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 gruelling 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 andDirector 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 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 Awareness/Action Steps
American Pregnancy Association/Endo
Infertility Physician.com (article on endo/heredity)
Women’s Health/Endo (About.com)
Hi Amy,
Thanks so much for spreading the word about endometriosis! So many millions of women suffer in silence every day with chronic conditions like endometriosis and vulvodynia. Nobody talks about them, just like breast cancer used to be a taboo topic of conversation. I’m glad to see the tide turning. This will help young women to become more informed and take early action, finding communities of support and proper medical care.
We need more bloggers like you talking about this. Thank you.
Alexandra Carmichael
Co-founder, http://www.curetogether.com
Alexandra Carmichael’s last blog post..Presentation: Crowd vs. Experts
Amy,
Thank you for devoting so much time and energy to the endometriosis cause!
So many women and girls suffer in silence. As Alexandra pointed out above, we need more bloggers like you bringing these issues out into the open. No one should suffer in silence without medical attention because they are afraid to speak up about their symptoms.
This truly will help young women become more informed about this very common condition.
With 89 million women and girls having endometriosis, many of your readers may have friends or family members who have endometriosis if they don’t have it themselves.
Endometriosis patients truly need the support of their loved ones and friends.
Perhaps by spreading the word about endometriosis awareness, we can strengthen the support network for endometriosis patients themselves.
Endometriosis is so haunted by myths & misinformation. By bringing the truth to light, so many can be helped!
So… thank you very much for featuring endometriosis. It can have such a profound affect on patients. The good news is that there is more information available now than ever before. For a condition like endometriosis, connecting with fellow patients is IMMENSELY helpful!! I know it has been for me!
I just posted a reprint of this article on my blog and made certain to let my readers know about your wonderful organization and how they can help with your auction! 🙂
Thank you Amy!
Jeanne
Jeanne’s last blog post.."Jeanne’s Endo Blog": My Guest Blog/Interview Featured On "Shaping Youth". Reaching Out To Girls & Parents To Increase Awareness Of Endometriosis!
Amy,
Thank you so much for posting this wonderful interview. Jeanne is a wonderful person, and dear friend of mine. She does so much to raise awareness for endometriosis, and she has spent countless years volunteering all her time to do so. I’m so glad that through blogging she is now reaching a much larger audience and helping so many. I was a member of Jeanne’s local endometriosis support group and she is always amazing me with her willingness to help and spread the word about endometriosis.
Thank you for realizing all she has to give and for interviewing her!
Alicia
Below is the comment on left on this interview over at Jeanne’s Endo Blog:
“Jeanne,
This is an awesome interview. Great answers. So informational, as usual.
I won’t even get into Lacey Schwimmer…she’s not worth my energy today…
but as far as pediatricians…YES they should know about endometriosis!!!!!!!!!! It’s so irritating that they don’t. Most girls go to their pediatrician until they are 18!
And as far as genetics. My mom NEVER told me she had endo and 7 years of infertility until after I had both. Do you know how helpful that information would have been 10 years ago??! I mean, I knew they didn’t have babies until 7 years after their marriage, but I never realized they had been trying that whole time.
I just wish endometriosis, and all chronic illnesses, were more widely known about and acknowledged.
It’s hard enough growing up, let alone battling a chronic illness that you don’t even know you have. I think about all the times as a teen when I would have double periods every month and be curled up in a ball on my bed in pain. Girls should not have to go through this. Or if they do, they should at least know what the heck is going on with their body.
Thank you again for posting this.
Alicia”
Yaya’s last blog post..Adoption Class #10 (Whoo hoo!)
Amy,
Thanks for interviewing Jeanne and covering endometriosis and how it impact teens. As someone who had an early menarch – age of 10, I was a teen when my endometriosis symptoms began. I was told it was “just painful cramps.” I missed school every month, had to sit out of gym class, missed out on activities with friends and swimming during summer when my period came because it was so heavy. Counselor’s at school and doctors said the pain was all in my head, a cry for attention. But they were wrong. To think that teens still suffer in silence today with endometriosis symptoms is uncalled for. Thank you for your interview and bringing more awareness to the teenage population. Hopefully it can help some young women out there!
