Looking for Jeanne’s Endo Blog?

It has moved and gotten a new name. You should be automatically redirected in 6 seconds. If not, please visit
http://chronichealing.com
and update your bookmarks.

6/30/2008

I’m Way Too Tired and Sore to Post Today. Maybe Tomorrow. Very Ill. I’ll Keep You All Posted As I Am Able.

Hi everyone,

I hope to post soon. It's just not happening today. I wish I could. In the meantime, browse through my archives. There must be something there you haven't read yet. :)

Take care,

Jeanne

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

6/29/2008

Endometriosis Blog: Ground Rules for Comments, Google, and AdSense PLUS My Anticipated Response Time for Comments

Hi everyone! At this early stage of the blog, I’d like to try to get clear expectations from you who read the blog as far as what content most interests you.

In turn, I would appreciate if you’d take a moment to read a few simple rules to keep our comment posts as uplifting and supportive as possible. The rules below are a mixture... Some are rules which AdSense itself may expect me to have my blog adhere to. Some of these rules may be even more specific/common on blogs which commonly discuss medical terms (i.e. medications, nutritional supplements, etc.). Finally, I may have put my own touch on the rules as far as what I personally am comfortable with for my endometriosis blog.

First let me explain moderated blogs for anyone unfamiliar with the term. Moderated blogs can basically be set up so that articles/posts by the blog’s author (in this case, me) can choose whether to "publish" or "reject" a comment made by an Internet user who chooses to comment on the post(s).

So, I’ll give an example.: I don’t wish for there to be profanity on my blog. The easiest way by far for me to ensure that there isn’t any profanity on my blog is to moderate the comments before posting them.

This is for several reasons. (1) I don’t care to have my blog associated with profanity. (2) If my blog were totally un-moderated, people could post obscenities that I might not be able to easily remove from my blog’s comment screens after the fact (assuming I even saw the obscene comments after they were posted). (3) I have agreed as an AdSense advertiser (yes, I’m talking about those Google ads on my blog) not to allow inappropriate blogging/commenting on my blog. (4) By reading comments as soon as I am able (via email) to view them, I am better able to keep in touch with the readers’ needs.

As the moderator, I can choose an option to “publish” or “reject” any comment. I have not rejected any comments but I am fully aware that someday I may choose to exercise my right as moderator of this blog to “reject” a particular comment. If I establish some basic ground rules now, I am hoping it will be clearer for me and the blog’s readers what is/isn’t considered appropriate for this particular blog.

When I established this endometriosis blog on 6/1/2008, I selected the available BlogSpot option to ‘enable moderation’ of the comment boards, as is very common on many types of blogs. Medical topics can be particularly sensitive due to liability, advertising rules, the FDA, etc. Moderated comments were the only logical option for this endo blog.
So, as we’re rounding out the first month of this endometriosis blog... it occurred to me that it might be a good idea to state some ground rules for posting comments to the articles posted.

As a BlogSpot writer, I decided to be an AdSense advertiser. The Google ads you see on my blog are managed by a company called AdSense. I have an agreement with AdSense and want to make very sure that I am following their rules, as per our contract agreement. In order to follow their rules, I need to ensure my comment boards are managed, by me, in an appropriate manner. Also, I may elect to introduce future ads other than AdSense/Google ones and I need to “keep a clean shop” for that reason as well.

Ground rules for Jeanne’s Endo Blog:

(A) There will be no personal attacks on the comment boards.
(B) There will be no political or religious discussions on the comment boards.
(C) Due to my contract with Google/AdSense or ads with any future advertising companies, please be vague if ever referencing commercial items (i.e. please state “prescription estrogen” rather than posting words or links about or including a specific brand name of estrogen or even a specific manufacturer or prescription estrogen. It’s OK to say “estrogen” or provide a website/web link about the general topic of estrogen. However, posting comments about a particular brand of estrogen or posting comments linking to websites that ever carry ads for specific brands of estrogen would not be appropriate for this particular blog. Please try to remember not to name any specific pharmaceutical companies, drug wholesalers, etc.

