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11/11/2008

Endometriosis Blog: Letters And Petition Sent To Oprah And The View To Create Awareness & Understanding About Endometriosis

Below is the letter I sent to Oprah. Since there is a character limit on emails to Oprah & since there is no option to include the petition as an email attachment, I snail mailed it.

A similar letter was sent to The View .

PLEASE KEEP ADDING SIGNATURES TO THE PETITION!!! I AM SUBMITTING NAMES NOW IN AN EFFORT TO GET A FEATURE ON ENDOMETRIOSIS TO AIR AS SOON AS POSSIBLE BUT THIS DOES NOT MEAN WE CAN'T CONTINUE TO ADD NAMES TO:

Create Endometriosis Awareness & Understanding Petition

Here's my letter to Oprah:

Dear Oprah,

For 26 of my 39 years, I have suffered symptoms of an illness called endometriosis. I have had 7 abdominal surgeries since 1992.

This illness affects an estimated 5.5 MILLION women in North America and 89 MILLION women worldwide.

The definitive way to diagnose a patient with endometriosis is to perform a surgical procedure called a laparoscopy. I had endometriosis for 10 years before I was finally diagnosed at the age of 23. Sadly, this type of lag between onset of symptoms and diagnosis is VERY common.

I was diagnosed in 1992 with endometriosis. I have participated in endometriosis support groups for 16 years. These have been immensely helpful sources of information, support, and resources. Through endometriosis support groups I have met so many strong, caring, empathetic, wonderful women.

Over the years, I have heard so many heartbreaking AND heartwarming stories from women with endometriosis. The heartbreaking stories have covered the impact endometriosis can have on women’s relationships, overall quality of life, career choices, fertility, self-esteem, and overall physical health. The heartwarming stories have covered the many ways endometriosis patients support each other, the ways family and friends show their love and support to patients, and the tales of doctors who respect their patients enough to take their symptoms seriously.

I recently started an online petition to create awareness and understanding of endometriosis. In the short time since I started this petition, women AND men from around the world have signed it. As of now, we have signatures from the U.S., the UK, Puerto Rico, Canada, Australia, and South Africa. I felt it important to write you now (versus waiting for more signatures to be added) because there has been a great deal of press lately for the two women from Dancing with the Stars who have been diagnosed with endometriosis: Lacey Schwimmer and Julianne Hough. These women were diagnosed within days of each other and many media outlets have reported about their diagnoses of endometriosis.

Unfortunately, some of what has been reported in the media about endometriosis (in relation to these two women) has been confusing or even misleading to the public. For example, multiple media outlets report that Lacey Schwimmer received a diagnosis of endometriosis. However, there is no mention of her having had a laparoscopy. In fact, she has not missed a single week performing on the show. Laparoscopy remains the only method for a definitive diagnosis of endometriosis. Julianne Hough’s laparoscopy took place the day AFTER she announced on Dancing with the Stars that she has endometriosis (and that she’d be having her appendix removed during the next day’s surgery). There are no media reports to indicate that she had had a previous laparoscopy. In fact, she was interviewed as saying that she’d had symptoms for the 5 years leading up to her recent surgery. So it would appear that her diagnosis was given PRIOR to the laparoscopic surgery she just had.

While there may well be more ‘behind the scenes’ to Ms. Schwimmer’s and Ms. Hough’s stories that might clear this confusion up, the fact right now is that the general public is hearing that these two women have been diagnosed with endometriosis WITHOUT THE BENEFIT OF HAVING THE LAPAROSCOPIC SURGERY THAT, TO DATE, IS THE ONLY DEFINITIVE MEANS OF DIAGNOSING THE CONDITION.

After hearing multiple media reports about the diagnoses of endometriosis for both women from Dancing with the Stars and hearing the mixed message that the public is receiving, I decided it was important to speak out about the FACTS on endometriosis.

That is why I started an awareness petition and that is why I’m sending you the link to this online petition sooner rather than later. I think it’s crucial to correct the record about endometriosis as soon as possible -- WHILE ENDOMETRIOSIS IS STILL BEING TALKED ABOUT IN THE MEDIA in the wake of the two Dancing with the Stars women’s diagnoses.

PLEASE see the link below to the online petition to “Create Awareness & Understanding About Endometriosis”. It contains 110 signatures & 49 comments to date:

Create Endometriosis Awareness & Understanding Petition

The comments on this petition are eye-opening, educational, heartbreaking, and compelling. At the same time that many of the petition comments break my heart, it is so wonderful to see not just endo patients speaking up but mothers, fathers, sisters, husbands, mothers-in-law, grandmothers, etc!!

It is hard to single any petition comments out because they are ALL so important and valuable. However, one remark that stood out to me and tied together just about all of the other comments was this:

***** “Knowledge is power” *****

One endometriosis patient wrote me pleading that I make sure this petition gets into the hands of someone who can help create awareness and understanding of endometriosis. I feel a responsibility to get this message out to the public.

