Thoughts for my Third Year Anniversary

yellow birthday cake with flowers and candlse

Three years ago today I went in for a surgery to remove a possible dermoid cyst from my left ovary. A simply, 1.5 hour surgery. Four hours later, surgery was completed. My Mum and Jim were never advised why my surgery was taking so long, didn’t have their questions answered. So it was a very stressful four hours for them. No cyst…but Endometriosis lesions and adhesions everywhere inside my pelvic cavity. And it was a three-week recovery process, but months before I felt good.

Three years ago today I learned I wasn’t crazy. I wasn’t weak. All of the pain I’d experienced since my teenage years wasn’t normal. I wasn’t supposed to HURT like that. I wasn’t supposed to miss days from school or work. I wasn’t supposed to bloat up like a balloon. It wasn’t normal to bleed for 10 days.

Most importantly, I learned I wasn’t alone. One in Ten women suffer from this invisible illness. An estimated 176,000,000 (yes, that’s million) women worldwide suffer. Well, we call it an invisible illness because Joe Public cannot see it from the outside. But it can bee seen…from the inside. Invasive growths throughout the body, leakage, blood-filled cysts, spiderweb-like scar tissue that weaves organs together or twist them out of shape. Surgery is the only way to diagnosis the disease…and considered the best way to manage it.

A recent study found that Endometriosis lesions shared cancer-causing mutations. Endometriosis is not cancer…but it can spread like it. For most who suffer from Endometriosis, it’s found in the pelvic region: fallopian tubes, ovaries, uterus. But for others, it can be found anywhere: liver, diaphragm, bladder, ureters, lungs, heart, brain, bowels, spine, belly button – there are even cases of people having it in their sinus cavity, their fingernails, muscles, and nerves. The list goes on and on and on.

Some lucky women don’t suffer from the pain the disease may cause. Others suffer several days a month. And, yet, others suffer every single day. And there have been cases of men developing Endometriosis, as well as animals (including a dog!). And so many women are killing themselves because there is no end in sight, no hope for a pain-free existence. What helps one woman may not help another. And they just…let go. It’s ruining lives.

There is no cure. And treatment options can have horrendous side effects, be insanely expensive, or have little to no effect. And none of it is permanent. I had my second Endometriosis excision surgery in September of last year. Two surgeries in three years. Some women have surgeries every year…or every few months. I consider myself lucky.

You may wonder why I post so often about Endometriosis. Why I blog about it. Why it’s consumed my life. This. This is why:

There are physicians out there that are still advising their patients that their pain is normal. “It’s just part of being a woman.” Or “get pregnant and you’ll feel better.” Or “A hysterectomy will cure it.” Or they refuse to perform a diagnostic surgery to at least *LOOK INSIDE* to confirm the presence of the disease. And, yet, some surgeons will cut you open, find lesions, have them biopsied and confirm they’re Endometriosis – and yet fail to REMOVE the lesions. WHY?!? Why would you LEAVE that in there?!? Cut it out!!!!! It’s not doing anything but causing havoc, pain, and internal scar tissue. It will only continue to fester and worsen.

I’m ranting…so today, three years ago, I woke up with answers. And started an endless quest for more. I have a greater understanding of this horrible disease. And have met so many amazing women and physicians along the way. Three years ago was an amazing day.

And I celebrate it today. 

If you know someone with Endometriosis, please be patient with them if they need to cancel plans, or just stay in bed all day, or need to go home early. It can be so debilitating.

And if you suffer from Endometriosis, consider yourself hugged.

Feel Good Fridays!

Text that reads "Endo is such a stupid disease, but your image symbol fro endo gives it so much more meaning to me. I am a woman, I have an invisible illness, I still have value, and I am still beautiful."

Today’s quote is from an anonymous reader of my blog who wrote me shortly after Bloomin’ Uterus came to be.  She simply emailed me one day:

“Endo is such a stupid disease, but your image symbol for endo gives it so much more meaning to me.  I am a woman.  I have an invisible illness, I still have value, and I am still beautiful!”

I’ve shared this in the past.  But why am I sharing it again today?  Because today is special.  Today is the third year, to the DAY, that I received my Endometriosis diagnosis.

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A fantastic video showing various locations and colors of Endometriosis

Text that reads "Laparoscopic appliance of endometriosis"

One of our local EndoWarriors shared this video with us last night on Facebook and it was so incredibly awesome (gross, amazing, cringe-worthy, “ah ha!” worthy) that I wanted to share it with you today.

In 2014, Dr. Xiaoming Guan published this video on Youtube.  It may be too graphic for some, but it’s very educational.  If you have photographs from your surgeries, pull them out and compare!  It’s fascinating!  You may even recognize some locations where your Endometriosis lesions were (or still are) located…or recognize the phrases from your op report(s).