Also... due to the number of comments and private emails regarding this blog I have already gotten (keep them coming!!!), I may not always be able to reply to each and every comment posted on my blog. I have already gotten a wonderful response in under a month and it is steadily rising. In addition to responding to comments here on the blog, posting on the blog, adding cool features to it (check out the cool FEEDjit widget tools in the sidebar of my blog) and the private emails I send/receive about the endo blog... plus my duties as a volunteer co-leader for an in-person endometriosis support group in my geographical area... plus my numerous chronic illnesses, there will certainly be times when I can’t respond to every single comment. (I do pledge to read all of them, though, as soon as I am able).

Please bear in mind that I have been too sick too work outside the home for several years now. This blog is a big undertaking for me and I will continue to do my best to be as responsive as possible to your comments on the blog and your emails to my personal account: mailto:endendo@frontiernet.net?subject=Endo%20Blog%20Ground%20Rules..

I would prefer you post comments unless it is a private matter. This will reduce duplication of efforts on my part and improve the speed with which I can respond to all readers of this endo blog.

As you know by this point, I am not known for being brief! So writing simply takes time and energy for me that SOME days just won’t exist with my illnesses.

I’m not complaining!! I have absolutely loved my first month of blogging and am happy to be writing this blog and providing a safe, pleasant place for readers to converse on the comment boards. If you are new to posting comments on blogs, my blog is very simple to use. BlogSpot blogs like mine have a “comments link" in small font underneath each post. If you see a post/article you’d like to comment on, just click comments. A window will appear. In the window, type your comment. If you have a Google account and wish to post with that name showing, you may do so. YOU ARE NOT REQUIRED, HOWEVER TO HAVE A GOOGLE ACCOUNT TO POST ON THIS BLOG. You may simply type your first name (or even a “pseudonym”). Or, you can even choose an “anonymous” option if you choose to do so. There is no special log-in required! It’s fast and easy!!!

As far as I’m concerned, the more comments the better!!! While I may not be able to keep pace with all of you simultaneously commenting here (or emailing) me, you all can have fantastic conversations without me! If I’m too sick to post, I will make every effort to “publish” all appropriate comments as quickly as possible. You all are perfectly capable of talking amongst yourselves.

You can post back and forth because if you check the option (when you post your comment) that indicates you want to be copied in on any additional comments to xyz post then you will get email notification (if you checked that option) of a new comment being made when it happens.

So if I got hit by a bus, I would have my husband select “publish” on any emails that were pending moderation (provided they follow the above rules). Once the moderation goes through, your comment gets posted and the same thing happens with the next person. So I don’t necessarily even have to write anything to keep the comment area rolling along as long as I have someone who would be willing to step in temporarily and moderate the comments based on the above rules.

So please let’s keep the great discussions we’ve already been having going on in just this first month going strong AND let’s have many more where that came from.

I am very pleased with the warm reception I’ve gotten for this endo blog. On and off the blog... by comments and by emails, you have been so supportive of the effort it has taken me to create and maintain this blog. With my illnesses, it’s not easy. The great thing is that I can set my own pace and I can do it in the comfort of my own home. It has been heartwarming to see the reaction from my family & friends, my fellow (local) endometriosis support group members, my fellow bloggers (blog writers) and everyone who has posted comments on this blog! I am psyched up and ready to go.

So let’s get this blog really rolling now. The more comments you post the better. I can’t wait to hear from you!

THANK YOU TO EVERYONE WHO HAS MADE THIS ENDOMETROSIS BLOG POSSIBLE!

TRUST ME WHEN I SAY THAT THIS LIST OF PEOPLE IS VERY, VERY LONG!

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.

6/28/2008

Deirdre's Brilliant Comment Has Resulted (Unknowingly) Into a Full-Blown Endometriosis Post!

Hi all!

An enlightened reader of our new endo blog wrote an inspired AND inspiring comment to my June 26 post "Endometriosis Patients Get Their Fair Share of Stress!"!!!

It was so inspiring to me that I was sure I'd run out of character space in the comments section. Soooo, my response to Deirdre's remarks is below. To read her short but very inspiring feedback/comment, see the the June 26th archive file for "Endometriosis Patients Get Their Fair Share of Stress!". Here is my response to Deirdre's post to the 6/26/08 article I posted. This is from 6/28/08 and is doubling as a fresh post by me for today:

************
************

Hi Deirdre!

