Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise

If you visit the website for the National Invisible Chronic Illness Awareness Week 2008, you'll see many items that may interest you.

I'll include a small sampling of item examples on this post. See website below for more.

http://www.invisibleillness.com

There are T-shirts, license plate holders that say "www.invisibleillness.com" on them, mugs, static cling stickers for vehicle windows (at just $3.00 apiece!), etc.

By the way... please note that I don't get compensated in any way for directing people to these products. They looked good to me and I'm just passing that information along.

Here is a close up of the text on a T-shirt they are selling:



Here are some more images of items that might appeal to some of you. Just double click on the images to enlarge the pictures!



However, the best way to view the selection of merchandise is to simply view their site:

http://www.invisibleillness.com

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

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!!

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.

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:

"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.

Endo Blog: What Is "Self-Help"?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

I joined my first endometriosis support group in 1992 at the age of 23. I have been involved with endo support groups ever since.

When I formed a local endometriosis support group in 2001 (in another city from where I was first a group member), I took a class that another support group leader had highly recommended. It was excellent!

The class was on the topic: "facilitating self-help groups" and was taught by a trainer at my local branch of the Mental Health Association (see the National Mental Health Association website below):

http://www.nmha.org/

I found the class VERY helpful and it enabled me to learn some basic principles that I could apply when facilitating an endometriosis support group. About 20 people took this class alongside me; their reasons for taking the class were many and varied. Some people were taking the class as a requirement for their jobs. Others, like me, took the class because they wanted to become better informed before volunteering their time as a support group leader or meeting facilitator.

Today I did some searching on the Internet on the topic of "self-help" and I came across an interesting site:

http://www.selfhelpweb.org/

I did not have time to review the website in its entirety but the sections I skimmed through were thought-provoking and interesting to me.

What do you think...?

+ What is the value of self-help?
+ What is the difference between a self-help group and a support group, if any?
+ What is the significance of "giving back"?
+ How can it HELP your health to volunteer??

DID YOU KNOW THERE ARE HEALTH BENEFITS TO YOU FROM VOLUNTEERING???

That's right! Volunteering your time can give YOU health benefits!!

There is research to support this...

See the following website:

http://www.getinvolved.gov/newsroom/press/factsheet_health.asp

Perhaps you don't have a local endometriosis support group. Maybe you'd like to start one to help others in your area AND to help yourself? Networking with fellow patients is VERY HELPFUL! I have learned this from personal experience.

Here is an interesting quote I found at the "Get Involved!" link above:

“People who do volunteer work are much less likely to suffer illness. The close interpersonal relationships and community involvement that occur with volunteer service are tailor-made to enhance the healing process.”

—The Healing Power of Service by Edward V. Brown

I am not familiar with Edward V. Brown but I think his quote above is very true... based on my own personal experience. Support groups are certainly no cure for endometriosis and other chronic illnesses. However the power & value of networking with fellow patients cannot be emphasized enough!

What do you think? How do you benefit from the support of fellow endometriosis patients?

Have you ever stopped to think that "giving back" or volunteering could possibly give YOU health benefits?????

Please check out the sites above and see what you think!

Who knows? Maybe someone reading this will get inspired to volunteer time to a local endometriosis support group OR maybe even start an endometriosis support group if there isn't one available locally?

Let me know what you think about the idea that volunteering can enhance you immune system and lower your blood pressure, as was mentioned on the "Get Involved!" site above. It's amazing, isn't it??

The above site also says, "Volunteering helps to rebuild communities and solve serious social problems. And, according to research, it can also improve your physical and mental health!"

By helping each other, we can truly help ourselves and facilitate healing. It's a win-win for all involved.

I'd love to hear everyone's feedback on this one... :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

UPDATE: What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer). A Follow-up!

The Poll called "What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer)." is still located in the right sidebar. I just added a week to allow more readers to participate in the poll. Please scroll down in the pink (right) sidebar and cast your vote!

This feedback will help shape content of future articles to be posted right here on the endo blog.

THANK YOU in advance for partipating, if you have not already done so.

It's quick, easy, and will help me pick article topics from here on out!

THANKS!! :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Gratitude Moment: Taking Time to Thank Tracee Sioux who has been a GREAT Supporter!

About 3-4 months ago, I stumbled across a blog:

http://www.sosiouxme.com/.

It's written by a woman named Tracee Sioux (pronounced "Sue").

