'Chronic Healing' located at: http://chronichealing.com/

Three Days To New Blog!

2009-05-29T09:16:00.037-04:00

My new blog launches June 1st (which is also my 1 year blogoversary)!

Three more days until the move to this blog's new home!

I have been spreading the word in various places: twitter, my YouTube channel, MyBlogLog, Facebook, etc.

I could use all the help I can get spreading the word about my blog's move! So, please consider retweeting my twitter message or sharing my Facebook links. Every little bit helps. I would really appreciate any help I can get spreading the word about this move happening June 1st. Thank you!

If you don't have a gravatar set up, please see this site:

Gravatar.com

By setting up a gravatar, your picture will appear on my new blog (i.e. when you comment on the new blog)... rather than a default image appearing to represent you). I'm still getting used to my new blog but I believe this will cause you to link back to your own site too (much the same as your Google profile links to your blog).

There will be a learning curve for me with this new blog; I'll need your patience while I get used to my new home.

Don't forget... there will be blog giveaways in the early days of the blog. So stay tuned!

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

Four Days To Launch!

2009-05-28T23:10:00.013-04:00

My new blog is scheduled to launch on June 1st.

June 1st is the one year anniversary of this blog!

Please stay tuned for more updates.

I have been spreading the word in various places: twitter, Facebook, my YouTube channel, MyBlogLog, etc. I could use all the help I can get spreading the word about my blog's move! So, please consider retweeting my twitter message or sharing my Facebook links. Every little bit helps. I would really appreciate any help I can get spreading the word about this move. Thank you!

If you don't have a gravatar set up, please see this site:

Gravatar.com

By setting up a gravatar, your picture will appear on my new blog (i.e. when you comment on the new blog/rather than a default image appearing to represent you). I'm still getting used to my new blog but I believe this will cause you to link back to your own site too (much the same as your Google profile links to your blog).

There will be a learning curve for me with this new blog so I'll need your patience as I get acclimated.

Cross your fingers that everything falls into place for June 1st.

Don't forget... there will be blog giveaways in the early days of the blog. So stay tuned!

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

Five Days To Launch!

2009-05-27T12:59:00.014-04:00

If all goes well, my new blog will launch on June 1st. June 1st happens to be the one year anniversary of this blog!

Right now, June 1st is the target date. It is going to be tight but that date is the goal.

So please stay tuned for more information.

If you don't have a gravatar set up, please see this site:

Gravatar.com

By setting up a gravatar, your picture will appear when you comment on the new blog (rather than a default image appearing to represent you). I'm still getting used to my new blog but I believe this will cause you to link back to your own blog too (much the same as your Google profile links to your blog).

Yes, there will be a learning curve for me with this new blog so I'll need your patience as I get acclimated.

Cross your fingers for June 1st as the launch date. Don't forget... there will be blog giveaways in the early days of the blog. So stay tuned!

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

Housekeeping For Move

2009-05-21T05:51:00.009-04:00

In preparation for the upcoming move to my new blog, I am doing some housekeeping. Therefore, you may notice some older posts getting re-published as I "clean out the cobwebs". Primarily those who will notice this are my subscribers, as you'll receive notifications on re-posted articles. I apologize for any inconvenience and appreciate your patience as we get closer to the new blog. Stay tuned... there will be blog giveaways after the new blog launches!

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

Fun Only

2009-05-19T13:36:00.091-04:00

There will be some minimal talk of children in this post. If you are not in a place now to care to read that, I just wanted to mention it up front.

There will be no talk of illness or pain in this post. As regular readers know, I periodically take a break from all that to talk about art, music, etc. This post is simply for fun. When I started blogging last year on June 1st, the tulips were already gone.

This year, however, I have pictures from my garden to share. My husband and daughter planted them for me. Tulips are my favorite flower. So don't be surprised if tulip pictures pop up in future posts because I took quite a few pictures yesterday when I tiptoed through the tulips.

It was a nice, sunny day so I took the camera out when I got the mail. Guess what was in the mail? Yes, my Jannie Funster CD has landed. Check it out:

Do you like how she got a P.O. Box, like I suggested, for sending out her CDs to what is sure to be oodles of fans? Notice my package came from "La Funstress"? Jannie is too much.

So, after checking out the pretty tulips, I went inside and opened up my package. I found a note from Jannie with some business cards.

Here's a sneak peek at the liner notes. Check it out. Jannie autographed it for me.

I am so excited for Jannie that her CD is now out. She has worked hard on this. Jannie has been a wonderful blogging buddy ever since she found my blog. I'm going to break my "no illness talk" for just a second to say that Jannie has endometriosis and struggled with infertility for many years. She found my blog because I write about endometriosis.

Anyway, Jannie's CD is great! Not only is she a great musician but she is funny as heck. She really is a Funster if there ever was one! I have already warned her to buy some wigs and dark glasses to avert the paparazzi. She really has an amazing voice. Her daughter helped her with the CD-making process. It was a real treat getting that CD in the mail yesterday.

If you'd like to hear samples of her songs, here's a link from her blog with some:
MP3 samples

If you too want to order Jannie's CD, just go here: Jannie Funster's blog.

My daughter had heard the MP3 samples from Jannie's blog before it arrived in the mail and she really liked the songs. So she was very excited to find the envelope from La Funstress in the mailbox. (She translated "La Funstress" to Jannie Funster right away... She knew it was en route).

Anyway, my daughter listens to music every night while she falls asleep. I told Jannie yesterday that her CD got the ultimate compliment. My daughter (who normally will not part with the High School Musical CD that is sure to break one of these days from wear) asked if she could listen to Jannie's CD to get to sleep last night. How cool is that??

Related link:

Jannie Funster CD Release Today

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

MCS Awareness!

2009-05-17T01:04:00.024-04:00

I just discovered that May is awareness month for yet another illness I care deeply about: Multiple Chemical Sensitivity.

For a fantastic source of info on MCS, I always refer readers to Susie Collins' blog, The Canary Report.

For a post specifically about awareness month for MCS, see: MCS Awareness Month, bad air, and chemical exposures.

MCS is a big part of my life. Walking down the soap/detergent aisles is out of the question. Being anywhere near cigarette smoke is not possible. Reacting to people's perfumes and cologne is common. Heaven forbid I need to use a public rest room these days since it's almost a guaranteed exposure to "air fresheners". (They typically contain toxins that cause cancer, contain neurotoxins, and contain endocrine disruptors... so they are not healthy for anyone).

I have a long history of fainting due to exposures that trigger my MCS to kick into overdrive.

I have blogged previously about MCS (just use my search engine to find past MCS posts). Susie's blog mentioned above, though, is my go-to source for MCS information.

Susie is a wealth of information on MCS! I highly recommend checking out her blog to learn more about this serious illness that's affecting more and more people.

MCS awareness is much-needed. Please help me in supporting the MCS awareness activities by following Susie on twitter:

Her twitter address is: @TheCanaryReport
The #MCS hashtags pertain to Multiple Chemical Sensitivity

Please help us spread the word about MCS, a very poorly understood condition that can be debilitating and disabling. I would appreciate as much help as possible with supporting Susie's efforts re: MCS Awareness.

There are so many awareness campaigns happening this month that it's very challenging for me to keep up. I would appreciate any help at all. Supporting the MCS cause on twitter and checking out Susie's outstanding blog would be enormously helpful.

Thank you!

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

Fibromyalgia Awareness Day And M.E./C.F.S. Awareness Day

2009-05-12T10:05:00.054-04:00

I had grand plans for how to do justice to the topic of fibromyalgia for Fibromyalgia Awareness Day. Unfortunately, I’m having a severe fibromyalgia flare and I don’t have the energy to write it. Ironic, I know. The last couple of days have been challenging fibromyalgia-wise due to sudden changes in temperature. Last week it reached 86 degrees Fahrenheit one day. This morning it was 40 degrees Fahrenheit when I got up. That kind of temperature shifting causes my fibromyalgia to flare badly. I have talked with other bloggers in the last few days who have fibro and are experiencing flares like this too.

I recommend following @fightingfatigue on twitter. Her blog is excellent. Check it out: Fighting Fatigue. Sandy has been supportive of the endometriosis cause and has been retweeting our messages on twitter. Let's support her likewise. I wish I could write more but I am totally exhausted today. Every muscle hurts. It feels like every molecule and cell in my body are talking to me... and I don't like what they have to say. So I am not going to be able to write an elaborate blog post today. It is a major effort to be at the computer at all right now.

Today is also M.E./C.F.S. Awareness Day. I wanted to mention it too. I have recently met some wonderful people on twitter who are working for the M.E./C.F.S. cause. They have also been supportive of the endometriosis cause. We have been retweeting each other's messages regarding M.E./C.F.S. and endometriosis.

Please follow @Killandra @perpetualspiral @redtoffee @runefox on twitter regarding M.E./C.F.S. (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are two names for the same condition. There is not strictly one term used worldwide).

@Killandra has a contest going on. Check it out!

Blue Ribbon Campaign for M.E./C.F.S.

I will post something at a later date when my symptoms aren't so active but I wanted to be sure to get this posted today for awareness day. Feel free too to browse through prior posts (more so on fibromyalgia than on M.E./C.F.S. but you should be able to find posts on both).

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

Jannie Funster CD Release Today

2009-05-11T09:23:00.035-04:00

This blog post is long overdue in that it's a lighter post. Those who have read this blog for awhile know that I occasionally post art and music to lighten things up.

Today's post is a special one because my friend Jannie Funster has a CD releasing today!

I first met Jannie when she left a comment on my blog. Jannie, you see, has endometriosis and she went through a prolonged battle with infertility. While her blog's readers may know her for her humor and wit (both of which she has plenty!!), I know that things have not always been so rosy for her. Life as the Funster hasn't always been so fun.

