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2/28/2009

'Jeanne's Endo Blog': Ways To Help Spread Awareness About Our Petition And Media Campaign For Endometriosis Awareness

It is March 1, 2009.
That means that it's Endometriosis Awareness Month!!!

If you have not watched my new VIDEOS, please check them out. They are located in the right sidebar. You can't miss them!

WE ARE BUSY!!! Many endometriosis bloggers are banding together to promote this awareness month!

Are you looking for a quick and easy way to support our ongoing efforts to create or increase endometriosis awareness and understanding?

Are you too tired to spend very much time doing so?

I have a couple of ideas that you might like to do to help increase awareness of endometriosis:

1) Having the petition listed here on my blog is fine but we'd reach a lot more people if the link was posted elsewhere too. If you have a blog, would you consider linking to the endometriosis awareness petition? Anyone who supports the endometriosis cause is welcome to sign it. In addition to hundreds of endometriosis patients, it already has patients' grandparents, spouses, parents, aunts, siblings, etc... in addition to patients themselves. The more names we get, the better our odds for media coverage!

Here (below) is the link that will take you to the petition. If it looks like something you'd like to post a link to on your blog, just copy the URL from that screen to use as the link. That way people will be able to access the petition right from your site!

Create Endometriosis Awareness & Understanding

2) If you're on twitter, Facebook, or any social networking site... please post information about Endometriosis Awareness Month whenever you get a chance.

On twitter, please mark any endometriosis-related tweets with this symbol at the end of the message:

#endo

This is catching on and sorts all of our endo tweets nicely!!
Also...

If you're interested in posting one of my banners on your site, please feel free.

Help yourself! There is a vertical banner and a horizontal one...





3) If you think your readers might benefit from any of the info presented on this site, please consider grabbing one of the following banner graphics and installing it on your site with a linkback to my blog. I would greatly appreciate it!

My friend Alicia (aka Yaya) honored me by posting my banners on her site and I very much appreciate it!

4) For anyone who hasn't written to Mariela Azcuy of Meredith Publishing Corp., it's not too late to do so. See previous posts for details.

This Endometriosis Awareness Month is kicking off strong with multiple endometriosis bloggers teaming up to create endometriosis awareness on all sorts of projects! It is very exciting!

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

2/27/2009

'Jeanne's Endo Blog': March is National Endometriosis Awareness Month

I saw this link thanks to Sandy Robinson listing it on the Fighting Fatigue blog.

It's so great to see endometriosis awareness increasing!!! This link gives the history on when National Endometriosis Awareness Month officially started being observed.

March is National Endometriosis Awareness Month
Endometriosis is a chronic condition that affects over 5.5 million women in the United States and Canada.

March is National Endometriosis Awareness Month

If you pull up the above link, you'll see that you can comment to it (as I did there) and you can "share" it (as I just did by posting the link above on Facebook).

Let's all work together to increase endometriosis awareness. Reading the link above, commenting, and linking it to Facebook probably took me all of 3 minutes total. Won't you join me in sharing this link?

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

"Jeanne's Endo Blog" Thanks Melissa Ralston Of "Endometriosis: Facing The Battle Head-On"...

Thank you to Melissa Ralston for the shout-out about my endometriosis awareness petition and our efforts to attract media attention to the importance of getting endometriosis FACTS out to the public.



Here's her post:

Raising Awareness: Media Campaign for Endometriosis Awareness Month (March)

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

2/26/2009

'Jeanne's Endo Blog': Hysterectomies Are Over-Performed In The U.S. ---- My Comment Posted On The February 26th Newsweek Article "Female Trouble"...

This post is in regard to a Newsweek article about hysterectomies.

Today I received a Google alert for an article related to the search term "endometriosis".

The article is called "Female Trouble".

To be honest, I've never been a big fan of the phrase "female trouble". After all, when men have prostate problems or testicular cancer, no one goes around labeling it "male trouble", right??

So this Google alert got my attention with the title of the Newsweek article alone.



While I wasn't so crazy about the title, I was pleasantly surprised by this article:

"Female Trouble"


Here is the comment I posted on the Newsweek site in response to this 2/26 article about hysterectomies:

Newsweek is to be congratulated (!) for educating the public that hysterectomy decisions are serious and permanent!

This article wisely takes note of the fact that too many hysterectomies are performed in the U.S.

I have met women who have had hysterectomies in the hope that it would help them feel better (with their endometriosis symptoms), only to proceed to have further, serious problems AFTER a hysterectomy! Their doctors led them to think they’d get relief that did not happen. The grief this caused them emotionally on top of the persisting physical problems is significant! Once your uterus is gone, it’s gone. There’s no going back.

Deciding to have a hysterectomy is a very serious decision to make.

Patients, don't be afraid to seek out a 2nd or 3rd opinion if a doctor suggests you get a hyst.

My local support group members have found this organization (see below) helpful for researching alternatives to hysterectomy. This site is a resource for any woman considering having a hysterectomy (not just endometriosis patients).

HYSTERECTOMY ALTERNATIVES AND AFTEREFFECTS
HERS FOUNDATION: Hysterectomy Educational Resources and Services


I have had doctors talk about hysterectomy as an option for me over the years, due to my endometriosis and other GYN conditions. (I am 40 years old and my endometriosis started at age 13). I have elected not to have a hysterectomy for a variety of reasons. (There is no cure for endometriosis, by the way).

Many people believe hysterectomies cure endometriosis. That is a MYTH.

I would urge women thinking of having a hysterectomy to research your options and seek out multiple opinions BEFORE jumping into a hysterectomy.

As this article concluded:

Hysterectomy IS a serious and permanent decision.

Thank you, Newsweek, for letting people know MORE about hysterectomies than they might have before they read this article!

Jeanne
Blog address: Jeanne's Endo Blog
* March is ENDOMETRIOSIS AWARENESS MONTH!!! *

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

2/24/2009

"Jeanne's Endo Blog": Endometriosis Awareness (Vlog Post 2)

Our campaign is making progress! If you have not seen the related posts preceding this from 2/16/2009, 2/20/2009, and 2/23/2009... please see links at the end of this post so this one will make more sense.

Welcome to my second vlog!

THANK YOU you for the warm welcome on the first one... the most comments I've ever had to one blog post!

The video clip below will update you on our endometriosis awareness campaign status: our awareness petition, our letter-writing campaign, our variety of efforts to seek media attention regarding endometriosis facts, and our preparation for Endometriosis Awareness Month.



Video is copyright © 2009 Jeanne's Endo Blog. All rights reserved.

