Thoughts for my Third Year Anniversary

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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!

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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.

June 30, 2014…a day that changed my life.  I went in for a cystectomy to remove a possible dermoid cyst from my left ovary.  The surgery was only supposed to last 1.5 hours.  Four hours later, I emerged from under the knife…No dermoid cyst, but –  *surprise* an Endometriosis diagnosis.  My life hasn’t been the same since.  And I couldn’t be more grateful for it.

I also went through six months of Lupron Depot injections (and all the “glory” that came with that) and was on a continuous birth control pill for 18 months.  My pain returned, daily, with a vengeance.  So I had a second excision surgery on September 21, 2016.  I have also altered my lifestyle choices and diet in the hopes of keeping my Endo at bay.  So far, so good – minimal pain from time to time.  Life has it’s ups and downs, both mentally and physically, but I have to just pick myself up when I can and continue living. ❤

More importantly, I’ve met hundreds of women who share this condition and connected with even more online.  I have learned about an illness I’ve had since puberty, have embraced the fact that I wasn’t weak or crazy, and learned that I am not alone.  And have been able to spread awareness to others, teaching (and learning) from friends, family, and strangers.

I started blogging a few months after my diagnosis, a way that I could learn more about our condition and share what I found.  It’s been therapeutic for me since Day One, but now I get to help others, too!  I designed a logo to help me cope with the ugliness within my body, which morphed into buttons and t-shirts.  I’ve also started a local support group here in San Diego.  What started with two people now has 117 members in our local support group on Facebook.  Several of us also meet once a month face-to-face.  We’ve had three annual awareness walks and have raised over $5,800 for the Endometriosis Foundation of America since 2014.  Bloomin’ Uterus was asked to host two workshops here in San Diego (one for Endometriosis and one for PCOS, which we did).  AND have had the pleasure of working with several local groups and businesses who have also raised funds for the E.F.A. in their own way.  It’s glorious!

So many people ask me how they can start something in their area, and I tell them : just start something.  I’m amazed at how this happened.

Three years ago today truly changed my life.  Happy Third Endoversary! And I wouldn’t be here without the support of my friends, family, physicians, and fellow EndoWarriors. Thank you.

I will endure.  I will flourish.  And I am still beautiful.

And so are you.

Have an incredible weekend and a safe Holiday (for those of you in the States).

 

A fantastic video showing various locations and colors of Endometriosis

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One of our local EndoSisters 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

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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 often simply think of it as a women’s disease…but have to remind myself that men can get 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.

Eight monkeys from the Biomedical Primate Research Centre had Endometriosis.  Their ages ranged from 12 to 21 years of age; none had prior surgeries.  Seventeen monkeys from the New England Primate Research Center had Endometriosis, and they ranged from 12 to 20 years old.  Four of those 17 had previously delivered offspring via cesarean sections.

In both facilities, the monkeys were housed in large social groups in the hopes of “mimicking the natural ecology” of uncaptive life. They were fed monkey chow, fruits, vegetables and grains.   And, as a matter of procedure, anytime an animal passed away (either naturally or by euthanasia), an autopsy was performed.  Tissues were flash frozen and set aside.  The study reviews those detailed medical and histology records of each monkey, as well as any preserved tissue samples.  Almost all of the monkeys were of Indian origin, with the exception of a few mixed breeds and one with Burmese descent.

Many of the monkeys who were posthumously diagnosed with Endometriosis had previously exhibited the usual signs and symptoms: bloating, pain, painful periods, or “cystic lesions” detected via ultrasound.  Every time I read of an animal with the disease, it breaks my heart; we, at least, can express our pain.  They cannot.

The DNA and genetic analysis of the study goes waaaaaay over my head…so I’m not even going to try to summarize it for you.   It did clearly mention; however, that it may result in an altered immune response, which may affect Endometriosis.  But you can read it for yourself via the link in the Resources section below.

As usual, more studies are needed!  And that’s the hope: to spawn one that may lead to a better understanding of the cause of Endometriosis.

Resources:

Primate Biology (Article, June 2017) – Spontaneous Endometriosis in Rhesus Macaques: Evidence for a Genetic Association with Specific Mamu-A1 Alleles

Primate Info Net

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Feel Good Fridays!