So please join me in supporting Jannie Funster by checking out her new CD at the blog link just listed. There you will find samples of the songs on her new CD.

Here is a sample tweet that I sent out to help promote Jannie's music:

Want new music? Follow @janniefunster whose music CD comes out on May 11th!! Hear song samples on her blog! :) http://bit.ly/JmxXV

Please retweet!

I was blown away by the clarity of her voice. It can't really be compared to any other voice but as we listened to the song samples this weekend, Joni Mitchell popped to mind for me and my husband thought of Celtic singers (i.e. from Riverdance or Celtic Woman).

Poet, singer, songwriter, blogger who makes people laugh... Jannie Funster is one special woman.

On this CD, Jannie shows her Funster side and if you listen to the song samples you'll hear how silly she can be. One song in particular is destined to become a hit in this house. We can already tell from the song snippet. I can't wait for my CD to arrive in the mail. Yes, I have already placed my order.

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

Mother's Day For Infertile Patients

2009-05-07T22:38:00.080-04:00

This infertility post is a tribute of sorts to my friend Alicia. My admiration for her is immense for so many reasons.

The week before last I had the pleasure of meeting up with Alicia for lunch! As some of you are aware, Alicia (aka Yaya) and I are real life friends in addition to being blogging friends. Alicia has struggled with infertility and miscarriages; she and her husband are immersed in the foster-to-adopt process at this time.

As Alicia never leaves home without her camera, she took the picture above of us as we were saying our goodbyes at the restaurant. It was so nice to see her in person. Alicia is the type of person who literally lights up a room.

Moving onto the topic of this post, infertility. We are heading into what may arguably be the most challenging weekend of the year for infertile women. Father's Day will be shortly behind it, of course (and it too can be a very stressful time).

Recently Alicia posted an excellent article on her blog regarding Mother's and Father's Day. She posted information from RESOLVE: The National Infertility Association.

I am going to post that same RESOLVE letter here but would like to first link to the post that brought it to my attention from Alicia's blog: Yaya Stuff.

I would like to print the RESOLVE letter here as well but first I wanted to include a picture of Alicia and her husband, Josh, who have been through such an emotional rollercoaster with infertility and miscarriages.

Sometimes I think it can be too easy to read a book, blog, or magazine about infertility and not really begin to comprehend it without having experienced it firsthand. I think it's important for people to see real faces of real people who struggle with this real condition. Josh and Alicia have been through great adversity. I admire their strength, courage, and determination in navigating this complex and grueling process!

At this point, I'll post the RESOLVE letter that Alicia shared with her readers:

As Alicia put it:

"So while the following letter written by RESOLVE is intended for the clergy, it is actually helpful for people in all realms of life to realize what we endure on Mother's and Father's Day".

Here is RESOLVE's letter---

Dear Member of the Clergy,

As you prepare your Mother's Day and Father's Day religious messages this year, please consider that 1 in 8 couples of childbearing age are struggling with infertility. These particular holidays are two of the most painful days for those struggling to have children.

Although this condition is rarely physically life threatening, it can be devastating to a person's sense of hope. Couples often endure monthly cycles of emotional roller coaster rides, ranging from optimism to despair and depression. Infertility sometimes lasts for years and people often go through this experience in isolation, as their desire for a larger family remains unfulfilled.

Many religious and social events revolve around children, and couples without them may feel uncomfortable or left out of activities altogether. Because the topic of infertility involves reproduction, it is an extremely personal problem that couples face. For this reason, it is often a very difficult topic to discuss, even with a trusted rabbi, priest or pastor.

As you prepare for the upcoming holidays, please remember the couples in your congregation that have infertility. Infertility is the inability to conceive a child after one year of unprotected sexual intercourse. Infertility is also the inability to carry a pregnancy to term, so persons who have had a miscarriage or who have lost a child by stillbirth struggle with this condition too.

We ask that you keep these points in mind, particularly during worship services, and that you remember couples with infertility in your prayers as you honor all the mothers and fathers in your congregation.

If you would like more information about infertility, please visit the RESOLVE website at www.resolve.org.

Thank you, in advance for your consideration in this matter,

Sincerely,
Your name

For more information from RESOLVE, check out this link:

RESOLVE's Infertility 101

Finally, I'd like to end by thanking my friend Alicia for... being Alicia.

She is kind, caring, incredibly thoughtful, sweet, smart, funny and I am privileged to call her my friend.

I just had to include this picture of Alicia's new haircut because it looked so cute on her blog that I had to post it here as well.

In true Alicia fashion (and for no particular reason at all), Alicia showed up for our lunch date with something for me for no particular reason. This is just classic Alicia... always so thoughtful! She gave me a "wish token".

I am including two pictures here to close out this post. One is a picture of the front of the package it came in and the other is a picture of the back of the token.

This is quintessential Alicia... sharing messages of hope with others. From her unbelievably popular blog to her social network site (the Mommy Wannabe Club), to all of the people she supports through infertility and miscarriage "offline", to her support of fundraisers for organizations such as Parenthood For Me, Alicia helps countless people. As she and Josh go through the adoption process, she is expanding the number of people she is able to help through her blog.

Readers, if you are infertile and apprehensive about this upcoming weekend... try to seek out support from people you love and trust to get through this challenging time of year.

For other readers who are fortunate enough not to struggle with infertility, please be aware that this weekend will be painful and sad for many. Do what you can to support someone you know through this difficult time.

Finally, I would like to thank my friend Alicia for enlightening so many people. Thank goodness Alicia and I met through our local endometriosis support group. Quite honestly, it's hard to remember "life before Alicia". She's that special!

My thoughts will be with Alicia, Josh, and other infertile couples this weekend.

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

My Perspective On Claims Made By Endometriosis Foundation Of America

2009-04-20T09:13:00.246-04:00

I will start this post by sharing a paragraph straight from the website of the Endometriosis Foundation of America because it sets the stage for me to express my perspective about the claims that are being made by the EFA:

Recently, I became aware that Padma Lakshmi (host of Top Chef) and Tamer Seckin, MD have co-founded the Endometriosis Foundation of America (EFA).

Ms. Lakshmi has been interviewed recently and has repeatedly asserted that she is cured of her endometriosis. Apparently, based on these interviews, her EFA Co-Founder (Dr. Seckin) is the one who “cured” her of endometriosis.

There is no cure for endometriosis!

That's right. Despite claims made to the contrary, there is no cure for endometriosis. I am sure I can safely speak for endometriosis patients everywhere when I say that such a cure is needed and wanted badly. I would love nothing more than for these claims to be valid. My life and the lives of so many of my friends would improve dramatically. Who wouldn't want to believe that a cure has been found for endometriosis? The fact of the matter is that there is no cure for endometriosis at this time. We look forward with hope to the day when there will be a cure.

According to the Endometriosis Research Center there is no cure for endometriosis:

Here is what their site says:

Is endometriosis curable? There is currently no absolute cure for endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it.

According to the Endometriosis Association there is no cure for endometriosis:

Here is what their site says:

Although there is no cure for endometriosis, a variety of treatment options exist. Goals may include: relieving/reducing pain symptoms, shrinking or slowing endometrial growths, preserving or restoring fertility, and preventing/delaying recurrence of the disease.

I’ve had endometriosis for 27 years. In that time I’ve heard various myths about things that supposedly cure endometriosis. Here are just a few of the issues I've seen confusion over:

Fact: Hysterectomy is not a cure for endometriosis.

Fact: Those nutritional supplements you see advertised on Google ads (the ones that claim their products cure endometriosis) are not a cure.

Fact: Prescription medications do not cure endometriosis.

Fact: Laparoscopic surgery (whether laser or excision) does not cure endometriosis.

Regarding that last item, the EFA is now asserting on its website that “laparoscopic excision surgery” can cure endometriosis. Excuse me? The EFA is proposing it has found a cure for endo?

Let me repeat this paragraph containing a direct quote from the Endometriosis Foundation of America website. I don't list this to be repetitive but to emphasize what the EFA is claiming:

Endometriosis affects an estimated 89 million women and girls worldwide. In all seriousness, if there were a cure for endometriosis would we be learning about it from the website of a new endometriosis organization and via articles about Padma Lakshmi in gossip magazines?

This would be a massive breakthrough for the medical community. It would be the solution to a problem that has mystified numerous doctors, medical researchers and patients for many, many years.

If there were a cure for endometriosis available right now, wouldn’t it be more likely announced in peer-reviewed articles in medical journals, for example? Wouldn’t endometriosis finally be a top story on the evening news... because a cure had been found for this serious, life-altering illness?

Trust me. I would love nothing more than to believe that there is now a cure available for endometriosis. The reality is that saying something is true doesn’t make it true. The reality is that I have heard enough false cures and myths over the years to know the importance of skepticism, researching things myself, and asking questions.

The EFA is hosting a "Blossom Ball" tonight in New York City. There will be various celebrities there. One can only assume we’ll likely be hearing about this in the mass media (especially given the fact that there have already been stories on national online news/gossip sites). The EFA has a public relations firm handling media matters. So I would expect we’ll be hearing more about this event.

Various celebrities are associated with this event. One person well worth noting when discussing the EFA is Julianne Hough. She is on the EFA's Honorary Committee. For those of you who are not familiar with the significance of Julianne Hough being affiliated with EFA, let me explain.

Last season on Dancing with the Stars, Julianne Hough announced on the show, to tens of millions of viewers, that she has endometriosis and would be undergoing surgery (laparoscopy) the next day. She had not had any previous laparoscopies. So she announced that she had endometriosis BEFORE she was diagnosed by laparoscopy. Endometriosis can only be diagnosed by laparoscopy. That is the definitive method for diagnosis.

While she did go on to have the surgery and her endometriosis was confirmed by laparoscopy, her timing of announcing her endometriosis BEFORE a proper diagnosis caused confusion for endometriosis patients and the public alike. (To compound matters, her Dancing with the Stars co-star Lacey Schwimmer announced within days that she too has endometriosis. She indicated to the press that she didn't require surgery like Julianne because they "caught it early").

