Category — Endometriosis

Recently, I asked a friend who is struggling with infertility if her husband might be interested in writing a guest post here regarding Father’s Day and infertility. I floated this idea out a few weeks in advance because I knew that it would probably require some thought on his part (as to whether or not to write such a post). After all, it’s an emotional topic.

My friend later got back to me and let me know that her husband had given it some thought and had decided not to write such a post at this time. Apparently, though, my having posed the question about the guest blog post triggered some conversation for this couple.

I try not to make generalizations about one gender or another but over the years I have heard many cases of men who talk less about their infertility struggles than women while still being profoundly affected by the struggles. I myself believe that the way our society socializes boys and girls to grow into men and women has a lot to do with how readily men discuss their feelings about the infertility struggle… or not. Many men I know of (who are struggling with infertility) spend less time talking about it than their partners. However, that does not necessarily mean that they spend less time thinking about it or feeling the many emotions associated with infertility struggles.

I was reading the article Father’s Day and the Fertility Challenged. I think there are some men who seem less fazed by the hoopla surrounding Father’s Day than, say, their wives might regarding Mother’s Day. I understand the author’s point that the marketing for Father’s Day is typically more subtle than for Mother’s Day. At the same time, I wonder how many men are out there hurting, grieving, and suffering in silence. I wonder how many men don’t feel comfortable fully sharing their feelings of grief and loss.

Perhaps they have difficulty articulating these feelings? Perhaps they are watching their wives deal with the grief and loss and they wish to spare them additional pain? Pamela Mahoney Tsigdinos touched on this topic (how her husband coped) in her award-winning book Silent Sorority.

I think one of the most important things to remember is that men are affected profoundly by infertility struggles. They may or may not have easy access to the resources that can assist them in coping with their situation. Again, I don’t wish to over-generalize but based on my observations it seems that women struggling with infertility tend to have a better support system than men for dealing with it.

In the course of writing this post, I came across numerous articles regarding the topic “Father’s Day can be tough for men with male factor infertility”. While I have no doubt that this is true, I certainly don’t think that the challenges associated with infertility struggles (for men) are limited to those with male factor infertility. Whether infertility is determined to be male factor, female factor, or a combination of both… the challenges of infertility affect people in all of the above groups.

So, going back to the title of the post… Is it easier for men to deal with parenting holidays? I would argue ‘no’. Women struggling with infertility who undergo infertility treatment have to deal with hormones, injections, and various invasive procedures. This certainly adds layers of additional stress. At the same time, the men who love them and are by their sides throughout the treatment process are on the same complicated journey. They are there supporting and worrying about their wives.

It’s important not to overlook the feelings of men who struggle with infertility. If you know someone struggling with infertility and/or pregnancy loss, be aware that holiday weekends like this can be especially painful times. For couples who have struggled with miscarriages, holidays like this can be especially tough. Your support for your friends, co-workers, and loved ones who struggle with infertility may well make a frustrating, challenging, heartbreaking time just a little easier.

Finally, here is a link from RESOLVE: The National Infertility Association that some may find helpful:

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Given that I have not been feeling well enough to write a new blog post and the fact that I always write a post regarding Mother’s Day, I decided to post something short with a link to something I wrote last May. (I have already noticed many visitors to Mother’s Day posts from years past). With 1 in 8 couples affected by infertility, odds are good that you know someone struggling with infertility (whether you know it or not). Insensitive remarks and judgmental comments often drive those struggling with infertility to keep their struggle private.

This Mother’s Day, please show compassion to the women – and men – around you who are childless (whether they are childless by choice or not). We live in a child-centric society and being childless can feel very isolating. There are all sorts of reasons that people are childless. The last thing childless people need is to be judged by others or condescended to. Sadly, the childless people I have interacted with tend to get heaping doses of both judgment and condescension. Some people’s comments aren’t intended to be malicious but they are hurtful nonetheless.