Here's a picture of Tracee Sioux. (I hope she doesn't mind that I used her picture without asking her first but that would have spoiled the surprise and her picture is all over the Internet thanks to her blog so I don't think she will mind):

I found her blog simply engrossing. I had looked at numerous blogs before I found Tracee's but suddenly I found myself posting comments to her articles and basically joining in the discussions taking place on her blog about a variety of topics. (Tracee writes a blog about the topic of empowering women and girls and I had plenty to say about those issues).

Sometime in March, I emailed Tracee directly (not a post on one of her comment boards but an email to the address listed on her site). Since March is endometriosis awareness month and since Tracee's blog seemed to be quite active, it occurred to me that it would be REALLY cool if she might consider the possibility of posting some information about endometriosis on her blog. (It turns out she has two separate blogs but the www.sosiouxme.com link will get you to both of them).

Anyway I emailed her with some very brief info on endometriosis and asked if there was any possibility that she might consider writing something up on endometriosis and posting on her blog. I figured a blog targeting empowering women and girls would be a good fit for reaching the audience that could benefit from endometriosis awareness!

Tracee wrote back immediately and agreed to write about endometriosis on her blog. I was thrilled. She took some information I sent her and combined it with her own perspective on endometriosis and/or the management of women's pain. (There has been research done that shows women's pain is undertreated as opposed to men's pain. See the "For Grace" site for more information about this topic):

http://www.forgrace.org/women/in/pain_home/.

Anyway, Tracee then wrote not one but TWO articles (one on each of her two blogs) about endometriosis and/or pain management for women! I was very excited.

I was thrilled and honored to have the opportunity for increasing endometriosis awareness through Tracee's blog. I was excited at the opportunity for outreach to endometriosis patients and their loved ones, I was pleased for endometriosis to be covered on a blog that gets lots of traffic, and I was touched that my simple email request had blossomed into two articles that could stand to help endometriosis patients (and their loved ones).

I followed Tracee's blogs regularly for weeks (actually for months). In that time I started to really be inspired about the possibility of starting my own blog. I was a bit vague on the details at first. Blogging is new to me. I didn't know where to start at first. I REALLY wasn't sure if I could maintain a blog properly because I didn't know if I had to post articles on a certain frequency. (With the multiple chronic illnesses and severe pain, there are times I just can't write articles and there is no way I could "sign up" for something with deadlines and pressure to produce just so much with a particular frequency/timing)!!!

I didn't discuss my "secret dreams" of starting a blog with anyone but talked quite a bit about Tracee's blog to my husband over a period of time. One day he asked me if I'd ever thought of starting my own blog. (I was thinking, "is he reading my mind?"). Well... I had actually given it lots of thought but hadn't voiced it to anyone (even my husband). This is very unlike me! I infamously wear my heart on my sleeve. Those who know me well know that I'm generally not the "secret-keeper" type and that I share my ideas and dreams quite openly in normal circumstances. However, this was something I had some concerns about. I didn't want to "sign up" for something that would end up burning me out or escalating my symptoms. I'm sick enough and couldn't risk undertaking a project that potentially could make me even sicker. A couple of weeks went by. Then Tracee emailed me one day asking the same question my husband had, "have you considered starting your own blog?"

Shortly thereafter Tracee came to the rescue. After pounding her with questions and listening to her GREAT tips, I realized that there are different types of blogs and I COULD make this happen. There ARE blogs that are tied to various media companies where you must produce 6 articles per week, for example. That got ruled out immediately for me due to my illnesses. So Tracee explained to me that I COULD have a blog where I set my own pace and simply post when I'm well enough to do so. That was just an example of the multitude of helpful tips and useful information Tracee Sioux provided me when I was contemplating starting a blog.

She truly inspired me. Yes, her tips and information were inspiring. However, she also inspired me because she is courageous and brave. Her blog tackles tricky and controversial topics at times. She speaks her mind! She does not let fear prevent her voice from being heard. Whether you agree with all of her opinions or not, she is strong and resilient and kind. She is thoughtful and supportive. She CARES!!!

So I just thought it would be appropriate to take a moment to post this "gratitude moment" and thank Tracee Sioux for inspiring me to use my voice to speak out on behalf of endometriosis patients around the world; to speak boldly about women's choices to advocate for themselves when navigating the landmine that is our healthcare system in the U.S.; to "get the word out" to people (men and women, patients and medical professionals... anyone interested in listening or posting their feedback comments here); to generate more awareness about the potentially devastating illness we call endometriosis...

