EndoWhat? A Free Screening

Flyer for EndoWhat screening in San Diego on March 16, 2019

Do you have Endometriosis or know someone who does?  Or maybe you think you may it?  

Join us for a free screening of the EndoWhat documentary in San Diego, followed by a Q&A panel hosted by Dr. Sally  Rafie of The Pharmacists Clinic, Sister Donatella Soul of the San Diego Sisters of Perpetual Indulgence, and Lisa Howard of Bloomin’ Uterus.

Come to meet other EndoWarriors, like yourself.  Bring your friends and family and educate them about our illness.  Empower yourself and educate others.  Together we can do great things!

Seating is limited to 250 people, so please reserve your tickets today.  

Tickets available at EventBrite.

March 16, 2019; the screening will begin at 1:00p.m. UC San Diego Skaggs School of Pharmacy & Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. There will be free parking on the campus.

**

Endometriosis or “endo” is the most common, devastating disease that most people have never heard of. It affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet.

Despite its prevalence, women see an average of 8 doctors for 10 years before diagnosis. During that time, many are forced to miss school, leave careers they love, abandon dreams of having children and watch their personal relationships suffer. They’re often told incorrectly by doctors that pregnancy & hysterectomy are cures and that pain is normal or in their heads. After diagnosis, they’re usually prescribed an array of drugs & undergo multiple, ineffective surgeries.

It’s time to break that cycle. It’s time for a new normal that doesn’t mean multiple doctors, drugs, surgeries, misdiagnoses and years of pain. The only film of its kind, Endo What? gives an accurate, up-to-date base of knowledge straight from the experts.

It’s a film to educate & put power where it belongs – in the hands of girls & women.

**

Where: UC San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. Follow the stairs outside the building down to the lower level.

Exterior of building of Skaggs School of Pharmacy at UCSD campus

Parking: There will be free parking available at the parking structure in the blue-highlighted area:

Map of where to park for screening at UCSD campus

I’d like to extend a HUGE thank you to Dr. Sally Rafie and Sister Donatella Soul for all of their hard work in helping me bring this event to the San Diego community.

**

We hope that you can join us!

An addition to my Endo Tattoo

Me receiving tattoo on upper backside of left arm near armpit

Many of you already know I have a large tattoo on my left shoulder, which represents my journey after I was diagnosed with Endometriosis in 2014.  And many of you also know that each time I have a surgery because of Endometriosis, I add a blood droplet to that tattoo.  And each time, my best friend and Seester (Rosie) comes to be with me during the tattoo session.

So, this year I not only wanted to add another blood drop but I felt a need to somehow honor my sterility since my fallopian tubes were removed, and with them any chance or choice of continuing our family line.

Knowing I’ll never give him a son or daughter, knowing we’ll never hold them in our arms, change diapers, watch them grow up, all the glorified things that my heart aches for.  About a year ago, Jim and I shot a film project for a friend of ours.  We were parents of a beautiful infant girl, Emily.  And while we weren’t filming, he continued to hold her and just seeing him rock her in his arms, coo at her, smile when she made cute bubbly baby noises, smell her head – it filled me to the brim with warm feel-goods.

Although both my husband and I have wanted children at some point during our lives (or shall I say our prior-to-meeting-each-other lives), we no longer felt like we did at our age (I’m pushing 40, he’s pushing 50).  So why couldn’t I stop sobbing?  During my grieving process, I tried to better understand why I was so very upset. Lots of soul searching led me to a conclusion.

Yes, the chance to procreate and to hold our own child in our arms was now gone.  We could adopt, but as I stated above, we truly did not want children at our age.  But if one happened by mistake…we both would have been so happy.  Wait…I’m digressing once more. I already covered that.

So, where was I?  Yes, my sterility.  The choice to remove my fallopian tubes was made prior to my laparoscopy.  If it even remotely had any chance of ceasing the progression of Endometriosis, let’s do it (yeah, yeah, I know – retrograde menstruation is a sneered-upon theory, but it’s worth a shot).  And even if the decision hadn’t already have been made, my fallopian tubes would have been removed during surgery anyway because of the state they were in.  But…they are gone.  My uterus is a now a sealed tomb that will still continue to shed and bleed and remind me each month that it, at least, is still there and functioning.