If you have a friend or loved one who is struggling with infertility and you don’t know what to say/do to be supportive, the best thing you can do is take cues from that person/couple. They may wish to talk about it and they may not. They may be happy to tell you what is helpful and what is not. They may wish not to discuss it at all. Everyone is different and one person’s process for dealing with loss may differ quite a bit from another’s. By asking your friend or loved one how you can help, you show them that you care. Bear in mind that they are most likely inundated with unsolicited advice. This is why taking cues from them is really important.

This is a difficult time of year for anyone who has suffered a loss that results in Mother’s Day bringing up painful memories. This is not limited to those experiencing infertility and/or pregnancy loss.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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I haven’t written a blog post in a couple of weeks because I have had a migraine for 3.5 weeks now and I have been offline the vast majority of the time.

However, I did want to mention that this is National Infertility Awareness Week 2011. Please click the logo below for more information from RESOLVE: The National Infertility Association:

Infertility is a disease that affects 1 in 8 couples of childbearing age. Odds are good that you know people who are struggling with infertility (whether you are aware of it or not).

“Infertility is a disease that results in the abnormal functioning of the male or female reproductive system. Both the American Society for Reproductive Medicine (ASRM), World Health Organization (WHO) and the American College of Obstetricians and Gynecologists (ACOG) recognize infertility as a disease”. [Source: RESOLVE].

Please consider learning more about infertility. It is common for well-meaning people to make hurtful and insensitive remarks to people who are struggling with infertility. (Hopefully increased awareness will make this phenomenon less common).

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Knowledge is power. Chronically ill patients often spend an enormous amount of time and energy educating themselves about their illness(es) and networking with fellow patients. This increases their knowledge. Their personal experience as patients informs them too. For lack of a better term, let’s call this “patient power”.

While this post and the paper it links to talk about endometriosis, much of this could relate to any number of chronic illnesses. If you do not have endometriosis, please stick with me because you may find this post just as relevant to you with regard to another illness (or other illnesses). This is more about accessing health-related information than anything. Before I share a link to an article that Dr. Neal co-authored, let me share some background from my personal experience regarding searching for health-related information.

When I was diagnosed – via laparoscopic surgery – with endometriosis in 1992 (after living with undiagnosed endometriosis for 10 years), my doctor gave me next to zero information about endometriosis. (The very small amount of information he provided was a skimpy brochure from a pharmaceutical company pushing its drug. It was basically a sales pitch brochure. That’s all I was given). After that post-operative appointment, the very first place I went to for information was my trusty local library. This library had never failed me before. It was well-stocked and had a top-notch staff. I had literally never had a problem finding information there… until that day. I searched for information on endometriosis in the library and found nothing. I then requested assistance from one of the librarians. She wasn’t able to find any information on endometriosis either.

I left the library that day empty-handed and discouraged. As this was shortly before I had discovered a local support group, I had no one to talk with about endometriosis. (The doctor who diagnosed me ended up being less than helpful and I subsequently switched to a much better-qualified specialist with far greater knowledge about endometriosis). Back then, searching for health information online wasn’t an option for me either. (Yes, my younger readers… There was a time when patients couldn’t just search the Internet for health information. Try to imagine that)!

Anyhow, my first breakthrough at finding what turned out to be reliable information was gleaned after spending several hours sitting on the floor in the aisle of a Barnes & Noble bookstore combing through stacks and stacks of books (and copying down toll-free numbers of resources out of the backs of a couple of books I found after a long and tiring search). I exhausted kneeling and squatting in the aisles early on in my many-hour odyssey for information at the bookstore. It quickly became evident that I was going to be there for awhile! (Even my newly diagnosed self was able to determine that purchasing those books would not have been a good bargain for me. My budget was limited and the books were not exclusively about endometriosis. Basically, endometriosis was literally a footnote in these books. So, I just copied down the information I needed).

I quickly realized that access to a university library was imperative. By the time I was diagnosed with endometriosis, I was 23. So, I had already graduated from college. Fortunately, I had some wonderful friends who helped me get access to medical journals and such. I wanted to read anything I could get my hands on about endometriosis.