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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…

Two New Studies: Endometriosis & Effects on Partners

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In June 2017, two new studies were published both focusing on the effects of partners of women with Endometriosis.

In the first study we’ll be discussing (from The Journal of Obstetrics an Gynaecology Research), 51 partners of women with Endometriosis completed and returned questionnaires.  A breakdown:

  • 75% reported a negative affect on their own day-to-day life;
  • 52% felt their finances were affected (partly due to the fact that their partner’s weren’t able to work as much, if at all);
  • Although 70% of the partners were involved in the healthcare decision-making process, only 34% felt that healthcare providers had engaged them in that process;
  • 80% stated they hadn’t received information about dealing with Endo as a couple;
  • 74% reported on affect on sex life, mostly due to the pain it causes their partners. (All except 8 partners said they could not have sex because of the pain it caused);
  • 56% reported on affect on their relationship; and,
  • It suggested that better education and support be provided to partners of women with Endometriosis.  And it stated, “Involvement of partners from the beginning, normalization of symptoms, and education may assist in dealing with the burden of the disease.”

The second study, published in the Oxford Academic publication, Human Reproduction, included 22 male partners of women with Endometriosis answering questions.  In summary:

  • Nearly half of the participants stated sex was rare to non-existent.  This was due to pain, lack of desire due to medication, fatigue, stress, bleeding before/during sex, or even just feeling unattractive.  Four of the men stated matter of factly that they don’t want to pursue sex because it hurts their partners;
  • It affected the ability of many to have children, or frustrated efforts to conceive;
  • Many men reported a difficulty in their work due to taking time off of work to be with their partners, childcare, or household tasks.  Many of these men felt an added pressure to provide more income due to their partner’s inability to work as much (if at all);
  • New roles in the relationship developed since the diagnosis: accompanying them to appointments, taking time off work to care after surgery, household chores and tasks, child care, and a much deeper support role emotionally;
  • Most men expressed feeling helpless, frustrated, worried, and angry (anger was directed toward healthcare) regarding Endometriosis;
  • The majority of men felt there was a lacking of support for partners of people with Endometriosis.
  • And my favorite?  Many described that since the diagnosis, they’ve learned to become better partners:  caring, listening better, more supportive, has brought them closer, strengthened the relationship.

I am grateful for an understanding and supportive partner, but I also know that many women don’t have a partner who is as understanding.  And that breaks my heart.

If YOU are the partner of someone with Endo and are searching for support, consider joining the Braave support network (they’re on Facebook here); it’s specifically for partners of EndoSufferers.  If you know of any other support groups for partners of people with Endometriosis, please let me know! I’ll add them here.

And, both studies are linked below in our Resources section, if you’d like to read them.

 

Resources:

Braave – online support network for partners of women with Endometriosis

Oxford Academic Human Reproduction (Article, June 2017) – A Qualitative Study of the Impact of Endometriosis on Male Partners

The Journal of Obstetrics and Gynaecology Research (Article, June 2017) – Exploring the Impact of Endometriosis on Partners

 

We have Mugs & Stickers Available!

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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 https://teespring.com/stores/bloomin-uterus (only the mug and sticker are presently active…shirts will go on sale once more in Feb. 2018 before our Endo Walk).

Mugs: Enjoy your morning coffee or tea while reading our blog?  Why not enjoy it in your very own Bloomin’ Uterus mug?  Support Endometriosis research and awareness – 100% of the profits (that’s $2 per mug) are donated directly to the Endometriosis Foundation of America.   Don’t have Endometriosis but know someone who does?  Surprise them with this beautiful mug.  Let it remind them daily that they truly are still beautiful, even on those bad pain days.

Stickers: Looking to decorate? Slap a Bloomin’ Uterus sticker on all the things!!!  100% of the profits are donated directly to the Endometriosis Foundation of America .  Spread some Endometriosis awareness!  Share some information!  Get out there and put stickers on eeeevvvveeerrryyytthhhiiinnnggg!

I will be ordering mine tonight 🙂  Will you?

(If you have any issues with the link or procuring your goods, please shoot me an email, comment, or note).

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 Osbtetrics 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.