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

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)...


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


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!

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:


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"

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


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!

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

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?

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?

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...

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)

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!

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...

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

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.


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

Are you one of the many patients with both interstitial cystitis and endometriosis like I am? If so, keep reading because I'm sure you'll find this article interesting. Even if you don't have one or both of these conditions, you may find it informative.

Is there "cross talk" between organs?

Here is a very interesting article that my friend (and local endometriosis support group member) Roberta sent me.

It's about interstitial cystitis, pelvic pain, colon nerves, bladder nerves, the spinal cord, etc. It's very interesting!

Pepperoni Pizza And Pelvic Pain

By the way, the article states, "the pelvic pain is so intense some women inject anesthetic lidocaine directly into their bladders to get relief". Well, I am here to tell you that bladder instillations are very helpful and not as scary as they may sound. There are various medications used for bladder instillations.

In addition to taking oral medication for IC, I do self-catheterization for bladder instillations. This provides tremendous relief. Learning how to self-catheterize meant I don't have to drive 45 minutes each way to my doctor for each instillation, I don't have to conform to my doctor's schedule, and I don't have to pay a co pay for each instillation. When my pelvic pain specialist first mentioned self-catheterizing at home, I looked at him like he had 10 heads. I have to say, though, that I'm glad I learned how to do it. It's far more practical to do bladder instillations at home when it's convenient for me (following my doctor's directions on frequency of treatments, of course).

Related links:

Too numerous to list. Please use search engine (top left of blog) to look for other interstitial cystitis posts.

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

"Jeanne's Endo Blog" Thanks Twitter Guru 'steveweber' For Helping Us Promote Endometriosis Awareness!

I spent some time today catching up on twitter. I highly recommend TweetDeck, by the way. It's so much easier to manage tweets with it.

As I was getting caught up on twitter, I was messaging various people I encountered, asking them to sign our endometriosis petition.

It occurred to me that I hadn't asked steveweber to support our cause. For those of you who aren't familiar with him, he is what I call a "twitter guru". Check out his twitter page and you see 21,175! When I first installed TweetDeck, he was very helpful!

Thank you to steveweber for retweeting #endo messages!!

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

"Jeanne's Endo Blog": Endochick's Scholarship Recommendation Letter. If She Wins The Scholarship, She Will Get News Media Coverage For Endometriosis!

Endochick has been blogging since March 2007. In her first bloggy life, she had a Blogger blog. Then she transferred to Wordpress in January 2008. So she has been blogging about endometriosis for just shy of two years now.

I was honored when Endochick of
Endometriosis: The Silent Life Sentence asked me to write her a letter of recommendation for a college scholarship for which she is applying.

She was only allowed to submit one letter! Once I realized my letter was going to be "it" for recommendation letters, I wanted to be sure to do Endochick justice in my letter!! THE PRESSURE! :)

I completed my letter recently and sent it off to Endochick. I asked her permission to post it here.

(I will replace her full name below with her screen name of Endochick).


Letter to the college scholarship judges:

I am writing to you today regarding Endochick.

I believe Endochick should get the Saint Mary-of-the-Woods Alumnae Leadership and Service Award because of her outstanding service to the endometriosis community.

Endochick and I share a common illness. It’s called endometriosis and it affects an estimated 89 million women and girls worldwide.

In fact, endometriosis affects more people than AIDS or cancer (as per The Ohio State University Medical Center website: The Ohio State University Medical Center website). Endometriosis is a very serious illness and its impact is all-too-often underestimated! (Having personally had cancer removed in 1996, I can tell you that endometriosis has had a far more profound effect on my life than cancer ever did). Women and girls need people to advocate for them and teach them how to advocate for themselves.

Endochick advocates fiercely for endometriosis patients every single day…

Endochick volunteers her time to write a very highly respected blog about endometriosis.

