful comments!!
There is a fair amount of information in them and you are welcome to comment on any of the articles, regardless of when they were posted. I welcome your feedback!!!
The recent "listening to your body" post seems to have "struck a nerve" with many of you! I'm thrilled to see the number of responses that post has gotten because I truly believe it's a very important topic.
Readers have made some thought-provoking comments there and I would encourage readers to take a peek there if they haven't already.
Just look at the post: Wednesday, July 30, 2008 Endo Blog: Importance Of Listening To Your Body!!
Well... I'm afraid I need to run but have a great weekend! Here's wishing you a flare-free/pain-free day with your endometriosis or other chronic illness! :)
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Whether you are a regular reader of this blog or a first-time visitor, please feel free to look through previous postings and keep up the insightful comments!!
There is a fair amount of information in them and you are welcome to comment on any of the articles, regardless of when they were posted. I welcome your feedback!!!
The recent "listening to your body" post seems to have "struck a nerve" with many of you! I'm thrilled to see the number of responses that post has gotten because I truly believe it's a very important topic.
Readers have made some thought-provoking comments there and I would encourage readers to take a peek there if they haven't already.
Just look at the post: Wednesday, July 30, 2008 Endo Blog: Importance Of Listening To Your Body!!
Well... I'm afraid I need to run but have a great weekend! Here's wishing you a flare-free/pain-free day with your endometriosis or other chronic illness! :)
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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