In preparation for Endometriosis Awareness Month... I am asking endometriosis patients, bloggers, and anyone else interested in the endo cause to please contact Donna Jackson Nakazawa (contact info for her blog address is in link below).

Also, would all twitter users please include this symbol at the end of all endometriosis-related tweets?

#endo

You may have noticed other bloggers using similar hashtags...

Such as "The Spoon Lady" from:

But You Don't Look Sick?, written by Christine Miserandino.

Christine uses the symbol: #spoonie

By using #endo, we will be able to search twitter for endo-related tweets. So will anyone who uses twitter and makes use of it's search function.

Granted, with a 140-character limit per tweet, sometimes it may be a bit challenging to fit the extra 5 characters. However, this will code enable us to sort/search for the tweet messages we need more quickly & effectively and it will catch the attention of others to the endo cause.

If you haven't already done so, please comment on Donna Jackson Nakasawa's blog (see link below for her blog and info about contacting her! :)

Related links:

Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

Friday, February 20, 2009 "Jeanne's Endo Blog": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

Monday, February 23, 2009 "Jeanne Endo Blog" Honors Donna Jackson Nakazawa, Author Of The "Ill In A Day's Work" Article In The Feb 2009 Issue Of More Magazine!

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

2/23/2009

"Jeanne Endo Blog" Honors Donna Jackson Nakazawa, Author Of The "Ill In A Day's Work" Article In The Feb 2009 Issue Of More Magazine!

I'm so happy; I feel like I just won the lottery!

I just found a blog for Donna Jackson Nakazawa!




She is the writer of the phenomenal chronic illness article that launched our endometriosis awareness campaign back on February 16, 2009:

Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!



Donna Jackson Nakazawa is also the author of a book: "The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance -- and the Cutting-Edge Science that Promises Hope"

Upon discovering her blog, I felt compelled to write her and thank her for that amazing article referenced in my 2/16 post:

"Ill In A Day's Work"

Here's my letter to Donna Jackson Nakazawa, posted on Donna's Blog
--->
Hi Donna!

I am SO happy I found this site! If your ears are ringing it’s because I have been singing your praises on my blog!

Your “Ill in a day’s work” article for More magazine’s February 2009 issue is PHENOMENAL!!! I cannot say enough about it. I’ve written on my blog about it! I posted my first vlog (video) entry and even held up your magazine and just plain raved about the article.

Having numerous chronic illnesses, many of which are autoimmune conditions… I LOVED your thorough article!

The first chronic illness to hit me was endometriosis, at age 13. I’m 40 now. So I have dealt with endo for 27 years.

In that time, I’ve participated in local (in person) endo support groups since 1992 (after my diagnosis, which took TEN years from onset of symptoms). I started an endo group, as a volunteer support group leader, in my current community in 2001. I started my blog last June.

My career went up in smoke several years back. I was far too sick to function.

I have heard hundreds of women’s stories… Not just with endometriosis but with others illnesses (many connected in studies to endo)… For example, fibromyalgia, IBS, interstitial cystitis, Reynaud’s Disease, multiple chemical sensitivity (MCS)… [I have all of the above diagnoses... and other conditions].

My blog is about chronic illnesses. Mariela Azcuy of Meredith Corp. has emailed me publicizing your chronic illness article after seeing my blog.

Since then, I have organized a letter-writing campaign to find a way to get endometriosis featured in the national media. It affects 89 MILLION women and girls. It can affect careers, marriages, fertility, severe chronic pain… It has a huge impact on patients and their families.

I have had 7 surgeries for endo. I have too many other illnesses to count at 1:40 am when I should be asleep…

I just want to thank you for your More article so much!!! I literally held up the magazine in my vlog post on 2/16 on my blog… and asked people to buy it for YOUR article.

I would be honored if you’d take a moment to check out my blog post *about your article*!

I don’t normally post links in blog comments and I’m NOT trying to be spammy but I’m listing the specific link that will route you to the More magazine post with your article:

http://endendoat.blogspot.com/2009/02/jeannes-endo-blog-how-more-magazines.html

If you read the blog comments section, you’ll see where I talked about the fact that I would “jump up and down” if we in the endo patient community were fortunate enough to have a writer well-educated about chronic illness (such as you) write a feature on endo!

Endo affects 89 MILLION women & girls. That’s more than breast cancer!

I would be deeply honored if you’d read/view my blog entry from 2/16 about your article.

THANK YOU (!!!) from the bottom of my heart for that More article! Looks like I need to add your book to my very large reading list. There are never enough hours in the day for me to read my mountain of books.

Take care and I’d be thrilled and honored if you check out my blog.

Also you can email me directly at:

endendo [at] frontiernet [dot] net

I just wrote it out to minimize spam. I learned awhile back that the Google robots and such find online posted email address but this helps. Just remove the spaces, replace [at] with the @ sign, and replace [dot] with a period… and delete the spaces.

I very much look forward to connecting with you!

Jeanne


Please join me in thanking her for this outstanding article and please also join me in asking for her assistance in helping us find a national voice for endometriosis, which affects 89 MILLION women and girls worldwide... more than breast cancer.

Let's thank her on her blog and let her know how much we appreciated her article on chronic illness! Let's let her know that we would be deeply honored if she'd consider writing an article about endometriosis!

In honor of the upcoming March Endometriosis Awareness Month, let's make our voices heard and spread awareness!

Related links:


Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

Friday, February 20, 2009 "Jeanne's Endo Blog": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!


Thank you.

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

2/21/2009

"Jeanne's Endo Blog" Featured On Google Alerts... Plus A Nature Break And Intro to HolisticTwitter!

I thought I'd start out with these beautiful pictures. They are courtesy of Debby Bruck... a member of the HolisticTwitter group I just joined!

Andrea Tannouri will give you a warm welcome there! It's a cool group. Check it out!

Enjoy...


Find more photos like this on HolisticTwitter.com

I was pleased to receive the second Google alert in two weeks featuring my blog!

On 2/6, the Google alert email featured this link (which was a bit outdated when the alert went out):

Wednesday, November 26, 2008 'Jeanne's Endo Blog' Is Featured In Interstitial Cystitis Association's Newest Cafe ICA Newsletter!!

On 2/21, the Google alert email featured this link (which is a brand new post):

Friday, February 20, 2009 "Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???

I am honored that Google alerts for two of my blog posts have been sent out since February 6th!

Have a great weekend!

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

2/20/2009

"Jeanne's Endo Blog": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

This post is a follow-up to:

Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

If you haven't yet read the above post, I encourage you to do so.