Endochick’s last blog post..How has my week been?
Dear Amy,
I couldn’t agree with you more when you state that perhaps there should be a puberty primer that includes accurate information on endometriosis.
I have survived life with this disease since I was 12, and I am now 30. I have had 3 laparoscopies, countless D&Cs for heavy bleeding and stage 1A uterine cancer, as well as too many medical tests to even mention. Like Jeanne, a wonderful friend and knowledgeable resource, I have also been diagnosed with multiple illnesses that tend to go alongside having “endo”, such as fibromyalgia, rheumatoid arthritis, and Inflammatory Bowel Disease to name a few.
I can remember clearly back to my “sex education” days of public school. Us girls were separated from the boys to discuss all things period related. The educator had made it clear that pain was a normal and expected part of the menstrual cycle. I firmly believe that this is wrong, as Jeanne answers above, that pain is an indicator of something going haywire in our body. Unfortunately for years, until I was 23, I was led to believe that I was just “too sensitive” to the normal pains that everyone feels.
This tends to create a double problem: Not only do young girls who are struggling with their first periods learn not to believe in the messages their bodies are screaming, but others who don’t suffer so badly may also come to believe that we really are “just more sensitive”. And this attitude tends to stick throughout our lives since there is a lack of information being publicly distributed to correct this myth.
I went 10 years without a diagnosis and I’m sure that it was difficult for all of my family members. Not only were my parents powerless to provide relief for me, a feeling I know too well as I watch my son struggle with epilepsy, but they had to dedicate a lot of their time and energy towards shuttling me between doctors and ERs. I have a feeling that it helped to destroy my relationship with my brother, as the attention seemed to always be on me and what was going on with my health. I don’t blame him in the least for feeling discluded, my health demanded so much resources from everyone.
This disease needs to have more public awareness associated with it. Young girls need to have accurate information and learn to trust in their bodies. Families need access to more knowledgeable resources to obtain the facts and prevent the prolonged “limbo” of getting an accurate diagnosis. In this day and age, waiting 9 years and going to specialist after specialist, shouldn’t be a reality, and yet for so many, it is. Families need the support that makes it possible to get through having a family member with an incurable illness. And yet, the tragedy is that there are very few resources that actually meet these needs for families and young girls.
Thanks again for posting on this subject.
Thank you so much for interviewing Jeanne and helping spread the awareness of endo!!
Sonja’s last blog post..Why the Lotus?
Dear Amy,
Thank you so much for featuring an article on the topic of endometriosis to mark Endometriosis Awareness month. I completely agree with the importance of getting accurate information on this illness to the public, especially catching young women who might be just starting their journies with “endo”.
As someone who started their 18 year journey with endo at the age of 12, I sure wish I had heard this word a lot earlier. I can remember vividly the days of sexual health education classes at public school where we were taught that it was normal to experience pelvic pain during our periods and that while it might look like we’re losing “a lot of blood”, that we don’t actually lose that much. I firmly believe that this causes young girls to begin the cycle of doubting themselves, of thinking that they are just more sensitive than others. I also believe that this contributes towards society’s view that perhaps us women with endo are in fact “blowing things out of proportion”. As someone who went 10 years without a diagnosis of anything to explain my symptoms, this can be devastating at any age, but especially during the teen years when our identity is just solidly forming.
Thank you again for covering this topic. I only hope that in the future there will be better education widely available in hopes that young girls won’t have to wait years for a diagnosis and feel that they must doubt the messages that their bodies are screaming at them.
Melissa Ralston’s last blog post..Off-Topic: Epilepsy Awareness Day – March 25, 2009
Thanks so much for having Jeanne here in guest post form. She has certainly done so much to help a lot of people by getting the right info out. Appreciate your helping the cause.
Thanks!