I’m glad you found us! Welcome to the new blog. :)

Thank you for mentioning the Center for Endometriosis Care located in Atlanta, Georgia. I do now remember seeing their website a few years back when I was very heavily into researching endometriosis on the Internet! I will have to pull up their site and refresh my memory! I do remember they had a helpful library section that I haven’t visited recently. I will definitely have to “take another look” at their site, now that you have reminded me about them! Maybe the library area I’m remembering and the educational articles you talked of are in the same part of the website? I can’t remember but I will definitely check it out. Thanks for the great idea for another helpful link! (If you page through my archives, you’ll find one of my earliest posts on this blog had a number of web links). This one wasn’t one of them; I had forgotten all about it. I’m glad you jogged my memory!

Yes, I have known about the OBGYN.com site for awhile.

See the link to it:

http://www.obgyn.net/.

You know some great resources)! :)

The 'http://forums.obgyn.net/endo/' section, in particular, focuses on ‘endometriosis in general’:

http://forums.obgyn.net/endo/.

As you mentioned, there is a cool forum available within that endo section. I remember posting back & forth on the OBGYN.net message boards years ago. I’m pretty sure that site is where I had gone through a phase of reading/posting tons of stuff on OBGYN.net (using the endometriosis message boards) over 10 years ago. (I remember the timeframe because I just celebrated my 10 year wedding anniversary and it was before that when I used to spend lots of Internet time searching for endo data).

Thanks for mentioning this too! I actually just pulled up the main starting page for www.obgyn.net and if you click on “select a topic” in the top right corner, a pull down menu appears.

In the http://www.obgyn.net/ pull down menu if you click on Endometriosis Zone, it will route you to ANOTHER cool website:

http://www.endometriosiszone.org/.

It's a neat site too.

Thank you for mentioning OBGYN.net!

I just stopped this mid-post to check my archives section… I wasn’t sure if I had listed OBGYN.net in early June (as intended) or not. I did not list www.obgyn.net in my June 2, 2008 article on endometriosis links: "Endometriosis and Endo-related Links You May Want to Check Out" but now our blog readers will know about it anyway thanks to you, Deirdre!

Thank you again for reminding me of how much awesome info is available over the Internet. When I was diagnosed in 1992, I didn’t even own a PC yet and if there was decent endo info available then by Internet (???) I’m sorry to say I sure wasn’t reading it!

I had gone to my local library in 1992 and they had NOTHING on endo. Not a word. The librarian even looked for me. No luck. (It was a very good library normally too). Times have changed.

It was in Barnes & Noble in the self-help book section that I found a listing in the very back of a women’s health book for the Endometriosis Association phone number: (1-414-355-2200). They now also have a website http at:

http://www.endometriosisassn.org/


This led me finding a local Endometriosis Association support group near me (the endo support group active in my area at that time). I was quite shy then (hard to believe, I know!!!) and quite nervous about calling a stranger to inquire about the endometriosis support group BUT I did it! (THANK GOODNESS)!!! My need and desire for support,help, and info overcame my fear of calling a stranger about my "endo story" and asking about the the endometriosis support group.

Through the local EA support group I was introduced to real live human beings besides me who had endo! IT WAS SO AWESOME TO TALK WITH PEOPLE WHO REALLY “GOT IT” !!!!!! It was absolutely refreshing and a huge relief to make that connection with others!!

IMAGINE: An entire room with women who had also been suffering in silence, like I did, UNTIL they reached out and found some of their fellow endo patients somehow! Our meetings didn’t have very many women but had PLENTY for effectively sharing engrossing “endo stories”!!!) I’ve learned that a support group of 2 can accomplish as much as one with 20. (I’ve been to meetings of both sizes). my friend Cathy taught me that "2 people makes a support group". She was right! I began my endo support group in August 2001 this is so very true!

As long as exchange of information is happening, it is ALWAYS worthwhile to network with fellow patients (of any illness) any way one can do so: in person is awesome if you can get it, phone works well too, email is outstanding, message boards & forums are super… Books are certainly a wonderful source too. No one loves books more than I do.

The thing is that when you interact with another patient BACK & FORTH and truly EXCHANGE ideas & info… it is a whole new level of support than simply reading a book without also having that more tangible connection. Comparing notes on doctors, treatments, success stories, losses, etc. really HELPS so many! I have learned SOOOOOOOOOO much about alternative medicine from my support group members that it's not even funny.

The beauty of blogging and giving feedback posts on endo blogs is that we can have an exchange while you are in the comfort of your own home even when you’d be too sick to find/make it to a support group meeting. I’m not saying anything can replace a support group meeting. However, blogging is increasingly becoming an important tool for reaching out to others for various reasons… including endo blogs.