Following that post, Endochick and I discussed how we can capitalize on the momentum we have going to get people writing letters for endometriosis awareness. I asked Endochick if I could reprint her amazing letter to Mariela Azcuy (see Ms. Azcuy's contact info later in this post):

Endochick graciously agreed to let me print her letter to Ms. Azcuy. Whether this letter was written to Ms. Azcuy or to anyone with media contacts, we believe that posting sample letters such as this will inspire others to write their own letters regarding their personal journeys with endo!

March is Endometriosis Awareness Month. We're ramping up now to, hopefully, make a big splash next month regarding endometriosis awareness!

I urge you to read Endochick's post from today:

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

Her post about this topic on her blog gives much helpful detail!! So please go check it out!!

Now, it is my pleasure to present Endochick's letter. Again, I urge you check out Endochick's entire post about the topic of letter-writing to create endo awareness... especially with Endometriosis Awareness Month around the corner in March!!

As promised, here is the example of Endochick's letter to Mariela Azcuy. Please remember that her work on her blog is copyrighted and that the following letter is therefore under copyright protection (as is my writing on this blog).

Endochick says,

"You may use this example as a reference, and I hope it inspires you".



Endochick

Here's Endochick's "Sample Letter":

---

Mariela Azcuy
Senior Associate Director of PR
Ladies’ Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017

Dear Ms. Azcuy:

I am writing on behalf of the 89 million women and young ladies who suffer daily from endometriosis. In North America it’s estimated that this number is 5.5 million strong and growing every year. Many of these women go undiagnosed for years and then once diagnosed are either under or improperly treated. And even worse, Ms. Azcuy, endometriosis sufferers are marked with a stigmata that haunts them, often before they are even officially diagnosed with the condition. Society views many of us as drug seekers, doctors withhold needed medication, and our co-workers and bosses see us as attention seekers.

But let me first commend your corporation for its in-depth coverage on chronic illnesses. While these illnesses do warrant a need for more press time, one chronic and often time debilitating illness is not getting it’s due coverage in the media – endometriosis. This past fall, television viewers received a mediocre education on endometriosis via the coverage given to Dancing with the Stars’ Julianne Hough and Lacey Schwimmer’s diagnoses’.

The coverage by the media glossed over one vital fact in how endometriosis is diagnosed: the only definitive way to diagnose endometriosis is to perform a laparoscopy. According to the Endometriosis Association, “diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient makes better treatment choices.” The Endometriosis Research Center agrees: “Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive.”

The scary fact is that there are doctors diagnosing patients not with “probable endometriosis” but with “definite endometriosis” based on nothing more than their symptoms. The diagnosis from one to the other allows the doctor to prescribe a whole host of potent medications; medications that should be reserved for women with confirmed endometriosis that doesn’t respond to lesser hormonal preparations. Yet, I have personally seen this happen with two women who have contacted me via my blog. They hadn’t even had a laparoscopy, so their doctors can’t even be sure they in fact do have endometriosis! It was believed that my own sister had endometriosis until a laparoscopy found her pelvis free of the disease. A pap smear, on the other hand, found the cause of her excessive bleeding: cervical cancer.

There are too many conditions that can mimic endometriosis - diverticulitis, infection, ovarian cysts, pelvic inflammatory disease, irritable bowel disease, STD’s, vaginitis, and even ectopic pregnancy. Would it be ethical to give anti-cancer drugs without first doing an MRI or a CT scan to look for a tumor? Yet, there are doctors subjecting women to the effects of menopause, severe migraines, moments of rage, and a decreased sex drive when an outpatient, surgical procedure can determine whether there is even a need for the medication!

As I hope you can see there is an urgent need for appropriate, in-depth media coverage on endometriosis. My fellow endometriosis and chronic health bloggers congratulate your corporation on the wonderful coverage you’ve given to the chronic illness community, now we implore that you do the same for the endometriosis community. Please help me and my fellow endometriosis bloggers to help the 89 million women and young ladies feel that the pain they feel is not in their minds, and that they are not alone. Help us to give endometriosis the voice it deserves in the media.

Sincerely,

Endochick (Put your real name)

Blog:
Endometriosis: The Silent Life Sentence

------

My hope and intention in the coming weeks is to post more sample letters to inspire YOU to write your stories to get the facts about endometriosis into the media once and for all.

Please keep those letters rolling into Ms. Azcuy and I'd really appreciate if you can copy me on them if at all possible!! If you copy me on your letter to the press (Ms. Azcuy or otherwise), please indicate whether you'd be comfortable with me posting your letter as a sample to inspire others to write in to support accurate media coverage of endo!

The response to the vlog/blog post has been fantastic. Please keep those letters and petition signatures rolling in. :)

Thank you!

This post is cross-posted with Endochick's post:

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

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

"Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???

Today I received an email from my friend Alicia (aka Yaya) of:

Yaya Stuff

Here's what Alicia's email to me said:

One of my infertile blogger buddies just posted that she has a laparoscopy coming up:

Confessions from an Impulsive Addict

Thought we should keep her on our radar since this is her first one.

Alicia

After reading Alicia's note, I stopped over to the blog she had mentioned.

By the way, I should highlight the fact that this email from Alicia is a classic example of her going out of her way to help women with infertility and/or endo!!!

Anyway, I posted a lengthy comment on her blog and the thought occurred to me to turn it into a post because several people just this week (!) have come to my attention as being undiagnosed with endo and heading into laparoscopies. Each of these women was anxious!

So in my comment on her blog (see what I posted below)... I explained what I have experienced with laparoscopies. Also, I know MANY women who have had laps and wanted to reassure her that there are plenty of us ready and willing to help her with laparoscopy questions since we've had them (numerous laps for many endo patients).


Here is the comment I posted on the blog:

Confessions from an Impulsive Addict


Impulsive Addict,

Hi! I'm the Jeanne that Alicia (aka Yaya) mentioned above. She sent me an email about you after seeing your laparoscopy post. She wanted to "send you some support".

I have endometriosis and I have had 7 surgeries. Six of them were laparoscopies and 1 was a laparotomy ("major surgery") with a large incision. In that major surgery, I had 2 surgeons working as a team. One removed the endo. The other (a colorectal surgeon) removed a foot of my colon. While they were in there, they discovered a carcinoid tumor on my appendix. So out went the appendix.

I TOTALLY understand your fears and anxiety about having surgery.

Don't hesitate to email me with any questions you have about laparoscopy... because I have had 6 of them!

Here's my email address (written out to foil the robots/spammers): endendo [at] frontiernet [dot] net

Here's my surgery history:

1992: 1st laparoscopy, diagnosed w/endo. Unfortunately, this Dr ended up being a real jerk. I got the correct diagnosis… just no pain relief.

1993: 2nd lap with a more skilled doc who went in and got what the first GYN missed!!