Fast forward from the early 1990s when I was diagnosed with the endometriosis I’d already lived with for 10 years… to the present day. If a patient were to walk into a library nowadays looking for information about a particular illness (such as endometriosis), what type of resources do you think most librarians would refer patients to? Would they point them to peer-reviewed medical journals? Would they direct them to books written by physicians? Would they make any mention of the Internet as a source for health-related information? If so, how would they determine what sites to point people to?

Diane M. Neal, PhD and Pamela J. McKenzie, PhD have written a fascinating paper.

I strongly encourage you to check it out, regardless of whether you have endometriosis or not:

“Traditional” sources of health-related information are obviously important but, in this paper, they make a case for the value of endometriosis blogs and other online sites as also being potential sources of valuable information. There can be significant differences in the quality of information from site to site. Essentially, Dr. Neal and Dr. McKenzie are highlighting the fact that endometriosis blogs (and other sources of endometriosis information online) should be considered as potentially valid sources when referring information seekers to endometriosis resources. Information from the medical community is important but information from the patient community matters too.

In my opinion, it is very exciting that this paper is a tool for educating librarians about how to incorporate health blogs (such as endometriosis blogs) as valid sources of information for people. As anyone who reads blogs or visits online support groups/forums can attest to, patients’ experiences really do have value and the community atmosphere online can give valuable emotional support as well.

When I asked Dr. Neal about the intentions of this article, she said, “what we were trying to do with the article was broaden the scope of librarians’ thinking beyond standard – or what we call ‘biomedical’ resources – like reference books, PubMed and such” and to “demonstrate how people’s concept of ‘authority’ is changing due to the social media world”. She said the new idea in the article, from an information science research perspective, was “affective authority”:

“In addition to making claims about the cognitive authority of sources, the authors found that bloggers made and contested claims for what might be called affective authority, the extent to which users think the information is subjectively appropriate, empathetic, emotionally supportive, and/or aesthetically pleasing”.

For me, it is really quite exciting to witness a situation where health-related information that is written from patients’ perspectives is being appreciated as a valuable source of information and support for patients (and others) seeking it.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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While I had many ideas for additional topics to cover this month, time has flown by and my energy has been limited. I decided to do a recap of the Endometriosis Awareness Month 2011 posts for those who may have missed one or more of them. First we heard from Dr. Diane Neal and Endochick in a guest blog post called:

Then I wrote this post about something I call “yellow-washing”:

Next I wrote this personal post regarding undiagnosed teenagers struggling with what may be endometriosis:

After that, I wrote about the importance of support here:

Following that, I talked about being sidetracked from Endometriosis Awareness Month by migraines:

Then, I wrote about the important topic of suicide prevention:

Finally, Jenn did a guest blog post about how chronic illnesses like endometriosis can affect one financially:

I would like to thank Diane, Endochick, and Jenn for taking the time and energy to write wonderful guest blog posts for Endometriosis Awareness Month. While I hoped to do more this month than I have, I have learned over the years that it isn’t wise to force my body beyond its limits. So, the many days this month when my body essentially told me, “no” when I asked it to do something, I didn’t force it. I listened to it because the consequences of not listening to one’s body can be pretty unpleasant.

I would like to thank everyone who has signed the petition and/or shared the link on social media:

Endometriosis Awareness Month may be drawing to a close but we collect signatures on that petition year-round. So, please continue to share that link on Facebook and Twitter. Just this month the petition gained 56 signatures. That’s not bad! Many who signed elected to use the optional field for comments. Reading through those comments, one cannot help but be moved and inspired to action. There is so much work to be done! Let’s keep getting the word out to people. Here is that link for the petition once again:

Thank you very much to everyone who has worked so hard and so passionately to spread the word about endometriosis, to foster awareness about it, and to take a close look at endometriosis organizations to ascertain whether they are advocating for patients as they claim. Taking the time to research organizations before supporting them (financially or otherwise) is worth the time and effort. Sadly there are organizations that purport to advocate for endometriosis patients but upon a bit of investigation, it becomes apparent that looks can be deceiving.

