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3/05/2009

'Jeanne's Endo Blog': Jeanne's Endometriosis Story For CureTogether's "Endometriosis Heroes" Book, Expected To Be Released Mid-March...

Yesterday you read Stacy's endometriosis story. It was a sneak peek at CureTogether's upcoming book "Endometriosis Heroes", scheduled to be released in Mid-March!

I have one more sneak preview of that same book. It is my endometriosis story and will also be included in the CureTogether book "Endometriosis Heroes".



This story isn't the easiest one I've ever written but I chose to write about it because I know many young girls out there are suffering! I'm hoping that sharing my story may help someone. With endometriosis, early diagnosis is important. This isn't a story you'd find in a medical textbook or medical journal. It's not a story a doctor would "forewarn" you about. It is, however, a true story. I've spoken with enough endo patients to know that similar things happen to others. While I was embarrassed at the time this story occurred, I now know that I have nothing to be embarrassed of! This is just one of the many ways endometriosis has affected me over the years. I went from age 13 to age 23 undiagnosed. This is a common time lag for endo diagnosis. There should NOT be such a lag! Endometriosis awareness matters!!

Here is my story...

My 7th grade field trip as an endometriosis patient:

It was the day we had been waiting for. It was the day for our end-of-year 7th grade class field trip to an amusement park! After months of studying hard and doing mountains of homework, this field trip was our reward. We’d been looking forward to it for months. I woke up excited and happy that the day had finally arrived. Instead of going to school all day, I was going to go on rides with my friends. We took the bus to the amusement park and were escorted to the picnic tables where we were to meet for lunch at a specified time.

Then we were free! My friends and I went on some rides and had lots of fun. Then… it happened! I felt something was wrong. No! It couldn’t be that. I just finished my period (an 11-day-long one) three days BEFORE the field trip. There was no way I could have my period AGAIN, right? WRONG!

I rushed to the nearest rest room to check the damage. Surely the most it could be was spotting… I hoped. As I navigated through the busy amusement park, I felt a sense of doom come over me. I could feel that this was not spotting. I picked up the pace for getting to the rest room. This increase in speed only made the flow heavier, of course. There was no way I could be spotted by all of my 7th grade classmates this way, though. I walked/ran to the rest room as quickly as possible.

Despite the large number of stalls, there was a line because they were all in use. By this point, I was frantic. My 2 friends had zigzagged through the park after me. They exchanged glances when they saw the line (as I had already explained to them what the emergency was). I scurried into the first available stall. I felt nauseated at what I discovered. Physically, I was nauseated (as often was the case with my periods). This was an additional level of nausea… at the realization that my worst fear had just been confirmed.

The blood had saturated my underwear and seeped through onto my shorts… which were now soaked as well. I just cried and cried. My friends were on the other side of the stall door… asking me if I was OK. I was very much NOT at all OK. I was dumbfounded. What was I going to do? I didn’t have any spare clothes or underwear and I was stranded in a public rest room of the amusement park I was supposed to be having fun at. I was very much NOT having fun. This was a nightmare!

Fortunately for me, I had my two friends with me! I don’t know what I would have done without them. They saved the day by helping me deal with the most embarrassing, upsetting, stressful thing that I imagine could have happened to me… on what was supposed to be a day of fun! They could have bailed on me and hit the rides but they knew I was in distress and they were ready and willing to help… even if it was not going to be fun.

I was in the stall, in shock, not knowing what to do. My friend since 4th grade (we are still friends today 30 years after we met in class in 4th grade) offered to help first. She suggested I hand her my shorts under the door so she could wash them out in the sink. Now that is a true friend!! I was dying of embarrassment but didn’t feel I had any other options. So I slipped her my shorts under the door. She proceeded to wash them as thoroughly as one possibly can in a public rest room sink. She passed them off to my 2nd friend who blow dried them with the hand dryer. Next she asked me to pass my underwear out. Under the door it went. I was sobbing pretty heavily by now. She washed and washed and then that too got the hand dryer treatment. They weren’t perfect… but the obvious stains were washed out and they were dried and ready for me to get dressed again. I just kept crying. This was a pretty traumatic event for a 7th grade girl.

Once my dry clothes were passed back to me, I got dressed and tried to regain my composure. I had no pads with me and would need to figure out which of my classmates I might be able to bum pads off of. The thought of needing to locate a “pad supplier” was adding to my nausea. I wanted to click my heels and go home. I wanted to take a hot bath and put some clean, soft pajamas on. Instead, I needed to get through this field trip.