1994: 3rd lap... more endo removed

1996: laparotomy with hemicolectomy/bowel resection due to malrotated colon/paraduodenal hernia that was causing partial intestinal blockage, endo removed again, carcinoid tumor/appendix removed

2003: 4th lap... endo removed again, interstitial cystitis diagnosed via cystoscopy the same day while under anesthesia. (IC and endo often co-exist in the same patient)

2004: 5th lap... believe it or not, the pelvic pain specialist I now see (highly skilled with endo) did not find any endo in this surgery! However, he diagnosed me during this surgery with pelvic congestion syndrome (by also doing a venography to confirm). He also removed a 3" cyst (non-endo type cyst) from my left ovary. This cyst was a "normal" type of cyst that any menstruating woman could have (as far as tissue type) but clearly it needed to be removed since it was 3"!

2008: 6th lap... this lap was for the purpose of cutting a nerve. Nerve cutting is a "last resort" type procedure. I had off the charts pain for several years leading up to this surgery and had gotten nerve blocks, etc. This was one of the 2 out of 7 surgeries where endo was not found. This surgery didn't go as planned. Let’s just say 2 nerves were cut (despite me consenting to one) and the results of the surgery were not good with the nerve cutting (long story). Nothing for you to worry about! Totally different kind of lap.

I’ve had 6 laps so I have lots of personal experience plus I know a slew of people who have had laps as well.

So, if you have questions about laparoscopy, I'm here to help!

Here are some of the "tips" I suggest to women having a laparoscopy:

1) Find out how experienced your surgeon is. Some docs know far more about endo than others. You don't want to have extra surgeries down the road because the first surgery didn't give you the most "bang for your buck". I do not want to increase your anxiety in any way but having a surgeon who really knows endo is really crucial when going into a lap for the reasons you mentioned.

2) Try to relax. It is totally understandable that you are anxious about having surgery --- but worrying about it isn't healthy for you. Whatever coping mechanisms you have to get through the next few weeks without fixating on the lap will help you. Some examples might be: relaxing music, candles (if you're not allergic like me), meditation, acupuncture (VERY HELPFUL!!!!), vegging out & watching TV, blogging, etc... Whatever will distract you from thinking about it will help. Getting all worked up about the lap will get stress hormones going in your body. Not helpful.

3) OK. The surgery. Yes, it's surgery. Yes, it's outpatient. Yes, it's easier than an inpatient (major) surgery... like the 1996 laparotomy that I had.

However, here is a heads up.

In my personal opinion, doctors minimize the recovery time most women need after a lap.

I started a local endo support group in 2001. (That group is where I met Alicia). I have heard many, many stories from women about their recovery time exceeding what doctors predict. DON’T be scared by this but DO give your body TIME and REST after the surgery to properly recover. It’s very important to get rest afterwards!

I've been in endo support groups (the local, in-person kind) since 1992. I have talked with MANY women who have had laps.

I started my blog last June and have heard many more women's stories.

Between the support groups and the blogging, I have heard hundreds of women's stories about their laps. I can try my best to answer any questions you might have.

Obviously I can't give medical advice but I can share my personal experience and the stories of hundreds of other women.

Anesthesia has improved immensely over the years. My last couple of laps were much, much better.

So you are most likely not going to have the type of anesthesia side effects that were common in the 1990s.

The doctor inflates the abdomen with carbon dioxide to allow for better visualization. The laparoscope is used differently by different docs (i.e. number of incisions).

The small naval incision is a given. The question is how many other incisions the doc chooses to make.

Additional incisions allow for instruments to be inserted in multiple locations. (Essentially the doctor can see what's going on much better with the extra instruments/incisions).

If the doc sees something that looks like endo, he/she takes it out. A biopsy is done of the tissue to verify that it's endometrial tissue. Don't be scared by the word biopsy. It's just what they use to tell if it is/isn't endometrial tissue.

Doctors can't always tell endo just by looking at it.

Anyway, assuming you have endo... the doc will remove it, then stitch up the very small incisions (don't worry, they are small), and they'll wheel you off to the recovery room.

You'll wake up... probably feeling pretty feeling foggy. (Everyone's different in how they react to anesthesia). The nurses in recovery will watch you and they have certain criteria to follow on when to switch you from recovery back to your outpatient "room". (It's one of those rooms with curtains for sides but it’s a room).

Once you get to your room, your loved one (hubby in my case, mother in the early years) will tell you what the Dr said about how your surgery went.

You won't talk with the Dr directly until your post-op appt. So it’s important for your loved one to really listen to what the doc says re: how the surgery went, what was found, etc. My husband's phone can do audio recordings. I had him record what the Dr said about my surgery (with the doctor's permission to record his comments). Or the loved one could jot some notes down re: what the doc said post-op.

That way, I didn't have to anxiously wait the 1-2 weeks after surgery to get to the post-op appt & find out what the heck happened. That wait would drive me bonkers!

The post op appts used to always be 1 week after but nowadays they seem to be more like 2. (I personally think 1 week was better).

Anyway, TAKE IT EASY after surgery. Lie down, definitely no lifting, rest, rest, and rest.

Docs tend to minimize when it comes to laps. Surgery is surgery. Yes, you'll be sore. But the pain meds will help and the more rest you get the better you'll feel.

If you try to get too active too soon, it's not good. I've made that mistake. Trust me. You'll want plenty of rest afterwards.

4) Recovery at home... Everyone is different but I would plan on having a very sedentary week after surgery. Some people find it helpful to have a loved one help out. For example, my mother-in-law stayed with us after one of my laps. She took care of my daughter, who was in pre-school at the time while I rested and my husband was at work.

It helps to plan ahead for whatever help you may need.

Don't let anyone pressure you to do too much too soon. Don't buy into any guilt trips. Your body will need time to recover.

Recovery is much better now post-lap than in years past. Docs are better at getting the carbon dioxide out. This is huge because back in the 1990s, I'd get these terrible chest and shoulder pains post-lap and it was the CO2. The good news is docs have improved greatly on getting the CO2 out!

REST, REST, REST

5) Results of lap... if they find that you do have endo, you'll have the proper diagnosis that will enable you to get whatever treatment is appropriate for you.

If it's not endo, the laparoscopy will enable them to look around for other issues.

So the good news is that it's highly likely that this lap will give you some answers or insight or relief... regardless of what it is that they find!

6) I know you're scared. I don't know anyone who doesn't have some fears going into a surgery. These feelings are normal. A first surgery is often scarier because of the whole "fear of the unknown" factor.

That is why I wrote some of the stuff above. While it may not all sound fun, I personally would rather go into something like a lap armed with info than head into "the unknown".