During the week that Julianne Hough and Lacey Schwimmer announced their endometriosis diagnoses, my blog had a huge influx of new readers. My traffic meter was filled with searches on Julianne Hough and Lacey Schwimmer. It was also filled with search phrases such as, "How is endometriosis diagnosed?" "Do I need a laparoscopy to be diagnosed?", etc. It was very evident that the media circus surrounding the announcements and interviews regarding Ms. Hough's and Ms. Schwimmer's conditions directly connected to the unique searches that lit up my traffic meter.

I have blogged extensively about the commotion that occurred when Ms. Hough and Ms. Schwimmer announced their endometriosis diagnoses (see related links). The point is that Julianne Hough, however unintentionally it might have been, misinformed millions of people with the combination of her untimely announcement of having endometriosis combined with countless interviews she gave about her surgery and recovery.

EFA asserts on its site that it wishes to address misinformation. Yet they have Julianne Hough sitting on their Honorary Committee. I find this astonishing.

According to the EFA site, the cost for a table at tonight's ball is $6,500. This weekend, EFA updated its site with the following message, "Dinner reservations are near capacity at this time and online registration is now closed for this portion of the event". It sounds like this ball is a successful fundraiser just from the table fees alone.

I can't help but wonder where all of the money will go. What I mean is that I have read through the EFA mission statement and foundation goals for 2009. However, I'm stuck on the fact that part of the EFA site claims that endometriosis is curable and yet the site also says "working towards a permanent cure".

When I read the EFA mission statement, research is mentioned as being one of the EFA's focus areas. I guess I'm having trouble understanding why there would be a need to raise money for research if the condition is already cured.

Seriously, I perceive the compilation of comments on the EFA site as a mixed message.

It is unclear to me at this time exactly where the money from the ball will go and where the donated money (via their website's donation option) will be applied.

If Padma Lakshmi, Co-Founder of the EFA, is telling the press in numerous interviews that she is cured and that Dr. Tamer Seckin is her doctor and if the EFA's own website asserts "the EFA firmly believes that every stage of the disease is treatable and with the correct surgical techniques even curable", then apparently the money raised will not be used to pursue medical research for a cure for endometriosis, right? Why would they need to raise money for a cure if Dr. Seckin has already discovered one and his patient/Co-Founder, Padma Lakshmi, is already cured? Right? I’m being serious. Isn’t that logical?

Wait a moment.

The EFA website also states:

So...

1) Dr. Seckin treats Padma Lakshmi for endometriosis and she claims to the press that she's cured of it.

2) The EFA website of the organization founded by these two individuals says endometriosis is "curable" in one part of the site.

3) However, the EFA website also talks about "working to find a permanent cure" on the very same site.

I want to examine the phrase "permanent cure" for a moment because I think of a cure as being a black and white issue. Either a person is cured or not. Is there such a thing as a temporary cure? Is this a matter of semantics? I seriously don't understand the notion of "working to find a permanent cure" if (according to EFA) endometriosis is already "curable". Is EFA saying endometriosis will be "curable" someday? No. Padma Lakshmi, Co-Founder of EFA, says she already is cured.

EFA's comments from one part of their website to another are inconsistent.

I would like to close by making it very clear that I vigorously support public awareness of endometriosis. What is terribly unfortunate in this case is that the Endometriosis Foundation of America is disseminating misinformation (such as its claim that endometriosis is "curable").

Take one more look at the first sentence from this text off of the Endometriosis Foundation of America site:

Furthermore, disseminating such misinformation is contrary to the EFA’s own statements from its website regarding its intentions. As per the wording from the site above, the Endometriosis Foundation of America's statements indicate, in part, that it wishes to address "misinformation”. Instead, it is spreading it.

--------------

Related links:

Tuesday, October 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy ***(UPDATED)**

Thursday, October 30, 2008
Endometriosis Blog: Dancing With The Stars' Lacey Schwimmer Reports She Has Been Diagnosed With Endometriosis Too **(UPDATED)**

Friday, October 31, 2008 Endometriosis Blog: PLEASE Sign Petition To "Create Endometriosis Awareness & Understanding"!!! ***(Please read... THIS POST HAS BEEN UPDATED!!!!)***

Friday, November 14, 2008 Endometriosis Blog: "Endochick" Is Today's Guest Blogger On The Topic Of The Endometriosis Awareness Petition and Dancing With The Stars!

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

You Only Get One Body!

2009-04-15T00:05:00.011-04:00

You only get one body. I tell people this all the time when I'm worried about them overdoing or rushing recoveries. I'm trying to take my own advice...

I'm tired. After posting up to 5 times/day during March for Endometriosis Awareness Month, I am tired.

Then, I had the April 3rd colonoscopy (see previous post) and that wiped me out even more.

For whatever reason, I've lost 34 pounds without trying in about 4 months. I need to chill out. I need to listen to my body.

So, I haven't been posting much lately. I am trying to practice what I preach and implement the self-care I always talk about.

Some of you have seen me pop up on twitter, Facebook, etc. However, I have been way "quieter" than usual. Great progress has been made on the new blog (to replace this one) and I look forward to the launch (no date set just yet).

There will be blog giveaway prizes. So stay tuned!

I'm going to go conserve my energy now. There are many previous posts that may interest you if you're reading this.

You can:

1) Browse through randomly...
2) Look through my archives (see sidebar)...
3) Do a search of my blog using the search box (top left corner of blog, enter search term and click search... hitting enter won't work).

Happy reading!

P.S. We are still gathering names for the endometriosis awareness petition! See top of blog for link (too tired to make link)!

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

Colonoscopy Results (With Pictures)

2009-04-06T23:51:00.205-04:00

If you're not one for medical pictures, this isn't the post for you. So I'll warn you up front and keep the more graphic pictures for later in the post (in case they'll make you queasy). I, personally, love it when doctors volunteer to give me pictures after a procedure or surgery. I find them fascinating. I also watched the entire colonoscopy on the screen while he did it. I was wide awake the whole time. In this particular case, the sedative medications for the colonoscopy appeared to do NOTHING for me and I felt the entire procedure. This isn't how it's supposed to work. I'll write more about this later.

Let's start with the good news. The colonoscopy is over, nothing terrible was found, the prep was better than past preps, and I'm starting to feel human again.

What do I mean by "feeling human again"? Well, let's just say I did not bounce back from this colonoscopy the way I did from the previous three. I'll write more on this later too.

First, I should give some history to put things in context and explain why I've had so many colonoscopies.

In the early 1990s, I began having problems with chronic diarrhea. There are times that are better/worse than others but I have had chronic diarrhea ever since about 1993. Certain foods are triggers and I try my hardest to avoid them. Somewhere in the early 1990s, I got labeled with the irritable bowel syndrome. (Please excuse the "psychosomatic illness" section in this wikipedia link. I decided that the wikipedia section called "Medical conditions that accompany IBS" was interesting enough to ignore the other section. So please just ignore it like I am).

Anyway, I have had diarrhea issues since 1993. No doctor has been able to help me. The only exception to that is that my pelvic pain specialist (who treats my interstitial cystitis) identified some foods that aggravate interstitial cystitis. Also, my acupuncturist has given some helpful tips on dietary changes I can make that are better for my overall health. The bottom line, though, is that I've had diarrhea issues since 1993.

For me interstitial cystitis and irritable bowel syndrome can kick each other off.

Rather than assume that everyone reading this is already familiar with IC, I decided it would make sense to include a brief video here. Since so many patients have both IC and IBS, I think it makes sense to tie them all together. (Not to mention that fact that I have many of the co-existing conditions listed on the wikipedia link above: IC, IBS, endo, fibromyalgia...)

I have blogged previously about the connection between IBS symptoms and IC symptoms:

Sunday, March 15, 2009 "Jeanne's Endo Blog": Interstitial Cystitis & Hot Peppers

The list below is not intended to bore you but to put things in context. Also, who knows? Someone reading this might be going through similar experiences and might find this helpful. So here goes...

Colonoscopies/intestinal surgery:

1993 - "normal" per gastroenterologist
1996 - partial blockage due to malrotated colon/paraduondenal hernia
1996 - hemicolectomy (bowel resection)... about 1 foot of colon removed
2001 - investigation for cause of rectal bleeding... no explanation found
2009 - investigation for cause of rectal bleeding and rectal clots (Dr's take on it below...)

I had my first colonoscopy in 1993 and that gastroenterologist said it was "normal".

Three years later, the doctor treating my endometriosis referred me to a colorectal surgeon. So in 1996 I had my 2nd colonoscopy. This colonoscopy, like the first one, was primarily to investigate why I was having such terrible diarrhea. (Doctors had tried numerous medications and none of them helped a bit).

The colorectal surgeon performed the 2nd colonoscopy in 1996 discovered a partial blockage during the colonoscopy. He informed me that I had a malrotated colon/paraduodenal hernia. Essentially my colon was twisted out of the position it should have been in. He also compared the films from the 2 colonoscopies and told me that the malrotation had been there in 1993 too. So the first doctor missed it.

Less than a month later, I had a laparotomy. The gynecologist treating my endometriosis and the colorectal surgeon who needed to do a bowel resection worked as a team. I am greatly appreciative that they set this up as a "double surgery" with both doctors present because it consolidated things and prevented me from having an additional surgery.

During my 1996 laparotomy surgery, endometriosis was removed, a hemicolectomy was performed (with a foot of my colon removed), and the doctors just happened to find a carcinoid tumor on my appendix so they removed my appendix.

For information on hemicolectomy, see this link: wikipedia's colectomy entry (with info on hemicolectomy).

The diarrhea issues continued after the surgery.