This day was downright traumatic for me. I blocked the memory of it out as best I could because it was so upsetting. However, I’ll never forget it. Dealing with chronic illness is tough on adults. Dealing with it is even harder for children. What 7th grader is prepared for what I described above? What adult would be?

Endometriosis is a serious illness. While misunderstood and mischaracterized by the media oftentimes, people tend to have some understanding that symptoms like pain and infertility can be associated with endo. The story I just told isn’t one you’d read in a medical textbook. It’s not one you’d probably hear many places at all. There are many stories I could have picked in place of this but I chose this story because it’s a symbol for what my early years with endometriosis were like. It’s emblematic. I could have replaced this story with any number of others. The main point is that endometriosis is a SERIOUS illness that affects women and girls in a multitude of ways. The profound impact endometriosis has on patients and their loved ones cannot and should not ever be underestimated!

Please sign: Endometriosis awareness petition

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MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET!

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!

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

8 comments:

Jannie Funster said...

Jeanne, this made me cry, both in sadness for what you went through but with joy for those wonderful friends you had that day.

I am so glad to hear you will be included in "Endometriosis Heroes"

YOU are my hero, my friend.

T n' W said...

First I want to thank you for your comment. It's been a long while since I've reached out on this subject and to have someone who really knows is well.... refreshing. I do alot of reading, but have kinda closed myself off with family and friends just b/c I know they have to be tired of hearing it. I'm tired of living it. Lately hiding the pain has been getting harder though.
Secondly, thank you for your devotion. You will never know how many lives you have touched.
And thirdly I must comment on this post. It brought back a lot of memories for me. PE was just a nightmare. And thinking back I got more sympathy from the male coach then the female. (typical I'm sure) But most of all thank God for those unwaivering friends. We couldn't get through it without them!

Tonyia

Jeanne said...

Jannie,

I'm sorry it made you cry. It made me cry writing it actually. I kind of had to relive it in my mind to tell the story right and I wanted to be sure to get the emotional anguish across. It really was a traumatic experience. Yes, I was very lucky my friends helped me! I cannot imagine what would have happened if they didn't!

I am really looking forward to this book. It's so exciting that people are finally talking and writing about endometriosis. No one should suffer in silence with this illness!

Thanks, Jannie!

Jeanne

Jeanne said...

Tonyia,

I am glad you liked the comment I left on your blog. You clearly put your emotions out on the line with that post and it deserved to be acknowledged. I know it can be very hard to delve into the deep endometrioisis emotional well like that! It's good to reach out rather than bottle things up. :) Like you, I have reached a point where I realize friends and family can simply get overwhelmed with talking about endo.

Like you I do lots of reading (on endo and on other health conditions). From 1992-2008 I attended monthly endometriosis support group meetings. In 2008, we stopped having monthly meetings. We are still a group and people can still request a meeting but we don't meet every month anymore.

It was hard for me to accept, at first, that we were not going to have monthly meetings anymore for the very reasons you described... being afraid people are tired of hearing about it and not knowing who I'd talk with about it!

Here's a link to a post I wrote when our group had transitioned from a "monthly meeting" group to what it is now. (Hint... I am still in contact regularly with many women from the local group despite our change of format). Here's the link to where I talked about the local group...

Wednesday, October 8, 2008 Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

I think it's normal to be tired of living with endo (or any chronic illness). No one wants to be sick.

One thing that helps me get through it is to stop and think about all of the amazing, thoughtful, smart, caring, compassionate women I have met who have endometriosis. If it wren't for endo, I never would have met most or even all of these wonderful women!

Some of the strongest, most fantastic women I have ever had the pleasure to meet have been met through local endo support group or women I've "met" online who have endometriosis or other chronic illness(es). These are some of the most courageous people I've ever met in my life.

Hiding pain is EXHAUSTING. It's DRAINING. It's CONSUMING.

We all have times where we may downplay our pain or try to "minimize" pain's appearance. Maybe we don't want to spoil someone else's fun. Maybe we don't want to be perceived as "lazy", "exaggerating", etc. Maybe it's even easier sometimes to exert a bit of energy to disguise our pain than to have to "explain ourselves" to others.

However, after talking with hundreds of women I have reached the conclusion that "hiding pain" is generally a very exhausting and draining experience. The amount of energy it takes to "hide pain" (either by bottling up/not discussing it, by making a conscious effort not to wince or make faces no matter how severe or sharp pain gets, by distracting people during those high-pain moments so they aren't looking when we're in so much pain we're gasping for air) is immense.

Hiding pain is hard work.

If someone has cancer or a broken bone, we don't expect them to "hide their pain". Yet, women with endometriosis often do just that.