Thank you to everyone who is working to spread the facts about endometriosis and working to counter endometriosis misinformation.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Previously this Endometriosis Awareness Month, you heard from Diane and Endochick in Voices On Endometriosis about ways in which endometriosis has impacted them. I had also asked my friend Jenn if she’d be willing to guest blog this month. Today, I am honored to share what she has written about the financial implications endometriosis has had for her.

Jenn is chronically healing from Stage IV endometriosis. She has a Master’s Degree in Liberal Studies with focuses in Conflict Management, Human Development & Family Studies and Sociology. She is a Certified Coach. She started her endo blog last year to chronicle her journey and struggles with endometriosis. She is always searching for alternative, complementary treatments and self-care options for women.

I was diagnosed with endometriosis six years ago after years of pain and misery. My life has changed in many ways because of my disease. Lately, the financial consequences of my endo weigh heavily on my mind. The largest financial toll has been over the last year.

I was incapacitated by my endometriosis symptoms in January 2010. My endo pain flared & raged and didn’t relent for months. I was unable to work. When my FMLA time ran out, I was given two medical leave extensions from my employer. I was healing from major surgery when my second extension expired and I was fired from my job. My employer said I “voluntarily abandoned” my position in a shady attempt to prevent my unemployment benefits.

I would have been able to return to work the week after I lost my job. I fought through two appeals with my former employer to receive unemployment.

The majority of our financial burden fell on my husband. Without him, I would not make it financially. My monthly unemployment amount isn’t enough to even pay my mortgage, not to mention my other bills. I am not complaining; I am grateful for the unemployment benefits. Still, the truth is, it’s tough to survive on the amount I receive. When my weekly benefit amount was determined, three months of my FMLA time were factored into the equation. In other words, three big fat zeroes were included in the average. Those zeroes did not help my cause.

I have been well enough to work for months but I haven’t had any luck finding a job. As the blank space widens between the present and my last job, I know my chances of finding work grow slimmer. How do I explain my joblessness to potential employers? It’s quite a dilemma. There’s no good response. The truth won’t help me secure a job. It’s hard to imagine an employer excited to hire a person who was too sick to work for six months. Besides, my medical condition and history should be private. The only other option is to be untruthful, but there isn’t a lie I can conjure to adequately explain my situation. Employers don’t like gaps in employment, period.

Now, add in all of the medical bills I acquired over the six month period — two surgeries, three ER visits, several doctors’ appointments, and expensive medication. Trust me, the math is depressing. When I was fired, I had just met my insurance out-of-pocket maximum for the year. I had to start all over with my new insurance. (My difficulty finding insurance coverage is a whole other story). The only insurance I was able to obtain comes with a hefty $5,000 deductible and they don’t pay a penny until I hit that amount. Ouch. Since I have no clue how my endo will progress from this point, I have no idea what medical needs may arise. Any medical care will be expensive. I guess I was lucky to even find an individual insurance plan though; my husband was denied coverage by every local insurance company due to a pre-existing condition.

My list of financial worries goes on and on and on. I don’t know if I’ll ever get back on track and it’s terrifying.

Most days, I don’t let money concerns consume me. I remind myself of all of my blessings. I try to keep it all in perspective and remember it is just money. However, I do have days when the weight of my financial worries collapse upon me and make it difficult to breathe. I need to have faith and believe I will make it through this tough time. When I get stressed about money, I have to remind myself that my financial troubles pale in comparison to the physical and emotional pain my endo symptoms have caused me.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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In the past, I have written many posts about the topic of suicide and about the frequency with which people search phrases like “endometriosis and suicide” before landing on my blog.

Endochick recently wrote this post: Why we need awareness #3.

While the three hour sampling of searches mentioned in that post did not include any about the topic of suicide, I know from talking with Endochick that her blog gets daily traffic on the topic, as does mine.

Since it is Endometriosis Awareness Month and multiple blogs get daily traffic on “endometriosis and suicide”, I decided that an important part of blogging for Endometriosis Awareness Month is to cover this topic.

There is more information about suicide HERE, HERE, and HERE.