I can provide you lots more info offline if you like.

I have blogged extensively about endo and many women comment on my blog that have not yet had a lap to confirm their endo but strongly suspect they have it.

Feel free to look through my blog because you may find info there that's helpful to you heading into surgery.

I'm generally faster moderating comments than answering direct emails but you're welcome to contact me via either method. :)

I'm sorry to have babbled on so. I just wanted to try to make you feel better. Alicia's email to me had your link and mentioned you were heading into your 1st lap. So I just wanted to stop by and let you know that I'm available if you need an ear or if you have lap questions.

Having had 6 of them, I've learned a few things along the way. :)

I know it's scary and I know the wording on those forms can be freaky.

What may give you some peace of mind is to set up a health care proxy. Sounds complicated but it's not!

You can get the form at any hospital. Here's what I did. I listed my husband as my health care proxy. If I'm unable to advocate for myself or I'm incapacitated in some way, I authorize him to make medical decisions on my behalf.

For example, with my last surgery... I explicitly told my doctor in the pre-op appt "I do not want to have a hysterectomy unless there's cancer”. I went over my wishes in detail with my husband. I designated him as my health care proxy.

That way, I have the peace of mind that my wishes are being respected (say, protecting fertility) while I'm under anesthesia.

That made me feel better. I believe it's so important for patients to advocate for themselves and to delegate that duty to someone they trust if/when they are going to be unable to speak for themselves.

I'm sorry to get all serious on you. It's not all doom and gloom!

They might find endo, remove it, and help you somehow (pain relief? fertility?)

I know MANY women who have had laps that would be happy to talk with you about their experiences. If that would give you any comfort or peace of mind, let me know!

I'm a big believer that "fear of the unknown" is far worse than reality most of the time. Knowing what to expect may calm you down heading into this surgery.

I have posts about coping mechanisms, the healing power of music, relaxation etc. You may find something on my blog that will "calm your nerves" a bit about the lap.

Hang in there!!!! When I read your post and heard how worried you sound about surgery, I felt compelled to respond with this detailed comment because I want to help!

So, use these next few weeks to prepare. Take advantage of the notice to make arrangements for your recovery period, for example. Instead of dreading the wait for your lap, use this time to use or develop coping techniques, relaxation, stress reduction, etc.

I know you'll be relieved to get the surgery behind you. That's understandable. However, if you use this time to prepare, physically and mentally, things will go much more smoothly than you might think.

I hope this comment makes sense. I've had terrible insomnia and have been getting very little sleep lately. So I'm feeling dizzy and out of it right now from being so tired. So I apologize if this comment is talking in circles at all.

I'm exhausted and in pain and on my last little bit of energy right now.

I hope something in here is helpful!!

Again, don't hesitate to contact me if you have questions or just need to talk to someone who has had numerous laps before.

I'm sending positive energy your way and wishing you a smooth surgery and recovery.

Remember... after the surgery:

REST, REST, REST :)

Take care and try to relax... For me, acupuncture is at the top of my list when trying to calm down!

Have a wonderful night! :)

{{Hugs}}

I'm around if you need me!!!

Jeanne

February 20, 2009 5:54 PM


Hopefully this will be helpful info to anyone out there reading this who is wondering about laparoscopies or scheduled for a first laparoscopy.

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

2/16/2009

Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

More magazine has a superb February 2009 article!!!! Read on...

Finally! I am posting my first vlog, as I have wanted to do for months. I'll be very anxious to hear your feedback. Some of you may ask, what's a vlog?
Here is a description.

My first vlog entry talks of my intense desire to get the facts about endometriosis featured in mainstream media magazines. I'd like to make the hundreds of voices on our
Create Endometriosis Awareness and Understanding petition heard!


video
Video is copyright © 2009 Jeanne's Endo Blog. All rights reserved.

As promised, here is the contact info for writing to request endometriosis coverage:

Mariela Azcuy
Senior Associate Director of PR
Ladies' Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017

mariela.azcuy@meredith.com


Please first join me in THANKING Ms. Azcuy for sharing the February 2009 More magazine article, "Ill In A Day's Work"!! It is phenomenal!!

In addition to thanking Ms. Azcuy for sharing the amazing article linked above (make sure you tab through and catch all 7 screens for this article), I wanted to request that one or more of her magazines consider printing a story on endometriosis.

With 89 MILLION women and girls with endo worldwide, we need to get the facts about endo out to the public, to undiagnosed patients in need of guidance on how to get diagnosed, and to patients to let them know they are NOT alone!

PLEASE HELP CREATE ENDOMETRIOSIS AWARENESS & UNDERSTANDING BY DOING THE FOLLOWING:

(1) Sign the awareness petition linked above. Ask your friends and loved ones to sign it too. ANYONE wishing to support endo patients may sign it. The more people sign, the better our odds at getting endo featured. Write to Ms. Azcuy requesting media print coverage of endometriosis. Time is of the essence!

(2) If you have a blog, please blog about this topic and link back to this blog post!

(3) If you don't have a blog, please be persistent when asking friends and loved ones to sign the petition. (The petition has been emailed to Ms. Azcuy already but let's get more names). Also, you don't need a blog to write to her asking for endo coverage! Frankly, this could be our chance to finally put that petition to use. Too many women are suffering in silence.


*************************************************************************************
89 MILLION women & girls worldwide with endo... the numbers are just staggering)!

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

Thank you for your support! Let me know what you think of my first vlog, please!!

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

2/12/2009

"Jeanne's Endo Blog" Says: Smile! Happy Valentine's Day!



I was tagged by My Endo Journey to share 6 things that make me smile.

I don't normally do these (this is actually the only tagging I've ever done with my blog) but this smile graphic was too good to pass up... especially since it's Valentine's Day. :)



Six things that make me smile:

1. My amazing husband and daughter, who experience challenges in conjunction with my conditions daily and demonstrate flexibility, patience, and unconditional love!

2. My extended family and "in-person friends".

3. My blog... which is so therapeutic for me and which simultaneously helps other people. Helping fellow patients and local support group members makes me happy. Networking with fellow health bloggers is wonderful too. I have blogger friends coming out my ears now. :)

4. Acupuncture... which is totally amazing!!!!! (I have been writing a post with details about this forever. Stay tuned because I should be posting it soon).

5. When I find a coping mechanism that helps me manage pain (or when I use an existing coping technique).

6. Music and art. Funny DVDs. Robin Williams. Tori Amos.

I tag: Steph, Foxy, Mckay k, and Kerry. Enjoy!

RULES: Link to the person who has tagged you. (For me that's My Endo Journey).

Write down six things that make you happy. Post the rules, tag others and let them know you did it. Then tell the person when your entry is complete.