Is it fear of judgment? Is it because endometriosis can cause gynecological symptoms? Is it because women with endo often "look fine" (and are told so frequently by people) and feel people won't understand how sick they are because they don't look the part? Is it all of the above? Are there other reasons?

Endometriosis is a very challenging illness. Part of why that is the case is that it may force a woman out of her shell, so to speak. I know it did for me!

I used to be the most quiet, shy person imaginable.

Endometriosis forced me to learn how to advocate for myself when interacting with healthcare professionals.

It forced me to speak up in the context of endo support group meetings. (To be clear.. I did not have to speak but knew I'd get more out of the group if I did so than if I just sat and listened to everyone else).

Endometriosis has turned me into an activist for the cause... No one should have to suffer in silence with this illness.

I may be sick of being sick (with not just endometriosis but other illnesses as well)... but I recognize that endometriosis has served a purpose in my life too.

So I try to remind myself of that on the bad days! (See my 2/10 post featuring a Michael J. Fox video which kind of captures my philosophy about chronic illness).

You don't have anything to thank me for. I'm just glad we got connected!

Ah, yes. Phys. ed. class. I remember those days! Hopefully the memories this post brought back weren't too traumatic! I remember detesting my male and female phys. ed. teachers. In my entire education, the only teachers I ever strongly disliked were gym class teachers.

In my middle school, you had to bring a note from home if you couldn't swim because of your period. Then you got to sit on the bleachers and have the boys stare at you and chuckle about who had her period this week.

Considering most of my periods were 10-12 days long and considering that my cycles varied widely but were as short as 16 days long, I didn’t get much of a break between periods.

This made it appear that I was "lying" or "faking" a period to get out of swimming. If it was swimming day in gym class, I always seemed to have my period.

It was awful. The teachers would not be very discreet when gathering any notes for the day. God forbid if any of my friends had their period the same day as me, the teachers seemed to think we were all faking our periods to have a class period to sit and chat on the bleachers. They were just totally clueless!

Yes, the friends made it all more bearable, didn't they? You're right. I couldn't have gotten through my middle school & high school years without my friends!

Thanks for stopping by! I enjoyed checking out your blog today. Thanks again for plugging my blog elsewhere. :)

Jeanne

Alexandra Carmichael said...

What an amazing, and powerfully written story, Jeanne. I had shivers all over my body reading it.

Thank you so much for sharing this story - I think it will make a fantastic, poignant addition to the book.

I wish I could reach back to that 7th grade girl and give her a big hug! I have great respect for you and for all women with endometriosis, and I hope this book will help spread awareness and increase the amount of research being done.

Jeanne said...

Alexandra,

Thank you for your kind words.

That is my hope... that sharing my pain will help others (especially girls struggling in silence without a proper diagnosis).

Thank you, Alexandra. I caught your virtual hug. (I'll never be too old for a hug).

:)

I appreciate your compassion towards endometriosis patients (though I know you have lots of compassion regarding other conditions too)! It's a great feeling that medical research is being done by CureTogether about endometriosis. I really can't wait to see your Endometriosis Heroes book.

I too hope that the book will help spread awareness and I certainly hope it will increase the amount of research.

I have great respect for you in targeting endometriosis for research!

The public is so woefully uninformed or ill-informed (as a whole) about endometriosis. This is easy to understand when the illness is question is:

1) poorly understood even within the medical community

2) not properly covered in the media

3) an illness that has aspects involving reproductive organs, privacy issues, and societal taboos

Put all of that together and it's no wonder that most people don't really understand what endometriosis is or how serious a condition it can be.

This illness affects 89 million women and girls worldwide. It is more common than AIDS and more common than cancer.

Source: Ohio State University Medical Center -- http://medicalcenter.osu.edu/patientcare/
healthcare_services/
gynecological_health/
gynecological_statistics/
Pages/index.aspx

An illness more common than AIDS and more common than cancer should get some decent press.

It is refreshing to know that CureTogether is going to be releasing a book about endometriosis this month!

Jeanne

Yaya said...

Wow, thank you for sharing this traumatic event in your life. It is horrible to realize that while most girls are going through the awkwardness of puberty, us girls w/ endo are dealing with SO MUCH MORE than that at a time in life that is so fragile and confusing to begin with.

Jeanne said...

Alicia,

Yes, it makes a challenging time that much more stressful and confusing.

I have been racking my brain trying to figure out how to write the best possible article this month for Shaping Youth.

I want to do this very sensitive and important subject justice since the target audience of what I write will be girls (and their parents)!

It's a big responsibility to write for this audience about endo and I want to do it right! (I'll be guest blogging this month on their blog).

Maybe I can pick your brain for ideas on how to approach it? :)

Jeanne

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