It was in either 1992 or possibly 1993 (?) that I found my first endo support group. (I was diagnosed in 1992 after 10 years of not knowing WHAT I had)! For me… the rest is history! I started “surfing the Net” in 1995 and have been hooked since. I am really grateful to Endometriosis Association for the springboard of info I got from that organization in 1992.

So, again, thank you for reminding me about www.OBGYN.net because it is a well-known/reputable site in the endo community.

There are many endo patients who experience both endo and migraines. Many women in my current and past endo support groups have trouble with migraines. While I have no personal experience with migraines, I know from others that hormones can definitely be connected with migraines!

I have acupuncture treatments done regularly. While I personally have had acupuncture done for other medical reasons than migraines, I personally still do hand out “Traditional Chinese Medicine for Migraine” brochures (that I obtain from my acupuncturist’s waiting room area, with his permission, in short stacks at a time for giving to my endo support group). I’m not sure who the author/maker (?) of that brochure is and I can’t check now because I ran out of them. (I try not to completely ‘clean out’ my acupuncturists' waiting room brochures of ALL its brochures. So I do run out of brochures sometimes between our monthly endo meetings. Although it can be tempting at times to "hog them" because I take good care of my endo support group)! Ha ha.

Seriously, though, it may be a brochure affiliated with a product (Chinese herbs) or may not... I recall it being a brochure that was not specific to my acupuncturist’s office but was specific to migraines. I believe it was called “Traditional Chinese Medicine for Migraine”. If I remember to get more the next time I’m in I will try to remember to post the author/company that made the brochure but acupuncturists do treat migraines as a general rule of thumb. I distribute the brochures to my support group members at meetings since so many women have both endo and migraines!!

For women with endo (or anyone with migraines), acupuncture is certainly worth investigating! Please see my June 4, 2008 post Alternative Medicine Is Amazing! AND various YouTube acupuncture video clips (available right here on this blog!) if you (or anyone you know) is interested in learning about acupuncture. ACUPUNCTURE DOESN’T HURT! I CAN ATTEST TO THAT PERSONALLY! I even know of children who will attest to that. I delayed trying acupuncture for years over a fear of needles and now I wish I had tried it much sooner!

My licensed acupuncturist uses very thin Japanese-style needles. They DO NOT hurt and I am extremely sensitive (skin sensitivity and internally) compared to just about anyone I know. If I can do acupuncture with no problem whatsoever, I doubt if anyone out there would find it painful. I find it extremely relaxing. It even puts me to sleep sometimes!!! Acupuncture is MORE RELAXING THAN SLEEP to me. (I have sleep apnea and fibromyalgia and I really mean that quite literally!) I do not get restful sleep (except at acupuncture).

The YouTube clips cycle through on acupuncture, alternative medicine, endo, pelvic pain, infertility, laparoscopy, etc. The cycling of the clips is done by YouTube so you may have to be patient for the acupuncture clips to appear but when it is their turn to pop up, they will do so.

To view endometriosis-related YouTube video clips (including those on acupuncture) just see the “Pink Arrows to Open Slideshow. Random Videos will Cycle Through. Not responsible for content!” section in the right sidebar of my blog. If you look in the right (light pink background, medium pink text) sidebar, you’ll see what I mean. HINT: The videos occasionally collapse between cycles/groups of various topics. This is normal and when the videos are loaded they will re-appear on your monitor automatically. You don’t actually 'click' on the arrows as I originally thought to open the slideshow (I thought that clicking helped when I first created this blog but I’ve discovered that YouTube controls that part in their programming code for the slides).

Last but not least… I appreciate you sending the site of Dr. John R. Lee:

http://johnleemd.com/.

I had not heard of it before now and I did not yet have time to read through it BUT I did a quick peek at it -- just long enough to see that it looks interesting (and in line with the notion of alternative medicine options... i.e. things OTHER THAN just “drugs and surgery only" for treating endometriosis patients.

I am not a medical professional. I ask all readers of this blog to refer to the disclaimer at the very top of my homepage for this blog for more info on this.