Wait…I digressed again.  Obviously, I’m still dealing.  Back to the tattoo…

I wanted something that represented not only my sterility, the end of our bloodline (well, I have brothers, a niece, and a nephew, but I mean the direct bloodline of myself and my husband), and my coming to terms with it, but truly accepting the fact that my illness has robbed me of something I did want so many moons ago…

And suddenly it came to me.  I wanted a lit candle, burnt almost to the point of extinction.  Smoldering.   If you’ve followed my previous tattoo posts, you may remember that my artist’s name was Will Novotny.  Sadly, he passed away last year…I’ve been his client since 2009 and no only had the pleasure of being his client, but of becoming his friend.  And now my choice of tattoo had an even greater meaning: not only am I expressing my sterility and acceptance, but I am also lighting a candle in memory of Will…directly adjacent to the last tattoo he inked onto me.

I wrote my friend, Mia, who is a tattoo artist here in San Diego at the Jade Buddha Tattoo studio and explained what I had in mind.

Mia added the suggestion of the candle being held in the palm of a hand, wax dripping.  Then she expanded on that thought: have it held in my hand.  Our waning existence, mortality slipping between my fingers, and me grasping and accepting that very concept.  It was brilliant.

Then the creative process took off!   Not only did I love the journey, but it was so therapeutic talking about it.  And a HUGE thank you to Rosie for being there to comfort me during the painful 4.5-hour session.  And to Mia for her friendship, understanding, and talent!  This piece means SO very much to me.  It’s incredibly beautiful, seamlessly wound into my existing Endo tattoo, and it’s amazing!  I want to cry even just typing about its meaning and yesterday’s wonderful experience.  Oh, and if you can’t find it, the third blood drop is lingering at the bottom of one of the pieces of dripping wax.

Mia tattooing my underarm
A smidge of humor 😛

Some photos! You can click on a thumbnail, and click once more on the image it opens and it will open a full-size version.

And here’s a few videos trying to better show the entirety of the piece!  Neither the photos or videos do it justice!

(don’t mind the little peeling flecks all over the tattoo haha)

oh…and if you’ve made it all the way to the bottom…here’s my favorite photo taken during the session!  God, this piece hurt so much. So worth it!

Close up of tattoo in progress; covered in blood

If you’re in San Diego, I highly recommend Mia at the Jade Buddha Tattoo!!!

Documentary: Stronger Than Endo

White words on black background: Stronger than endo

My good friend Exxes Hauffen owns Compass Media Productions. One day he asked me, “What’s all this uterus business about?” – regarding all of my Facebook posts. So, I told him about Endometriosis and his next question was, “How can I help?”

Thus the beginnings of “Stronger Than Endo.”

A few local San Diegan Endo Sisters volunteered to share their stories and struggles. Exxes focused more on the emotional and quality-of-life aspects of the illness, rather than the physical symptoms that we are already so aware of.

We also interviewed my gynecologist and Endometriosis excision surgeon, Dr. Mel Kurtulus, of San Diego Women’s Health.

What you watch today is the end result of months of hard work. I am honored by the voice Exxes has granted us.

Exxes, thank you for your endless hours of dedication, for the passion that burned so brightly within you during the interviews, your hunger for knowledge, and your undying desire to bring awareness to this disease.

To Dr. Kurtulus, thank you for dedicating an afternoon of your time to this project, for your endless compassion and drive to give each EndoSister a greater chance at normalcy, and for giving me my life back. Your passion is evident every time I see you. And your “approachableness” is one of my favorite qualities you possess. You’re incredible; not just as a physician, but as a human being.

To Heidi, Merritt, and Zeiddy, I will never be able to thank you Brave Warriors enough. Not only for opening up your hearts to the world but for your ongoing support and love you have for other EndoSisters, even while you endure your own Battles.

This is truly a labor of love. Exxes filmed, edited, and produced this documentary free of charge. Dr. Kurtulus was not compensated for his time. And neither were myself or the interviewed EndoSisters. We hope that you enjoy, embrace, and share this video.

Without further ado, I give you “Stronger Than Endo”:

The full interviews with each EndoSister and Dr. Kurtulus will be made available shortly and shared separately.

And Exxes isn’t done yet. He’d like to continue interviewing EndoSisters and sharing our Journeys.


