Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Fasten your seatbelts! This will be a long post because it's about a topic very near and dear to my heart. So please bear with me!! When I get emotional, I get even wordier than usual (hard to imagine, I know)! :)

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If you're having trouble slogging through this whole post, please consider checking out the 5 related links near the end of this post. I believe many readers can relate to them!
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Before I begin with a bunch of questions (questions I'll pose below) or proceed to write my local endo support group's "obituary", I want to begin by focusing on the positive!!!

I AM VERY THANKFUL AND GRATEFUL FOR HAVING HAD THE OPPORTUNITY IN THE LAST 7 YEARS TO MEET AND GET TO KNOW SOME OF THE MOST FANTASTIC WOMEN I HAVE HAD THE PLEASURE OF MEETING ANYWHERE, AT ANY TIME, IN MY LIFE! I HAVE FOUND NUMEROUS ROLE MODELS WITHIN MY LOCAL ENDO GROUP: ROLE MODELS FOR COMPASSION, "GIVING BACK", SHARING THEIR PERSONAL STORIES FOR THE BENEFIT OF OTHERS, ETC. I AM SO HONORED TO HAVE MET SO MANY OUTSTANDING WOMEN WHO ARE COURAGEOUS, STRONG, THOUGHTFUL, AND WHO PERSEVERE THROUGHOUT OFTEN DAUNTING SITUATIONS AND DEBILITATING SYMPTOMS. THESE WOMEN ARE INSPIRATIONAL AND HAVE ENRICHED MY LIFE AND THE LIVES OF OTHERS IN SO MANY WAYS!!!

Is online support the "wave of the future" (as some have suggested to me in recent weeks)? Can online support replace in-person support? Does it have to be either/or???

Or is a *combination* of online support and in-person support the optimal situation??? (My personal opinion on that last question is that a combination IS best when at all possible... but I'll get into more details below. In-person support is REALLY powerful. Having experienced both, I see the value of each).

Are in-person support groups phasing out in general? Or does it depend on factors like geographical area, the condition/illness requiring support, the nature/severity of the illness/condition/situation for which the support provided by a group, gas prices to get to meetings, people's work schedules, people feeling too overwhelmed or exhausted to add one more thing to the schedule(!), or a combination of these and other factors?

First let me share some fond memories. Our group has helped many women find ---

+ EACH OTHER!!! I have met some of the most wonderful, caring, supportive, well-informed, strong, compassionate women in our support group that I have ever met anywhere in my 39 years. I will always treasure the special moments of shared support, compassion, information-sharing, and grace that I have witnessed in the past 7 years. Our support group has helped many women in meetings, between meetings, in person, by phone, and via email. The last phase of this in-person support seems to have led me here. While I didn't know it at the time that I started this blog in June, it may well provide online support to those who cannot attend in-person meetings regularly (for a variety of reason which I'll talk about separately).

+ comfort, support, healing

+ the ability to find high quality doctors in our area

+ validation/understanding/decreased isolation or loneliness

+ links to other support groups relevant to their condition (i.e. fibromyalgia, interstitial cystitis, and infertility support groups)

+ articles about endometriosis and related conditions, relevant news stories/research

+ links to other helpful resources relevant to our group members (i.e. support for group members who have gone through breast cancer... which endo patients are at increased risk for)

+ opportunities to connect with other women who share much in common with them (pain symptoms, marital strain, infertility, micarriages, etc)

+ a venue for learning about alternative treatment options that might not have been discovered otherwise

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Obstacles for in-person support...

Here are the most common reasons endometriosis patients have outlined for me as reasons its difficult to attend support group meetings:

(1.a.) TIME. Time is so precious nowadays for everyone. It's extremely difficult for endo patients to simply add one more thing to their schedule.

(1.b.) I am listing "TOO SICK TO ATTEND" as tied for first place because it is just as common a reason for women not being able to attend meetings!

(2) Women who are feeling better and would like to stay on the mailing list but do not attend meetings regularly because they don't need the support currently. This is understandable! (Who wants to drag herself to a meeting when she's feeling better when she could be at home spending that time with her family, curled up her in PJs reading, watching TV, etc.)

(3) Patients whose needs have essentially been met and are doing pretty much OK but wish to remain on the mailing list to "stay in the loop"... and just in case they should need support/info down the line.