Sorry about that interruption, Deirdre. Whenever I mention a site for a specific medical professional or treatment option I do my best to make it clear so my endo blog readers know that I don’t have personal experience with or knowledge of the person/treatment, etc. (in this case, I guess that would be Dr. Lee’s teachings, site, or any endorsed products)... I will look at his site about natural hormone balance, natural HRT, and bio-identical hormones. I will also ask my local endo group support group co-leader if she is familiar with Dr. Lee. (My endo group co-leader is a great resource for “natural hormone replacement therapy/HRT” vs. “traditional HRT” vs. “no HRT” at all and I’m sure she’ll find the site interesting too.

Finally, Deirdre… I would like to extend my sincere thanks to you… for stopping by and providing a number of interesting links and pieces of information! You gave me so much “fuel” with your brief comments that I am devoting this post to what we’ve discussed!!! Your references have inspired me to create this new post that will refer readers to that somewhat older related post on our 27-day-old blog. :)

Oops. I just realized this probably won’t fit into the comment board. I may very well make this the actual "Deirdre post" post itself!!!

THANK YOU SO MUCH for an outstanding comment/feedback post/actual post!! I most certainly hope that you re-visit our new blog SOON (and often!)… You are clearly very well-informed about resources (and on everything from websites & links… to hormones… to “migraines and how they are connected to endo patients”!)

You made my day with your posted comment! You have no idea how much I have enjoyed replying to your comment. Also, as I said… your comment has inspired me to make a (this?) brand new post and the posts will reference each other for even more to see/stumble upon in this vast world we call the Internet. We’ll catch more readers by posting in TWO spots on such important topics/links than just ONE!

THANKS, Deirdre!!! Enjoy the remainder of your weekend! :) (I need to learn how to program smiley faces the "right way" in these comment boxes. I use them a great deal)!

Deirdre's initial comments (before mine above) are also listed below in response to the article that I posted called "Endometriosis Patients Get Their Fair Share of Stress..."

Thanks again,

Jeanne

************
************
______________________________________
From: deirdre [mailto:noreply-comment@blogger.com]
Sent: Saturday, June 28, 2008 4:47 PM
To: endendo@frontiernet.net
Subject: [Jeanne's Endo Blog] New comment on Endometriosis Patients Get Their Fair Share of Str....

deirdre has left a new comment on your post "Endometriosis Patients Get Their Fair Share of Str...":

For any women with endo who find your site, this is an amazing place - the Center for Endometriosis Care in Atlanta

centerforendo.com, also look under ''educational articles''

and a chat board

http://forums.obgyn.net/endo/ENDO.0806/date.html

also, the pill and other things can lead to low progesterone, which can cause migraines

check out johnleemd.com

Publish this comment.

Reject this comment.

Moderate comments for this blog.

Posted by deirdre to Jeanne's Endo Blog at June 28, 2008 4:46 PM
________________________________________

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

6/26/2008

National Suicide Prevention Hotline/Lifeline Information

As you have seen from the previous post, endometriosis pain can reach critical and dangerous levels. I have heard over the years of women who have committed suicide (women who had no other illnesses besides endometriosis).

Here is information for ANYONE who EVER feels ANY suicidal ideations. The info is from a website for the National Suicide Prevention Lifeline at:


http://www.suicidepreventionlifeline.org/.

"The National Suicide Prevention Lifeline is a 24-hour, toll-free suicide prevention service available to anyone in suicidal crisis. If you need help, please dial 1-800-273-TALK (8255). You will be routed to the closest possible crisis center in your area. With more than 130 crisis centers across the country, our mission is to provide immediate assistance to anyone seeking mental health services. Call for yourself, or someone you care about. Your call is free and confidential."

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.

Endometriosis Patients Get Their Fair Share of Stress!

Endometriosis Patients Get Their Fair Share of Stress!

I am leaving soon for a fun-filled day of adventure. Yes... it is medical-related. I'm afraid I do not have time to elaborate much since I can't be late!!!

I will say that I'm thrilled to have seen we now have readers from several other places outside of the U.S. I have seen New South Wales, Glasgow, Mexico, Australia and others on my live traffic map!!!! This warms my heart because one of my goals is to reach out to people about endometriosis and chronic illness... and not just people in the United States!!!

So... welcome to ALL of our blog readers! This is Day 26 of my endo blog and I am still very excited to connect with others with similar interests.

I wish anyone reading this peace, well-being, and minimal or no pain if possible. Please keep checking back. I promise to post some more interesting stuff than this. I am in a crisis mode this week trying to stay out of the hospital. I promise you there are good articles to come. So please keep checking back regularly. In the meantime, please read through my archives so far. I only started blogging June 1, 2008 but there is lots in the archives already.

