Four Years Ago Today…

Photo of Lisa before June 30 2014 surgery; wearing hospital gown and cap lying in bed
Sept. 2016

June 30, 2014: a day I went in to have a cyst removed from my ovary and instead awoke to a diagnosis of Endometriosis.  Answers.  Vindication.  My years of pain had a name.

So, I celebrate this day.

I am writing this on Friday, June 29th since I will be away from my computer on Saturday.  And today (Friday) I just scheduled my third excision surgery.  It will take place on August 15, 2018…almost two years since my last surgery.

June 30, 2014: D-Day (yep, Diagnosis Day); performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

September 21, 2016: Surgery No. 2; performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

August 15, 2018: Scheduled Surgery No. 3 (with the possibility of being sooner if there is an opening in the hospital’s schedule); to be performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

This blog wouldn’t exist without the events that took place on June 30, 2014.

I wouldn’t be seeking answers.  Wouldn’t be honoring my body.  Wouldn’t be connecting with others.

Our Bloomin’ Uterus support group wouldn’t exist.

There would be no annual walks or monthly get-togethers.

I would have no idea about the other women who suffer with me.

No camaraderie.

No support.

 I would still be alone, thinking my pain was normal and that I was weak.

And now I know that I am none of those things.

I am surrounded by Sisters and family.  Warriors!  Our pain is anything but normal.  And none of us are weak.

My life has been made better by being told I have a chronic, incurable illness.  And I have met some incredibly strong people because of it.  May we continue to hold each other high as we make this Journey together.  It’s not easy.  But we have each other.

So, celebrate today with me.

Feel Good Fridays

Good morning! Can you believe another week has already come and gone?  June is OVER!  What the heck?  I feel like June just started yesterday!

So, it’s Friday. And you know the drill!  Today’s quote is all about acknowledging whatever fears or sorrows you may have and giving yourself a great big hug.

“She held herself until the sobs of the child inside subsided entirely. I love you, she told herself. It will all be okay.” 
― H. Raven RoseShadow Selves: Double Happiness

Whatever it may be that crushes you, hang in there.  It will all be okay.  And if you need it, reach out for some help for those around you.

Have a wonderful weekend.  Love, Lisa.

Share Your Story: Michelle

Photo of Michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

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Share Your Story: MfrBeth

Words on a black and white background: All Endo that had been removed 5 months earlier was back!!!

MfrBeth is a bit tough to type, so I’ll call her “Beth.”  Beth’s daughter started showing symptoms of Endometriosis when she was 12 and was diagnosed with Endo when she was 15 years old.  Now 16, Beth has questions pertaining to her daughter, and shares her journey today.

Beth’s Daughter’s Journey: My daughter started having what we now know as endo symptoms at age 12, not long after her periods started. We did hormone check to see if they were not in parameters and she went on natural hormones-estrofactors and progesterone cream. This helped for a while, but she always had to go to nurse office at school for Midol for 1-2 days of her period, would be nauseous and have a headache and cramping.

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It’s coming.

A cat versus a vacuum with the Dune fear mantra written on the image

Well, I had my ultrasound today with Dr. Kurtulus.

And we talked for about 30 minutes afterward. My suspected chocolate cyst has grown another 1/2 centimeter, which wasn’t distressing to him yet. But we discussed my journal, my symptoms, my pain, my concerns, my vacation plans, and a possible hysterectomy.

If I opted to go to Burning Man this year, I’d deplete any vacation time if I needed surgery later this year. And be left with no option but to suffer until next year when my vacation time renewed. And who knows what can happen in six months…

Due to my pain levels as of late and my progressing symptoms (and growing cyst), there’s no time like the present. Why delay? Me first? As my cousin whispers in my ear each time we hug, “You be good…to you.”

I asked about a hysterectomy. Jim and I aren’t planning on having children. And although it’s not a cure, it may help with a large part of my pain every month. After lengthy discussions of pros and cons, as well as several doodles of my fancy dual-cervix and septated vaginal canal, we shall wait on the hysterectomy. My bits are complicated.

So, in a month or two, we’re gonna peek under the hood and have a look.

The chocolate cyst will be removed.

Any Endometriosis lesions will be excised. (Assuming he finds any)

Any adhesions will be freed.

And my anatomy shall be restored as best as possible.

Now what about this new under-the-rib pain that I’ve been enduring for the past two weeks? He knows, as do I, that I have Endometriosis on my diaphragm. It was one little spot, as memory serves. But he’ll do his best to analyze the underside of my diaphragm while he’s poking around my pelvic cavity…And we’ll discuss future surgical options (which would require the skills of a cardiothoracic surgeon) from there if he feels that it may have worsened or migrated.

Going in today feeling strong about that pending discussion made it easier to walk out with a smile on my face. And I could be in no better hands than his. He has my utmost trust and respect.

But it still takes the wind out of my sails, so to speak.

I called my husband. Then my mom. And my work was very understanding. I’ve told a few friends. And I’ve formally canceled my Burning Man plans.