(4) Women who had quite a drive to meetings and either have issues with drowsy driving associated with medications, have trouble with gas prices making the drive prohibitive, etc.

(5) Patients who have been fortunate enough to conceive sometimes have difficulty obtaining childcare so that they can attend the meetings.

Within the group of women who find time their biggest challenge for attending in-person meetings... there are many subcategories. Women have work scheduling conflicts, women have other commitments on the same date, women need that time during the meetings to recover from working all day and adding a meeting after a full work day is totally beyond their capabilities or just plain impractical, etc...

This leads into category (1 b). Many women are simply TOO SICK to make it to in-person meetings. This has been the most heartbreaking part of the last 7 years for me. The very women who express the GREATEST need for support and who are VERY interested in attending meetings often are simply to sick to attend. Over the last 7 years, I have tried to be as available as possible as possible to group members between meetings because I knew that some patients simply can't make some or even any meetings due to the very illness for which they desperately want/need support.

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As far as the questions I posed at the start of this post, I can't answer all of these questions. What I can do here is simply share the story of one local endometriosis support group. Much of our local support group's story has been covered in previous related blog posts. I'll list these at the end of this article and I strongly encourage readers to check them out! There is a great deal of information in them that I believe readers may find interesting and/or helpful regardless of whether they have ever or will ever participate in "in-person" support groups!

There's a great deal to cover here with the group having provided support to local endometriosis patients for 7 years. If I cover it all in this post (especially when I detailed it previously anyway in other posts) this post will become WAY too long. So I'll skip the details for now and refer readers to those posts for more information about the wonderful things our group members DID accomplish while we still had regular monthly meetings.

While I will miss having monthly meetings and the enormous opportunity they provided to help others and to learn a great deal from fellow endometriosis patients, I realize that sometimes "good things must come to an end". While I accept the fact that we will no longer have monthly meetings at the location & time we've met for 7 years... I have faith that we have a core of very interested support group members who will find more creative and flexible ways to have some in-person support... just not necessarily as often or in as structured a fashion.

I am at total peace with the changes in how we'll proceed from here and (despite my gloomy post title!) that this change is for the best and I'm actually feeling relief that I no longer have to struggle to try to "hold the group together" in its previous form. Group members know where to find me and now have some additional contact info to communicate with other fellow group members who have shared their contact info. I have done everything humanly possible to keep the group afloat in "traditional form"... especially since the endo groups on either side of me closed within the last few years and our group has been the only remaining endo support group in our part of the state.

I just keep telling myself that a former endo support group leader who sent me a compassionate, thoughtful email about the potential "closing" of the local group had a good point... that online support (blogs like this, messages boards, websites for organizations who deal with endo support, research, information, etc.) may truly be the "wave of the future".

My personal belief is that some occasional in-person support is a fantastic addition to the great online support available in so many formats! I have felt the positive energy in the room when the group members present have "aha" light bulb moments (as Oprah would call it) or when group members realize, "oh, she 'gets it'... " --- or "these people really 'get' what I'm talking about"!

I keep local group members' contact information 100% confidential and always have. With the traditional group format unraveling, I have been asking interested group members for permission to share their contact info with the group. In this way, the remaining "core" of interested group members can remain in contact with each other without me necessarily needing to be the "gatekeeper".

This will assist me in engaging in more self-care/less time trying to "save the group" and will allow for a better sense of "ownership" or belonging for the core members to communicate with each other - and - for all of us to divide the responsibilities of organizing any in-person, informal meetings.

We can meet 1:1 or in small groups at locations, dates, and times of the subgroup's choosing. We can have the meetings really informally at coffee shops... just hang out and chill. Like a "girls night out" where we happen to all have endo and we spend some time talking endo and some time just having fun.

In the last few weeks, it became apparent that our group was potentially heading for "extinction" in its current form and I sounded the "alarm bells" to let the group know where things were potentially headed... at least regarding the format we had become accustomed to.

I went through feelings of sadness and loss. I know there is a need for a group like this because I got 2 calls last week from new members. Calls don't always translate to meeting attendees, though.

At the same time our current meeting schedule is just impractical (on many levels) and it's not fair to the wonderful library that has provided free meeting space for 7 years to call and cancel as many meetings as I have in the last year when the library is turning others away from using the room.