Peace!

This article was ORIGINALLY posted by Jeanne this morning via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. It has since been modified and re-posted.

Due to technical limitations of the blogging software (or my lack of knowledge of a way to do it), I was unable to erase a comment I made in response to Yaya’s comment (her feedback is in comment #1 from 9:16 pm below). After replying to Yaya, I reconsidered my wording and thought it best to delete my response to her comment.

I didn’t see a way to delete my comment back to Yaya without deleting the original post too. I have reposted the original post AND Yaya’s comment (exactly as she worded it) is in comment # 1 below).

Therefore, the above post is identical to the original with the exception of this portion about time of day.


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

6/21/2008

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.

Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Just a quick reminder to follow up on what was mentioned in the above disclaimer: The following is not intended to be construed as medical advice. Please consult your physician for treatment. The following is for informational purposes only.

Women and girls with endometriosis may also suffer from other chronic conditions. Several other illnesses have been correlated to endometriosis in various studies. I’ll mention just a couple of them here but there are others as well.

Many women with endometriosis also suffer from fibromyalgia and/or interstitial cystitis. These conditions can cause debilitating pain and can be detrimental to quality of life. Many women in my local support group have multiple co-existing conditions (that includes me)!

Here is a quick summary of two (IC and fibro) of the many co-existing illnesses that can affect some endo patients... ones that affect a surprising number of women I know personally.

Fibromyalgia patients may experience symptoms of widespread musculoskeletal pain (such as pain from head to toe). Also, disturbed sleep and severe fatigue are common for fibro patients. So is “brain fog”. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. I have found numerous sources helpful for fibromyalgia information, including Fibromyalgia Network:

http://www.fmnetnews.com/.

Fibromyalgia too is often associated with other illnesses besides endometriosis and IC. One example of this is Chronic Fatigue Syndrome (CFS). CFS is another illness affecting multiple women in my endometriosis support group.

Interstitial cystitis (IC), also known as painful bladder syndrome, is a chronic, painful, inflammatory condition of the bladder wall that affects over one million people in the U.S. Although its cause is unknown and there is no cure, there are many available treatment options to help relieve symptoms. Although IC is considerably less well-known than them... it is as common as Parkinson's Disease or Type I diabetes. For further information regarding IC, I have found the ICA (Interstitial Cystitis Association) very helpful.

For IC info see:

http://www.ichelp.org/.

Research indicates that in some patients, IC itself may be associated with other diseases besides endo and fibro such as vulvodynia (vulvar/vaginal pain) --- (an excellent source of information on vulvodynia is the NVA (National Vulvodynia Association).

For vulvodynia info see:

http://www.nva.org/

IBS or irritable bowel syndrome is often common in endometriosis patients as well.

While endometriosis in and of itself can be debilitating for some patients, having endometriosis plus one or more of the illnesses mentioned above (or others I did not mention) is even more challenging still. It's a great deal to juggle!!

It is a testament to the chronically ill patients who deal with one or more of these illnesses that they are able to do the things they do! I have been truly inspired and uplifted by having the opportunity to meet and get to know other endometriosis patients who, like me, have co-existing illnesses with their endo. Networking with patients going through similar experiences can be SO supportive, powerful, and life-altering! It can lead to fantastic friendship because the illness(es) seem to generate some sort of instant bond between people who "get it" because they have lived through like experiences.

A final note... You may have stumbled upon this blog and NOT be an endometriosis patient. PLEASE feel welcome here and don't feel you need to have endometriosis to read or post comments on this blog.

Perhaps you have one of the illnesses discussed briefly in this post but DON'T have endometriosis itself. You may still learn something helpful or gain needed support from this blog! Or you may be able to share your insights with patients who share your diagnosis/diagnoses (and no, I'm not requesting marketing plugs from companies selling their wares... I'm inviting patients with illnesses like fibromyalgia or others mentioned above to join the conversation here). You may find needed support here.

So please feel welcome and at home! I intend to have plenty more posts about chronic illness and co-existing illnesses in the future!

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

6/17/2008

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.

6/15/2008

What is My Connection to Tori Amos??