Finally, I wrote about suicide prevention in general HERE after taking an informative class on suicide alertness.

If you are having thoughts of suicide, I urge you to contact one of the hotlines listed above. Please click the graphic above that pertains to your geographical area.

For more information on creating endometriosis awareness, please click below. Awareness is vital and help is available for those having thoughts of suicide. Please help us spread awareness about this serious illness.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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If you guessed number 3, you win the prize. Unfortunately, I have no prizes to give out. So, hopefully you will be satisfied to have as your prize the knowledge that you guessed right. Did the blog post title give it away?

Hopefully tomorrow’s acupuncture session will expedite getting this migraine to pass so that I can get back to working on Endometriosis Awareness Month. In the meantime, please sign and share the endometriosis awareness petition (see right sidebar for link).

P.S. For those wondering, my youthful skin took a hike awhile back and I don’t wear makeup. So, that leaves number 3 by process of elimination. While I cannot prove the woman pictured has a migraine, answer 3 is most logical due to process of elimination. Yes, I have insomnia that is making me punchy now. Thus the silly post.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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For 29 years, I have lived with endometriosis. Nineteen years ago this month, I was diagnosed with endometriosis via an outpatient surgery called laparoscopy. (By the way, this type of outpatient surgery is the definitive method for diagnosing endometriosis).

In the first ten years that I lived with endometriosis, I knew something must be wrong but I didn’t have a name for it. It wasn’t until March 1992, at the age of 23, that I was properly diagnosed with endometriosis.

Looking back, I am truly amazed at what I experienced in those first 10 years. That picture of the woman on the floor above triggered memories for me of how much time I spent lying on the floor in years past. Lying on the floor of the bathroom was a common thing for me because nausea and vomiting were a major problem for me in the early years.

I have written about endometriosis in regard to teenagers HERE and HERE. As you can see from the outpouring of comments on these posts, women who have lived through teen years with endometriosis symptoms are passionate about supporting girls who are currently going through similar experiences. They are eager to help these girls because they remember all too well what it felt like to live with endometriosis as a preteen or as a teenager.

I’ve also written previously about some of my own personal (least favorite) memories of being a teenager living with endometriosis.

Also, I was interviewed during Endometriosis Awareness Month in 2009 by Amy Jussel of Shaping Youth for the purpose of helping preteens/teens and their parents know what to look for, when to suspect endometriosis, and what to do about it:

I am passionate about the topic of endometriosis awareness. I am particularly interested in the well-being of preteens and teenagers who are living with undiagnosed endometriosis because I remember what it felt like as if it were yesterday.

Blacking out from the pain caused by endometriosis, vomiting with periods, excruciating abdominal pain that affected my quality of life in profound ways, severe hemorrhaging, frightening blood clots, intestinal pain, bladder pain, and so much more were my “normal” for many years.

When I was in high school, there were many times that I forced myself to go to school but was then physically unable to make it through the day. I was a straight A student and I WANTED to be in class. Nevertheless, any time I would reluctantly drag myself to the nurse’s office because my body refused to cooperate with my strong desire to be in class, the nurse always treated me as if I were some slacker who simply wanted an excuse to skip class. Nothing could have been further from the truth.

Once the nurse gave up on me being able to go back to class and she let me call for a ride, I would wait out by the front door of my high school. There were two stairways… one on either side of the short hallway that led out to the front vestibule area. There was a heater vent there. My high school didn’t look as dingy as that picture above. However, that heater vent reminded me of how I would sit on the floor, curled up and bent over in front of the vent as I waited for my ride.

It seems like the worst of these times in high school happened during senior year because many of the times I waited for a ride, my friend Nancy was there, by my side… keeping me company, cheering me up, and waiting for our ride. (There was some sort of rule senior year that you could schedule your study hall for last period and be able to leave before regular dismissal time. Somehow we managed to leave early without getting in trouble thanks to that awesome rule). I honestly don’t know what I would have done in my teenage years without Nancy’s support. She was always there for me and I will be eternally grateful for her support during one of the most challenging times in my life.