A note: The views and opinions expressed in this video are purely that: opinions. We understand that there are several theories as to the cause of Endometriosis, as well as the treatments. No one theory is correct. And we honor all opinions.

Our 2018 Endometriosis Awareness & Support Walk

2018 group picture
Photo by Exxes Fritz Hauffen

Oh man!  I cannot tell you how wonderfully excited I am after this weekend’s walk!

It was the 4th Annual Bloomin’ Uterus Awareness & Support Walk in San Diego and it was our largest one yet!  Out of 150 registered walkers, 120 people joined us.  It was awesome! Thank you, everyone, who attended!

This year, we raised $1,317.90 for the Endometriosis Foundation of America, totaling $7,065.44 raised since 2014.  A HUGE thank you to everyone who donated or purchased t-shirts!  We were able to once again surpass our fundraising goal!  And due to an incredible donation by my employers, we were able to hand out free Bloomin’ Uterus buttons to everyone!  I’m just flabbergasted!

This is my fourth year hosting our walk.  When I received my diagnosis, there was nothing in San Diego and I needed something.  Absolutely needed it.  Does that need ever diminish?  I must say: nope.  Being able to be around EndoSisters who understand, to be able to hug their friends and family and thank them for their support, and to watch other EndoSisters meet and interact: it’s awesome.  And it really drives home that the need to be around people who get it…around people who aren’t judgmental…is critical to our mental well-being.  Well, mine at least.  And we even met a few people along our route that had Endometriosis and will join us next year!

endosisters
All of us EndoSisters; photo courtesy of Timbrely Pearsley
support
And each of our friends & family who support us <3; photo courtesy of Timbrely Pearsley

I’m still floating on Cloud 9.

Prior to the walk, 34 EndoSisters completed a survey about their Endometriosis.  This sign was displayed at our check-in desk; a way of affirming that we truly aren’t alone in our fight.

Percentage Breakdown 24x36 copy

The little pie chart in the center is asking if surgery (whether it be excision, ablation, or hysterectomy) helped with their Endo symptoms and pain.  The responses were:

1 – It’s worse than before

1 – No Endo was removed during surgery

5 – Yes

10 – No

17 – It did for a while

And my favorite part?  We’ve all been told that Endometriosis developing on the spine is “incredibly rare”…yet three, yes THREE, of the 34 women who answered this survey have a confirmed diagnosis of Endometriosis on their spines.  Talk about embracing the fact that you aren’t alone!

You can see all of the photographs and video shared by our attendees here.

This year, seven of us delivered a speech together.  There’s video out there of the speech (filmed by the wonderful Alyssa Menard):

If you can’t hear passed our sniffles and snorts and giggles and airplanes flying overhead, our words are below.  I wanted to send a loving thank you to those brave women who volunteered to speak with me:

Lisa:  Thank you, everyone, for coming today. I cannot express enough how much it means to me…to each of us.  Can I have all of my EndoSisters join me over here? Many of us were not taken seriously when we would discuss our pain.  It may have been dismissed, we were called fakers or weak, or told that it was all in our heads. We’ve heard “Nothing is wrong” or “Pop an Advil”  or my personal favorite, “Periods aren’t that bad. Suck it up.” Words like this, treatment like this, is demeaning to an already crushed soul. I gave up.  I figured it was normal. And that I was weak, crazy, or just cursed.

Mirna:  Our pain has a name: Endometriosis.  We aren’t crazy, we aren’t weak, and we aren’t faking.  But even with a diagnosis, sometimes our pain still isn’t taken seriously and we are dismissed or judged by the medical community, employers, coworkers, friends, or even family.

Jessica:  We are here today to change that.  1 in 10 women suffer, but here we are walking side by side, a mighty force of Warriors.  Warriors with an ultimatum to Endo: we will overcome!! We will not be beat. And we are not alone.  We may have days where we are forced down, stuck in bed, or in agony as we go about our day…but we will rise again.  And we stand with the help of our Sisters, our family, and our friends.

Kelly:  Endo just doesn’t cause physical pain.  Sometimes we feel like an incomplete woman, robbed of so many dreams.  And some of us can be jealous of those who have children, don’t have to carry a small pharmacy around in their purse, or can live a fulfilling and active life.  But this community that we’ve built together personally helps me cope with the physical and mental downers. Someone, maybe even you, has been there to support me when I needed it.  And here we are today, lifting each other up. This is what we are all about. We are Sisters. We are family. When you go home, please don’t let this energy that you’re feeling die.