Photo above courtesy of Joe Lanman on Flickr

Fast forward to the year 2000. I began having cyclical rectal bleeding. The rectal bleeding was the exact same every month. It would begin exactly 2 days before my period and would continue throughout my period. At this point I should note that I know of other endometriosis patients who have this exact same thing happen... rectal bleeding that starts precisely 2 days before the period and continues throughout.

So in 2000 I went to a gastroenterologist to get checked out for the cyclical rectal bleeding. Let's just say this doctor was spectacularly unhelpful. (I no longer lived in the city where I'd had my hemicolectomy so I was just going to the doctor I'd been referred to). Anyway, this doctor was useless.

So I called my pelvic pain specialist's office and asked them for a name. They gave me the name of another gastroenterologist. He is the one who did my 2001 colonoscopy and the one I had last week. I really like him.

Back in 2001 when I first saw him, he had done a colonoscopy to try to find a cause for the cyclical rectal bleeding. The colonoscopy was normal. My understanding is that gastroenterologists go into a colonoscopy looking for things like Crohn's, colitis, diverticulitis, cancer, and polyps. Since I had none of those, he couldn't really tell me why I was bleeding. Anyway the cyclical rectal bleeding finally stopped on its own after 18 months.

Fast forward to 2008. It was about 5 months ago (or so) that I started having the cyclical rectal bleeding again. Exactly as happened in 2000-2001, it starts 2 days before I get my period every single time.

Initially, I ignored it. I told myself it was endometriosis-related and I just needed to deal with it. Then in January, a new symptom kicked in: rectal blood clots. This scared me. It scared me enough to tell my primary care physician even though I did NOT want another colonoscopy and I KNEW she'd want me to see a gastroenterologist ASAP about getting a colonoscopy.

So I went in and saw the gastroenterologist for a consultation. He was VERY thorough! He asked lots of questions, he read through my paperwork (with my complicated medical history), he didn't blow off my theory that the bleeding was somehow endometriosis-related, etc. He spent an enormous amount of time with me. He listened to my history with bowel preps (everything from profuse vomiting to fainting to passing 4 kidney stones in 2 days immediately after a bowel prep (citrate of magnesia). We discussed the various options for bowel preps. He actually listened to my concerns about various preps I've done in the past. (I've had 3 colonoscopies that required a prep plus 3 of my surgeries did too. So this was my 7th bowel prep).

As I blogged about previously (see related link at the end of this post), the prep I did this time was blue Gatorade, polyethylene glycol (known as Miralax), and dulcolax tablets. He skipped the citrate of magnesia that he would normally have had me do because of my history with it.

I have to say this is the best prep, of all 7 that I have done. I never fainted. I made it until late at night before vomiting came into play. Basically, I was doing so amazingly well (relative to other preps) that I decided to take some (not all) of my many medications. (I normally take most of my medications at night). Well, shortly after I took my medicine, I learned that they were not going to stay down and I shouldn't have bothered. Taking my medicine was a big mistake because once I started vomiting, I was unable to stop until there was nothing left.

Once I finally stopped vomiting, I focused on getting to sleep. I had about 4 hours of sleep and then it was time to head for the hospital.

Long story short, they gave me the standard sedation medication for the colonoscopy but (for whatever reason) my body did not respond. I should emphasize that this is abnormal. I wouldn't want someone to fear a needed colonoscopy because of what happened in my case. I have a history of unusual responses to anesthesia. In any event, I felt everything and it hurt. Once they saw I was in pain, they gave me more but it didn't do anything.

I didn't feel a thing in my 1993 or 2001 colonoscopies. The 1996 colonoscopy was really bad. This one was bad. The medication used for this was not the same as what they used in my really bad 1996 colonoscopy. So I don't know why but the medication literally did nothing for me.

OK. The pictures are coming up. So here's the picture warning...

I was awake the whole time watching everything on the screen. Thankfully it went fairly quickly. (It wasn't as long as the 1996 one that also hurt). So they took me back to my little room and let my husband in. Then the doctor came to talk with me. He brought the pictures from my colonoscopy.

OK. What did he say, right? Well, he was very happy with how my colon looked in general. In other words, he liked how everything but what he called the "entry area" looked. Unsurprisingly, that area had bleeding. That begs the question... why?

Why the bleeding? That's a very good question. Now, bear in mind that if a gastroenterologist isn't looking at endometrial implants that have migrated through the intestinal wall, he/she isn't going to say "it's the endometriosis causing it" because he/she can't see it. At the same time, this doctor was NOT dismissing my theory that it's no coincidence that my rectal bleeding (and rectal blood clots) ALWAYS start precisely 2 days before my period. My theory is that it's possibly either hormonal or immunological but somehow connected to endometriosis even if it's not related to visible endometrial implants.

I have encountered several endometriosis patients over the years who have rectal bleeding symptoms cyclically like me. Whether doctors connect the two or not, I can't help but think this is not a coincidence.

In any event, my gastroenterologist came about as close as he could have to agreeing with my theory. (I wish I had a videotape of the conversation because I can't do it justice). My husband and I scratched notes right after he left of a phrase he used when we got to the point of discussing the bleeding. He indicated there may be "some sort of pressure phenomena" that is causing the bleeding. He absolutely understands this is cyclical. Think about it this way... Each month at period time, what happens? There's inflammation. That inflammation could explain the "pressure" that he is tying to the bleeding. Once he brought up the phrase "some sort of pressure phenomena", I was reminded that I also have pelvic congestion syndrome. (Yes, I have so many conditions that I forget some of them).

In any event, the colonoscopy itself (except for the unexpected pain part) went as I expected. I have believed all along that the cyclical nature of this bleeding is striking and that it was unlikely a colonoscopy would find one of those main things they look for.

I'm not a scientist or a doctor and I can't prove that my cyclical rectal bleeding and blood clots are endometriosis-related. All I know is that no doctor can ever give me any other explanation when this happens and it's ALWAYS cyclical. Whether it's directly endo-related or somehow indirectly endo-related, I don't know. Please note my blog's disclaimer. I am not giving medical advice. I am saying that in my heart of hearts I do NOT think the timing of my bleeding is an accident.

Anyway, on to the "aftermath". I was not expecting an aftermath. With my first 3 colonoscopies, I was fine afterwards. This time, I did not bounce back as quickly. The CO2 gas that is used during the colonoscopy gave me lots of trouble this time. My abdominal pain was INTENSE. Also the nausea was INTENSE. I have never had this happen before. It was not fun.

I've had CO2 gas pain post-laparoscopy that was really bad in my chest and shoulders. This CO2 gas was really bad in my whole abdominal area.

It was a little scary because I have never had this happen before and I couldn't help but worry about why this time was different. It was the CO2. I started feeling human again yesterday. I never anticipated this. I don't know if it's relevant or not but I wonder if the gas was more of a problem due to the fact that my ileocecal valve was removed at the time of hemicolectomy. I really have no idea if that had any bearing or not.

Anyway, I apologize for the length of this post but I really felt that putting this colonoscopy in context with the others and with the hemicolectomy was important. At some point, someone may read this post and be going through something similar. So I think details matter in this case. I also wanted to be sure to mention (as I did earlier) that many illnesses commonly co-exist... such as IC, IBS, endo, fibro...

I think it's so important to mention that because I know there are people out there who have multiple illnesses and don't know anyone else who does. I think it's very important for people to NOT feel alone and to get connected with others who understand what they are going through.

Related link:

"Jeanne's Endo Blog": My Gastroenterologist is a Genius!

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

"Jeanne's Endo Blog": My Guest Blog/Interview Featured On "Shaping Youth". Reaching Out To Girls & Parents To Increase Awareness Of Endometriosis!

2009-03-31T22:24:00.251-04:00

As many of you know, I feel very strongly that early diagnosis is extremely important with endometriosis. As we are all too aware, laparoscopy is the only definitive means for diagnosing endometriosis (discussed in the article below). The vast majority of the women I know who have endometriosis had it start when they were still girls.

I was honored that Amy Jussel of Shaping Youth featured me as a guest blogger today as we close out Endometriosis Awareness Month. Shaping Youth is an orgnanization with the motto "Using the power of media for positive change". Shaping Youth hosts a blog that is a forum about media and marketing's influence on kids.

The Shaping Youth organization is more than just a blog. It is a nonprofit, with no political, religious, or censorship agenda. As they put it "their only ‘cause’ is the emotional and physical well-being of children".

I am thrilled that Shaping Youth devoted so much space and attention to the subject of endometriosis and particularly the topic of endometriosis as it pertains to teens (and their parents), who may not understand what it is with which they are grappling.

Anything we can do do spread awareness and help girls get diagnosed properly earlier is a good thing. Let's hope that this article can help someone in Amy Jussel's target audience of teens and their parents. Wouldn't it be great if we could prevent some of the suffering many of us went through as teens?

This is a re-print of the Shaping Youth post, with Amy Jussel's permission:

Here is Amy Jussel's post... (The guest blog is written in interview format so she is talking below and I am answering her questions below)...

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Diagnosis Endometriosis: What to Know As Preteens Grow

Mar. 31, 2009 Today I was planning on posting part two in my series on the Focus on Youth Sex::Tech Conference resources featuring health education tools, widgets, sex ed primers and helpful digital data available to give teens and parents a comprehensive snapshot of ‘what’s out there’ in a useful form rather than the drama-rama ‘oopsie’ moments permeating the ‘preggers plotlines’ that dominate media ratings.

I’ll save that one for tomorrow, as I just realized that today marks the final day of Endometriosis Awareness Month (gee, I’m sure it’s in all of your calendars?)

All joking aside, Jeanne’s ENDO blog reveals this is NO laughing matter when it comes to the impact on teens and young women, since ‘the child-bearing years’ seem far too late to have a heads up summary on endometriosis

We have a stellar opportunity to learn from the grueling experiences of our guest interviewee firsthand.