Eleven years after we graduated from high school, it was Nancy who stood by me as my maid of honor.

In any event, I really don’t want to get too dark and dreary talking about how difficult is was to be a teenager living with undiagnosed endometriosis. Quite the contrary. I decided to write this post in the hope that, like the other posts I have written about teens living with suspected endometriosis, teens and/or their parents who are searching the Internet for information might find this post and hear this message:

Without providing an elaborate list of the many steps I have taken between my teens years and now to cope with endometriosis and manage my symptoms, I’ll just say (in a short, simplified list) that after having multiple surgeries; trying various medications; investigating alternative medicine; finding that certain things (i.e. acupuncture!!!) have helped me greatly; and finding doctors who are knowledgeable, highly skilled, trustworthy, compassionate, and ethical… my endometriosis is much better-controlled now than it was years ago.

There is no cure for endometriosis. However, there is hope. There are a great number of treatment options (some of which are generally not mentioned by Traditional Western medical doctors) available. It takes time and persistence to learn about everything that is available (and there is a minefield I will generically label “scammers” to watch out for) but it IS possible to get pain relief or reduction and more.

One caution: To elaborate on what I mentioned above, there are many scammers who prey on endometriosis patients. There are doctors who call themselves “endometriosis specialists” but who I would not want treating me! It is absolutely imperative to find the doctor who is right for you. This process can be challenging and confusing. Just bear in mind that some doctors are very hyped up as being “experts” but that doesn’t necessarily mean anything. There are doctors who are great at self-promotion but that doesn’t necessarily mean that they can deliver on their promises.

Living with endometriosis is challenging. Getting diagnosed in the first place is typically challenging too. When you’re dealing with an illness where 10 years from onset of symptoms to diagnosis is the average, there is obviously much room for improvement in getting people diagnosed earlier.

No matter how challenging endometriosis can be (to get diagnosed in the first place or to live with it once diagnosed), things can get better. There are options available for managing symptoms. They may be difficult to find. What works for one patient may not work for another. Researching and making sure that options are safe and effective (as opposed to marketing scams and such) is very important. Mutual support between fellow patients is crucial and incredibly helpful.

My point is not to have a fairy tale ending here. There is no cure for endometriosis. In that sense, there is no fairy tale ending. However, things can get better. It is important to have hope. I am 42 years old. I have lived with endometriosis since I was 13 years old. That’s a large proportion of my life! I remember what it felt like (in my teens and most of my 20s) to lose hope, to be very scared, to be afraid I would never get pain relief, etc. I don’t feel that way anymore.

I have a sense of peace now that I didn’t have in my younger years.

Are things always peaceful? No way! Just ask any of my friends or loved ones. I can vent with the best of them. However, when I compare my outlook now with where I was at in my teens and 20s, it’s like night and day.

Despite the fact that I have been diagnosed with a large number of chronic conditions since my endometriosis was diagnosed in 1992 (many of which are co-existing conditions to endometriosis), I don’t feel the sense of desperation and hopelessness that I used to feel. Years of mutual support, support groups, meeting people online who “get it”, learning from other patients about things I never would have learned about from my doctors, doing my own research/reading, advocating for myself, and working with other patients to try to increase awareness of this serious illness have left me feeling empowered.

Please sign the endometriosis awareness petition. The comments left on it in the optional comment field by some of the signers bring me to tears. The more people work together, the better off endometriosis patients will be. By the way, thank you to everyone who has been sharing the petition link on Facebook and Twitter and those who have Facebook ‘liked’ the petition page. The number of people signing the petition has really picked up recently. Let’s keep it up!

An estimated 89 MILLION women & girls worldwide (conservative estimate) have endometriosis!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Yesterday, I posted the following Facebook status. I didn’t take posting it lightly. After all, I am well aware that some of my own Facebook friends might not understand what my point is or agree with my perspective. Nevertheless, I decided it was a topic well worth discussion. So, I posted this comment yesterday afternoon:

CAUTION: Beware of yellow-washing. (Think pinkwashing only with yellow in its place).