Gloria:  Friends and family, please listen when we tell you that we are hurting, or we can’t go do something because of a flare-up; don’t judge or criticize us or think we’re lying.  Continue to offer that compassion and support I know you all have within you.

Meghan:  And to my EndoSisters, stay strong, be there for one another, and don’t be afraid to self-advocate.  Push your physicians to do their research to better understand how best to handle our illness. And if you don’t agree with their opinions or tactics, find another doctor.  There are great ones out there.

Melinda:  One day there will be a better understanding of this illness; of this enemy we all fight together.  But until that day, let us hold our heads high and march on. I am grateful for each of you. We are grateful for you.  Thank you.

**

I am so excited and looking forward to next year.  If you’re interested in joining us for 2019, stay tuned!

And remember, we are all incredibly strong and powerful. And we can stand up to Endo…Together!

If you would like to read about our prior walks, here’s the information:  2017 Endo Walk at Shelter Island, 2016 Endo Walk at Lake Miramar, and 2015  Endo Walk at Lake Miramar.

28828538_10160130368455024_6969357097814032619_o
A SUPER EndoSister, Toni. Photo by Exxes Fritz Hauffen

Endo & Cannabis Products Workshop

Untitled-1 copy

Dr. Rosemarie Flores will be speaking with the gals of Bloomin’ Uterus on Sunday, December 3, 2017, about managing Endometriosis pain and symptoms with cannabis products.  Not only is Dr. Flores a chiropractor, but she is certified by the Medical Cannabis Institute.  She has been able to help many patients get off opiates, sleeping meds, and many other medicines.

Come join us!  Seating is limited, so please RSVP for yourself (and anyone you’re bringing) by emailing me at lisa@bloominuterus.com.

I know many of you have had questions about cannabis at some of our prior meetings, so now’s your chance to ask!  Can’t come?  Feel free to email Dr. Flores here with your questions.  She’ll do her best to respond.

Dr. Flores (aka “Dr. Rosebudz”) will be explaining the medicinal benefits of CBD  and other cannabinoid blends including THC and how it works in the body.  She will cover the difference between CBD only which comes from industrial Hemp and CBD that comes from a Cannabis plant.  And she will also be going over Dosing, which is very important since there is no set dosing for patients.

Cost Per Person: FREE (I will always strive for freebies for my EndoSisters!)

Date: Saturday, December 3, 2017

Time: The lecture will begin promptly at 12:45pm.  You may show up as early as 12:30 (but I may put you to work setting up tables and chairs).  It will be concluded by 1:45pm.

Location: Mission Valley Library (in their Community Room); 2123 Fenton Pkwy, San Diego, CA 92108

Again, please RSVP for yourself (and anyone you’re bringing) by emailing me at lisa@bloominuterus.com.

**A huge thank you to one of our local EndoSisters (you know who you are) for reaching out to Dr. Flores to present this workshop**

Share Your Story: Sarah

story

New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years.  Today, a year later, she shares her long and difficult Journey with us.

Sarah’s Journey:  I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.

It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16 hour class around it and teach it inside a week.

When I was a kid, I was the *fasted* kid in the fourth grade. I outran everyone regardless of their height, gender, or age in the fourth grade. And I worked on my grandparents’ farm in the summers. I lifted hay bales. I carried things bigger than me! I was strong. I was fast. And then my body started changing. My weight shifted. My period started.

When I was 15 the pain of it became unbearable, I thought at the time. It lasted 8 days and it was heavy for most of them. I would throw up or pass out sometimes because of my period. I was anemic. I came home from school frequently because of my period. My mother was irritated and didn’t think it was real. And don’t get upset with my mother!

It turns out she had Endo, too. She didn’t get diagnosed until she was in her 50s. So, it’s no wonder she looked at my suffering and thought it was normal–it’s what she was told about her own suffering. And she’d never heard of Endometriosis.

Something else that happened when I was 15 was that I managed to subluxate some of my ribs and score a compression fracture in one of my thoracic vertebrae. The simple action of getting dressed for school is what made this happen.  So, in addition to period pain, there was constant pain in my upper back–constant and chronic as in every single day, every single minute, there was pain. The doctor my mother took me to accused me of trying to get out of gym class and didn’t even order an X-ray. I found out about the bone damage 9 years later when I was getting X-rayed for something else.