Despite a veritable absence in media awareness and lack of coverage, I was amazed to hear the stats Jeanne sent my way from the Ohio State University Medical Center, calling endo “more common than AIDS, more common than cancer” with an estimated 89 million girls and women with endometriosis worldwide.

In fact, the more I think about it, the ISIS Sex::Tech Conference should have a ‘puberty primer’ of sorts, to raise awareness of this issue with an audience smack dab in their target market of high visibility within the youth, educator, and medical community!

I think I’ll send this post to the ISIS team and Director Deb Levine when I’m through, as it truly is a “missing link” in their conference offerings, even though PID (pelvic inflammatory disorder) and so many other reproductive issues were front and center.

Without further ado, here’s a firsthand interview with Jeanne (shown at left) about endometriosis: “what it is, why it matters and media myths that swirl into misinformation.”

Jeanne’s insightful ENDO blog is dedicated to putting this on the radar for tweens, teens, and the parents who love them, since the ramifications if misdiagnosed or left untreated are profound. Here’s a link for you to take action about raising Endometriosis Awareness and understanding beginning in the preteen/puberty years to preclude sloughing it off to ‘oh, must just be PMS and really bad cramps.’

Shaping Youth: Starting with the basics, what IS endometriosis, what are the the symptoms, and how did YOU get involved in such a fully dedicated way?

Jeanne: That’s easy. I know firsthand the suffering and pain endometriosis can cause, as endo symptoms hit me when I started my menses in 1982 at the age of 13, so I’ve lived with endo for 27 years now.

Like many endo patients, I have developed additional illnesses which often co-exist with endo. Having multiple chronic illnesses is challenging. However, I try to take what I have been through and share it with others in the hope that it might help them learn from my experiences. As for the definition: The Endometriosis Research Center describes endo as a “painful reproductive and immunological disease in which tissue like the endometrium (the lining inside the uterus which builds up and sheds each month during menstruation) migrates outside the uterus to other areas of the body,” affects more than 7 million teens and women in North America alone...

Shaping Youth: What is the difference between ‘common and chronic’ when it comes to cramping, PMS and such? What should girls know about misdiagnosis?

Jeanne: From age 13 to age 23, I went undiagnosed. There was clearly something wrong. Like so very many girls, however, I did not get the medical attention I needed to obtain a proper diagnosis and get appropriate treatment.

You see, the average diagnosis of endo occurs 9.9 years after the onset of symptoms. So the time lag between my symptom onset and diagnosis was actually “textbook.”

Barriers to prompt diagnosis range widely... Societal taboos about menses, myths about endo, how the condition is actually diagnosed, inadequate training of gynecologists and (generally speaking) a total lack of training on the part of pediatricians can all delay diagnosis.

“I’m going to quote from a brochure from the Endometriosis Association:

Myth: “Chronic pelvic pain is normal because you are female”
Fact: “Chronic pain is a sign that something is wrong. Studies have shown that 71-87% of women with pelvic pain lasting 6 months or more have endometriosis”

...So the magic number for doctors to label pain “chronic” (not just for endo but for any pain) is 6 months.”

Now, from a personal standpoint, I think 6 months is a long time to suffer if the pain is clearly impairing the girl, keeping her from school, impacting her social life, affecting her grades, etc. So if it were my daughter and she were clearly suffering, I would not wait 6 months to get her seen. (Of course, I have endo, my mom has it, and my mother-in-law does too… so I would clearly not wait for her to suffer 6 months knowing her odds).

Shaping Youth: Wow. So that brings up the obvious question, is it hereditary?

If a parent has a history of endometriosis or even heavy cramping, should she reveal that upfront at her daughter’s first puberty/pediatrician check-up?

Jeanne: Endometriosis can run in families. I say it can run in families because if I say “it’s genetic” then any girl without known endo in her family may think, “oh, it’s not endo” (even if it really is).

For example, my mother’s endo was diagnosed when she was 42 years old at the time of a hysterectomy... So I had a family history of endo but didn’t know it until I was already symptomatic myself for several years!

Also, astonishingly, many families have multiple members with endo and they just don’t discuss it with each other and then years go by and they realize, “gee, my sister has endo and has had laparoscopic surgery too.” (This stuff blows me away)

There is such astonishing “taboo” regarding menstruation and reproductive organs that women often don’t even communicate within their own families about it and suffer in silence; it’s terrible!

Shaping Youth: The NIH’s National Institute of Child Health and Human Development lists several symptoms of endometriosis, but when should you suspect you might have it or get a diagnosis?

I mean, how ‘heavy is heavy bleeding?’

Jeanne: Some (but not all) endo patients have very heavy bleeding that can interfere with daily functioning, some endo patients have pain so severe they actually lose consciousness. The number one thing I can suggest is to trust your gut. If your body is telling you something is wrong, listen to the message.

Early diagnosis is important. In some cases, getting diagnosed earlier can actually protect fertility. Estimates are that up to 40% endo patients may experience infertility. Again, to quote the myth/facts from The Endo Assn:

“Myth: Endometriosis is quickly and easily diagnosed.”

“Fact: Endometriosis is often missed. Before getting a correct diagnosis, most women who have endometriosis visit more than 4 doctors over the course of more than 9 years.”

Shaping Youth: Looking through the Endo FAQs it seems media has fueled a lot of the myths and legends about endometriosis... Can you give us some other examples of common media myths?

Jeanne: Despite announcements by Dancing with the Stars’ Julianne Hough and Lacey Schwimmer that they had been diagnosed with endometriosis prior to having had a laparoscopy, it is NOT possible to simply walk in for a pelvic exam and walk out with an endometriosis diagnosis.

The Endometriosis Association confirms, “Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia.”

Ms. Hough went on to have a laparoscopy that DID confirm her endometriosis diagnosis but these announcements by Ms. Hough and Ms. Schwimmer caused confusion… and the mass media, unfortunately, did not do the basic fact-checking that would have revealed the need for a laparoscopy in order to diagnose endometriosis.

After my own diagnosis in 1992, I searched and searched for information, without the luxury of Googling “endo” back then. In 17 years in support groups (and now writing a blog), I have met hundreds of endo patients.

The vast majority of women I have met who have endo began having symptoms at a young age. While onset of endo symptoms at a young age is not always the case, the vast majority of women I’ve met have had their symptoms hit them early.

Shaping Youth: What advice do you have for parents to extract the right kind of information from a preteen about period problems if she’s shy about sharing information?

How can we get younger girls, particularly, to be more open about discomfort or symptoms?

Jeanne: Hmm. Tricky question. Obviously every girl is different. Some are going to keep to themselves more and others are going to be more open. It’s obviously easier for parents of the girls who are more open because they’ll just say, “I’m in pain”, “it really hurts”, “I can’t go to school”, etc. A more reserved girl may be a bit harder to “figure out”.

Many girls with endo spend a fair amount of time at school during their period curled up on the cot in the school nurse’s office. (Ed. note: that’s if they have the luxury of having on-site care!) I remember I was a straight A student who hated missing class and when I went down in agony to the nurse because I HAD TO lie down, she would treat me like I was trying to get out of class. She was SO mean. Nothing could have been further from the truth (me trying to get out of class). Anyway, regardless of the girl’s personality or how hard she might try to “act normal”, astute parents should be able to notice certain things.

If a girl tends to hunch over and hold her abdomen (this is kind of reflexive and even a girl trying to “act normal” may do this when the pain is bad), that’s a sign…If a girl has such heavy bleeding that she wakes up with blood all over the bed or has extra long periods? (e.g. 11+ days) Not normal. Abnormally large number of pads and/or tampons or blood clots with her period? Or blood stains on her clothes from times she didn’t make it to the bathroom in time? Again, time to get checked…even though it IS common to see multiple doctors before finding one who provides a proper diagnosis, no matter how diligent you are.

Shaping Youth: Any tips other than obviously not ignoring pelvic complaints from teens or belittling pain in any way?

Jeanne: Endo forces you to advocate for yourself. Don’t ignore symptoms.

1) If your body is giving you signs of trouble, symptoms are worth looking into whether you have endo or not. (Other conditions can mimic endo symptoms) It’s important to learn the value of listening to your body.

2) If you seek medical attention and the doctor brushes you off or minimizes your symptoms, FIND ANOTHER DOCTOR. Just because a doctor doesn’t take it seriously does not necessarily mean it isn’t serious!

3) If you do see a doctor other than a pediatrician/primary care doctor, bear in mind that you want to select a doctor highly skilled in recognizing and removing endometriosis.

If the doctor should suddenly suggest a laparoscopy, you want to already be connected with a surgeon with whom you’d feel comfortable. The surgeon needs to be able to recognize endometriosis (you’d be surprised how many gynecologists could be looking right at endo and not recognize it as such). You also want a surgeon who removes endo regularly. The more experience a doctor has with endo, the better off you’ll be if s/he performs a laparoscopy.

4) If you are scheduled for a lap, take someone with you to the pre-operative appointment (to take notes and listen with you). Likewise, you want company for the post-operative appointment as well.

5) If you have a laparoscopy, the doctor will almost always talk to the loved one who is with you at the hospital (while you’re still in the recovery room). It’s highly unlikely you, the patient, will talk with your doctor until your post-op appointment, so have your loved one take notes about how the surgery went. What I do (with the doctor’s permission) is have my husband tape record what the doctor says about how the surgery went. (It could be two weeks waiting for a post-op appointment and that’s a long wait to find out how the surgery went).

Shaping Youth: How do you even FIND a doctor trained specifically in endometriosis? Where would a young women start if she’s seeing her family pediatrician?

Jeanne: Pediatricians are generally not trained about endometriosis, or well-equipped to provide a specialist referral, so this creates a barrier. Should a girl see her mother’s gynecologist? Not necessarily; a gynecologist could be fantastic for a healthy patient and make a terrible doctor for managing endo. The more skilled a doctor is at treating endo, the better.