All who have left comments on the petition seemed to echo this previous statement… that we need to get the petition into the hands of someone with the power and/or ability to help educate the public about endometriosis and to help not-yet-diagnosed endometriosis patients to seek out appropriate medical attention for this serious illness.

I ask your assistance in getting the FACTS about this illness disseminated to the public. If you would be so kind as to consider airing a segment on the topic of endometriosis, we would greatly appreciate it!

This illness affects up to 89 MILLION women. Yet, many women suffer in silence due to factors such as:

* Inability to find a doctor skilled in diagnosing & treating endometriosis

* Misunderstanding or lack of awareness about endometriosis and the symptoms associated with it

I have seen marriages that were strained by endometriosis (many resulting in divorce with endometriosis being a factor that led up to it) and I have met dozens of women who experience infertility and/or terrible pain. I have met women who are unable to follow their chosen career path due to the severity of their symptoms. (This by no means implies that endometriosis patients are not capable and hard-working!! In fact… many endometriosis patients I know personally, of those still physically able to work outside the home, have a tendency to overcompensate for their illness by being very high achievers and being exceptionally productive in the workplace).

Please see my blog on endometriosis and other chronic illnesses:

Jeanne's Endo Blog

Please consider airing a story on the facts about endometriosis. Creating awareness and understanding of this illness is SO important to SO many women and their loved ones!!!

Sincerely,


Please keep spreading the word about endometriosis. Please sign the petition if you have not already done so. Please encourage your loved ones to sign too (anyone wishing to create awareness & education about endometriosis is welcome to sign). The better we spread the word, the more signatures we'll get. If necessary, I can re-submit requests for endometriosis airtime in the future and I'll use the growing online petition when I do so!

Thank you!!

Related link (that contains many other related links):

Saturday, November 8, 2008 Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View

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

31 comments:

Jannie said...

Jeanne, we can and will do this, thanks to your inspiration and the help of many small voices blending into one that will be heard.

Thank you so so much.
Jannie

Jeanne said...

Jannie,

Thank you! It's nice to to do something that makes endometriosis patients like us feel like we're doing SOMETHING for the endo cause. I think it's empowering to make our voices heard.

Jeanne :)

My Endo Journey said...

Thank you Jeanne! YES, WE CAN!!!!

Jeanne said...

Allison,

Thank you!! :)

Jeanne

Bee said...

Thank you for coming over to remind me. I went over to sign it now. I hope Oprah helps! :o)

Jeanne said...

Bee,

Thank you for your support! The more signatures we get, the better!

Jeanne :)

gertru aka campanita or diabolikitty said...

thanks so much for your comment!

Jeanne said...

Gertru,

Thank YOU for writing that post about endometriosis!!

Did the Babel Fish translator on my blog work? Were you able to read my blog in English?

Thanks again!

Jeanne

gertru aka campanita or diabolikitty said...

Babel Fish translator works fine.
I understand everything in english but it's difficult to me the speaking part ;)

Jeanne said...

Gertru,

Great! You are the first person to try my Babel Fish translator that I know of. I'm glad it works!

I took French, Spanish, and Italian in school but as my French teacher warned us "use it or lose it". He was right and I remember very little!

Jeanne :)

Mckay K said...

Jeanne you continue to be a driving force to get out the truth about endometriosis.

I hope the combination of this letter and the petition will encourage Oprah and/or one of her staff members to produce a show on endometriosis.

Be well

Jeanne said...

Mckay k,

Thank you! Your positive energy and wonderful attitude help so many people on your blog.

It sure would be nice if the media would cover endo FACTS!

It affects so many people and is so misunderstood by the general public.

Take care,

Jeanne

bella said...

Oh, okay, so because I can't afford to have surgery, I don't have endo? It's all in my head is it?

This petition is ridiculous. I'm sure all of the women who can afford surgery will be supporting you, but the countless others of us out there who have been medically diagnosed without surgery can just continue to be ignored. We can continue to receive sub-par treatment from doctors, and be ignored by our employers.

Thankyou, for perpetuating yet another endo myth.

Jeanne said...

Bella,

First let me begin by saying that I am sorry you can't afford to have surgery. Trust me when I tell you that I know all about that from personal experience!!!!

I never said endo is in your head. I never implied endo is in your head. I have never written or spoken to you before in my life!!! I'm the LAST person who would ever tell someone their symptoms of ANY illness were "in their heads".

First of all, I'm not a doctor and that means I don't diagnose people with anything.

More importantly, I have participated in (in-person) endometriosis support groups from 1992 through 2008. In that time, I have heard many heartbreaking stories. Lots of those sad stories were from women who were not believed (!) by their doctors, nurses, employers, friends, families, etc. So I'm all-too-familiar with how hurtful it is when people act like things are in other people's heads. (I have had people think this of me and it's not fun)!!!