This set the stage for doctors not believing me about any of the pain I was in.

It also kept me exercising no matter how bad the pain got because I was told that exercising would make my “imaginary” pain better. I took myself to a gynecologist because that was my only option. Thanks, Planned Parenthood, for being a thing. They didn’t diagnose endo. To be fair, no one diagnosed it or considered it for another 23 years anyway. So, I still only have love for them. At least they listened.

I first learned about Endometriosis from a high school friend who had been diagnosed. Her suffering was worse than mine, so I never considered that I could have it. I assumed I was being given accurate information and that my pain tolerance must just be low. I kept my head down, took ibuprofen everyday for my back and more for my period, and kept on not getting any better. I took ibuprofen every day for about a decade. I took lots of ibuprofen. Every day. It didn’t stop the pain but made it manageable, tolerable.

I also started taking birth control pills at some point. Some brands helped with my period pain, some made it worse. All of them had side effects that kept me switching or stopping altogether. Benefit to detriment ratios became nearly daily contemplations. At some point, I decided The Pill wasn’t worth it. Pain was a better option.

I’m pretty sure that decision came after I ended up in a neck brace/soft cervical collar from a little traffic accident followed by carrying something bigger than me incorrectly. I couldn’t get my doctor to believe how much pain I was in then, either. So, I took so many ibuprofen than I pooped blood for a few days. When I told my doctor that, she finally sent me for physical therapy, an MRI, and to a neurologist. Needless to say, that was the end of my love affair with ibuprofen. I can take other NSAIDs, but, even now, over a decade later, ibuprofen creates horrible abdominal pain and blood where there shouldn’t be any.

So what about those cramps? Aspirin was my first solution. It thinned out the clots, so that was a relief. It didn’t do nearly as much for the pain. I got really good at controlled breathing and pretending. And I had to pretend. About this time, I had to change jobs due to carpal tunnel and thoracic outlet syndrome. I couldn’t do my lame desk job. I couldn’t paint. I even had trouble cooking for myself. (I will be forever grateful to the Mexican restaurant down the street from me at the time and their mostly-healthy, affordable tacos.)

I started teaching. The classes were intermittent and the pay was good, which allowed me time to recover in between teaching stints. I didn’t always manage to schedule classes around my period, but I tried. Working from bed on the worst days is a luxury most of us don’t have. It’s a luxury I sometimes had. Eventually, my arms and hands improved so I could re-learn all my painting skills, but my period never got better. It was always something I dreaded. And still, no gynecologist gave the pain a second thought. Eventually, I stopped talking about it. I pretended.

Just like I pretended in front of my students. Most days I was behind a computer screen. Some days I was also behind them. So I could keep my voice level–or even happy–while I hunched over, massaged, turned green. And in a decade of teaching, very few students noticed enough to say anything or react. Every now and then someone would mention something about my voice not matching or seeming like I was acting. It’s true. I was acting. I was pretending to be okay. And once, a male student turned around to look at me while I talked…. He did the whole Warner Bros. cartoon shock face reaction and turned back around again. I kept on talking, joking, whatever. Even though my back hurt, my arms and shoulders hurt, my period was Hell on Earth, it was all fine as long as I could still go dancing and still go walking.

My health sometimes kept me away from dancing for months or more at a time, but I always got back to it. I performed a little, even. I spun fire. I belly danced. I even got to perform on the main stage at Rakkasah a couple times. It was a luscious and frivolous hobby, and it got me out of bed. Over and over again, dancing was the reason I got out of bed, left the house. There might be weeks at a time that I didn’t teach–that I didn’t *have* to leave the house. Dancing got me out. Going for walks got me out. And then I fell down hiking. With 3.5 miles to go and the sun waning, I messed up my left leg. No one believed how bad that was either. So I did the best I could. I limped for a couple years. No biggie. I went for shorter and shorter walks. I still danced as best I could. Then I twisted my sacrum. Finally, by lying about what happened, I convinced a doctor to get me into physical therapy. I limped less.

And my period ever so subtly kept getting worse. I had these horrible things called Essure coils put into my fallopian tubes as a form of permanent birth control. I’d given up on The Pill and the risk of pregnancy wasn’t something I wanted to continue facing. Sex became an experiment in torture after that. Any deep thrust was like a knife inside my gut. And my period, yup, kept getting worse. And slowly, I started to bleed in between periods a bit and have discolored discharge.