Her blog is called, “Endometriosis: The Silent Life Sentence” and can be found here:

Endometriosis: The Silent Life Sentence

It is one of the most helpful blogs I have found! Endochick’s writings on it are helping to support and inform patients and the public. Her blog elevates awareness of this insidious disease.

She is a role model for other endometriosis patients and other endometriosis bloggers/health bloggers! Her body of work encompasses a vast amount of information that enlightens the endometriosis patient community and educates anyone who reads it.

In June 2008, I began writing a blog about endometriosis. One of the first things I did was to look at the blogs that were already available. Endochick’s blog existed long before I began writing my own endometriosis blog.

Her blog stands out from the rest for many reasons...

It is well-written, packed with information, emotionally supportive, ranks highly on Google search engines, and she has loyal readers from many other endometriosis blogs. That last part alone is a testament to how helpful her blog is… women who are sick with this serious illness take time out of their busy days to read and post comments on her blog on a regular basis. Endochick has a loyal following of readers!

Endochick uses her spare time to write this educational, supportive blog that helps so many! Her blog has been featured by CureTogether (a medical research organization you can find at CureTogether). Her blog is featured on the endometriosis section of its website.

March is Endometriosis Awareness Month.

It isn’t March yet but Endochick has been very busy working on various endometriosis awareness-related activities!

Endochick has been instrumental to me in efforts to publicize an endometriosis awareness and understanding online petition that is gaining signatures every day:

Endometriosis Awareness Petition

The purpose of this petition is to get the media to understand that endometriosis affects many and affects them profoundly. We have 238 signatures and that number is growing every day. This online petition includes a comment field where each person signing it can leave their remarks. The heart-wrenching, emotional, painful comments left on this petition give the reader some insight into just how significantly endometriosis impacts patients and their loved ones.

She has worked with me to spearhead a letter-writing campaign that has captured the attention of Mariela Azcuy, Senior Associate Director of PR for Meredith Corp. (publisher of Ladies’ Home Journal, Siempre Mujer, and More magazines)...

Her impassioned plea for endometriosis awareness is posted on her blog as a “sample letter” to role model for others how to go about contacting the media with a request for coverage about a particular topic (in this case endometriosis).

See her blog entry: *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!! for a peek at the “sample letter” she posted.

Posting articles such as this helps Endochick’s readers to follow her lead… and advocate for themselves and each other about endometriosis. Patients who might normally just passively read that Endochick contacted Ms. Azcuy are getting motivated to write their own letters. She uses her blog as a tool to educate and inform… as a means of empowering other endometriosis patients to follow her strong lead in bettering the lives of women and girls with endo.

She contacted Donna Jackson Nakazawa, a published author of a book about autoimmune illness/chronic illness, in an effort to obtain mainstream media attention to endometriosis.

Endochick’s tips and suggestions help patients improve their quality of life. Her generous sharing of her experiences on her blog (in often quite personal detail) helps patients enormously. I know this because I am one of the patients she has helped!

Endochick has urged readers of her blog and my blog to participate in the exciting Endometriosis Awareness Month activities we’ve been recently working on for March.

A few months back, an Internet predator was found to be preying on endometriosis patients on online support groups. Endochick published this fantastic article with tips for Internet safety:

Bloggers: Protect Yourself

I quoted this article in my own efforts to educate patients and other blog readers about the need for caution online.

One of my favorite posts from Endochick’s blog is:

Dancing With The Stars - Endometriosis

This article is so amazing, so thorough, and so informative that I asked her for permission to re-print this article on my own endometriosis blog in order to maximize the number of people seeing it!! It is a very comprehensive educational article about illnesses that can be confused with endometriosis. It makes a compelling case for the importance of getting a proper diagnosis!! In this blog post, Endochick related the chilling story of how her own sister’s cervical cancer was nearly mistaken for endometriosis. While endometriosis is a genetic illness, assuming that symptoms are endometriosis-caused without having a surgical procedure called a laparoscopy to verify that there is, in fact, endometriosis at the root of the symptoms could be a dangerous error. Her article was brilliant because it used her sister’s cancer story and her family’s endometriosis history combined to highlight the extreme importance of getting an accurate diagnosis before jumping to any conclusions. Her exhaustive list of illnesses that can mimic endo was superb! I was honored that she agreed to let me re-print this story on my own blog.