However, in addition to feeling sadness and concern that women who haven't already found our group may have a much lower chance of finding us now, I have received some unbelievably supportive and heartwarming emails and calls from local group members. This has lessened the blow of the group "dying" (at least "dying" from its current form of monthly meetings). With all of the great suggestions and supportive/helpful comments I have received in the last few weeks, I know that existing support group members who care to stay in touch will and that those whose needs have been met or who don't find attending in-person meetings practical for whatever reason WILL still get the support they need within our community.

The saddest part for me is not knowing how to reach out to those who hadn't yet found us. For example, women who have not yet been diagnosed and who will look for an endo support group in the future in this area won't be likely to find us. This was hit home recently when the local city newspaper printed its quarterly "health section" newspaper pullout that features support groups like ours (for free) to inform the community.

As I touched on earlier, I got calls 2 days in a row from potential new group members recently and had to explain that I wasn't sure if our next meeting was going to happen or not. (I had called an "emergency meeting" to discuss our group's future. It was to be held tomorrow night. I have cancelled it). While a couple of group members had replied "maybe" to the meeting invitation RSVP, a handful had said no, none had said yes, and the vast majority hadn't responded at all.

I just knew it was time to discontinue our monthly meetings. This doesn't mean we can't "morph" into another format. I am hopeful that the small but determined core of local support group members who have contacted me will find creative ways of staying connected.

I have received some VERY thoughtful, considerate, compassionate emails and calls from local support group members who wish to continue to stay connected with other endo patients in the area, who reassured me that they have found the group very helpful, who made suggestions such as virtual meetings or meeting at a coffee shop on a quarterly basis, who like staying in the loop with the emails I send, etc.

We may not meet every month in the future and we may not meet in the same location as before. However, based on the feedback I've gotten from our group members I am confident that there is a relatively small but interested core of our local support group members who will stay in touch, continue to network with each other, keep sharing our success stories & our challenges, and continue to belong to a group of women committed to staying connected.

OK. Now I'm going to do the "obituary" of our "traditional in-person monthly support group".

Then, more importantly, I will share hope for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

We'll quickly cover the past first and then get into the future. I'm determined to focus on hope and positivity once I get through this quick "obituary". I just need the catharsis of getting through the sad part before I can move onto the happy/hopeful part. So bear with me.

On August 8, 2001 our local endometriosis support group held its first meeting. Since then we have helped dozens of endometriosis patients in our community. Like so many support groups around the country, we have had our struggles over the years with low turnout but have managed to stay active with monthly meetings for 7 years.

While many women expressed great interest in our group, our monthly meetings got smaller over the years. The number of group members on our mailing list went up and down over the years (people moving away, new members finding our group, women deciding they no longer needed support, women returning to group meetings when their symptoms flared or they needed to make decisions such as whether to have surgery) but our mailing list averaged about 40 women in the last few years. (We started out with about 20 women on the mailing list back in 2001). That's not bad for a city the size of the area this group has served.

I believe this may well be the death of a traditional support group and the beginning of a new era of support... My hopes for the future of our support group restructuring into something more workable for its members are strong.

I mentioned above that I would be sharing HOPE for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

My personal belief is that the majority of Traditional Western Medicine healthcare providers are not GENERALLY inclined to provide much, if any, information regarding alternative medicine options. One of the biggest benefits of our group for members was access to high quality info on alternative treatment options. Group members learned about acupuncture, physical therapy for pelvic pain, Chi Nei Tsang, nutritional changes that might be helpful, homeopathy, aromatherapy, info on environmental impacts on endo patients and their fertility, the benefits of massage therapy, and many other modalities that their healthcare providers might or might not have made them aware of. I believe alternative medicine was one of the most interesting topics discussed in our meetings. I certainly got great feedback from members who tried new treatments and got great results.

Please see the article below. It contained FIVE related articles to this one.

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

The 4 links within the article listed above are:

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 have been a member of a "traditional/in-person" endo support group (here or in other cities where I lived previously) since 1992, when I was first diagnosed. I will miss the monthly meetings but I look forward to staying in touch with the numerous amazing women I've met through the group. These are women I almost certainly wouldn't have met any other way. Many are lifelong friends now!!! While I will miss the structure of monthly meetings, I have every confidence that many of our current group members WILL stay connected and continue to give one another high-level, compassionate, meaningful support.