Trust me that I would never, ever try to tell someone that their symptoms are in their head. I don't know why you would suggest otherwise.

It is a crying shame that anyone (you, me, the woman at the grocery store... I mean ANYONE)... should ever have to skip surgery due to cost!! The health care system is clearly broken if people are forgoing surgery because they can't afford it!! That does NOT mean that anyone would suggest that a woman who has endometriosis has it any less simply because she can't afford the surgery to properly diagnose it.

Now... it is not my OPINION that a laparoscopy is what is used to diagnose endometriosis. Please see comments from the Endometriosis Association and the Endometriosis Research Center.

Here are the facts about diagnosing endometriosis, from remarks on the EA and ERC websites:

1)

Endometriosis Association:
http://www.endometriosisassn.org/endo.html

EA quote from the website above ---

"Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices".

2)

Endometriosis Research Center:

http://www.endocenter.org/

ERC quote from their website---

"Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive". [Those are their capital letters, not mine].

I'm sorry that you find the petition "ridiculous". Perhaps if you read the heartbreaking comments that have been left on this online petition, you might see things differently. If you read the comments there, you'll see lots of support for the petition and for it's goal (to create awareness & understanding of endometriosis).

The women who can afford surgery are not the only ones signing this petition!!! I can state that with conviction since I am drowning in medical debt and I'm the one who started it. (When I say drowning in medical debt, I'm not exaggerating even the slightest bit). So I can't speak for others but I can speak for myself. I assure you that I know all about medical costs!!! If you read my site, you'll quickly see that I have much more than endometriosis. I have numerous chronic illnesses. Each one is expensive. My family's finances have been absolutely CRIPPLED by medical expenses! So if you are under the assumption that only those who can afford surgery are listed on this petition, you are mistaken about at least one person. (I haven’t even been able to pay the hospital for my last surgery because my husband got laid off 1 week after my surgery. So by the time the hospital billed me, the money had gone towards food!!)

So please don't assume you know anything about my financial situation!

As far as someone being "medically diagnosed without surgery" AND "being ignored"... it sounds like you are not getting the relief you need. I am sorry about that. Perhaps if you seek a second opinion you may find a doctor who is better able to serve your needs? I wish I could wave a wand and make you feel better. Honestly, I do. You have no idea how many heartbreaking stories I have heard over the years from dozens of endo patients.

It is very sad that women are suffering the way you've described... Whether the barriers to proper care are financial, difficulty finding a doctor who can help... or both, there is no excuse for the suffering women face dealing with endometriosis (whether they have had surgery to diagnose it or not).

I suffered endo symptoms from age 13 to age 23. Then I was diagnosed in 1992 after 10 years of suffering. I'm now 39 years old.

I have been through enormous adversity with my endo and with my many other chronic illnesses. So I have great empathy for you!!

Every endo patient I have ever met has received sub-par treatment at some point. This is sad but very true. Financial issues only worsen this problem by potentially restricting which doctor(s) you may see (depending on if you have insurance or whether the doc you'd like to see is covered even if you do have insurance... which many in this country don't).

***********************************
I STRONGLY OBJECT TO YOUR COMMENT THAT I AM "PERPETUATING YET ANOTHER ENDO MYTH"!!
***********************************

You may not have meant this to be offensive but I must say that I work very hard helping endo patients (through local support, through this blog, via email, with the petition, etc).

I have worked countless hours as a volunteer over a span of many years. For 7 years I have been an endometriosis support group leader. Since 1992 I have belonged to whatever endo support group was in the closest city to where I lived.

I'm not sure what "myth" you think I am perpetuating. The petition you call "ridiculous" was created to "Create Awareness & Understanding of Endometriosis". Have you seen the petition yourself or have you just heard about it through a third party??

I began the petition on 10/31. From 10/31 through tonight, I have gotten a great deal of very positive feedback and no negative feedback... until tonight.

Earlier tonight, I visited an endometriosis forum where some patients commented about laparoscopy not being necessary to diagnose endo. I posted a comment back to that because it is contrary to what the Endometriosis Association and the Endometriosis Research Center both say (per above).

My comments in the forum (about a laparoscopy being the definitive means to diagnose endo) were not well received by two women in the forum who favored less invasive approaches.

Other than quoting the EA and ERC, I don't know how else to indicate that I wasn't stating my opinion. Rather, I was passing along what these organizations say about diagnosis.

I'm not sure if you just happened to post a comment here the same night that I visited a forum that didn't agree about the need for a lap to diagnose endo or not. If so, all I can say is that I'm referring the EA and ERC information. Also, the petition has been 100% well-received with the exception of the forum I mentioned (tonight) and this comment post (also tonight). You didn't mention how you found this blog so I don't know if you were in the forum earlier tonight or not.

The statement that a laparoscopy is the method for diagnosing endo isn't my opinion.