In November of 2015, I had a period every week. It wasn’t constant blood, just one massive clot every Wednesday. Seriously. Every. Wednesday. So I made an appointment with a doctor to talk about that and an increase in my lower back pain and the leg pain that just wouldn’t go away and about blah blah blah medical history. She was not amused. She was not terribly helpful. She also didn’t really believe me about the pain–except for my period/pelvic pain. She referred me to a specific gynecologist, for an intra-vaginal ultrasound, and for physical therapy. I don’t know if the physical therapy, the ultrasound, or just my body continuing to fall apart was the cause, but inside a few weeks I was barely able to walk at all.

I went back to the doctor–with husband insisting on coming along (yay!)–after literally falling down on the ground because my legs gave out. It wasn’t the first time this had happened, but it was the most shocking and the most painful. My left leg, in particular, felt like there were large hunks of twisted metal in it when I walked mixed in with the feeling of cleavers. The twisted metal and cleaver pains were new. An MRI, some x-rays, and a physiatrist appointment later, I was getting epidural cortisol injections to my spine. They helped a little. The physiatrist said that the amount of pain I was in didn’t make sense based on the testing. Then he added something wonderful. He said, “There must be something else going on.”

When I finally got in to see the gynecology specialist, I had yet another intra-vaginal ultrasound. This one with saline because she thought I had uterine polyps. She was right. That experience was so painful I could barely stand afterward, let alone walk. I was scheduled for a hysteroscopic polypectomy. That also helped with a little of the pain. Again, I was told there must be something else.

After those two procedures, chiropractic and physical therapy visits were more useful. I could get from the bed to the bathroom with out resting. I could eventually walk from my car to my appointments without gritting my teeth or taking breaks. The blood in between my periods was gone, but my period pain was no better. It was still getting worse, and the rate of my cute little decline had increased as my physical activity had decreased.

In May, we moved to San Diego. In July 2016, I wept, yelled, and pleaded my way into laparoscopic surgery to remove the Essure coils (and my fallopian tubes because that’s how that’s done) and to look for Endometriosis. I was in so much pain–back breaking, mind numbing, fully crippling, life-hating pain–during my periods that I went in asking for a hysterectomy. She talked me down. During surgery, she found extensive Endometriosis. For whatever reason, whether it was all that exercise I used to do, my low-estrogen diet due to Hashimoto’s Disease, or just pain luck, I had very little scar tissue and no adhesions. She deemed it Stage 1 Endometriosis. When the pathology report came back, it verified Endometriosis, said that my removed fallopian tubes showed not only a bunch of endometriosis, but also evidence of a previous burst. It didn’t specify if that was from an Essure coil puncturing a tube or from something else.

23 years after first seeking help, I got it. My uterus prolapsed mild-moderately after surgery. Lupron wreaked havoc on my body after surgery. But, I’m figuring out how to walk again. It’s arduous. It’s frustrating. It’s painful. It’s also working–slowly. This is part of what was so hard about today.

All those little mentions of non-Endo pain mostly have to do with another health condition called Ehlers-Danlos Syndrome. It’s a collagen disorder. People with Ehlers-Danlos are extra flexible and are prone to dislocations, subluxations, sprains, and the like. It also takes us longer to heal. And there’s a higher rate of Endometriosis among Ehlers-Danlos sufferers than among the general population.

And I’ll type this again for my own stubborn benefit: It takes me longer to heal. I am no longer fast. I am no longer physically strong. I have trouble lifting a gallon of juice, let along a hay bale.

And not only did I finish dead last today, I couldn’t even speed up for the photo at the end. I just couldn’t. It wasn’t physically possible for me to go faster. I was already hiding a limp and pretending to not be nauseous. Lisa said not to worry about it, to keep going at whatever pace I could manage (thank you for that). But I do worry about it.

I used to keep myself going because even if everything hurt, I could still walk. As long as I could walk, I would be okay. And I know it’s been less than a year since surgery. I know that I’m still clearing hurdles, even if they are only 3 inches tall.

I also know, as of today, that I have to find new ways to define myself. Because the effort to get well is more important than my notions of who I am.