P.S. I was about to publish this when I saw that Endochick tagged me for this too. :)

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

2/10/2009

Michael J. Fox's Message Of Hope Captures Key Idea For The Chronically Ill: Would You Go Back?

The other night, I watched a fascinating documentary on PBS. I'll talk about that in a moment.

First, I'm going to start this post with a YouTube video clip from a 2006 interview of Michael J. Fox by Katie Couric.



A fantastic Frontline 6-part PBS documentary called "MY FATHER, MY BROTHER, AND ME" aired February 3, 2009. The topic was Parkinson's Disease but so much of what was discussed could apply to many other chronic illnesses.

For some reason the code to embed the video clip here is not working. So I will include the links to the PBS site where you can view it online.

Michael J. Fox was interviewed for this documentary. I'm including two links below... one for the interview with him and another for the documentary itself (in which he's also interviewed).

The first link is to Dave Iverson's interview of Michael J. Fox. It's running time is 19:38. It is divided into 5 parts. I highly recommend watching the whole thing... but the 2nd and 5th parts are particularly interesting to me because Michael J. Fox covers a topic that many chronically ill patients can relate to. He talks about how he would never want to go back to his life before Parkinson's Disease and he says, "somehow I've been able process loss in a way that I see the things that fill those gaps". If you just don't have 19 minutes and 38 seconds to watch the whole interview, focus on these 2 sections:

2. His personal perspective on living with Parkinson's...
This is where he explains how he wouldn't go back to his life before Parkinson's.

5. "For me, right now, this is my life, and I wouldn't trade it for anything..."
This is where he ties up the notion that he is doing what he's meant to be doing at this moment in time and while he'd love to find the answers for Parkinson's (and other illnesses), right now he's doing what he's supposed to be doing (this is a paraphrase... watch the video for his exact words).

VIDEO LINK 1:

Dave Iverson's interview with Michael J. Fox in conjunction with the Frontline 6-part PBS documentary called "MY FATHER, MY BROTHER, AND ME"

I just love, love, love this interview. For so many of us with chronic illnesses, it can be too easy to slip into, "why me?" thinking. For many of us, this mindset slips in briefly during the especially bad times only to be replaced by a more positive outlook of hope and purpose the remainder of the time.

No one wants to be sick. However, to be chronically ill and constantly angry about it is not healthy. What I love about what Michael J. Fox says in this interview is that it is aligned with how I see myself in relation to my illnesses.

Of course I wish I could wake up healthy tomorrow. Who wouldn't? However, I wouldn't go back in time and "erase" any of my illnesses from happening... no matter how much they hurt or challenge me. As Michael J. Fox so eloquently describes in this interview, I believe everything that has happened to me is (my words here) "part of my path".

Here is a link to his foundation:

The Michael J. Fox Foundation For Parkinson's Research

Let's just take the 1st major illness I was diagnosed with. If I hadn't had endometriosis, I would not have been in endo support groups at the local level since 1992. Through these groups, I have met some of the strongest, smartest, most caring, most resourceful, most compassionate people I've ever met. These fellow patients have been by my side as I learned to advocate for myself (and others) when interacting with healthcare professionals. They have checked on me after surgeries. They have called and emailed me to share experiences for mutual support.

If I hadn't had endo, I never would have started this blog. Through this blog, I have learned so much, met so many fantastic people, and given/received so much support.

I completely understand on a fundamental level what Michael J. Fox is talking about. Chronic illness really does change the way one looks at the world. Some might automatically think this to be a negative thing. However, I agree with Michael J. Fox that this can be a very good thing!

One little phrase has gotten me through many years of serious adversity:

"Everything happens for a reason"...

This phrase can be misused and uttered to people at times when it is not helpful. However, this phrase has been EXTREMELY helpful to me in coping with all sorts of things. When bad things happen in my life, I tell myself "everything happens for a reason" to get through the moment. I may not be able to see the reason something happens anytime soon (or even ever) but there have been many times over the years where something happened that I did NOT like at the time. Then, I have gone on at a later time to see that it was best in the long run... or that it helped me learn & grow, or that the negative happening was necessary somehow.

I just love the way Michael J. Fox words it in his interview. It's a great way to look at things.

The link below is to view the complete Frontline documentary. While the topic may be Parkinson's, much of this show could really apply to many other illnesses as well.

By the way, Dave Iverson is the man who interviewed Michael J. Fox in the link above. Mr. Iverson also did the documentary below. He, his father, and his brother all have Parkinson's Disease.

VIDEO LINK 2:

Frontline 6-part PBS documentary called "MY FATHER, MY BROTHER, AND ME"

In the full documentary, watch for Michael J. Fox's comments about 2 minutes into the 6th and final "chapter" of the online version of this show.

I really found this documentary very interesting!

Once you choose hope, anything is possible.
--Christopher Reeve


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

2/09/2009

Amanda From The 'Dream Of Living' Blog Gave Me An Award...

Amanda of Dream Of Living kindly gave me this award:



Here is what this award is all about...

"This blog invests and believes in PROXIMITY - nearness in space, time and relationships. Blogging establishes friendly neighborhoods linked around the world".

I had the pleasure of "meeting" Amanda relatively recently. Amanda is an endometriosis patient who lives in Europe. She has written a blog for several years but just recently began blogging about her endometriosis. Her endo blog posts are candid, emotional, raw, and wonderfully detailed. She beautifully describes the challenges endo poses in her life and how she copes with them.

I am honored that Amanda has given me this award. I think the notion of proximity in the context of friendly blogging neighborhoods around the world is a perfect match for the link between me (in the U.S.) and Amanda (in Europe). I feel very connected to her by endometriosis and our similar experiences with it.

Amanda writes beautifully and I'm so happy that we found each other on this vast space called the Internet.

Amanda has left some thoughtful comments on my blog and her endo blog posts really delve into the emotional toll endo can take on a patient and her loved ones.

Please check out Amanda's blog for some great posts on endometriosis!

Dream Of Living

Thank you, Amanda!

Now, I have broken the rules and will not be passing this award along to the number of bloggers I'm supposed to.

Not only am I too tired to "follow the rules" but I don't want to pass this award along to someone else who will feel overwhelmed at having to select X number of other blogs for this award.

I am going to pass this along to two of my Canadian endometriosis blogging buddies.

If they are too tired to post the award or pass it along, that's OK! I'm going to list their blogs here because they are worth your time to check out:

Squidgeaboo's Endo Blog

Endometriosis: Facing The Battle Head-On

If they choose not to post the award/pass it along (because I know they both have full plates right now!!!), that's OK. This post will still, hopefully, send some readers their way.