The 2 major endometriosis organizations above have addressed this issue. Their websites both comment on this (as per the quotes above from those sites)...

The unfortunate fact is that laparoscopy is currently the accepted method for diagnosing endo. Hopefully there'll be better methods in the future! I understand you aren't comfortable signing the petition and no one is trying to talk you into doing so.

I can certainly understand the frustration of not being able to afford the medical care you need. Believe me, I live with these challenges every day.

It is not clear to me why you find the petition ridiculous. The EA and the ERC have medical advisory boards with doctors who are knowledgeable about endo. I'm not sure if you have had any interaction with EA or ERC but they are both respected organizations for endo.

If you elect not to sign the petition (which you have clearly already done), that is your business. However, I would appreciate it if you not post accusations on my blog that I am "perpetuating myths about endo". I work very hard to dispel myths about endo. So that is one of the most hurtful things you could say to me.

Being hurtful may not have been your intent but I perceived your comment here as pretty aggressive and I would appreciate you not accusing me - on my blog - of spreading "endo myths".

That is the polar opposite of what I try my best to do every day!

I truly hope that you can find the right doctor to help you somehow manage your symptoms. No one deserves the suffering endo causes. Also, again, I would NEVER IN A MILLION YEARS think that someone's illness was "in their head", as you alluded to. I truly hope you can find some relief!!

For those who are interested in signing it, here's the link:

http://www.gopetition.com/online/22963.html

Best wishes,

Jeanne

P.S. You are welcome to post comments here anytime you wish but I would appreciate it if you would refrain from accusing me of perpetuating myths about endo. This is very hurtful to me. More importantly, it is not in the supportive, positive spirit that I am trying to foster here. I welcome differing opinions. However, if something is stated that is contrary to both the Endo Assoc and the Endo Research Ctr, you can bet that I will comment to that effect 100% of the time.

Yaya said...

Bella,
Actually-Jeanne is absolutely correct. You can suspect you have Endo before surgery but you are not officially diagnosed until you have the surgery. So before you go jumping down Jeanne's throat maybe you should get your facts straight. Call some specialists and ask them and I bet you'll be wanting to insert your foot into your mouth.
Jeanne is doing amazing things for Endometriosis Awareness and I cannot believe you would attack her for being such an amazing advocate. What bothers me the most is that you are attacking her when YOU are wrong. I'm sorry if you suffer from Endo, I know how painful it is to live with this illness, BUT women are not officially confirmed with Endo until they have the surgery. Endo is invisible on ultrasounds and can only be seen in surgery.
I'm sorry you have been misinformed and then feel that YOUR way is the RIGHT way, when it is not. Please get your facts straight.
Sincerely,
Alicia

Jeanne said...

Alicia,
Thank you! :)
Jeanne

P.S.

I received an email notification this morning of someone with the screen name "bella demarco"... from the endometriosis forum.

Here is the comment she posted in the forum: "please don't leave. this jeanne woman is acting like an idiot, and is clearly not part of this community.

i would go far as to call troll - journal created today with the only membership this community? TROLL."


---

As I suspected, the Bella who commented on my blog was, in fact, from the forum I had mentioned. Anyone interested in checking out this forum can check the Live Journal "endometriosis" group.

I find it interesting that I am being called an "idiot" and a "troll" for quoting the Endometriosis Association and the Endometriosis Research Center.

I have no intention of posting any more comments in that forum but thought I'd post Bella's comments here. (I decided to refresh my still-open screen on Live Journal after I saw an email notifcation from "bella demarco" this morning).

Isn't it interesting that such negativity is being aimed at me when all I did was point out the facts about endometriosis?

I have honestly never seen anything like this! I have never been attacked by another endo patient like this. It boggles my mind since I have always found endo patients to be warm, welcoming, and supportive.

I will avoid commenting in this unusual forum in the future. If only I could figure out how to turn the Live Journal email notifications off!! I don't need people attacking me for trying to spread facts about endo.

Jeanne said...

Bella,

I will not delete these posts because I believe everyone has their own opinion. I have presented facts derived from EA and ERC websites.

This is a blog that I WRITE. You don't have to agree with me. If you don't like what I have to say, don't read it.

Or, perhaps post some constructive critisism But, please don't create negativity.

We are all endo patients; we are all suffering in some form or fashion.

This is silly to fight about something that we are both passionate about. Thank you for visiting.

Jeanne

Jannie said...

Jeanne I am so sad that you who have for years worked with nothing but selfless intent to help other endo sufferers, has gotten these negative commments, both here and over at Live Journal.

I am absolutely stunned that you should be attacked when you are only trying to do good.