But here I sit. Blabbing and letting it all hang out. I want to throw up. I want to cry (hell, I am crying). But I still feel strongly that this is the best decision for me right now. And if he opens me up and doesn’t find any Endo, it will open up avenues to explore what is causing this pain.

I love you, Sisters and readers.

I hate this disease.

It May Be that Time Again…

A diagram comparing pain from August 2016 to June 2018

Oh, the thoughts you have when you’re contemplating another surgery for Endometriosis…and possibly a hysterectomy. Yes, I know it’s not a cure, but it would free me of periods and a cramping uterus. I’ve always said that if I need a third surgery, I’ll opt for a hysterectomy. I’m on the cusp of being 40-years-old…menopause is close enough at this point and my husband and I don’t want children at our age…

Last night was the eve of my transvaginal ultrasound. From my May exam, it was confirmed that I have what is suspected to be an endometrioma on my left ovary. If it’s not a chocolate cyst, it’s a dermoid cyst…which is the same reason why I went in for my first surgery in 2014…and *poof* received my Endometriosis diagnosis. And since June 7th, a new pain has manifested. A brutal pain that has reared it’s ugly head nearly every day since. And spawned me to move my ultrasound up to today. Very soon…at 11:45am, I’ll be in a chair, feet up in the stirrups, and a magic wand shoved up my hoo-haw.

Pain summary from June 2018

After thoroughly reviewing my pain and food journal, evaluating triggers and identifying patterns, and having a long discussion with my husband…I’m going to pop the question. “What about surgery?” Already. It appears I have a two-year track record for this sort of thing…2014…2016…and now 2018. That means canceling vacations and altering plans. But it’s worth it. The quality of life that excision surgery has granted me twice before has been worth it.

Then, compare my pain charts from August 2016 (right before my 2nd surgery) to June 2018. I was literally flabbergasted at the similarities…

A diagram comparing pain from August 2016 to June 2018

As I verbally vomited all of my thoughts to my husband last night, I flat out stated, “I want someone to tell me what to do. What would you do if you were in my shoes?” He looked at me…and turned it around. “Lisa, if I were an EndoSister and just told you all of this, what would you tell me to do?”

That settled it. In one fell swoop, “I’d tell you to go have a look under the hood…” And immediately I was at peace. A weird sort of peace…the resolved peace where you now have a direction to go, but the absolute upheaval of emotions of what that brings. Along with the doubts, the What Ifs, and the Emotional Rollercoaster…

“What if my surgeon says no?”

“What if they don’t find any Endo?”

“What if it’s progressed deeper into my diaphragm and they can’t see it?”

“Do I ask to keep an ovary? Which one?”

“How bad will recovery be this time?”

“How long will relief last?”

“What if it’s all in my head and I’m making a mountain out of a molehill?”

“If there’s no Endo, what IS causing my pain?”

“Maybe I have Adenomyosis and nobody knows yet.”

“What if I cause more adhesions with surgery?”

“What if it never ends?”

And as any of you fellow bloggers know: writing about this makes me feel a little better. And knowing that my words may reflect what another reader is enduring…and knowing that we’re not in this alone makes each of us stand taller.

Feel Good Fridays

Paper dolls holding hands

It’s Friday! Another week has come and gone. Summer is officially upon us, and the year is half-over!

Today’s quote is due to the overwhelming love and support we share in a community of Warriors.  Not just the Fighters, but our support: our friends, family, significant others, and even our pets.

“It was quite a beautiful thing, the way we simply just came to be. With no effort or trying, just slowly finding each other’s hands in the dark. No chains or promises, just a simple sign of hope that things will go on and get better.”
― Charlotte ErikssonYou’re Doing Just Fine

I would not be where I am today without you.  And you have my love and respect.

Love, Lisa

An Endo Study in the UK is Looking for Participants

A fountain pen resting on a page containing the definition of research

Are you a South Asian Muslim woman living in the UK and have you been diagnosed with Endometriosis?  This one is for you!

Shabnam Jheengoor is a student at the University of Derby and she is working on her a research study for her Master’s in Psychology thesis.  Her work is being supervised by Dr. Sophie Williams.

She will be exploring the experiences of endometriosis of South Asian Muslim women in the UK.  Why?  Research suggests that culture/faith can influence one’s experience of living with endometriosis. Little is known about the challenges, concerns, needs, and experiences of South Asian Muslim women in the UK with endometriosis.   Shabman wishes to shed some light on that subject.  And offer these women a voice.

Qualified participants will be expected to take photographs of their daily life of living with endometriosis. The participants will be given 2 weeks to take photographs and the choice of photographs is theirs, following ethical photography guidelines of course.

Their participation will remain confidential and anonymous and is completely voluntary. Participants may also withdraw from the research before, during and after participation.

For more information on the study, please check out the participant form or you may contact Shabnam directly by email.  The recruitment period will close at the end of August 2018.  So, if you are able and interested, please get in touch with Ms. Jheengoor.

Recruitment flyer for endometriosis study