I've seen endometriosis sidetrack or decimate careers, endanger marriages or contribute to divorces happening, cause heartbreaking infertility, cause excruciating and debilitating pain... and so much more! I have met face-to-face (in endometriosis support groups in a couple of cities and their outlying areas in which I've lived over the years) with countless women who are SO sick yet somehow manage to do so much! Unfortunately, sometimes they do "so much" at their own peril. I know ALL about this topic because I went from working 80-hour weeks about 14-15 years ago to now being too sick to work outside the home at all. Pushing the body (and mind) past its limits can have devastating results.

So I'd like to thank Tracee Sioux, for her role in inspiring me to start an endometriosis blog. My intent is to reach out to endometriosis patients and their families, to provide information they may find useful or interesting, to soak up their feedback on the comments to the articles, to hopefully get "guest blogging" rolling eventually (if you have story ideas, let me know), etc.

I am not a medical professional. I am an endometriosis patient whose symptoms began 26 years ago. At my current age of 39, I been through a great deal with endometriosis. From pharmaceuticals and surgery to any valid alternative medicine methods/info I could get my hands on, I have learned and grown so much. My endometriosis support group has been a massive well of info and support!

I hope to incorporate what I've learned from personal experience and from my role as an endometriosis support group co-leader for almost 7 years now into this blog. I want to HELP PEOPLE attain a higher quality of life, be active participants in their healthcare, advocate for their rights when interacting with medical professionals, etc.

I have seen what a relatively small local support group can do to connect endo patients with other endometriosis patients who simply "get it", to help them truly network with fellow patients (a HUGE benefit!!), and to simply have a free exchange of information that positively impacts all who participate!!!

IT IS VERY TOUCHING HOW MUCH SIMPLY CONNECTING WITH FELLOW PATIENTS CAN DO!!!

With this blog, I hope to reach MORE people. My intent is to create on online community of sorts... where readers like you can stop by in moments of need, visit the blog on a regular basis to "stay in the loop" about endo happenings, have the chance to interact with other endometriosis patients (and other chronically ill patients as well)...

I just wanted to take a moment to publicly thank Tracee Sioux.. for her support, encouragement, information, and kindness. Her input was very helpful in me getting out of the "fear zone" about starting a blog... and simply jumping in and doing it! I hope this blog proves helpful, useful, informative, etc. My intent is to provide a comfortable place for interested readers to read posts, write comments/feedback, and perhaps even submit their own ideas for topics of interest, etc.

We're only 20 days in on this blog and I know I have to pace myself. There will be times when I'm too sick to post. When this happens, please check back! I'll post again as soon as I am able.

The more active this blog becomes, the more people we reach. With estimates as high as 80+ million women worldwide who are endometriosis patients AND with the incidence of co-existing conditions for so many endometriosis patients, I believe the need for endometriosis support and information is VAST and I hope to do my small part in providing information/support and a forum for readers' feedback on a variety on endometriosis topics and related topics (such as the topic of chronic illness in general).

I hope to live up to the challenge ahead!

Right now, I just want to thank Tracee again for her support, encouragement, and information. Her brave spirit, her fearlessness, her candid comments, and her honesty are inspirational to me.

Thank you Tracee!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Short and Sweet: Email Notifications of Comments Posted on the Endometriosis Blog

Would you like to get emails notifying you when this endo blog gets comments posted on it?? I have a few spots left if you'd like to sign up for notifications.

If you would like to receive emails updating you when new comments are posted here on http://www.endendoat.blogspot.com/, all I need is for you to notify me at the following email address: mailto:endendo@frontiernet.net?subject=Email%20Notifications%20for%20Endo%20Blog (If the email address you want to use for the notifications differs from the one you are emailing me from, please just let me know which one you want used for your endo blog comment updates).

This is a good option if you want to stay in the loop by seeing the comments posted (when they’re posted) in response to endo blog articles... without having to pull up the endo blog to check for updates all the time. The comment updates will come to you instead of the other way around! (You'll still need to pull up the blog to see new posts... but when you receive the email notifications of comments you'll most likely then visit the blog and take a peek around to see what's new anyway). You will know when comments are posted to this endo blog because your email notification will tell you when it happens.