A doctor who treats endo might be a pelvic pain specialist, an infertility specialist, a reproductive endocrinologist, a gynecologist... It’s not about the title so much as the experience. If you are fortunate enough to have an endometriosis support group in town, use it.

Shaping Youth: Parting thoughts? Action steps?

Jeanne: Communication and advocacy is key. Girls having symptoms need to be open with their parents; there is nothing to be embarrassed about. Parents who are told about daughters’ symptoms (or who observe that their daughters are having symptoms) MUST take action, and need to be understanding and patient with girls, recognizing that teenagers rarely care to talk about the classic endo symptoms. Be there for your daughter.

Shaping Youth: Thanks, Jeanne. Stay tuned for more on youth reproductive health and the media spin placed on same in tomorrow’s post about the 2009 Sex::TechConference ‘Secret Life,’ sexting hype, and more...

Related Resources

Endometriosis Research Center

Endometriosis Awareness/Action Steps

The Endometriosis Association

NIH/NICHHD Fast Facts on Endo

WebMD Endo Health Center

WebMD Support Group/Endo

American Pregnancy Association/Endo

Infertility Physician.com (article on endo/heredity)

Women’s Health/Endo (About.com)

Genetic Links to Fertility/HealthScoutNews-Yahoo

Preteen Alliance.org

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Many thanks to Amy Jussel of Shaping Youth for putting the spotlight on endometriosis for an audience of girls and their parents... a group of people who need to hear the message about endometriosis awareness that they are unlikely to hear from pediatricians or other health care professionals.

Women/girls should not have to wait years for a proper diagnosis!

The average diagnosis of endometriosis is 9.9 years from onset of symptoms. It doesn't have to be this way. We need to get the word out to girls who have yet to be diagnosed. The general public has little understanding of what endometriosis is. Thank you to Amy Jussel for getting our endometriosis awareness message out to girls and their parents!

If you would like to learn more about how you can help Amy Jussel's worthwhile organization, read here:

Doug Engelbart (inventor of the mouse!) Supports Shaping Youth By Offering Digital History

The place to buy and sell for Shaping Youth

Finally, I would like to ask readers to hop on over to Shaping Youth to post a comment thanking Amy for this endometriosis post. She went out of her way to devote much time and space to this important topic!

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

"Jeanne's Endo Blog": How Acupuncture Has Profoundly Changed My Life For The Better! It Is Awesome!

2009-03-31T15:14:00.004-04:00

Recently, I have talked on my videos about acupuncture. While I have blogged about it as well, I wanted to write a more detailed post about my experiences with acupuncture. The videos where I discussed acupuncture are in Vlog #3 and Vlog #4. You can see them in this blog or on my YouTube Channel. (I would just love ratings/comments on YouTube)!

Anyway, today I'd like to write about something that has brought me more peace and pain relief than just about anything else out there:

ACUPUNCTURE

For about 8 years now, I have had the pleasure of receiving regular acupuncture. This post is long overdue. I have gone over and over (in my head) how to best do justice to the profound benefits I have obtained from acupuncture. Today, I finally decided to jump in and try my best to explain why I love acupuncture so very much!!

First, here's a bit of background. When I was first diagnosed with endometriosis in 1992 and joined a local (in-person) support group, there was a woman in the group who raved about how amazing acupuncture was and how much it helped her. She could not say enough about it. (Oh, how I look back now and wish I had really listened to her)! Anyway, the picture in my mind (then) of acupuncture was scary... having needles "injected" (my mental term for it at the time when I didn't understand it) when I was already in so very much pain sounded like the last thing I wanted to do! So I did not try it. (I now regret this deeply).

Fast forward a few years and several surgeries. I was very, very sick and in incredible pain. I was willing and open to trying just about anything (within reason) at that point to get any relief whatsoever. A friend suggested acupuncture and referred me to an acupuncturist she highly, highly recommended. She urged me to check it out and she was convinced it could/would give me some relief for symptoms of my, by then, numerous chronic illnesses.

So after initially (in 1992) being apprehensive about acupuncture (because I was afraid the needles would hurt), I was now more open to the idea (by the year 2000). I called with questions... still a bit unsure about the whole thing. He could not have been nicer or more patient with my questions. So I decided to give it a try.

Here are 3 sizes of Japanese-style acupuncture needles:

Do you notice how the silver part attached to the colored plastic ends is so thin you can barely make it out?

My acupuncturist uses Japanese style needles (flexible and very thin). They don’t hurt me and I have EXTREMELY sensitive skin (thanks to fibromyalgia, neuropathy, allodynia, etc.)

I recently asked him some questions about the type of therapy he uses. (I know there are varying types of acupuncture). He uses Japanese acupuncture: a combination of Manaka and Meridian therapy. He attaches these little alligator clip things that facilitate the flow of qi (meaning energy) through the body. He also, on occasion, uses a FAR-infrared light over certain areas (as needed). This special lamp is supposed to simulate moxibustion. I love this lamp! It is nice and warm and it really helps my fibromyalgia pain.

I see numerous specialists for a wide variety of chronic illnesses. With no disrespect to my other doctors, my acupuncturist has helped me more than all of my other doctors combined!

Rather than focusing on just one symptom or organ of the body, he treats the whole person. He has treated numerous symptoms and/or illnesses of mine. The number of symptoms (of many illnesses) that he has been able to help me with is nothing short of incredible.

He has helped me with SEVERE post-surgical complications that no one else could help me with.

I have found his gentle approach to be highly relaxing. I have even fallen asleep during acupuncture sessions! Due to my fibromyalgia and sleep apnea, I don't get restful sleep (as in ever). In fact, the sleep disorder clinic that diagnosed my sleep apnea said that I never entered the restorative sleep phase at all! (No wonder I'm so sick). I am still struggling to be able to use my CPAP machine for the sleep apnea (see post from earlier this week for more about the apnea but I had another reaction to the headgear this week). Anyway, my point here is that acupuncture relaxes me better than ANYTHING!!! The rest I get at acupuncture is better than a full night's sleep for sure!!

Here's what I often picture when an acupuncture session starts and I'm still fully conscious:

I have been a patient of his for about 8 years now. I look back and can't believe how much it helps. Does it cure my illnesses? No. Does it help more than any other one thing out there? You bet!

In summary, I discovered that taking a chance to try something I was initially nervous about really paid off! Once I tried acupuncture and saw how beneficial it is, I became a regular patient. Since it has been so helpful for me, I have referred many others to him. I facilitate an endo support group and have told my fellow support group members about his gentleness and effectiveness for a wide variety of symptoms. I haven’t had a single person try it and come away dissatisfied. In fact, I have had several group members try it and tell me how helpful they found it as well. I am very grateful to have such a highly trained and skilled acupuncturist in my area. I cannot say enough about acupuncture.

When I had a surgery that did NOT go well last January, it was my acupuncturist that took me from the worst pain of my life and inability to walk on my own to walking out independently an hour later. My husband had to help me in to the first post-surgical appointment after a nerve-cutting surgery gone wrong that I had put off for 4 years. (I'll have to write about that surgery another day).

Anyway, I had phantom pain post-surgery from the nerve-cutting. (This is the type of pain that affects amputees but can also occur following nerve-cutting surgery). In the past year, I have lived with post-surgical pain I could not have imagined before my January 2008 surgery. The neurologists (plural) seem to think that this pain will be a life-long problem for me. A year later, it is extremely difficult for me to exert enough pressure to shave my leg because the area affected by the nerve-cutting makes even light pressure almost unbearable. If it were not for my acupuncturist, I don't know how I would have dealt with the type of pain I had last January. Back then, taking a bath was impossible because the water against my leg hurt too much. It was just terrible.
After 7 surgeries, 11 kidney stones, cancer removal/appendectomy, bowel resection, 4 cystoscopies, 3 colonoscopies, etc... none of these matched the pain following last January's surgery. I still struggle every day. Every blog post I write requires breaks to get up and stretch because sitting aggravates the pain. Driving is still a challenge. Sitting normally is tough. When at the computer, I sit in a leather office chair with BLANKETS on top of it for cushioning and I still get very sore from sitting.

He hasn't cured the surgical complications. (Nor would it be fair or realistic to have expected this!)

However, he greatly reduced the worst pain of my entire life over the past year (bit by bit). I owe him a debt of gratitude I will never be able to repay.

Here are some books and websites that my acupuncturist recommends...

"The Web That Has No Weaver: Understanding Chinese Medicine" by Ted J. Kaptchuk O.M.D.

"Japanese Classical Acupuncture: Introduction to Meridian Therapy" by Shudo Denmei, translated by Stephen Brown, C.A.

Acupuncture Today

Acupuncturist Locator

This is a helpful resource for acupuncture:

National Certification Commission For Acupuncture And Oriental Medicine (NCCAOM)

(NCCAOM’s online directory is designed for individuals seeking practitioners who meet national requirements for board certification in Oriental medicine, acupuncture, and Chinese herbology. These practitioners have met all requirements for NCCAOM certification in the specific program area).

If you have any apprehension or reservations about trying acupuncture at all, please let me know. I'll be happy to help you in any way I can.

Are you concerned about cost? Please see below!

For those of you who do not have acupuncture coverage through health insurance, I strongly encourage you to read the comments exchanged between "Liberty" and me (see the exchange in the blog comments in the link below). It explains how my (uncovered) acupuncture easily pays for itself... literally!

What about the cost of acupuncture?

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

'Jeanne's Endo Blog': "Spread The Word To End The Word"

2009-03-31T12:08:00.019-04:00

It's March 31, 2009...

For more information...

