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...
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
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.