My purpose for selecting these two particular blogs is simply because I love these blogs, I love these bloggers, and I'd love to send some traffic to their well-written blogs!

So, please check out the blogs of Amanda, Melissa, and Squidgeaboo. They all have important things to say about endometriosis and living with chronic illness.

Take a peek and see why I like them so much! :)

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

2/08/2009

THANK YOU For The Blog Giveaway Prizes From 'Twin Peas', 'The Girl Revolution', and 'Shaping Youth'!!

Gratitude Moment:

Recently, I was a winner of multiple blog giveaways. I'm behind schedule on publicly thanking people for the wonderful prizes I won.

The first blog giveaway contest I ever entered... I won! It was Kelly Damron's blog: Twin Peas Blog and Podcast. I had never entered a blog giveaway contest before and this particular contest was entered simply by posting a comment on Kelly's blog post about the contest. I was randomly picked as the winner of a book called Hope for the Flowers by Trina Paulus.



If it weren't for Kelly, I never would have known about this wonderful book. It's a beautiful book about hope, strength, and love.



Kelly Damron


I liked the book so much that I gave my friend Alicia a copy. She posted it on her blog and many of her readers commented that they were already familiar with this great book. Apparently it's a classic but it's thanks to Kelly that I discovered it!

Thank you, Kelly!

Tracee Sioux recently launched The Girl Revolution (formerly called Empowering Girls: So Sioux Me). This was a huge launch featuring a blog giveaway contest with 25 different prizes!

I had just won the book from Kelly when I entered Tracee's contests.



Tracee Sioux


The selection of winners was done randomly using a random.org program. I had diligently followed the instructions for entering all 25 contests. I blogged, tweeted, posted on Facebook, posted comments, etc. Since a large number of other people did the same, I didn't get my hopes up about winning anything.

Out of the 25 contest prizes, I won 4 of them!

Here's what I won!

"Precious Girls Club"

"Choosing Me Before We" book by Christine Arylo

"ProBlogger" book by Darren Rowse & Chris Garrett

"Packaging Girlhood" book by Sharon Lamb, Ed.D. and Lyn Mikel Brown, Ed.D.



Amy Jussel


This last prize was provided for Tracee's blog giveaway by Amy Jussel of Shaping Youth.

Amy shipped my prize directly to me and I just got it on Saturday! It's fun to open my mailbox and see something other than medical bills. :)

Seriously, this book looks amazing and I'm looking forward to reading it!

Since Tracee knew I already had the ProBlogger book, she kindly offered for me to select a friend to give it to so she can ship it directly to that person and save me shipping. (Thanks, Tracee)!

I asked my blogger friend Jannie Funster if she'd be interested in the ProBlogger book by Darren Rowse & Chris Garrett. She said yes. :) So Tracee is going to ship that prize directly to her.



Jannie Funster


Finally, I wanted to give a shout-out to Cassie Germsheid, of Mamas On The Web, who helped Tracee with her extensive blog re-design. Tracee's new site looks amazing and I know Cassie worked hard on it. (Pssst... Cassie is going to help me re-design my blog). :)



Cassie Germsheid - Always Busy!

Thank you to everyone for your patience. I have been dying to post this for awhile now!

I'm very grateful to these hard-working women. Every single one of them impresses me with their strength, passion, and professional work ethic.

I'm happy to have gotten to know each of these women and I'm thankful to have won these great prizes.

Thank you!

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

I'm Still Offline To Rest But I Wanted To Send You A Great Link To A Fellow Blogger Who Wrote About The Exploitation Of Endometriosis Patients

As I mentioned in my previous blog post, Saturday, January 31, 2009 "Jeanne's Endo Blog" Is Offline Indefinitely (Starting Now)..., I need to slow down on blogging for awhile and get some rest!!

For now, I wanted to post a brief update about my health situation.

While I'm online, I also wanted to give readers a link to a great blog post written by Melissa Ralston regarding the topic of exploitation of patients. This is a hot topic because there are so very many scammers going after chronically ill patients and health bloggers. Melissa's post talks about this troubling situation regarding endometriosis scammers.

Sadly, while I have been trying to rest up, the scammers are as busy as ever. One of them posted anonymously to my blog with comments that I have no intention of publishing!! These comments mentioned fibromyalgia and endometriosis.

All chronically ill patients and all health bloggers are potentially vulnerable to scammers who exploit patients and bloggers.

The comments posted to my last blog post were regarding a "treatment center" that I will not name. I'll just call it "treatment center" in place of its name because I'm not going to promote it by even typing its name on my blog. In other words, I won't even type the name of it to complain about it.

This commenter started by telling me (the capital letters below were theirs):

"BE SURE TO RESEARCH AND GET THE FACTS STRAIGHT"

The tone of the comment posted to my blog was essentially that I need to do my research and not be one of the ones who is stealing people's hope from them by steering them away from this "treatment center" that they were raving about.

So the implication here is that if I don't publish their anonymous comment singing the praises of this "treatment center", then I'm going to join the rest of the people who they claim are stealing people's hope by discouraging them from seeking treatment at this "center" making such outrageous claims.

I would like to go on record as saying that I don't advise people on where to get treatment for any of their illnesses. I have never advised patients where they should or shouldn't go for treatment for any conditions.

This commenter's remarks were written as if I need to "do my research" and proceed to publish their comment raving about this "treatment center"... or risk being responsible for people losing hope and committing suicide! (Read on to see their troubling comment about suicide).

Again, these inflammatory comments were posted in reply to my previous blog post about being very sick!

Here is another snippet from the anonymous commenter to me:

"If you are too sick or too weak, (I hope and wish you well) Perhaps you can ask a close friend or family to help you with this."
-- Anonymous blog commenter


Did they read my last blog post that said my husband was helping me out by moderating comments while I was sick and think that maybe he'd just blindly post their comment? This commenter went on to advise me to follow his/her directions and check out this "center". Read what he/she said:

The doctor's at the ["center"] are saving lives. Don't let the others steal your hope. Many are truly well and this could be you too.

It saddens and angers me that there are companies and individuals out there exploiting patients and promising unrealistic treatment results for chronic illnesses such as fibromyalgia and endometriosis.

The person or center that posted to my blog on February 6th had the gall to try to turn people who have spoken out against these scammers into the "bad guys" by suggesting that these brave people (who have spoken out against those who exploit patients) are responsible for patients committing suicide!