Endochick is a role model for other patients and for other endometriosis bloggers. Her blog is an important resource for patients and their loved ones. She is a huge contributor to the endometriosis community!

Endochick’s blog is well-respected by so many.

Listen to comments made on Endochick’s blog:

Comments from KEA:

"I just found your blog. I have endo also. Your title is so accurate it really touched me. I am sorry for your pain (not that it really helps), but your not alone in your pain (as im sure you know no matter what the docs say) I just wanted to say Thank You for sharing, thats what helps others to know theyre not alone either. They really do need to make more people aware but I think Its so wide spread and they know so little about it that theyre afraid of the reaction that would cause so they hide it and tell women its all in their imagination…. It gets hard suffering in silence while you appear to be healthy because no one believes you...[sic]"

Comments from Endogirltoo:

"Thanks so much for you words, you encourage me today when I didnt know what else to do!"[sic]

Comments from janniesue:

“Hello Endochick. I read this, your guest post on Jeanne’s Endo Blog and wanted to come over here to thank you for listing the many possible conditions that may indeed mimic endo conditions. It is indeed of the utmost importance that correct diagnoses be made.

Although my endo was able to be controlled, in fact stopped (after diagnosis via lap and surgery), there are still so many women out there suffering, given less than optimum care, even given misinformation by doctors. Any awareness that can be raised to help dispel myths is a step in the right direction. Thank you!”

The guest post Janniesue mentioned above was the re-print Endochick generously allowed me to do of this article:

Dancing With The Stars - Endometriosis

This article was so loaded with information that I wanted my blog readers to benefit from Endochick’s keen insights and exhaustive list of illnesses that can mimic endometriosis. I asked her to be a Guest Blogger for me because her writing is so good that it should be publicized as much as possible to help endometriosis patients.
The blog post above was especially helpful because it could save lives! Endochick related a compelling story regarding her sister’s experience with symptoms that mimicked endometriosis when, in fact, they were cancer! Endochick’s blog post illustrates the importance of proper diagnosis!

That post alone was incredibly educational for the public because it made a strong case for getting a proper diagnosis rather than jumping to conclusions. Her words in that post can potentially save lives.

Endochick is generous with her knowledge and wisdom. She mentors others, she leads by example, and she shares what she learns to help others learn and grow. She is empathetic, warm, funny, and compassionate. She has been blogging since March 2007. I asked Endochick recently how much traffic her blog gets. It averages 56 hits (and growing) per day! Clearly she is reaching many women and girls with endometriosis and their loved ones!

__________ writes her blog using the screen name “Endochick”. Here is how she describes herself on her blog:

“Endochick is a writer, a mother, a wife, and a student. She suffers from Stage III endometriosis, Sheehan’s Syndrome, Complicated Basilary Migraines, and hypothyroidism. This is her blog about her ongoing struggle with endometriosis and how it affects her life and her passion: writing”

Endochick’s blog is well-respected within the endo community and bloggers like Janniesue and Foxy take time out of their busy lives to leave positive feedback comments on her “Endometriosis: The Life Sentence” blog.

The endometriosis community is very fortunate to have Endochick’s talents as a writer... Her advocacy on behalf of women and girls with endo is unmatched. She is a driving force on getting needed support and information out to patients. Endometriosis has a profound effect on the lives of patients and their loved ones. From its potential affects on patients’ careers, education, relationships, fertility, chronic pain, etc., endometriosis is a very serious illness with a much underserved population. Endochick is part of the solution to the problem of patients lacking support, education, resources, and self-advocacy skills. Endochick is a role model for all endometriosis patients!