Yesterday, as the first day of Endometriosis Awareness Month drew to a close… I found myself seeing an analogy between the pinkwashing phenomenon seen with breast cancer awareness and what struck me as a similar phenomenon involving the color yellow and endometriosis.

First, for those who are unfamiliar with the concept of pinkwashing… here is a definition of the term pinkwasher, courtesy of Think Before You Pink:

Pinkwasher: (pink’-wah-sher) noun. A company that purports to care about breast cancer by promoting a pink ribboned product, but manufactures products that are linked to the disease.

So, one may ask, what does all of this have to do with endometriosis? Well, I have certainly seen companies claiming to help the endometriosis cause that have pushed or do push products linked to (possibly causing?!) infertility, reproductive problems, endocrine disruption, etc. This is nothing new. Does this get me really fired up? You bet.

I noticed online yesterday that site after site and organization after organization (festooned in yellow ribbons or selling paraphernalia that purports to “increase endometriosis awareness”) were, in some cases, making money off of enthusiastic patients who are, understandably, aching for increased awareness. (I saw sites raking in big donations and I saw sites pushing “endometriosis awareness” merchandise. I also saw what smacks of data mining on Facebook. How better to market “endometriosis awareness” wares than to create pages that attract patients? But I digress). There wasn’t an overt exchange of funds in all cases. However, the parallels I noticed yesterday between pinkwashing and, for lack of a better term, “yellow-washing” were, to me, undeniable.

I wish to be very, very clear that my intent is not to upset any endometriosis patients or dampen their enthusiasm at wearing yellow shirts and/or ribbons. It wasn’t very long ago that I was fairly decked out in yellow myself (or another color for another awareness month for another of my chronic illnesses). The thing is that over the course of time (nearly three decades of living with chronic illness), I have come to view things differently.

As I witness the effects of pinkwashing and I see what looks like the advent of yellow-washing unfurling for endometriosis, I can’t help but wonder whether the sea of yellow I encountered yesterday (in the course of just one day working online) – some of which was linked to sites that DO receive money – is helping the endometriosis cause or not? Again, I do not wish to upset any fellow patients who are excited and enthusiastic about “getting out the yellow” for Endometriosis Awareness Month. I just can’t help but question whether yellow-washing will be to endometriosis what pinkwashing is to breast cancer.

Will yellow-washing follow in the footsteps of pinkwashing? Are there more effective and/or less harmful ways of promoting endometriosis awareness besides assisting yellow-washing to grow into a pinkwashing mimic?

A friend of mine tells me that her husband, whose mother died of breast cancer, is totally frustrated with the pinkwashing phenomenon.

Dr. Diane Neal, who you may have met in yesterday’s post, has written research papers on endometriosis.

Starting this fall, she will teach health information science.

She wonders “if such merchandising might be funneling much-needed research money away from worthy projects”?

Speaking for myself, I would like to see the cause (or more likely causes) of endometriosis pinpointed so that research can be focused on how to prevent it (if that’s possible), reduce the chances of potential environmental factors from making matters worse (i.e. exposure to endocrine disruptors), and find ways for the average diagnosis of endometriosis not to take 10 years.

Preventing or minimizing endometriosis may not be the massive money-maker that treating (please don’t get me started on the endometriosis treatment options currently available) or trying to “cure” endometriosis after-the-fact.

I have lived with endometriosis for 29 years now. It pains me (no pun intended) to see how little has been accomplished in the last few decades. It disturbs me to witness women going through the same “rat’s maze” in 2011 that I did starting in the 1980s and 1990s. It really troubles me to see endometriosis patients turned into cash cows (something I have written about before: Endometriosis Patients Viewed As Cash Cows?).

I think pinkwashing may well be a harbinger. Personally, I don’t care to have yellow-washing join the ranks of pinkwashing (and greenwashing, for that matter).

For more about pinkwashing, breast cancer, and organizations that seek information on how to PREVENT illness (trigger alert for my infertile friends on some of the links below), see these articles and websites:

New York Times: Think About Pink

New site: Breast Cancer Action

Environmental Working Group

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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