(Picture credits go to http://everythingtori.com/go/galleries/)

I promise you there is a connection between Tori Amos and me but you’ll have to be a little patient to find out what it is. :) So please keep reading

I’ve decided you’ve probably heard enough “emergency room” talk in my last post (I know I have!) and you may be ready for a more uplifting/fun post! Hopefully this will fit the bill. Here goes!

Let me start by saying one reason writing this post is FUN for me is that Tori Amos’ music has gotten me through some very difficult and challenging times in my life… including lifting my spirits when my endometriosis was displaying particularly fierce symptoms.

Believe it or not, a big factor in how I stayed away from the emergency room trip this weekend was by playing Tori Amos CDs (!) while I was doing deep breathing exercises, meditating, lying very still, etc. I was able to lower my blood pressure, in part, because I find Tori’s music so therapeutic!

So I’m writing about my all-time favorite musical artist: Tori Amos. I once read she had been voted by Rolling Stone magazine as the # 5 Live Performer of All Time!! Yet -- you very, very rarely hear her on the radio. In fact, many of you have never heard of her. (She doesn’t worry about chart sales; her passion is the music, the sound, the lyrics… She does not let others dictate to her. She follows her own path). She is a very successful singer-songwriter, producer, recording artist, pianist, live performer… with a rabid “cult following”. She is NOT a “cookie cutter” recording artist. She is unique.

She has sold 12+ million records worldwide as of 2005, as per Wikipedia which was quoting the following press release for the autobiography Tori Amos co-wrote with Ann Powers: http://everythingtori.com/go/book/.

OK, I’ve kept you in suspense long enough. I have to tie Tori together with this blog so that you won’t wonder why I’m writing about Tori Amos on my endo blog, right?

I read Tori’s autobiography several years ago (see below):


“Tori Amos Piece by Piece. A Portrait of the Artist: Her thoughts. Her Conversations”, I was stunned to discover from her book that Tori Amos has endometriosis!

Now you may be wondering why that’s a big deal, right? It’s not like endometriosis is exactly uncommon. Well, it's just that I have seen or heard SO many print, Internet, and TV interviews of Tori (basically anything I heard about that was Tori-related… I tuned in for!) and I had never known that she has endometriosis until I read this book. So I was just amazed at this piece of information. Tori mentioned endometriosis just in passing in the book. (In it, she did discuss her difficult experiences with multiple miscarriages). I believe she had three of them. (She was diagnosed with a protein deficiency that her miscarriages were attributed to).

She also co-founded RAINN ranked in America’s 100 Best Charities by Worth Magazine in 1994, as per this Wikipedia entry: http://en.wikipedia.org/wiki/RAINN. Also here is Tori’s RAINN Public Service Announcement:

video

Yes, I really met Tori Amos! Look (below) at the pictures that were taken with my camera.

My friend took this shot of me with Tori Amos minutes before the concert:


Yes. I was this close to Tori Amos! :) I took this shot:


I’ve seen Tori live 4 times. The last time I saw her, my friend and I had special tickets. Ironically, my friend who went to that "special ticket" concert with me (the night we actually MET Tori) ALSO has endometriosis.

We had 3rd row seats (!!!) and we got to meet Tori before the concert, get a photo taken with her, get an autograph, listen to part of the sound check before the show, etc. It was one of those nights you never forget. :)

I find Tori completely musically brilliant, fascinating, complex, brilliantly intelligent, courageous, strong, outspoken, not afraid of what people think, controversial, a person who follows her instincts, and finally just a sensitive, caring, sincere person who tries to do her part to make the world a better place. As I said, I have had the honor and pleasure of meeting her in person at a concert because my friend and I had special tickets that were equivalent to “backstage passes”.

For info on Tori, see the Wikipedia entry for her: http://en.wikipedia.org/wiki/Tori_Amos.

My passion for Tori Amos’ music all started when I got my hands on “Little Earthquakes” in 1992. That CD was all it took for me to be hooked for life.

Per her Wikipedia entry (see link above), here are some of the awards she has been nominated for:

Grammy Awards

1995 — Best Alternative Music Album (for Under The Pink, nomination).
1997 — Best Alternative Music Album (for Boys For Pele, nomination).
1999 — Best Alternative Music Album (for From the Choirgirl Hotel, nomination).
1999 — Female Rock Vocal Performance (for "Raspberry Swirl", nomination).
2000 — Best Alternative Music Album (for To Venus and Back, nomination).
2000 — Female Rock Vocal Performance (for "Bliss", nomination).
2002 — Best Alternative Music Album (for Strange Little Girls, nomination).
2002 — Female Rock Vocal Performance (for "Strange Little Girl", nomination).
2004 — Best Boxed or Special Limited Edition Packaging (for Scarlet's Walk, nomination).