In addition to her blog writing, Endochick is a role model for endometriosis patients in other ways. She is committed to a vegetarian diet as a way to heal the body of manmade chemicals and additives, she’s committed to eco-friendly products as a way to both heal the planet and heal her body.

Endochick doesn’t just talk the talk. She walks the walk.

She has triumphed over her multiple chronic illnesses to function as a wife, mother, student, employee, and writer of a blog that helps many people.

I believe Endochick should get the Saint Mary-of-the-Woods Alumnae Leadership and Service Award because of her outstanding service to the endometriosis community.
Her dedication and years of volunteer service are a testament to her passion for the endometriosis cause. Her blog helps people around the globe to obtain high quality information, support and resources for managing life with endometriosis. Her blog combines information, dignity, respect, and compassionate support for patients with endometriosis and their loved ones.

I am honored that Endochick asked me to write this letter because it gives me the opportunity to publicly acknowledge her hard work and dedication to the endometriosis cause. Her passion and determination to support and educate the community about endometriosis are unmatched. Her service to the endometriosis community is invaluable. She is a role model to others. She balances life as a college student, mother, wife, writer, and volunteer with grace and wit. Her blog helps many.


This post was written a couple of weeks ago but I'll include the last section here to remind people about our awareness work for endometriosis on twitter...

Using twitter for promoting Endometriosis Awareness Month:

Endochick coined a slogan tonight that we would LOVE
for people to start tweeting and retweeting in honor of Endometriosis Awareness Month in March:

Endochick's slogan is:


I sent numerous tweets tonight like this:

Endochick's brilliant idea MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS! Great slogan. Who needs basketball? Pls retweet!#endo

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

Wellsphere: How The Health Blogosphere Was Scammed

Wellsphere uses unpaid content from health bloggers. Dupes people into handing over their writing throwing around a Stanford label and pseudo awards. Now bought by HealthCentral.

read more | digg story


'Jeanne's Endo Blog': How Do I Thank Jannie Funster For Her Hard Work?

Wow! I got an email today from my buddy Jannie. I don't know Wordpress (yet!) but I am guessing that adding a petition link such as the one Jannie has added would be a challenge. She didn't just link to the petition any old way. Check out her blog at the top right "under the eye" to see what I mean...

Click here to see Jannie Funster's awesome petition link with an eye-catching visual!

Is that cool... or what?

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

'Jeanne's Endo Blog' Thanks Tammey Of The Yahoo Group "LupusAutoimmuneSisters"

Sometimes people are just plain nice.

Recently, I met a woman on twitter named
Tammey. We exchanged several messages and she was very friendly. So, I asked her the same question I ask everyone these days, "will you sign my petition?"

She kindly agreed to do so, despite the fact that she does not have endo. Then she volunteered to share the petition with her LupusAutoimmuneSisters support group and ask them to sign it too!

Twitter users, please send her a thank you tweet:

Sometimes people are just plain nice.

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


"Jeanne's Endo Blog" Thanks "Yaya Stuff" And "My Journey With Endometriosis"

Thank you to My journey with Endometriosis for posting the endometriosis awareness petition!!

Also, a belated but very heartfelt thank you to Alicia of Yaya Stuff for starting the petition-link-posting trend!

Will you be next to post it?

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

"Jeanne's Endo Blog" Thanks Laurie From "A Chronic Dose" For Helping Us Increase Endometriosis Awareness!

Thank you to Laurie Edwards for helping us spread the word about endometriosis here:

Happenings from Around the Medical Blogosphere

With so many of us working together to create awareness, we really are making the most of Endometriosis Awareness Month!


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

'Jeanne's Endo Blog": Thank You To Sonja Of The "Don't Scare Easy" Blog!

Let's hear it for Sonja of Don't Scare Easy! She posted the endometriosis petition link on her blog.

Thank you, Sonja!!

Will you be next?