You have explained all, with grace and respect to Bella, and I won't reiterate your quotes from the Endometriosis Association and the Endometriosis Research Center, but obviously you are correct and any one who dissents either has been severely misinformed by someone else, has a chip on their shoulders, and / or or may be under the influence of drugs or alcohol. Or somehow has a hidden agenda, which is just twisted if that's the case. I can think of no other reasons why someone would choose not only to not check out THE CLINICAL FACTS on endo diagnosis but to then lambaste you and falsely ridicule your petition.

I know how negative words sting, even long after they're gone, but please Jeanne, please, do not get down from this. I, and seemingly 99.99% of us KNOW you are on the right track to dispell myths about endo - not the other way around as you have been so unjustly accused of. Keep your chin up and keep up the good fight.

Jannie

P.S. I certanly could not afford surgery either, my husband and I are still paying the medical bills 9 years later.

Let's hope endometriosis get the awareness it deserves. Thanks again, for your work in this.

endochick said...

Bella,

First, please take a minute, breathe, relax and calm down. We are all in this disease together.

What both Jeanne and YaYa are saying are true: the only way to cofirm Endometriosis is to do a lap. A doctor can suspect endo and treat it as such, to an extent, but without a lap he is severely limited in his approach and can not clean out disease.

Please see the post I wrote on my Blog: Endometriosis: The Silent Life Sentence at http://www.endochick.wordpress.com

We need to all come together and fight for more awareness and better understanding of this painful condition.

Jeanne said...

Endochick,

Thank you for your comments on this issue. I think its really important for endo patients to make informed decisions. That's why I started this awareness petition... TO CREATE AWARENESS & UNDERSTANDING OF ENDO!

I read your fantastic post (http://www.endochick.wordpress.com ) about this subject.

Your sister's experience with cancer being the culprit (NOT ENDO) for her symptoms DESPITE her family history & her symptoms being "suspicious of endo" is a perfect example of what I fear with the mixed messages in the media lately... that incorrect assumptions can sometimes be made that are not in patient's best interests!!

Jeanne

P.S. Bella, I would appreciate if you would refrain from calling me names like "idiot" in the endometriosis forum where this conversation got started. I don't plan to post there anymore but I would appreciate it if you could stop saying mean-spirited things about me on an endometriosis forum. Thank you!

Jannie said...

Bella, I actually sat and cried over your comment to Jeanne because she has gone through so much (still goes through so much,) and has done nothing but try HELP people and do something GOOD with this petition. And with her support groups.

And volunteering to do so!

For her to have her efforts ridiculed is just beyond me.

And I can't understand why anyone would disagree with clinical research.

Jeanne said...

Jannie,

Thank you for your support! :)

Jeanne

Alex said...

Jeanne,
Thank you for putting in the time and effort to once again put forth our cause, you are awesome! I'm sorry I've been somewhat absent in this whole thing. Ben's stillr ecovering from surgery and I've been sick myself... now AF is getting ready to kick my butt, so I've been feeling very "blah" lately... I'm sure you know what I mean, you always do! :)

Now, Bella-
I have suffered with Endo since I was a young teen. I was not diagnosed until I was 26, after my Lap. I had a few doctors make educated guesses about my "probable diagnosis" but NONE would definitively diagnose OR treat me for Endo until I had a Lap. Does that mean that I didn't have Endo all those years? Of course not! Not having been officially diagnosed doesn't mean you are not an Endo sufferer, it's just fact that it cannot be clinically diagnosed any other way. That was the point Jeanne was driving home, the fact that Laps are SO so sooooooo crucial for women to receive the earliest diagnosis/treatment possible. Research supports everything she said, so no she has not, is not, and will not ever perpetuate any Endo myths... I'm sorry, but you totally missed the boat there.

I wish you luck and all the best on your journey.

My Endo Journey said...

Where was it EVER said that just because you have never been diagnosed it means you should get sub-par treatment? HECK, even WITH a diagnosis sometimes the treatment is "sub-par" because of the nature of this crazy disease. We are ALL in this together...as endo sufferers! I don't even have time to swim through all of the back and forth, but, just know that this blog means a lot to a lot of people. I'm sure Jeanne wouldn't mind constructive comments and conversation...but conversations twisted out of context just aren't necessary.

We all need to be together to fight for awareness and treatments/research/etc!

Kristen said...

I am really happy that you're starting this petition, and I'm sorry that not everyone can... see both sides, to put it nicely. Even before I had surgery, I always said that endo was a POSSIBILITY. Yes, my mom and her sisters and some of their daughters may have it, but seeing as it doesn't show up on ultrasounds, mri's, etc., how else can there be a 100% correct diagnosis of it short of surgery? Even my boyfriend got angry at the comments that have been made by Lacey.

I want people to know of endo, to get some understanding, but I think it would be best to have the CORRECT information out there.

:)

Jannie said...

Jeanne, please keep up with the wonderful work you have started!

Sherril said...

Jeanne,

You are right. That Bella-chick is wrong.

What you were afraid would happen is happening, misinformation is being spread because of the incorrect reporting on the dancers.