So with this "endometriosis support group obituary", I'm sad but I'm also very hopeful. This is a bittersweet time. No matter how frequently, or infrequently, I have contact with members of my wonderful local group... I know we've helped many people. In addition, I know this blog will continue to help people online. Not only does this give support to women without them having to leave their homes but it reaches a worldwide audience and has already given me an awesome opportunity to connect with awesome readers of this blog and fellow bloggers (chronically ill or otherwise)! I am very grateful on so many levels.

I encourage readers to comment on this post! Maybe your local support group is struggling and you are looking for ideas. Maybe you have used online support only and have never tried in-person support or it's not available in your area. Maybe you have used in-person support in the past but haven't used it recently. Maybe your local group (like so very many endo groups) closed due to low attendance. I'd love to hear your feedback!!

In a funny way, I'm actually looking forward to this new chapter. I truly believe this is what's meant to be at this time and I'm embracing the opportunities it provides. I have taken some time to accept it and make peace with it and I really do see it as an opportunity rather than a "death" of our group... in spite of my post title. That title was a reflection of the sadness factor but I'm honestly looking forward to what good can come out of this transition for our local group. Who knows where this could lead? Maybe having a more flexible time/date/location based on who wants to attend a particular meeting will increase participation? You never know!

THANK YOU to my local support group members for being so thoughtful, informative, strong, and supportive. You all have a special place in my heart!!!! :)

I have loved the opportunity to meet so many incredible women through this group!!!

Nothing will ever take away the amazing, close friendships I have made with other endo patients right here in my community. Their kindness and selflessness are unmatched and I am so very grateful!!

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"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has".
-- Margaret Mead
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Our group has improved the lives of many women and their loved ones! We should look at the positive things we've accomplished AND look ahead to the additional positive things we'll accomplish in the future!!

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.

Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

***PART ONE WAS ON JUNE 9, 2008***

### The video clip posted on June 9, 2008 on this blog can be viewed easily by clicking the title of this post. That will route you to YouTube. This is an AMAZING video on chronic illness!!!
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***THIS POST BELOW IS PART TWO***

Please view the comments listed under the June 9, 2008 post:

Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

The woman behind the hauntingly beautiful video clip that cycles through and displays on this blog daily posted a comment today. The clip is about chronic illness. I'm sure just about anyone reading this blog will find her clip amazing!

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.

YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

You may have seen the YouTube clips to the right (see the "YouTube Slideshow. Random Videos will Cycle Through. Not responsible for content!" arrow).

I really found the "Hyperfluorescent Endometriosis" clip - a demonstration of the hyperfluorescent endometriosis with autofluorescent laparoscopy from Steven F. Palter, MD's prize winning video - intriguing. I had never heard of this method of visualizing small endometriosis implants that are not easily seen by the naked eye. Dr. Palter mentioned the use of a combination of illumination and observation filters.

There are clips on chronic pain and infertility as well. The clips will occasionally rotate to a new set. It takes a bit of time for it to rotate sets but the clips will switch on their own if you're patient. I tagged this search for YouTube videos on the topics of chronic pain, endometriosis, infertility, and pelvic pain. Please excuse any ads or inappropriate language that might dynamically rotate through. (I am not responsible for the content of the video clips). The tags I listed should hopefully get it narrowed down to some good videos.

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

EDITOR'S NOTE:
Here's a little postscript...
Please see a follow up to this post on JULY 14, 2008
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

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.

Alternative Medicine Is Amazing!

As per my disclaimer above, I do not prescribe treatment options. You need to consult with your health care provider(s) for that. I am excited to share some info regarding alternative medicine because many endo patients are not aware of all of the options available for managing endo symptoms.

For the purposes of this blog, I am going to use the phrase “alternative medicine” to refer to treatment options other than the typical “drugs and surgery” that are offered by Traditional Western Medical doctors for treating endometriosis.

In my personal experience and that of many women I know through my endo support group, many alternative medicine options have come to my attention. We will be talking a great deal about alternative medicine options on this blog. This post is just a jump off point for starting a dialogue on options that are available other than standard hormonal treatments and surgeries.