Special Olympics: Spread the Word to End the Word

Follow FanCommunity on twitter

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

"Jeanne's Endo Blog": National Suicide Prevention Lifeline Information

2009-03-30T00:06:00.013-04:00

THIS POST IS BEING RE-PUBLISHED FROM LAST JUNE AS A REMINDER THAT THERE ARE RESOURCES AVAILABLE FOR ANYONE HAVING SUICIDAL IDEATIONS. PLEASE SEEK HELP FROM PROFESSIONALS TRAINED TO GIVE IT IF YOU ARE HAVE SUICIDAL THOUGHTS. THANK YOU!

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:

National Suicide Prevention Lifeline

"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.

"Jeanne's Endo Blog": My Gastroenterologist Is A Genius!

2009-03-29T21:58:00.020-04:00

My colonoscopy is later this week. The colonoscopy is the easy part. I have been living in fear of the bowel prep.

I've had 3 previous colonoscopies and I've done bowel preps for some of my surgeries for endometriosis. I had a foot of my colon removed in 1996. So I've had 6 bowel preps to date. My body does NOT handle bowel preps well... at all.
Anyway, it has been a few years since I've had to do a bowel prep.

To make a long story short (because I'm feeling sick and spent the day in bed so I need to cut to the chase), I finally tried the blue Gatorade tonight. Now, you may be asking, "blue Gatorade?" (My prep is Thursday and my colonoscopy will be Friday). Here is why my gastroenterologist is a genius: the blue Gatorade.

Years ago, I drank some Gatorade and it was so gross that I gagged and swore I'd never drink Gatorade again. I think I even vomited after drinking it. It was that gross to me. The part I remember is swearing I'd never, ever drink Gatorade again.

Anyway, my gastro and I were going over options for bowel prep and he started talking about Gatorade and Miralax. He could see by my reaction that I was not a Gatorade fan. That's when he brought up BLUE Gatorade.

Long story short, I ended up telling him I'd try the blue Gatorade sometime before the prep and that I'd use that method if I tolerated it better than Golytely. (Anyone who has ever had Golytely now has some idea of just how gross I found the Gatorade I drank years ago. The fact that I would choose Golytely over the regular Gatorade says something). Anyway, he walked me out to the front desk and told the receptionist to skip the citrate of magnesia part for my prep (long story from a past prep involving kidney stones and being deathly ill). Then he gave me a Golytely prescription as a backup just in case I couldn't do the blue Gatorade.

The blue Gatorade has been sitting in my house for about 3 weeks now. I have been scared to drink it. This seems silly now but I have some very bad stories involving gag reflexes and vomiting. Anyway, with the prep coming up Thursday... I decided I really needed to try the blue Gatorade. (The Miralax is supposed to be tasteless).

To my amazement, the blue Gatorade was not bad! I'm so happy I won't have to drink Golytely!

Now, I'm not foolish enough to think that a better tasting prep necessarily means it'll be any easier any other way besides taste. Like I said, I've done 6 bowel preps and I always get really sick from them. So, if I make it through Thursday without passing out or profuse vomiting... then the blue Gatorade prep will really get my seal of approval. For now, I'll settle for knowing I don't have to drink Golytely this Thursday.

By the way, I have been meaning to blog the whole story of why I'm having a colonoscopy this week but haven't scraped up the energy just yet. Let's just say that I've had some scary symptoms that need to be checked out. At the same time, I don't expect him to find anything during the colonoscopy on Friday. I believe the strange symptoms I've been having are actually endometriosis-related.

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

"Jeanne's Endo Blog": Helen Keller's Quote

2009-03-27T11:29:00.010-04:00

As regular readers here are aware, I love quotes. While they are often interspersed within a regular post or included at the end, I decided to post this one and just let it stand on its own. I just love Helen Keller quotes!

By the way, the transfer process for this blog is coming along. Thus, you'll notice I am no longer including tags for posts. This new blog will be very different. It's exciting! :)

"Although the world is full of suffering, it is also full of the overcoming of it"
-- Helen Keller (1880-1968), author, lecturer, activist

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

"Jeanne's Endo Blog": Endometriosis Associated With Periodontal Disease?

2009-03-26T15:23:00.024-04:00

Wow! Check out this fascinating link regarding a new study that may provide clues regarding endometriosis and the immune system!

Endometriosis associated with periodontal disease

I found this article posted on twitter by:

libbyshope (Paul Cacciatore, Founder of Libby's H*O*P*E*: *Helping *Ovarian Cancer Survivors *Persevere Through *Education)

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

"Jeanne's Endo Blog": Are Sleep Apnea & Endometriosis Co-Existing Conditions?

2009-03-24T10:14:00.122-04:00

To view the striking chart below, just click to enlarge it:

This chart was obtained from the CureTogether blog in this story:

Endometriosis Survey Shows High Comorbidity Rates

Recently, Endochick was asking me some questions about sleep apnea. You see, I have obstructive sleep apnea and she was going for sleep studies and wanted to know more about it going in. (She had a study to be diagnosed with sleep apnea days ago).

See her blog post on it: Adventures in the Land of CPAP & Pain, Pain Go Away Don’t Come Back Another Day!

Someone in my local endo support group also has sleep apnea.

That got me thinking. So I took a look at the graph CureTogether produced to see if sleep apnea was included on the endometriosis chart. Sure enough, it was.

I know I haven't blogged about my sleep apnea (too many illnesses, not enough hours in the day to cover them all).

Basically, my pulmonary specialist emphasized to me that not getting enough oxygen during sleep (when I stop breathing) can negatively impact ALL of my illnesses. By the way, I was referred to the pulmonary specialist when I flunked the echocardiogram-stress test and my lung pressure was too high (I was referred to the cardiologist by my PCP). So the cardiologist referred me to the pulmonary specialist to rule out pulmonary hypertension.

So it went:

PCP --> cardiologist --> pulmonary specialist --> sleep disorder clinic

Thankfully, the pulmonary specialist did not think it was PH. So he referred me to a sleep disorder clinic. There, like Endochick, I had 2 sleep studies. The first overnight study (called polysomnography) was to evaluate/diagnose me. The second night was to study my sleep with the CPAP (Continuous Positive Airway Pressure) mask on.

Here's a video that gives a rough idea of what to expect in a sleep study. (Like Endochick's, mine was split into two sessions... unlike the video)...

The second study measures what air flow will be appropriate for a patient and then the doctor who ordered the test (the pulmonary specialist in my case) interprets the test results and prescribes a particular air pressure.

The next step is finding a CPAP provider from which to obtain the machine/equipment. (Hint: there are many)!

Since I needed latex-free (I'm allergic) and PVC-free materials (PVC is not good for endometriosis patients), I had to call around to several providers. I found one that was very helpful. The woman there researched the options for latex-free and PVC-free equipment.

Like many sleep apnea patients, my first headgear did not work out. So I had to start from square one. This very kind woman found another option for me. I wore it for awhile but developed sores on my head (in the back). My husband looked at them (since I couldn't see them). They were painful, numerous and large. My husband said they were directly lined up to where my headgear meets my head. Great.

So I stopped using the CPAP and allowed my head to clear up. Then I went to the fabric store and bought some cotton flannel material for covering the headgear. As my dermatologist has drilled into my head, I washed the cloth several times to remove any chemicals like formaldehyde. (I'm allergic to formaldehyde and apparently garment companies routinely dip fabric in various chemicals at the manufacturing facilities, according to my dermatologist). So, I washed the cotton quite a bit and laboriously fitted it to the headgear as a barrier.

Again, I wore it for awhile until... you guessed it. I got sores on my head again! In the same exact spots.

By now I was totally frustrated. About this time I had a follow-up appointment with my primary care physician. She asked how I was doing with my CPAP. (Many CPAP users struggle with CPAP treatment, for a variety of reasons).

I explained where things were at. Long story short, she suggested putting another barrier between the headgear and the cotton cloth. So I did. The good news is that it worked as far as not causing any more sores. The bad news is that it makes my headgear slippery. So, heaven forbid I want to dare to roll over... my headgear falls off my head! (I'm not a back-sleeper). It's set on the tightest setting. So this is a problem. My husband recently rigged some sort of velcro thing on it. Honestly, I need to get back into wearing the CPAP nightly. No wonder my Raynaud's has been so horrible lately. I need some oxygen.

Aside from the fact that I can't move without my headgear falling off or the fact that it blows cold air on my poor husband, I really WANT to wear my CPAP. I know wearing it will make me feel better. It's just a constant process of adjustments and modifications to make it work. I'm working on it...

I saw a story on PBS about the risks of untreated sleep apnea and it was alarming. I went onto the PBS site looking for the story and found a URL but nothing embeddable. I think this was only the 1st of multiple segments they had featured but I definitely think it's worth watching.

VIDEO FROM PBS: Just click the link below to view it...
Doctors Aim to Better Diagnose Troubling Sleep Apnea

Anyway, for for information regarding sleep apnea, you can contact:

American Sleep Apnea Association

Sleep apnea and endometriosis may not be extremely common co-existing conditions but the fact that sleep apnea does appear on CureTogether's chart (above) and the fact that I know of multiple endometriosis patients who have sleep apnea too made me decide to post about it. Untreated sleep apnea can lead to a whole host of other health problems... some quite serious.

These risks include:

* Heart problems
* Heart attacks
* Poor quality of life
* High blood pressure
* Strokes
* Death
* Car accidents and work related accidents due to sleepiness

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

"Jeanne's Endo Blog": Guest Blog - Roberta's Twenty Plus Year Rollercoaster... Roberta's Experiences Following Hysterectomy...