To quote my favorite cartoon growing up, “And knowing is half the battle.”

Just a few thoughts I have to get out

Last night I had a dream that my Endometriosis was back.  I had gone to my doctor’s office for a visit because my pain was unbearable.  My mother was with me.  Cindy was my nurse once more (yay) and as we waited for the doctor to come in to discuss some test results, my Mum was holding my hand and Cindy was crackin’ jokes.

Dr. K. comes in with an imaging study of my boob. Ha.  Tells me that that lump…yes, that lump right there…is an Endometrioma. In my boob.  And that surgery would take place tomorrow.  And I began sobbing.  The dream ended there…

Even though I know Endo can’t (usually) be seen in imaging studies, doesn’t grow in boob-soft tissue, excision surgery doesn’t get scheduled *just like that*, and Cindy won’t be my nurse anymore (phooey), I still woke up with a feeling of … what’s the word? Dread? Grief?  I’d go with grief. Flat out sadness.  The sense of let-down and mourning in my dream was so very strong.

My last excision surgery is still going on strong.  Some days I have pain, but it’s nothing compared to what it was prior to my two surgeries.  But, for many, many, many women surgeries, diet, supplements, medication, and Eastern medicine do nothing to relieve their agony.  For some women, grief, sadness, and mourning are a regular, daily occurrence.

And my heart breaks.  Not only for those women still in pain, but for the Great Unknown of wondering if, or when, it may return for those who are not.

Endometriosis in Rhesus Monkeys

Baby and adult Rhesus monkeys

In the past, I’ve written about Endometriosis being found in two mandrillus sphinx,  a German Shephard and cynomolgus monkeys.  I know when I think of Endometriosis, I have to remind myself that any person, including cis-men can develop it, as well as animals.  A study hit my inbox this morning about monkeys, rhesus macaques, developing Endometriosis.

The 2017 study published in Primate Biology discusses rhesus macaques (aka rhesus monkeys) that were housed at the Biomedical Primate Research Centre in the Netherlands and the New England Primate Research Center in the United States.  Not only did the study discuss the spontaneous development of Endometriosis in these creatures, but it focused on the genetic similarities between humans and these monkeys in the hopes of continuing the studies of finding genetic links to the illness.

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Feel Good Fridays!

Graphic of a globe

Well, it’s been an extremely busy week for me; sorry I haven’t done much blogging. BUT it’s Friday!  Another week is passed.

Today’s quote was provided to me by my Mum, and is from Mahatma Gandhi:

“In a gentle way, you can shake the world.”  

Whether it be helping a friend through a hard time, sparking up a conversation with a stranger, helping out with a non-profit, volunteering at an animal shelter, reaching out to those in need, or even something as grand as writing your Congressman ~ the action doesn’t have to be momentous to make a difference.

Have a wonderful weekend.  And go shake the world a bit…

We have Mugs & Stickers Available!

a mug and sticker with the bloomin' uterus logo

Woohoo!  I got a hankerin’ to do more fundraising!  And as usual, all of the profits are donated to the Endometriosis Foundation of America!  None of this goes in my pocket.  Why should it?

Now’s your chance (well, until July 10, 2017) to purchase your very own Bloomin’ Uterus mug ($10 for an 11 ounce mug) or Bloomin’ Uterus sticker ($6 which is roughly 3″ x 5″…or they have a larger size available, too).  After July 10th, Teespring will end this campaign and send everything off to the printer!

Head on over to our little store.

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Feel Good Fridays!

What a week. So much tragedy in the news: explosions, shootings, fires…so much death and despair.  Well, it’s Friday – so let’s turn end it on a positive note; shall we?  I couldn’t decide on one quote today, so I’m sharing a few with you.

“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”
Dalai Lama XIV

“A person’s tragedy does not make up their entire life. A story carves deep grooves into our brains each time we tell it. But we aren’t one story. We can change our stories. We can write our own.”
Amy Poehler

“All I could think about as I stood there was that sometimes life gave you a tragedy that burned everything you knew to the ground and changed you completely. But somehow, if you really wanted to, you could learn how to hold your breath as you made your way through the smoke left in its wake and you could keep going. And sometimes, sometimes, you could grow something beautiful from the ashes that were left behind. If you were lucky.”
Mariana Zapata, Wait for It

I hope you have an incredible weekend.  Spent some time with friends and loved ones.

Blogs I’ve Updated This Week:

C-Sections and Endometriosis – added a new study from the Journal of Obstetrics and Gynaecology Canada who developed a mass in her c-section scar.

Ongoing Research Studies re: Endometriosis – updated new studies (and deleted completed studies) around the globe that YOU may be able to participate in to further research for Endometriosis.