So one of my connections to Tori Amos (the one that motivated me to write this article) is that we both have endometriosis. However, I also feel connected to Tori because I love her music so much! It has lifted me up, kept me sane, and given me hope. I feel connected to her because she gives me strength and hope! Her music calms me down when little else can. I feel connected to her in many ways. I believe she has a very special gift.

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

6/13/2008

Thank You for Your Patience Waiting For This Updated Endometriosis Post! I'm Too Ill For a Full Post Now (Details Below)

Here's an update on why you haven't heard from me for a few days:

On June 13th I was VERY ill. I saw one of my specialists 6/13 and he was leaning towards having me go to ER. However, we found a less invasive way of dealing w/the situation. I'm not up to posting a blow-by-blow account due to low energy level (at least not right now). Please keep checking back for new endometriosis posts. I expect to be feeling well enough to post an entry (besides this just updated one) soon! I just can't do it right this minute. Thank you for your patience!!!

Today (June 15th) I am still quite ill. I hope to do a "real" endometriosis post soon (i.e. specifically about endometriosis rather than about my numerous chronic illnesses acting up and me being in a situation where I can't do much activity since I need to relax). One of several reasons that two of my doctors were going to send me to the emergency room was that my blood pressure was very high plus I was having vision problems and severe head/eye pressure that my doctor seemed to connect back to the blood pressure being so high: (190-121) on June 13th when it had been a perfectly normal 120/80 just 3 days earlier at my primary care physician's office)!

So I've been taking some well-needed time to "chill out" in hopes that my blood pressure will stay low enough that I won't have to go to the ER. I'm still trying to avoid going to the ER at all costs. (That's a long story). Let's just say I AM following my doctors' orders --- but I have had some close calls this weekend where I thought I might have to go to the ER between Friday and today.

I wrote a LONG, detailed response to Alicia's comment to this post but somehow I accidentally wiped it out!! I'm very sick and just not "operating on all cylinders" today.

***
I SHOULD EMPHASIZE THAT THE ER TRIP MY 2 DOCTORS SUGGESTED AS A POSSIBILITY YESTERDAY (THAT MAY STILL BECOME NECESSARY TODAY) WAS NOT FOR ENDOMETRIOSIS.
***

Today I'm just focusing on meeting the doctors' criteria for not going to the emergency room and focusing on how to NOT go to ER today. I'm just trying to make it until Monday and call my PCP first thing in the morning with an update. I'll keep you posted.

THANK YOU everyone for your patience. Lots of endometriosis posts will be coming up as soon as I'm stabilized!!! Thank you for your patience!!!

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

6/09/2008

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***

6/08/2008

The Beauty of Nature: Healing Illness

Photo used with permission.



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.

6/05/2008

Book Review - An Awesome Book on the Topic of Chronic Pain!

The Truth About Chronic Pain: Patients and Professionals on How to Face It Understand It, Overcome It by Arthur Rosenfeld.



I found this book in my local library. I think it is fantastic! It was interesting from start to finish.


The first section of the book, "Patients in Pain", consists of several chapters. Each chapter contains the author's interview of a chronic pain patient.


Part two contains the author's interviews with caregivers (health care professionals).

The third section is called "Thinkers on Pain".


Finally, the author concludes with an epilogue, "Toward Compassionate Pain Management", which covers the current state of pain management in our society and his view of how it needs to change for the better.


I think ANYONE who has chronic pain will find this book absolutely fascinating. Many of those interviewed in this book have strong opinions on the topic of pain. I agreed wholeheartedly with some, but not all, of their opinions. Whether I agreed with each opinion or not, I found all of the viewpoints represented here to be quite interesting.

I highly recommend this book to anyone who experiences chronic pain (or who has a loved one who does). While I realize that not all endo patients experience physical pain as a symptom, this book may still hold interest for those without that symptom. (Emotional pain is discussed in the book as well as physical pain).

This book is thought-provoking and eye-opening.

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

6/04/2008

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.

6/03/2008

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.

6/02/2008

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!

6/01/2008

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.

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!