I am no longer fast. I am no longer strong. These are things I need to accept because, in hindsight, holding on to those two identifiers so desperately probably did me more harm than good in my past recovery endeavors. Pushing myself to get to a goal is not something I can do anymore. The risk of long term harm is too real.

The difference between being able to physically get myself out of bed or not is as small as turning incorrectly or walking too fast. I have to be okay with just finishing. I have to be okay with not finishing. Because I have to be okay.

*

I want to send a special Thank You out to Sarah for being brave enough to share her personal story, struggle, and small victories with us today.  You are a beautiful, brave, and strong woman.  You’ve been an incredible support and inspiration, a driving force with our little circle.  And I adore you for it.  Your brutal honesty with yourself, and our readers, has brought me to tears today.  Continue to embrace who you are.  ❤

 

download

And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Recap: Endo Workshop in San Diego

img_6409tn2

Well, it came and it went!  February 23, 2017, was the day that Dr. Mara Killen of San Diego Womens Health and I presented an Endometriosis workshop at the San Diego Marine Corps Recruit Depot for their Exceptional Family Member Program.  (You may remember that Dr. Killen presented on PCOS back in December.)

Our presentation and Q&A session lasted roughly two hours and Dr. Killen gave an excellent talk about Endometriosis, the theories of causation, symptoms, medical treatment options, etc.  I covered the alternative options such as diet, lifestyle change, Eastern medicine, mental health, and physical therapy.  The gals (and one husband) who showed up came with some incredible questions!

I cannot thank the EFMP and its staffmembers enough for granting us such an incredible opportunity to reach out to our community.  And, Dr. Killen, thank you for taking time away from your busy schedule and personal life to offer such valuable information.  I will be forever grateful.

Our 2017 Walk & FREE Bracelets!

bracelet

Well, our walk is 58 days away from today and we’re nearly at capacity! We have 98 registered walkers (as of this very moment) – and we are only allowed 100!  The San Diego Port Authority permit and our event insurance has maxed us out at 100 participants.

I cannot wait to walk with you!  Anyway…FREE STUFF!

Once you arrive at the Island, find our little shade structure and check-in, you’ll be able to earn your free Endometriosis Awareness Bracelet.  There will be a small sign with instructions, a box, some pens, and a bunch of freebie bracelets (one per person, please).

untitled-1-copy

 

Put your thinkin’ caps on!  Or be prepared to meet new people and ask them what they know about Endo!

Not going to our Walk, but still want our bracelet?  Submit an entry to our Coloring Contest (going on from now until April 1, 2017)…and see if you win!

 

Recap: PCOS Workshop

pcos-pic

On December 8, 2016, we had the opportunity to reach out to our local Marine Corps community and teach a workshop about Polycystic Ovary Syndrome, or PCOS.

Background

A few months ago, I received an email from the Marine Corps Community Services Exceptional Family Member Program for the Marine Corps Recruitment Depot/Western Recruiting Region here in San Diego, California.  They wanted to know if Bloomin’ Uterus could coordinate a PCOS Workshop for their interested enrolled members, which included staff, service members, and/or family of service members.  Of course, I jumped at the chance!

I reached out to Dr. Mara Killen, a nurse practitioner at San Diego Women’s Health, my doctor’s office.  The staff at San Diego Women’s Health have been so incredibly helpful in my Endometriosis diagnosis, treatment, and journey and I’m so grateful that Dr. Killen agreed to speak at the PCOS presentation.

The Big Night

I arrived on site a few minutes early and caught a beautiful San Diego sunset from the parking lot – a perfect way to end my workday and begin the evening.  There were about 11 women in attendance, each of them either suffering from PCOS or knowing someone who does.  Dr. Killen’s presentation ran about 30 minutes and the remaining hour was an open-forum Q&A session.

A quick overview of what I learned last night:

What is PCOS

PCOS is an endocrine disorder and not much is known about it.  Like Endometriosis, the exact cause is unknown.  It effects 5-10% of women who are in the childbearing-age range, and as much as 50% of women with PCOS are undiagnosed.  And if you have PCOS, there could be a 50% chance of your daughter developing PCOS…Many women with PCOS also suffer from other conditions, such as Endometriosis or fibroids.