I would think some of the big organizations would be getting out on top of this situation. It would be a good opportunity to get correct info out there. Maybe they're just moving slowly.

I will do a post on your petition soon. Lots going on now! That quack chiropractor Whitcomb is losing his license! Yay! Truth and justice do win in the end. Patience is hard, but it's the key.

I know that in my case, my stress hormones are all messed up and that causes me to get upset rather easily. So I have to avoid some situations that I know are going to upset me. I think you are right to avoid that group on Live Journal. You should be able to unsubscribe from their emails - I think there's a law that they have to include an unsub option on all emails like that. If there isn't one, I would report it to Live Journal management.

Gentle hugs,

Sherril

Jeanne said...

Please note:

I’m responding to several comments in batch form because I have gotten a bit behind on responding to all of the comments. I appreciate your patience! I have included the links for each commenter next to their name/blog name. If you have not already read Endochick’s Guest Blogger post from 11/14/2008, I highly recommend it. It ties together all of my posts on Dancing with the Stars and it adds a wealth of information plus a very personal story regarding Endochick’s sister who had “suspected” endo that turned out to be cervical cancer. I really recommend reading Endochick’s Guest Blog from 11/14. It’s fact-filled and really sums things up nicely. Thank you, Endochick, for agreeing to let me re-post your 11/13 blog post. It’s a real masterpiece!

Here are my responses to recent comments to this post ---

(1)

Response to Jannie of http://www.janniefunster.com/

Thank you for the enormous support you have showed me for a long time… but especially in the last few days! I did try very hard to be respectful in the response you referred to. Unfortunately, I’m not sure my message was received as it was intended. It’s hard to argue with the EA and ERC facts and I have noticed that no one is even making a pretense of disputing the facts from them. Instead, personal attacks on me have continued. While this is personally distressing to me because I am human and I do have feelings… and while I think the name-calling of me in the forum where this “conversation” began is totally inappropriate, what disturbs me the most is that the same type of myths in the media now are getting expanded and are gathering strength so long as non-factual statements go unchallenged. If my quotes of the Endometriosis Association and Endometriosis Research Center’s guidelines for properly diagnosed endo are going unheeded by some, hopefully this will not cause them harm later and hopefully they will not continue to spread the myths that cause confusion and frustration for so many. We can’t control what others think/say but we do have the power to speak up when we, as endo patients, hear incorrect statements like those we have discussed previously. Today’s Guest Blog by Endochick really ties together everything we’ve been talking about and I hope everyone here will read it because she tells the story of her sister who had endo in the family and had symptoms “suspicious” of endo but, as it turns out, she really had cervical cancer. (See Nov 14 post on this blog). This is a classic example of why diagnosis must not be made hastily. Please see Endochick’s very thorough Guest Blog posts for more details. As you said, clinical facts are difficult to dispute. Also, anyone who does not wish to sign the petition is not being talked into doing so. The petition to create awareness of endo is only for those who wish to sign it. Patients AND their loved ones can sign it. It is not just for endo patients. We have 171 signatures so far. Many commenters on the petition have attached poignant, compelling comments about endo’s impact on their lives! Thank you again for your unending support and kindness. I greatly appreciate the outpouring of support from you and many others on this issue. I will re-post your post-script since it is so relevant in a discussion where financial ability to pay for a laparoscopy has been raised…

P.S. Jannie said, “I certainly could not afford surgery either, my husband and I are still paying the medical bills 9 years later”.

(2)

Response to Alex of http://www.theinsandoutsofendo.blogspot.com/

Thank you for going out of your way to post a comment here. I know your husband has been very, very ill and for you to be sick at such a stressful time could not have helped matters any. I know you had a very scary incident with your husband and I hope he’s OK. I appreciate your thoughtful comments! I don’t know about “always knowing what you mean” but I do try to put myself in others’ shoes. Having been through so much myself, it is easier to comprehend than it might otherwise be. I will never understand someone else’s reality exactly but I do try my best to empathize and use my past experiences to get insights into how to listen to what others are going through. So thank you for your kind words. It is always nice to hear from you and I wish both you and your husband a speedy recovery. You have been through so much!!