Since surgery can cause adhesions and scar tissue and since these can cause more pain, the benefits and risks of surgeries should be weighed carefully by talking with your doctor. Many women have numerous laparoscopies to remove endo. Also, medications can have side effects.

If alternative therapies and Traditional Western Medicine can be used together as integrative medicine, patients can get the best of both worlds: endo patients can choose the options that are best for them based on their age, fertility desires, number and severity of symptoms (including pain), etc.

Here are just a few alternative medicine options I am aware of through either personal experience or what my support group members have shared with me:

Acupuncture – I have been getting regular acupuncture for over 7 years now. I love it! For many years, I had heard women rave about acupuncture and I was afraid to do it. I thought it would hurt. I was in enough pain already and didn’t want to add to it by getting stuck with needles! However, I now wish I have tried it sooner!!!! My acupuncturist is awesome. He uses Japanese style needles. They are so thin and flexible… nothing like hypodermic needles! He describes them as “about the width of a cat’s whisker”. They are so skinny it’s unbelievable. They do NOT hurt! The cool thing about acupuncture for me is that it helps me in a holistic way…. It helps my whole body. He doesn’t just treat my endo symptoms. He treats all symptoms that acupuncture can appropriately address. It helps me enormously! My acupuncturist is a licensed acupuncturist. Here are a couple of websites you may find helpful:

http://www.acupuncturetoday.com/
http://www.acupuncturefinder.com/

Chi Nei Tsang – A couple of my fellow endo support group members have tried this modality and found it to be very helpful! I’m including a website with info about Chi Nei Tsang: http://www.chineitsang.com/. According to this website, “Chi Nei Tsang is a holistic approach to the healing touch modality of old Taoist Chinese origin. It integrates the physical, mental, emotional and spiritual aspects of our being.” If you haven’t tried this modality, it’s something you may want to investigate!

Diet and Nutrition – Many endo patients find that dietary changes help them feel better. Some endo patients feel better when they follow a wheat free and/or dairy free diet. There are books about endo and nutrition out there. One I’ve heard good things about (but haven’t read) is Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon.

Some endo patients have found diets for treating candidiasis helpful. See the book The Yeast Connection: A Medical Breakthrough by Dr. William Crook for more information.

Homeopathy – This has helped me so much! I am very blessed to have a friend who is very knowledgeable about homeopathy and who has helped me determine which homeopathic remedies are appropriate for my needs. If you are interested in checking out homeopathy, I would suggest finding a licensed naturopathic doctor to assist you in selecting the homeopathic remedies that are right for you. Going to the store and buying homeopathics and simply going by what’s on the label isn’t a great option because homeopathy is complicated and those labels simply aren’t enough to guide you if you are not trained in homeopathy. Homeopathic remedies are easy to take (the pellets dissolve under you tongue), they can be fast acting (depending on what symptoms you are taking it for), and they really work!!!

Massage Therapy – Many people think of massage therapy as simply a luxury or form of pampering. However, massage therapy certainly has medical benefits! If massage therapy interests you, try finding a licensed massage therapist by word of mouth. Some massage therapists are take-your-breath-away relaxing and others are just so-so. Some have special training in massage therapy that is more geared to medical benefits rather than just relaxation. Ask around and you may find that someone you know has a massage therapist they swear by!

Physical Therapy for Pelvic Pain – I never knew there was such a thing as this until a support group member told me about it. Then I tried it myself and saw what she was talking about. Then we told other support group members and several of them tried it too. I haven’t heard any negative feedback from the women who have tried this therapy. If you are experiencing pelvic pain, you may want to see if there is a physical therapist in your area that does this particular, specialized form of physical therapy. For information about this therapy, I would try searching on these two websites: http://www.pelvicpain.org/index.asp or http://www.nva.org/. This therapy is typically covered under insurance and often requires a doctor’s referral. The only reason I’m calling it “alternative” is that most endo patients aren’t aware this therapy exists and most doctors don’t mention it to their patients. Some geographical areas don’t have these specially trained practitioners. However, there could be one in your backyard and you won’t know it if you don’t check. This is a modality that can really help women with pelvic pain. Ask your doctor if it’s an option available near you and don’t be afraid to research on your own to see if it’s available in your area. It may be available and your doctor doesn’t know it yet! This is a relatively new field within physical therapy from what I understand.

HAVE A GREAT DAY!

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

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.