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

'Jeanne's Endo Blog': See What's Buzzing Over At "IC Disease"

I know of women with endometriosis who have had surgical mesh. I thought this article might be of interest to some of you...

See this article from Sandy at IC Disease:

Severe Complications with Surgical Mesh for Gynecological Surgeries

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

'Jeanne's Endo Blog': Let's Have One More Hand For Sandy Of Fighting Fatigue & IC Disease!

Is it my birthday?

You may have seen a couple of posts ago that Sandy of Fighting Fatigue kindly wrote an entire blog post promoting our:

Endometriosis Awareness Petition

Well, Sandy has also posted the endometriosis petition on her other blog:

IC Disease

I am a long time follower of Sandy's fantastic blogs. Having fibromyalgia and interstitial cystitis myself, I found her blogs early in my blogging days and promply added them both to my blogroll. Pssst! Go check out Sandy's great blogs!

I deeply appreciate Sandy's help in promoting the endometriosis petition on both of her blogs.

Oh, and did I mention that she's even plugging the petition on Facebook?

Thank you, Sandy!!!!

Related link:

Tuesday, March 10, 2009 'Jeanne's Endo Blog': Sandy From Fighting Fatigue Has The Endometriosis Awareness Month Spirit!!

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


'Jeanne's Endo Blog': Why I'm Glad That Cassie Germsheid Of Mamas On The Web Is In My Corner...

I am writing the following post in support of my friend, Cassie Germsheid.

While I am writing this post in the hope that I will refer some business her way, she is not even aware that I'm posting this. I just wanted to stop and take a moment from this busy Endometriosis Awareness Month to acknowledge her talents, her work ethic, and to say I'm thankful for her support of the endometriosis cause... despite the fact that she doesn't even have endometriosis! Cassie is the type of person you want in your corner. I'm thankful to her for being one of my first "blogging friends" in this incredible journey of blogging.

As some of you are already aware, I will be switching from Blogger to Wordpress. My blog is also being redesigned. Luckily for me, I have an amazing blogger helping me through this process! I began blogging in June 2008. Way back in the beginning, I had the good fortune to connect with Cassie Germsheid.

Cassie helped me out at a time when I was very inexperienced at blogging. There were some very basic, simple aspects of blogging that I simply hadn't figured out yet when I met Cassie. She kindly gave me some tips that made life easier for me.

She is extremely savvy regarding Internet marketing. Her niche audience is anyone wanting to start up his/her own blog, switch to Wordpress, transfer to his/her own hosted blog, etc.

While her blog Mamas On The Web targets the WAHM (work at home mom) audience, Cassie works with all sorts of people on projects.

While I've learned a fair amount since last June when I began blogging, I personally would be too nervous to switch my blog from Blogger to Wordpress without help. I simply have too much data to risk losing anything. I have poured too much time and energy into my blog to take chances with a learn-as-I-go type of transfer. This is my 231st post. As many of my readers are well aware, I am totally exasperated with Blogger! From my sidebar which occasionally disappears (in whole or in part) to my blog's occasionally missing footer... from the Blogger following option that rarely works to the two days last week when my blog posts all disappeared from my screen... from not being able to insert images because Blogger was being finicky to not being able to save/publish my posts without getting errors all the time, I have had enough.

Granted, not everyone has quite as many "Blogger bugs" as I do. Personally, I think I got a Blogger version that was a "lemon". It is what it is. I know I'm not alone with these bugs, though, because I have Googled issues like "disappearing sidebar" and found others. Also, when I have posted about my Blogger problems, people have gone on to find my blog. (My FEEDjit traffic meter has shown many a search for issues like "disappearing sidebar").

In any event, I am more than ready to make the switch and I know that the more data there is to be switched, the more complicated the switch can be. Had I known about Cassie initially, I would have started on Wordpress in the first place.

However, I'm grateful that I know Cassie now and I'm thankful to her for her expertise, honesty, and organizational skills. With her help, I'm going to have my own hosted blog on Wordpress and I can't wait!