Regarding your comments to Bella, I appreciate you sharing your story with her and other readers here so much. Your case began in your teens (as it did for SO many of us). Like others, it took many years to get a definitive diagnosis. You make a very good point that not having had a lap to confirm endo is present does not in any way mean that endo is NOT happening. It may be and it may not be. The laparoscopy is what rules endo in or out, as you explained from your own situation. Like you, I went many years without a diagnosis (10 to be exact). Did I have endo from age 13 until my diagnosis at 23? You had better believe it! However, it wasn’t until my lap that my doctor or I knew for sure what was happening. (My mom has endo but that did not prove pre-lap that my issue was the same as hers). As you said: “Not having been officially diagnosed doesn't mean you are not an Endo sufferer” and “It's just fact that it cannot be clinically diagnosed any other way”. This statement is aligned with what the EA and ERC both state. If anyone has scientific data to the contrary, I would love to see it. I’m assuming the EA and ERC are not BOTH mistaken about this important point. You are correct in your perception that the point I was driving home is the fact that laps are SO SO SOOOOOOOO crucial for women to receive the earliest diagnosis/treatment possible. I greatly appreciate your comment that I am NOT perpetuating “endo myths”. In fact, I work every day to do the opposite. A quick read of my blog should make that clear to anyone who chooses to read what I have written and to check the sources and articles I have cited in my posts. I was especially touched that you went out of your way to close with a warm statement to Bella. We all have worked hard to create a warm, welcoming, supportive place hear to share ideas, successes, set-backs, resources, etc. We strive to keep things positive without sugar-coating the reality: that endometriosis is a very challenging disease. It affects different people differently. Some cases are more severe pain-wise and regarding quality of life than others. However, the one thing all endo patients seem to share is the need for compassion, understanding, and validation that our symptoms are NOT in our heads and they are all-too-real. Thank you for your great insights. You always have such a resilient, positive attitude and I know you have been through hell. Your persistence and courage are inspirational.

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Response to "My journey with endometriosis" of http://i-am-not-endo.blogspot.com/

You really hit the nail on the head. No one ever said that just because someone has not been diagnosed means they should get sub-par treatment. As you pointed out, even with a definitive diagnosis the treatment may well be sub-par. This illness is poorly understood by doctors. Textbooks talk about how “puzzling” endo is. Traditional Western Medical doctors, for the most part, tend to turn to drugs and surgery to treat endo. There are numerous alternative treatment methods available that may be as effective or even more effective than drugs and surgery for properly diagnosed endo. Often, integrative medicine can take the “best of both worlds” and combine the best of alternative medicine with the best Traditional Western Medicine options. These treatment decisions are made between the doctor and the patient, of course. If a patient is not happy with the results of treatment or pain is not being properly managed, it may be necessary to get a second opinion. As you said, “we are ALL in this together...as endo sufferers!” I can understand that it’s time-consuming to read through the numerous comments to this particular blog post. (There are quite a few). I greatly appreciate your comment that “this blog means a lot to a lot of people”. That really touched my heart! I absolutely don’t mind constructive comments and conversation. When my petition to create awareness of endo is labeled as “ridiculous” and when name-calling follows that, it is hurtful not just to me but to others. The way I look at it… There are 171 signatures so far on the petition. So branding it “ridiculous” insults every single person who has signed it and those who added heartfelt, touching, hopeful, and even sad comments. Every comment I have read seems to have one thing in common. The person commenting invariably WANTS TO GET THE WORD OUT ABOUT ENDO WITHOUT THE FACTS BEING IGNORED OR MISUNDERSTOOD. I agree with you that conversations twisted out of context are not productive. They are a waste of time & energy for all involved. I also couldn’t agree more with your comment that “we all need to be together to fight for awareness and treatments/research/etc!” Working together to find a cure should be a top priority!

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Response to Kristen of http://bakesweet.blogspot.com/

Thank you for stopping by. I hope you’ll stop in again as I don’t recall seeing you before and you had some great comments. I’m glad that you see value in the petition and understand its purpose. Like so many endo patients, you sound like you had reason to believe you had endo before surgery but it wasn’t confirmed until you had a laparoscopy. While you had a family history (as do I), that was not enough for your doctor to confirm it. (Please see Endochick’s informative Guest Blog from November 14, 2008 right here on this blog). It’s fact-filled and it gives important details to thoroughly support the need for a lap to get a definitive diagnosis. No one wants surgery. Even free surgery. Undergoing anesthesia, expense, fear of the unknown, and recovery time are common concerns leading up to surgery like laparoscopy (and many other surgeries). The fact is that as of now this is the way to get a definitive diagnosis. As Endochick’s amazingly detailed Guest Blog outlines (see 11/14), there are MANY conditions that mimic endo symptoms and her sister’s cervical cancer could have been misdiagnosed. (See her Guest Blog for the whole fascinating story). It’s great that your boyfriend understands enough about endo to see the potential danger in Lacey Schwimmer’s statements. (See Endochick’s Guest Blog for Lacey’s exact quotes about her symptoms). Many, many people want the truth about endo to come out. Awareness and understanding are a crucial first step. The better people understand endo, the more likely we’ll see better diagnostic tools on the horizon and even, someday, a cure!! It’s very true that getting the public to know of endo is important. As you pointed out, the key is to get CORRECT info disseminated to the pubic so that patients and doctors can make informed, logical treatment decisions that are in the best interest of the patient! Thank you, Kristen, for your thoughtful comment and I hope you’ll stop back again soon!