Here are 2 more phrases from the anonymous comment I will not be posting:

The comment posted anonymously to my blog on February 6 that was in support of a "treatment center" went on to claim:

"people come in wheelchairs and leave walking and dancing"

This same anonymous comment stated:

"lies are being spread and people are committing suicide because of lost hope"

This last portion of the anonymous comment appalled me. This commenter basically insinuates that anyone who speaks out against this "center" is somehow responsible for people committing suicide! (To be clear... the "people are committing suicide" comment does not refer to any specfic people. This statement is just haphazardly thrown out there by this commenter to my blog).

I want to be clear that I know of no one committing suicide or thinking of committing suicide. This inflammatory remark by the commenter is part of the twisted effort to promote this "treatment center".

I've seen a lot of scams regarding chronic illnesses since I began blogging last June but this is especially upsetting. This anonymous commenter is using the word suicide in an effort to get people to seek treatment at this "center"??!!?? This is totally outrageous!

If you are confused, trust me, you would still be confused if you read the entire comment posted to my blog.

For those who did not have the benefit of reading the entire comment, let me just put things in context and say that I am aware that many patients have reported this "treatment center" to authorities and that the Attorney General of the state which hosts this "center" has apparently done some investigation into this place of business. I do not know the current status of the "center" legally. I just know that many patients have complained about it.

Having read the entire anonymous comment posted to my blog and having concluded that there is no way I will post it to my blog... even to rip it apart, let me just say that this commenter would have me and my readers believe that there are people who are keeping patients from obtaining treatment at this "center" and that these patients' lives are being put at risk (of suicide) by those who are speaking out against the center!!

I know this is confusing because I'm quoting snippets of the anonymous comment. I apologize for the confusion but there is no way I would feel comfortable publishing the comment. So bear with me.

The bottom line is that I do not know how some people sleep at night!

It is bad enough when scammers try to fleece people out of their money by scamming them with "treatments" that are talked about as virtual cures. That is shameful enough! But to go around posting comments on people's blogs about suicides? It is beyond the pale. For someone to try to use my blog to get people to seek treatment at this "center" by implying that suicides are happening due to people being stopped from seeking treatment at this "center" is just mind-boggling to me.

The bottom line is that this very inappropriate comment was posted to my blog, I will not publish it, and I am sharing this story with all of you so that you can be on the lookout. If any person or "treatment center" approaches you or your blog with wild claims about leaving your wheelchair to go dancing, please be aware that some people will say anything to make money.

I can't tell you how upset I was about this comment to my blog. In my experience, anytime a scammer like this approaches me, he/she usually approaches my fellow bloggers as well. So please be aware that there are some very unscrupulous people out there!

MY UPDATE:

I am not sure when I'll be able to get back into the swing of things but I am still very exhausted and I still need more time. I'm still not going to be communicating via the many methods I usually do.

As some of you are already aware, last Friday night I had an adverse (allergic) reaction to a medication that I was taking and the on call doctor last weekend told me to go to the emergency room. The drug reaction was potentially fatal and last weekend was scary... but I made it until Monday morning when I talked to my regular doctor and we figured out what I should take in place of the drug I reacted to. Thank goodness for Benedryl! My doctor called in a prescription to replace the one I had discontinued and my body is getting acclimated to that.

I have been overdoing things, to say the least, for some time now and this wakeup call has forced me to step back, slow down, and recognize the importance of rest. Too many insomnia-induced all-nighters culminated in a very unpleasant weekend last weekend. While a drug allergy is what finally forced me to slow down, my body is unhappy with me for other reasons. I have not been getting enough rest and my body told me so this past few days in ways that could not be ignored.

For example, my body let me know it was ticked when I slept until 2:00 pm one day this week. (The only reason I even woke up then was that I had asked my husband to call at 2:00 to make sure I had woken up. As it turns out, I had not)!

In any event, it's going to be a bit before I'm back to blogging very much. I still have comments from a couple of weeks ago that are not yet moderated or replied to. The only comments that have been posted were to my last post before this one.

MELISSA'S ARTICLE:

I would like to ask readers to check out a very important article on Melissa Ralston's blog... Endometriosis: Facing the Battle Head-On. The article is called "The Exploitation of Illness". It's a topic near & dear to my heart because I have seen many heartbreaking examples of patients being exploited by fake doctors, people promising "false cures", and any number of other scammers who try to make money off of patients (in this case endometriosis patients but all chronically ill patients are vulnerable to these attacks).

In fact, I was troubled to find an upsetting blog comment dated 2/6 from one of these "exploiters" posted right to my previous blog post about me being sick! (There are times I just adore being able to click on the reject button). Apparently me being sick enough to drop blogging for a bit made me look vulnerable/an easier target for them. Incredible!

I had already planned on blogging this post directing readers to Melissa's article (above) before I received email today from an exploiter who posted comments to my blog that really disturbed me. While I was hoping for a bit more resting time before writing this post, I felt compelled to get this posted in light of the fact that a scammer had the gall to post a scam comment in response to my last post. Since I was planning to direct readers to Melissa's article anyway and since I do not have the energy to write my own detailed post about the many scammers I have encountered (be they endo scammers, fibromyalgia scammers, or scammers about some other chronic illness), I decided the best way to respond to the ludicrous comment that I rejected in response to my last post would be to direct readers here to Melissa's great post which references a great article by Hans Evers of the World Endometriosis Society.

Again, endometriosis is just one chronic illness that can make patients vulnerable to scam artists. Anyone with a chronic illness should stay skeptical, ask questions, and generally be on guard against scammers who prey on the sick.

Finally, here is a quote from within one of the sources for the article Melissa Ralston included in her blog post. I will close with this quote because it highlights the point I am trying to make... and to give credit where credit is due to Hans Evers, who took the time and energy to write about the topic of people who prey on endometriosis patients. Whether it's endo, fibro, or some other chronic illness... it is important for patients to be educated about the risks out there for people preying on them because they are chronically ill which can make them "easy prey".

"Women with endometriosis belong to a very vulnerable group, they should not be exploited".

Professor Hans Evers, World Endometriosis Society President


I would like to thank everyone who has left me words of encouragement and comfort this past week. I appreciate your support more than you know. Please keep being patient with me because I'm still on the road to recovery and need to take my time getting back into the swing of things.

Thank you to everyone for your patience! I am going to try to catch up the best I can but it's going to take some time. I have been pushing things too hard and I really need to pace myself better. My body has been screaming at me this week. I'm listening to its message. So I'll do my best to catch up without making myself sicker in the process.

P.S. I recently won several blog giveaway prizes and have not yet posted my thanks for them. I'm behind on everything. Stay tuned in a future post to hear about the great prizes that I won. I apologize for getting behind on posting these. Also, I'm sorry to Amanda for not yet posting the award she kindly gave me awhile back. I am really behind on everything but I haven't forgotten!

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

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