If you're like me and you want to switch to Wordpress, I recommend Cassie. She is very helpful and refreshingly ethical.

If you write a high-quality blog and monetizing it is just not your strong suit, Cassie Germsheid is a great person to consult with... She has been working online since March 2005. Having had regular communication with Cassie since the early days of my blog last summer, I can tell you that all of that experience shows.

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


'Jeanne's Endo Blog': Sandy From Fighting Fatigue Has The Endometriosis Awareness Month Spirit!!

Here is a huge THANK YOU to Sandy at Fighting Fatigue!!

Check out her post!

Sign Petition to Raise Awareness During National Endometriosis Awareness Month

It would warm my heart if we can get the petition posted like this on other blogs!! Please consider doing so to increase endometriosis awareness!

Now, if you're reading this post and you have not yet read my previous post,
Monday, March 9, 2009 (VIDEO) 'Jeanne's Endo Blog': Vlog #3 Endometriosis Awareness Month (Week One Recap) & Acupuncture Intro Video, please go check it out.

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


(VIDEO) 'Jeanne's Endo Blog': Vlog #3 Endometriosis Awareness Month (Week One Recap) & Acupuncture Intro Video

It's March 9, 2009 and last night I recorded my third video. Vlog #3 includes a recap of Week One of Endometriosis Awareness Month. I also do a brief introduction about acupuncture. Acupuncture has helped me immensely for several years now! I'll be blogging more about acupuncture in the future because it deserves some "front and center" attention but I thought I'd touch on it today.

I didn't realize until today that 10 minutes is the maximum time allowed per video on YouTube. So the video this time is split into two parts. (Thanks goes out to my hubby for helping me get the video split apart and uploaded despite computer problems (some sort of malicious file had attacked my computer and probably has a great deal to do with all of the PC problems I've been having) and my not realizing the length would cause the video to get rejected by YouTube). I apologize... I'm still in the learning curve for making videos. So, please bear with the 2-part format for Vlog #3. I'm calling them both Vlog #3 (Parts A and B).

There are several people I mentioned in the Vlog #3 who I'd like to provide links to here:

Endochick of 'Endometriosis: The Silent Life Sentence'

Melissa Ralston of 'Endometriosis: Facing the Battle Head-On'

'My Journey with Endometriosis'

Steph of 'Living with Endometriosis'

Kelly Damron of 'Twin Peas Blog and Podcast'
(Infertility blogger)

Cassie Germsheid of 'Mamas On The Web'
(Amazingly supportive & talented blogger who is currently helping me redesign my blog in preparation for a transfer to Wordpress, supporter of the endometriosis cause who has helped us with our twitter campaign for endo awareness)

Rosalind Joffe of cicoach.com
(Generous supporter of the endometriosis cause who has helped us with our twitter campaign for endo awareness)

Alicia of 'Yaya Stuff'
(Amazing blogger and friend who advocates for patients dealing with infertility, endometriosis, miscarriages, and adoption)

By the way, you can still help Alicia with her Adoption Adventure Fund! There is another raffle (with cool prizes) going on now!

I have never in my life met anyone who wants to be a mother more than my friend Alicia.

For details about the raffle prizes, please see Alicia's site: Yaya Stuff. She has lots of cool prizes so go check it out!

Alicia & Josh's Adoption Adventure Raffle Ticket Giveaway.

Josh and Alicia are more than halfway through the adoption classes for the foster-to-adopt process they are pursuing now.

Let's fill this house!!

Finally, have you been tweeting endometriosis messages using #endo? I counted them last night and there have been 335 tweets in the 9 days since I sent out the first one on twitter. Those endometriosis tweets are really catching on!

If you are on twitter, please use #endo at the end of each endometriosis-related message you send out and help us create awareness for endometriosis plus make it easier for people to find endometriosis posts and other information.

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

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