PCOS can drastically effect fertility, because it can cause very irregular periods.  Some women with PCOS only have their periods once every 2-3 months.  And, unfortunately, there is a higher risk of miscarriage and other pregnancy complications…

Women with PCOS may have a higher risk of developing other conditions in the long-run:  endometrial cancer, Diabetes, impaired glucose tolerance, hypertension, cardiovascular disease, ovarian cancer, depression, anxiety, and sleep apnea.  This isn’t a dooming realization – but if you do have PCOS, please talk to you doctor about steps you can take to strengthen your chances of not developing these conditions in the future.

Symptoms

Symptoms can include – and are very different for each sufferer – :

  • Irregular periods (long, heavy, absent, spaced out too far)
  • Fertility issues
  • Insulin resistance (which may lead to Diabetes)
  • Pain
  • Acne/skin issues
  • Increased hair growth
  • Weight gain
  • Fluid retention
  • Darkening of the skin
  • Moodiness

Diagnosis

If you think you may have PCOS, begin having conversations with your doctor.  It’s best if you have a running log of your periods ( symptoms, flow, start & end dates) to bring to your doctor to help move the diagnosis process along.

Unfortunately, there’s no single test to diagnose PCOS.  And various health organizations agree and disagree on the criteria to reach a PCOS diagnosis.  It’s not simply black and white…

A healthcare provider would likely begin with a detailed medical history (including any/all symptoms), followed by a physical examination, blood work, and a pelvic ultrasound.  The ultrasound may show an ovary looking a little bit like swiss cheese, or perhaps like it’s wearing a strand of pearls – these are follicles going craaazy.  Then again…the ultrasound may appear completely normal.  These listed procedures may rule out other conditions, ultimately leading to a potential PCOS diagnosis.

Treatment

Like Endometriosis, there is no cure.  Treatment depends on your health goals and where you ultimately want to be in your life. One way to express it: do you want kids?  Or you never want kids?  Either way, since there is no cure, treatment is about symptom suppression and making your life easier and healthier while you endure an incurable condition.

If you want children, you may be asked to make some lifestyle changes (diet and exercise), you may go on some medications to help improve fertility, and IVF/IUI is an option.

If you don’t want kids now, your doctor may still advise lifestyle changes (diet aaaand exercise), you may be prescribed birth control pills or some other form of hormonal contraception, or you may be prescribed Metformin.  These options act as symptom suppression, and the hopes to regulate your body’s imbalance/disruption.

Alternative therapies that may help reduce symptoms of PCOS include saw palmetto, chasteberry, and acupuncture.  One of the gals last night expressed some improvement while trying evening primrose.  As always, though, plleeeeaaaassssseee consult with your healthcare provider before beginning any alternative therapy.  Herbal supplements may have interactions with medications or even worsen symptoms.

Community

Thursday night really drove home, once again, the need for community support – having a place to voice your concerns, issues, and experiences with women who know precisely what you’re going through – IT IS SO HELPFUL!

Although I have been unable to locate an in-person support group for PCOS sufferers in San Diego, I found Soul Cysters – an online community of PCOS sufferers which includes a blog, shared stories, an online forum, suggestions for books, etc.  Hoping it may be useful to some PCOS gals.

 

Other Useful Links

American Society for Reproductive Medicine

American Congress of Obstetricians and Gynecologists

American Association of Clinical Endocrinologists

Womenshealth.gov

Clinicaltrials.gov

PCOS Awareness Association

What’s Next

We’ll be hosting an Endometriosis workshop for the Exceptional Family Member Program in February.  If you’re an active service member, or know someone who is, and are interested in attending, please reach out to us.  We’ll put you in touch with the organization.

If you are an active Marine, or the family member of one, and would like more information on the Exceptional Family Member Program or it’s upcoming events, please contact Christy Howland at christy.howland@usmc-mccs.org.

Thank you, Christy, Natalie, Elizabeth, and anyone else at the EFMP who played a role in last night’s event, and for creating this opportunity for women to come together over a shared illness.  And Dr. Killen: I am so grateful!  Thank you for sharing your knowledge with us last night, and bringing PCOS sufferers together.

And to all those who serve our country, thank you -from the bottom of my heart.

Ooh Rah!

Resources:

Dr. Mara Killen’s 12/8/16 PCOS Powerpoint presentation (please let me know if you’d like a copy)

Marine Corps Exceptional Family Member Program

~ 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