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Response to Sherril of http://theiciexperience.blogspot.com/

Thank you for supporting the facts I presented from the Endometriosis Association and the Endometriosis Research Center. As you astutely pointed out, my fear of the potential for confusion related to the announcements by Lacey Schwimmer and Julianne Hough does seem to be unfolding... about this already puzzling, misunderstood disease. The misinformation issue has been “out there” for years BUT the announcements of the two dancers, the wordings that were quoted, and the timing of the statements has aggravated a situation where endo has been misunderstood for many years by doctors and patients alike. The media certainly should do basic fact-checking before publishing the dozens of articles that are flooding my mailbox daily from Google alerts on endo that almost all feature Ms. Hough and Ms. Schwimmer. These same Google alert emails used to have mostly links to medical journals and online newspaper articles about research findings and such. Now, the Google alerts I receive tend to have about 8 or 9 links each and generally all but one is a link to an interview of Julianne Hough.

The dancers may be misquoted and/or the medical professionals they see may be feeding them misinformation. What matters is that the public is getting mixed messages and misleading comments that feed the cycle of misinformation.

This is harmful to all endo patients. It erodes patient’s credibility, it may change some women’s ideas of when to seek medical attention for symptoms, and it even gives a false impression that the grueling dancing that the show’s dancers describe week after week as “the hardest work they have ever done” is something that can potentially be returned to within a few days. The last quote I saw before Julianne’s surgery was that she’d probably miss 4-5 days of dancing. She took more than that... (Good for her because she could have injured herself by returning too soon)!

It did concern me that on the last show she was dancing with her brother is such a way that it was truly painful for me to watch. With carrying her brother on her shoulders (however briefly) and with stretching backward which would pull the abdomen significantly, I was truly concerned for her well-being. It is her body to do with as she pleases. My main concern is that by her dancing this way, it sends a message to the public that the amount of time she took off from the show was sufficient to allow for such vigorous activity.

Everyone is different and she may be feeling fantastic. The thing is that many women need weeks to recover after a lap. While many doctors suggest about 3 days for recovery post-op, just about any woman I have encountered needed far more than that. For the type of physical activity demonstrated on Dancing with the Stars, I am not entirely sure that an average person would be able to do this type of dancing so soon post-op without risking self-injury.

Again, every patient is different. Here’s the trick. If a husband or friend or mother-in-law watches this show and then the wife/friend/daughter-in-law has a lap in the future, there will likely be an expectation that a similar recovery time will be sufficient for this patient. This is unfair to the patient. Endo patients are often “disbelieved”, told their symptoms are “in their heads” or “normal”. The last thing an endo patient needs is even MORE pressure on her to live up to such expectations. Julianne Hough is a professional dancer and an athlete. She is only 20 years old. Not all patients start with the youth and strength she has going into recovery! So I worry about the patients whose recovery is vastly different than hers. What kind of judgments will be passed on them by employers, spouses, friends, and even family? This sends a mixed message to the public.

I have done some “digging” about the topic of big organizations addressing these pressing issues. Unfortunately, I have not been able to see the type of reaction to this situation that I believe would most benefit endo patients and the public. I believe more could be done in this area. I agree this is a PRIME opportunity to capitalize on endometriosis being in the news a great deal lately. One of the main reasons I started the petition on 10/31 was to do just that. It would be great if big organizations would make a concerted effort to “seize the moment” and use this situation to publicize heavily the FACTS about endo and dispel the MYTHS about it.

On a separate topic you had mentioned, I know how upset you were about the doctor who is believed to be scamming patients out of large sums of money. I remember distinctly the post you wrote about this topic and how upset many patients were with the treatment that was purported to all but cure their fibromyalgia. (You can see Sherril’s post about this for more details at the link listed above). From what I read on your blog, it sounded like that doctor took advantage of very ill patients and fleeced them out of large sums of money. So I am happy for you because I know you were very upset about this situation.

Yes, I know all about how stress hormones can do a number on a person. I can very much relate to what you are saying. I need to follow your example and practice better avoidance of upsetting situations myself. I’m sick enough with my various illnesses and I don’t need to exacerbate them with high stress causing flare-ups. Yes, I have made a conscious choice recently to avoid situations that cause stress, raise my blood pressure, and aggravate my illnesses… more than they already are. Thank you for the reminder that I need to practice some self-care and prioritize with healthy choices.

Sherril, thank you for your insights and support. I really appreciate you taking the time to post such a comprehensive comment. Thanks!! :)

Jeanne said...

Jannie,

I'm so glad you found my blog way-back-when! I treasure your positive comments and enjoy visiting your blog when I need a pick-me-up. :)

I'm so sorry about your own endometriosis-related struggles and I really appreciate your constant thoughtfulness!

Jeanne

Jannie said...

Over 190 signatures so far!!!

Jeanne said...

Jannie,

Isn't it great?! :)

Thanks for helping spread the word...

Jeanne

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