Jannie Funster’s last blog post..Potential Regalements
wow, you ladies are quite a vocal group! Jeanne is indeed covering an important topic and we’ll do what we can to see that it hits the Health 2.0 wellness circuit, as I’ve learned so much from all of you already…especially all of the ‘after the fact’ issues and the puberty onset (when most docs start asking at childbearing years) gosh…just think of all the pain and heartache that could’ve been precluded.
Ancora imparo…I am still learning. Thanks for all the wise comments, too. Oblige, Amy
Amy Jussel’s last blog post..3 Sisters Adventure Trekking: Changing the Game Through Sport
Hi Amy!
Wow! I’m still getting hits from this story. 🙂
I’m happy that we’re getting the word out… and, yes, we are vocal about endometriosis because we have to be!
There is so much misinformation in the media about endo (you may have heard a number of stories that have broken since Endo Awareness Month). There are so many myths circulating about endo. It is very troubling.
Finally, endo is big business (with those 89 million patients) and in the last few weeks (especially) there has been an alarming trend with various individuals/companies coming to view endo patients as targets.
This is very sad. Women (and girls!) with endometriosis go through enough without having to worry about being preyed upon by those who claim to be helping endo patients.
So, yes, we are vocal as a survival technique. We are vocal for those to young to speak for themselves. We are vocal because there is so very much room for improvement.
Self-advocacy is hugely important with endometriosis.
Thank you again for posting this important story.
Jeanne
Jeanne’s last blog post..Fibromyalgia Awareness Day And M.E./C.F.S. Awareness Day
Glad it’s still working for ya, Jeanne…and yes, I HAVE noticed a plethora of ‘fibromyalgia awareness’ stories in the news as of late! (now that I know there was a ‘May 12th Day’ that makes more sense to me!) I thought it was like one of those ‘if you’re looking to buy a VW, you see a VW instances!’
Anyway, hope you’re feeling better soon, Jeanne…Clearly you have quite a loyal following and the issue is much more pervasive than imagined! Curious who is doing the ‘preying’ you mention…big pharm? docs? marketers? Health 2.0? Keep me posted. Best, A.
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Amy,
I have gotten some recent hits that reminded me of this post.
Yes, fibromyalgia awareness got some nice visibility this year. As a fibro patient myself, this was nice to see.
With chronic illness (or should I say illnesses) “feeling better” is always a relative term. 🙂
As far as the preying on patients is concerned, the culprits are numerous. Big pharma sometimes does things that are wrong, yes. Some doctors do a disservice to patients by misinforming them or not knowing when to refer them to a specialist or for a second opinion, yes. There are certainly sites online that are inaccurate, yes. There is so much more, though.
Endometriosis patients are a huge target because, frankly, it’s big business.
Infertility treatment alone (infertility being one possible symptom of endo) is a huge money maker. While there are legitimate infertility treatment options out there, there are also many scams.
Whether an endo patient has infertility or not, if she is on twitter, she can expect to see an enormous amount of spam regarding endometriosis. False cures, claims that are bogus, and misinformation are rampant there.
On twitter, people track the endometriosis-related hashtags (like the #endo one I started a few months back) and send messages out with them to attract endo patients’ attention. Some of them are INFURIATING!
Facebook users are targets too. In the case of Facebook, those preying on people tend to access the online endo support groups. One individual posed as a doctor and befriended endo patients… only to engage in very inappropriate behavior after that.
Organizations operating in the name of medical research on endo may or may not be ethical companies to deal with.
The list goes on. There are so many people and companies preying on endo patients, it’s hard to know where to start.
Whew! That was a longer answer than I anticipated going in but there is so much of this going on that endo patients really have to be skeptical, do their research, and check information rather than taking everything at face value.
Hope you are well, Amy!
Jeanne
.-= Jeanne´s last blog ..Peace Sign =-.
Amy,
Wow! It has been a long time. I received a blog comment today from someone who believes she has endometriosis and who tried to talk with her mother about it but her mother is embarrassed to discuss her symptoms. In the course of replying to her blog comment, I found myself referring back to this post.
Thank you for all the great work you do advocating for young people!
Jeanne