There are a limited number of spots open to add email addresses for this feature. So it’s first come, first serve.

THIS POST WAS UPDATED on 6/21/08: I have been contacted offline about the signup for email notifications but have not yet filled up all of the spots. If you are interested in having your email address added to the list which will enable you to get notifications by email when new comments are added to this blog, simply send me an email at mailto:endendo@frontiernet.net?subject=Email%20Notifications%20for%20Endo%20Blog (Please remember that if the email address you want to use for the notifications DIFFERS from the one you are emailing me from, just let me know which one you want used for your endo blog comment updates). Also, please mention "email notifications" in the subject line so I will know it's a notification request. (This will assist me in differentiating valid requests from spam). Thanks!!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

The Beauty of Nature: Healing Illness

I thought this photo was beautiful enough to justify a post!!! Sometimes in our busy daily lives, we don't stop to fully appreciate the wonder and beauty of nature. For just about everyone nowadays, our daily lives are simply too rushed and complicated.

The beauty of the plants and flowers of nature isn't just the aesthetic appeal that is so clearly demonstrated by the remarkable tulip photo above.

As many of us know, nature is also beautiful in a very practical sense. We have many natural remedies on our list of choices for treating many illnesses... including endometriosis. Many natural supplements are made from a wide variety of plants.

How else can a beautiful flower help act as a healing agent besides by being pretty to look at? Think about how common it is to send flowers to someone who is sick or in the hospital. Yes, they are pretty. The thing is that maybe, just maybe, flowers are helping us more than we think. They can lift our spirits... for example.

When given to others, flowers can let someone know we're thinking of them at a difficult time. Flowers are customarily given at happy times too. In fact, they are used in celebration of many of the milestones of our lives. If you think about it, flowers are important throughout our lifetimes.

I realize this picture is of a tulip and not a rose. (This photo was simply too pretty for me to pass up and tulips are my favorite flowers besides). Plus, bees like tulips, right? :)

Anyway, the expression to "take time to stop and smell the roses" makes lots of sense... though most of us struggle to do so as often as we'd like. Obviously, "stopping to smell the roses (or tulips, as the case may be)!" is a great metaphor for slowing down, taking time for self-care, and simply relaxing. For some of us listening to calming music (perhaps even music with nature sounds incorporated) is very helpful, for some of us mindfulness meditation does wonders to quiet the mind, and for others a simple picnic outdoors on a sunny day can calm the body and mind down.

I have no doubt (layperson that I am) that appreciating nature on a regular basis and (frankly) experiencing something other than a car, work cubicle/office, or "on call" duty is truly HEALING! Maybe our immune systems get a boost from allowing those stress hormones to settle down. Maybe our breathing is less shallow and we are getting more oxygen with each breath. I'm sure the list goes on. The key is that nature is a healing force.

Many years ago... long before the white man crossed over to America, the Native Americans knew a great deal about the value of plants for medicinal purposes. (There obviously were no pharmaceuticals back then)! Unfortunately, the Native Americans' lives were never the same after the white man settled what is now the United States.

Fortunately, some Native American traditions have been passed along successfully generation after generation. I once had the privilege of attending a Native American Dance and Music Festival. I was amazed at the rich history of the Native Americans for using plants medicinally. These lessons weren't taught in my history books. However, we could all stand to learn from the Native Americans and their respect for nature.

Have a wonderful week and don't forget to appreciate the nature all around you.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

By the way, this elegant tulip photo is used with permission from "mimbrava" and was found on the Flickr website. If you click on the title of this post or the photo itself, it will route you to the Flickr website. Thank you "mimbrava" for a gorgeous, uplifting photo of my favorite flower.

Infertility and Endo

According to RESOLVE: The National Infertility Association (http://www.resolve.org/site/PageServer?pagename=lrn_wii_endo), “infertility is prevalent in women 30-40 years of age, though it can begin in the late teens and early twenties” and “about 40% of patients with endometriosis will experience some degree of infertility.”

Since infertility is so common in endo patients, I thought it might be helpful to write about it for this post.

One book on the topic of infertility I’ve heard good things about is: Waiting for Daisy by Peggy Orenstein:

Here are some comments on the book by members of an infertility support group:

“So different from every other infertility book I have read. So personal…”
“ More than just a slice of her life and journey, you really develop a connection to her experience.”
“ So all consuming, infertility is life shaping.”
“ Reminded me of how easy it was to lose track of the baby and focus only on the pregnancy.”
“ If you are at the point in your journey where you need to regroup or reconnect, hearing the details of someone else’s journey will help you get off your personal island.”
“ Such a personal account, I could relate to the ups and downs.”

