Question from our Reader, Candace

Candace needs your help, feedback, and advice!  She writes:

Hello, I have been an “endo” sufferer for MANY years….many, many, MANY surgeries and a hysterectomy with surgeries to follow! I don’t ever pretend to be an expert on the topic and this question certainly has thrown me for a loop….I’m hoping one of you can help!

I have had a “mystery illness” since February. Extreme fatigue, hoarseness, and right side facial pain, numbness. I have had a slew of tests all of which come back “ok”. Just this past weekend, I started with my “typical” “endo” pain. I am just wondering if this all could be related to “endo.” Anyone else ever experience facial issues related to endo?

I am looking forward to any and all responses. I have been debating on calling my specialist…. Thank You in Advance!

If you comment below, I’ll pass it on to Candace. ❤

Feel Good Fridays

men playing tug of war with a thick rope

Friday! Already!?!  This week flew by!  Busy, busy, busy…

I love today’s quote and wanted to share it with you.

“Life is painful and messed up. It gets complicated at the worst of times, and sometimes you have no idea where to go or what to do. Lots of times people just let themselves get lost, dropping into a wide open, huge abyss. But that’s why we have to keep trying. We have to push through all that hurts us, work past all our memories that are haunting us. Sometimes the things that hurt us are the things that make us strongest. A life without experience, in my opinion, is no life at all. And that’s why I tell everyone that, even when it hurts, never stop yourself from living.” 
― Alysha Speer

If you’re in the middle of some…crap…hold on.  Endure.  Push through.  You’ll come out the other side, eventually.  And when you do, look back and know that you possessed some incredible strength.  And still do.

I hope you have a beautiful weekend. ❤

Blogs I’ve updated this week:

Endometriosis on your Skin : an abstract about a 25-year-old woman who developed Endometriosis in her belly button.

Totally Not Endo-Related

Desert View Tower in San Diego County, California

Good morning!

WordPress allows me to upload videos to my site, so I thought I’d give it a try with a very, very important video.  Well, important to me. ❤

On April 1, 2017, my husband and I pulled off a fantastic April Fool’s Day event.  We got married…again!  🙂  James and I were formally wed on June 8, 2016, in a small ceremony at our local County Registrar’s office.  My mum, brother-in-law, and his lovely wife attended.  And we kept it a secret from *most* of our friends and family.

On April 1st, we had our ceremony at the Desert View Tower in Jacumba Hot Springs, California, with our friends and family.  The Tower is one of our favorite places to visit, not only for the beautiful views, but for the history, the pups, and the beautiful people who live there.  The desert, a Dune-themed ceremony, tacos, cupcakes, dancing, and camping.  It was perfect.

We didn’t exchange rings during our ceremony.  Instead, we offered rings to each of our guests, as a pledge of our love and loyalty to each of them.  I still get warm and fuzzy when we hang out with friends who are still wearing their rings.  ❤  We made our big “April Fool’s” announcement after our ceremony and dinner. 🙂  And I’m so glad we opted to keep it a surprise.

Celebrating our union with friends and family in our own wonderful way.  Such an incredible memory.

I am so grateful.  And we are both so loved.

Our 3-minute video:

Video by Compass Media Productions

Photographs by Lynn Fernandez

Feel Good Fridays!

Girl looking over the edge of a cliff

It’s FRIDAY!  I hope you’ve all had a good week.

Today’s quote is about bravery.  This week has been full of EndoSisters speaking up, sharing their stories, encouraging others, or even just answering some questions that may be considered too personal.  And for that, I commend you. ❤

“There are so many ways to be brave in this world. Sometimes bravery involves laying down your life for something bigger than yourself, or for someone else. Sometimes it involves giving up everything you have ever known, or everyone you have ever loved, for the sake of something greater.

But sometimes it doesn’t.

Sometimes it is nothing more than gritting your teeth through pain, and the work of every day, the slow walk toward a better life. 

That is the sort of bravery I must have now.” 
― Veronica RothAllegiant

May you continue to have a good week, a wonderful weekend, and peaceful sleep in between.

Free Endometriosis Webinar: Dr. Justin Lin

Event flyer for Dr. Lin's "the secrets to redefining endometriosis" event

Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! July 19, 2017, they’re offering a free online webinar by Dr. Justin Lin entitled “Fearing Endometriosis and Your Function.”

If you’d like to log on and attend, please email Megan or follow register online.  Registration is free, but required.

A huge thank you to Megan and the Endometriosis Family Support Group for all that they do!

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.

Continue reading

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.