Share your Story : Rebecca

A young woman in a hospital bed giving two thumbs up

My Journey with Endometriosis & Adenomyosis by Rebecca L. Gibson

I was always healthy and active in sports while growing up. In 2008, I married my childhood sweetheart and we began our life together. Everything changed in 2009 when I developed symptoms of endometriosis. Endometriosis (en-doh-mee-tree-oh-sis) is an extremely painful condition where tissue resembling – but not the same as – the endometrium (lining of the uterus) is found elsewhere in the body, outside the womb. Although symptoms may indicate endometriosis, an official diagnosis can only be made through surgery. Common symptoms include, but are not limited to –pelvic pain apart from menses, debilitating menstrual pain, backache/leg pain, painful intercourse or pain associated with sexual activity, painful bowel movements, fatigue, bloating, constipation/diarrhea, which may worsen during menses, pain with exercise, painful pelvic exams, painful urination, sciatic pain, infertility/pregnancy loss.

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Share Your Story : Marixsa

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Marixsa is a fellow blogger and Endo advocate.  She was diagnosed when she was 28 years old.  Now 33, her story is a heartbreaking, yet encouraging, one.  Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage.  Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination.  She continues to fight, for herself and for other EndoSisters.    And I hold her among my heroes.

Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:

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It hurts to have sex…

A bed with the blankets drawn back revealing the sheets and four pillows

So this entry’s going to get a bit personal.  And possibly full of Too Much Information.  But it is a topic that needs to be addressed.  Not only for myself, but for countless otherssuffering from the same issues.

One of the symptoms of Endometriosis for a lot of EndoWarriors is painful sex (either during, after, or both), and it’s estimated that more than half of the people with Endo suffer from it.  The fancy name for pelvic pain during or after sex is Dyspareunia. It’s common and it could have a myriad of causes and factors.  Some of those factors can be vaginal dryness, herpes, Endometriosis, ovarian cysts, fibroids, Adenomyosis, uterine tilt, bowel tenderness or fullness, pelvic inflammatory disease, infections, or bladder issues.  The pain can be limited to the vaginal opening or canal, or it can extend deeper into the pelvic region and thighs.  This pain can stop as soon as sexual activity is stopped, or can last for hours, or even days afterward.  It can be a dull ache, a sharp pain, stabbing sensations, and can range from barely there to excruciating.

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Share your Story : Tine

African American woman smiling

Tine is the co-captain of Team Zimbabwe’s 2016 EndoMarch.  She and Nadia are seeking to raise awareness regarding Endometriosis, menstrual health, education the medical community, and letting women in their country know that they are not alone…and this pain is not normal.  Tine is also heavily involved in the NGO As I Am Foundation, a foundation that creates projects that are sustainable for the disadvantaged.  Nadia and Tine have shared their stories in the hope that it will encourage other African girls to be aware and not ashamed.  Tine’s story follows:

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The Endometriosis Foundation of America’s 2015 Medical Conference

Once a year, the Endometriosis Foundation of America hosts a Medical Conference, a Patient Awareness Day, and their annual fundraiser, the Blossom Ball.

A certain organization that shall remain unnamed charges nearly $100 for a DVD collection of their medical conference from over a decade ago.  I purchased those DVDs, and have no regrets about spending the money.  However, I am so grateful that the E.F.A puts their conference speakers’ videos online…for FREE…for our education and enjoyment.  I will never be able to afford to go to their conference in New York and love that they make the contents of the conference available to the rest of us.

If you wish to watch the E.F.A.’s videos, they are broken down into small videos of each speaker. I haven’t finished watching them all myself yet, but wanted to make sure you were aware of these amazing resources. 

Enjoy.  Learn.  And pass it on.

Yours,

Lisa

Share your Story : Nadia

Nadia is the team leader for Team Zimbabwe.  They’re putting together the first ever EndoMarch in their country and are hoping it will be a great success.  They are also hosting a February 27, 2016, awareness campaign with guest speakers to try to not only raise awareness of our illness, but hold in-depth conversations about possible causes and future treatments.  Nadia and I have been talking for the past several days and she’s allowing me to share her story with you today.

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Feel Good Fridays

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It’s Friday!  Today’s quote is by Nemo Cox, and I fell in love with it:

“Rocks in my path? I keep them all. With them I shall build my castle.”

2016 starting out a bit rocky?  Build from it.  You’ll overcome this! Whatever it is.  And if you need help, ask for it.

I hope you have a wonderful weekend.

Yours,

Lisa

Reader’s Choice : How to find an Endo Specialist in my Area

A soldier searching through binoculars

It’s a New Year!  Time for new beginnings, fresh starts, and resolutions!  And time time for me to start writing again 🙂

Today’s question is from one of our Readers, and she asks, “Do you have any advice on how to find a local or local-ish doctor who ‘specializes’ or at least is studied in endo more so than your averge ob/gyn? I’m looking for someone like that, but no luck so far.”

So, how do you go about finding a specialist in your area?  It will take patience, research, and balls.  That’s right : balls.  And, I want to make it clear that I am not endorsing any of the physicians identified in this blog, or any of the links provided.  Just hoping to point you folks in a direction…hopefully the right one for you.

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Feel Good Friday

First of all, Happy New Year!!!  It’s 2016.  A new day.  A new month.  A new YEAR!  I know not all of you had a happy or easy 2015, and this post is for you:

“Happy New Year’ is a festive form of address often uttered without thinking. Yet how many souls will in fact be happy in the coming year is a taxing question requiring a great deal more thought.”

and

“New Year – a new chapter, new verse, or just the same old story ? Ultimately we write it. The choice is ours.”

Both of these quotes are by Alex Morritt, author of Impromptu Scribe.

For any struggles or battles you may have fought and lost in 2015, hang on.  If you need help, reach out and ask for it.  If you need someone to lean on, find someone.  Feel free to let your true self show this year; don’t hide behind a fake smile.

And if you need me, I’m here.