To be honest with you, I have not read this book myself but I decided to include it here because I have heard such positive feedback about it. Those endo patients experiencing infertility may find this book helpful.

If you are experiencing infertility, I would look for an infertility support group in your area. The RESOLVE organization may be able to help you locate a support group near you. Just check their website (above) to see if there is a support group in your area.

There are also counselors/therapists available who have special training in infertility and miscarriages. Therapists can be very helpful if you’re experiencing infertility as an endometriosis symptom. If you are looking for such a therapist, generally contacting the nearest good-sized teaching hospital in your area is a good way to find a Marriage and Family Therapy unit with therapists specially trained in this area.

Infertility can be emotionally draining. Try to find someone else near you who is going through it. Talking with others who understand can really be helpful!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis and Endo-related Links You May Want to Check Out

Hi! I thought I'd post some links that may be of interest to endo patients. Some of them are endo websites. Others are sites for illnesses that often co-exist in endo patients. Still others are websites you may find uplifting/supportive.

There is no cure for endometriosis. There's a myth that hysterectomy is a cure for endo. Only you and your doctor can make treatment decisions as a team but I've included a couple of websites on the topic of hysterectomy. I thought this might be helpful since there is much confusion about this topic. One site is devoted to alternatives to hysterectomy. The other site says it provides "woman to woman hysterectomy support".

http://www.endometriosis.org/
http://www.endocenter.org/
http://www.endometriosisassn.org/
http://www.butyoudontlooksick.com/the_spoon_theory/
http://www.resolve.org/site/PageServer
http://www.pelvicpain.org/
http://www.noharm.org/us
http://www.womenandenvironment.org/
http://www.forgrace.org/women/in/pain_home/
http://www.ichelp.org/
http://www.fmnetnews.com/
http://www.hersfoundation.org/
http://www.hystersisters.com/

I hope you find these helpful!

Welcome to Jeanne's Endo Blog!

I would like to welcome everyone to this brand new endo blog. I am very excited about it! This is something I have thought of doing for awhile now.

I would like to start by thanking two people who have inspired me to pursue this idea of creating an endo blog. First, I'd like to thank Tracee for her generosity, moral support, and time! Tracee's blog was what first inspired me to even dream of creating a blog. I'd also like to thank my husband. He spent lots of time discussing this with me and was very encouraging. While I had privately pondered making a blog, both Tracee and Don came out and suggested it without me ever saying aloud that I was seriously considering doing it!

Also... one of my endo support group members, Alicia, emailed me to announce her new (non-endo) blog a couple of days ago. I had already made up my mind to create this by then and was very happy for her deciding to create a blog herself. Alicia has also been very enthusiastic in supporting my decision to create an endo blog. :)

So, here goes. My first real endo blog post. I guess it makes sense to start this blog by explaining my intent. My intent is to provide information that endo patients are likely to find interesting or helpful in managing their illness. As I mentioned in the disclaimer above, this blog is NOT intended to provide medical advice. I'm a layperson. I plan to share my personal experiences, any info my support group members would like me to share, info regarding alternative medicine options (of which many are unaware), any endo legislation I come across, lots of links to helpful websites, etc.

I'm am very excited about this venture. I hope we get lots of activity from people on comments to the posts. It should end up being a forum for vigorous exchange of ideas.

Finally, I should forewarn readers up front that I may not always post as regularly as I would like to be able to. So please be patient with me when these times occur. I will post as often as I'm able with the many illnesses I have. If you don't hear from me for awhile on this blog, it simply means I'm too sick to blog at that time BUT I'll be back at it as soon as I possibly can.

This should be an exciting opportunity to get endo patients connected, interacting, exchanging ideas, and empowering themselves. I believe it's SO important for endo patients to advocate for themselves. Navigating the health care system can be challenging. At some point, I hope to post tips like "suggested questions to ask your doctor in a pre-op appointment" and "what is available besides drugs and surgery?"

Please come back and visit regularly. I think you'll find this blog supportive and, hopefully, quite useful.

Thank you for checking the blog out. I hope you'll become a regular visitor!

:)


Take care,

Jeanne

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.