2009-03-23T12:45:00.052-04:00

The following Guest Blog post was written by my close friend Roberta. (She's camera shy so there won't be a picture for this Guest Blog). I met her through my local endometriosis support group. (For that group - which I started in 2001 - Roberta was Co-Leader with me for part of the time). I have learned an enormous amount from Roberta. Her generosity with sharing her wisdom and introducing me to new modalities is unmatched. I treasure her friendship and I am honored that she agreed to write a Guest Blog post. The story below is an excellent summary of her difficult journey. There is so much more that has gone on behind-the-scenes. Roberta is one of the strongest, most thoughtful, resilient, caring people I know. I know her story will help many. Roberta has training in everything from Reiki to colon hydrotherapy to homeopathy. She works harder than anyone I know to be well. She follows rigid diets (not weight-loss diets... I mean diets for health reasons) that I do not envy. She does physical therapy exercises and Chi Nei Tsang at home. She puts into practice what she learns. She doesn't just talk the talk. She walks the walk. Roberta is truly one of the most thoughtful people I have ever met. She uses every ounce of adversity she has been through to help others by sharing her experiences. She is one very special woman!

My 20+ year ride on a Roller Coaster - by Roberta

At the age of 30 I was a healthy, vibrant, energetic and happy young woman. I had just gotten married for the second time and looking forward to adding to “our” family. I thank God that I was blessed with a daughter from my previous marriage.

I had never experienced many problems with my period. I had at times had some discomfort but it never lasted long nor did it incapacitate me in anyway. That was soon to change. All at once my pains were so intense that I was vomiting and having diarrhea every month. The pains would last from ovulation until several days into my period. Finally after many months and doctors and multiple tests my gynecologist suggested that I have a laparoscopy. I was undiagnosed for 1 more year. The doctor who did the procedure didn’t bother to tell me that I had endometriosis.

I quickly fired that doctor and found a doctor in my area that “specialized” in endometriosis. Confirming the diagnosis he prescribed Danocrine. Unfortunately, Danocrine can only be used for short periods of time before women develop masculine side-effects. I took Danocrine for 1 year had another laparoscopy and nothing had changed. Upon stopping the Danocrine, the pains came back with a vengeance. Two weeks out of every month I was very ill. At 34 I felt I couldn’t take the pain and sickness any longer. I decided to get the complete hysterectomy-after all isn’t that the answer to endometriosis?

I felt fine, I thought. I was put on synthetic hormones immediately and just wanted to go on with my life. Within a year I was having significant muscle pains throughout my body. Additional testing diagnosed me with fibromyalgia at 36. I continued to work part time and take care of my family and home the best I could. Then at 39 my doctor decided that my blood level estrogens were too low so he prescribed a higher dose. Within 2 weeks the estrogen killed my gall bladder so I had my gall bladder removed. I didn’t realize that gall-bladder removal would be so problematic for my digestive system.

At 44 - I have now been diagnosed with leaky gut syndrome. Anything I ate caused me great distress. It took one year to get a food allergy test that concluded I was reactive to almost every type of food. I had lost 30 lbs. in 4 months and looked very ill. After a year of struggling with the leaky gut syndrome I developed chronic fatigue syndrome. The chronic fatigue produced severe, constant flu like symptoms lasting for months.

At 46 - I started the journey of severe hormone imbalance. I developed chronic pelvic pain and for three months I felt like I was delivering a baby. My doctor prescribed a very special type of physical therapy-called a pelvic pain specialist, which provided some relief. My doctor then suggested bio-identical hormones -I got much worse. Finally my husband suggested that I stop the hormones completely-I did. While I felt better initially I still was in need of something else. At just barely 48, I went to my naturopath and was prescribed a homeopathic that helped immensely. It took only 2 months time to get my chronic pelvic pain under control. Believe me when I tell you that YOUR hormones are unique to you and cannot be duplicated in a test tube.

At 52, while having my routine mammogram (something I have done for 20 yrs. after being diagnosed with fibrocystic breast disease) the doctor found a suspicious lump. I returned in a few weeks for a biopsy - I was diagnosed with breast cancer. My lumpectomy and radiation were completed by July 2008.

I feel compelled to write about endometriosis and the over use of hysterectomies in our culture. I certainly cannot say that it could be scientifically proven that my breast cancer, fibromyalgia, chronic fatigue, and leaky gut were a direct cause from the endometriosis and my choice of a complete hysterectomy. However, in my heart of hearts I know that it is so. When we introduce artificial hormones at such an early age we create a huge imbalance of our entire body since hormones reside in every cell not just our reproductive system. I feel that it is absolutely imperative for women under 45 to keep their uterus and ovaries unless it is a matter of life or death. I truly believe that the over use of synthetic hormones is a very dangerous thing.

I have tried to condense my story. As I looked back there were many steps and processes that I didn’t include. The last 20 years of my life has been a very complicated journey. One thing that I try to emphasize to women who are considering hysterectomies is to understand that after a hysterectomy your libido is almost completely gone. There are many women in my family that have had endometriosis and have chosen hysterectomies for their “cures”. All have agreed that if they had known how negatively they would feel about intimacy and love with their husbands, boyfriends or partners that they wouldn’t have undergone such an invasive surgery. You can’t get it back-it’s permanent!!

Now I am 53, and I have fully embraced integrative medicine-(i.e.- acupuncture, homeopathics, supplements, organic foods, massage therapy, herbs, Chi Nei Tsang-chinese abdominal massage). They have been part of my life for the past 10 yrs. These modalities make my syndromes bearable. Yes, it is financially a bit more expensive but emotionally, physically and spiritually it is a bargain. While the initial choice of having a complete hysterectomy appeared to have many benefits- I have learned the hard way that for me it was the most physically debilitating life alteration experience. Personally, I believe that my choice of a complete hysterectomy significantly precipitated the downward spiral of my health.

Hopefully, I have planted a seed of doubt about hysterectomies being a cure all for endometriosis. Indeed they are not. There are many avenues available at this time to assist you in making a more informed decision regarding the short and long-term outcomes of a complete hysterectomy. Use all the complementary medicines that you can find and afford to help alleviate or decrease your undesirable symptoms. It will be worth it in the end. As well, talk with many women who have had the surgery. Believe what they say-they are living the truth.

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

"Jeanne's Endo Blog": Check Out My Newest Video Here And Then Please Rate It & Comment On It At My YouTube Channel! (Vlog #4)

2009-03-21T00:34:00.060-04:00

If you have not yet signed the endometriosis awareness petition, please do so to support the 89 million women/girls worldwide who have endo, at this link:

Endometriosis Awareness Petition

See Endochick's blog regarding our next media target: The Today Show. Let's get endometriosis FACTS featured on Today. We're trying to get Meredith Vieira's attention for a story.

For more info (including my comments back to her blog post), please Endochick's blog:

Endometriosis: The Silent Life Sentence

Here is the still picture I promised of the Japanese-style acupuncture needles:

With the penny there for perspective, you can see how tiny those needles are in circumference. Each needle looks about the thickness of a "cat's whisker", as my acupuncturist puts it.

The needles do not hurt.

I wish I had not feared the needles. I wish I had started acupuncture years earlier than I did! I was afraid of the needles. There is nothing to be afraid of.

Not only does acupuncture help my pain and other symptoms but it is RELAXING! I tend to "zone out" in acupuncture sessions... I may not be "asleep" but I definitely am not fully conscious either. (There are times when I do fall asleep completely). When I first started acupuncture, this was not the case. Once I had been going to acupuncture for awhile, I became more relaxed with each visit. Now, I could walk in all wound up and within a few minutes... acupuncture can help me feel relaxed and peaceful. It is truly amazing!

As I mentioned in the video, I get Japanese acupuncture that is a combination of Manaka and Meridian styles (with Japanese needles). I want to get the word out about the tremendous benefits of acupuncture and allay any fears people might have regarding needles. Acupuncture does not hurt!

Ratings & comments on my videos can be made at the link below:

You can also choose to subscribe to my YouTube channel.

By the way, the strange noise in the background while I'm talking on this video is the sump pump! It's flood season... :)

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

"Jeanne's Endo Blog": PETITION: A Moment Of Your Time Can Support The 89 Million Women/Girls With Endometriosis!! Plus, Check Out My YouTube Channel!

2009-03-19T11:38:00.031-04:00

Great news! We are nearing 300 signatures on the endometriosis awareness petition!

Isn't that wonderful?

If you have not yet signed the petition, please take a moment to do so. The more names we get the better. When we approach major media outlets about getting endometriosis facts covered, we submit this petition along with our letters and emails.

According to the Ohio State University Medical Center:

"It is estimated that between 2 percent and 10 percent of American women - or 5.5 million women and girls - of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility".

Here's where you can sign:

Endometriosis Awareness Petition

Interested in checking out my videos? Here's the place:

Jeanne's YouTube Channel

I am grateful for any comments and ratings you can leave on the YouTube videos and would love it if you'd subscribe to my YouTube channel.

Thank you!

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

VIDEOS --- "Jeanne's Endo Blog": Now Playing At A YouTube Channel Near You... Endometriosis and Acupuncture...

2009-03-18T18:46:00.016-04:00

Yesterday I began promoting my YouTube channel. I would deeply appreciate if you'd take a few moments to check it out. Once there, you have the option to leave comments on specific videos, rate the videos (1 star is worst, 5 is best), and/or subscribe to my YouTube channel.

Any feedback you can provide (comments or ratings) would be greatly appreciated... and I, of course, would be honored if you decide to subscribe to my channel.

So far, topics covered are endometriosis and acupuncture but eventually I will cover other topics... primarily chronic illness topics.

I'd be honored if you'd check it out:

Jeanne's YouTube Channel

Thank you!

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

"Jeanne's Endo Blog": Interstitial Cystitis & Hot Peppers

2009-03-15T17:06:00.021-04:00

This is a follow-up to yesterday's post about interstitial cystitis, a common co-existing condition to endometriosis.

I was just reading the latest Cafe ICA and came across this snippet about IC research and hot peppers from January 2009:

Nerve Type that Responds to “Hot Pepper” Pinpointed

Related link:

Saturday, March 14, 2009 "Jeanne's Endo Blog": Interstitial Cystitis Is A Common Co-Existing Illness To Endometriosis... See Article About Interstitial Cystitis...

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