Share Your Story : Charlie

woman with curly brown hair wearing a sweater and beanie

Charlie lives in the UK, and was diagnosed with Endometriosis when she was 16.  Now 19, and two surgeries later, her pain is already returning.  This is her story.

Charlie’s Journey: 

So, I guess we should start at the beginning.

This post will feature words that usually have a stigma behind them or make some people feel uncomfortable such as ‘periods’ so look out.

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Feel Good Friday!

blue butterfly

Today’s quote is an anonymous one, which was shared with me yesterday by Sister Develyn Angels…and I loved it.

“Butterflies are nature’s tragic heroes. They live most of their lives being completely ordinary. And then, one day, the unexpected happens. They burst from their cocoons in a blaze of colors and become utterly extraordinary. It is the shortest phase of their lives, but it holds the greatest importance. It shows us how empowering change can be.” ~ Anonymous

Afraid of change?  Suddenly struck by it? Remember this quote…and fly!

Happy Friday!  And have a great weekend.

Yours, Lisa

T-shirt sales were a success!

Two women wearing Bloomin' Uterus t-shirts

Thanks to everyone who purchased a Bloomin’ Uterus t-shirt!  As you know, all profits were donated to The Endometriosis Foundation of America.  This year’s t-shirt campaign raised $43.35 for the EFA.  Wear your shirts with pride!

It doesn’t sound like a lot of money, I know, but every little bit helps this great organization.

I don’t know who purchased a shirt (Teespring doesn’t tell me), but I want to thank each and every one of you.  Missed your opportunity to get a shirt?  They’ll go back on sale in February 2017…or if there’s enough outcry, we can open up another campaign (but we must sell a minimum of 5 shirts to print).

Thanks, guys!  This is incredible.

Yours,

Lisa

Peggy, Roy, & The Endo Inn

Husband and wife cutting a cake together
Peggy & Roy cutting their birthday cake –  July 2015

You may have heard about Peggy Santa Maria on CBS-TV, LA or read about her in the Contra Costa Times or various online blogs.  I bumped into the CBS-TV LA link, which was aired on their 5pm news on December 25, 2015, and just had to know more about her.  The e-mail address on their site didn’t work, so I reached out to my friend, Margaret, at The Vital Health Institute, who got us in touch.

If you don’t know about Peggy and her husband Roy, they host The Endo Inn.  The what?  As Roy says, “Stay at the Endo Inn while you have your Endo taken out.”  They have converted their guest bedroom into The Endo Inn, a room where a woman and her guest can stay while she recovers from surgery for her Endometriosis, free of charge and for several weeks, if needed.  This includes access to all of the house for cooking, doing laundry, entailing everything that covers “living,” and The Endo Inn becomes “their home.”  Roy and Peggy have been doing this since January 18, 2000.

More about The Endo Inn shortly…but right now I want to focus on the beautiful people behind it:  Peggy and Roy.  I had the pleasure of speaking with Peggy several days ago, spending over an hour on the phone with this purely delightful woman.

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Meet Dr. Sonia Rebeles

Dr. Sonia Rebeles

I’ve recently learned of an Endometriosis workshop taking place next Wednesday, February 24, 2016, in Beverly Hills.  I reached out to Dr. Sonia Rebeles, who will be conducting the workshop and she graciously agreed to answer some of our questions.

If you’re in the Beverly Hills area and available that evening to attend, I highly suggest you sit in.  For more information on that upcoming workshop. And, if you’re like me and can’t attend, Dr. Rebeles may be able to upload a Youtube video afterward.

**

Please begin by telling myself and the readers a little bit about yourself.  

I’m 39 years old, originally from El Paso, Texas.  Professionally speaking, I recently relocated to Los Angeles to start a new private practice in Beverly Hills. I did my undergraduate training at Stanford University and fell in love with California.  Along multiple points throughout my career I’ve tried to venture back to the sunny state, but the timing was always off.  Finally, early last year when I was contemplating a career move and revisiting my career goals, I was recruited by and offered a truly once in a lifetime opportunity to showcase my talent by the phenomenal people at K and B Surgical Center in Beverly Hills.  I couldn’t pass up the opportunity to work alongside such a respectable group of physicians in such a prestigious region of the country.

Personally speaking, I love staying physically active and fit.  I am a Crossfit fiend, but I also enjoy cycling (road and mountain) and running on occasion, especially with my dog Bella.  My passion for photography is almost as great as my love of surgery and healing patients.  In both realms, I feel completely in my element.

Let’s see, what else…my birthday is April 1st.  No joke. 🙂

Do you have Endometriosis? 

Not as far as I know.  I suffer from the usual common female maladies like annoying periods and menstrual cramps and bloating, but I think that’s more PMS-related. I’m lucky that my symptoms have never been severe and on the rare occasion that they are, a couple of Advil do the trick.

What got you interested in treating Endometriosis?

In all honesty, I didn’t enjoy treating patients with endometriosis when I went through my residency training.  Most of my senior attendings and colleagues taught me to treat endometriosis medically first and rule out all the other types of pathology that could cause pelvic pain, like irritable bowel syndrome or pelvic inflammatory disease, or bladder infections, etc., all of which tend to be more rare entities as a cause of pelvic pain than endometriosis itself!  Surgery was always considered as a last resort, and it was always met with a sense of dread by physicians not comfortable dealing with it surgically.

When I went through my minimally invasive gynecologic surgical fellowship in 2008-2009, my mentors were master surgeons in laparoscopy and robotics who taught me the satisfaction gained with a challenging case or in surgically tackling the difficult endometriosis case, which was typically a patient who had been sent from doctor to doctor without relief either because surgery was avoided or inadequately performed initially.  For the first time in my career, I saw patients actually get better because they were treated with surgery correctly.

I know that there are several surgical techniques to excise Endometriosis, and it appears you specialize in robotic surgery (yay!).  Which method of excision do you prefer (fully removing the lesion and some healthy tissue around it; ablation; cauterization)?

For me, I prefer excision, fully removing the lesion with either sharp dissection (small scissors used with the assistance of the robot), or electrocautery.  Very rarely I will ablate lesions if they are in a particularly challenging area where dissection might incur damage to adjacent tissues.  If I suspect involvement of bowel or bladder or other non-gynecologic organ, I will solicit the help of that particular surgeon.

I prefer the robotic approach because of the enhanced visualization, 3-dimensional view and magnified vision.  Identifying the many appearances of endometriosis is essential.

Recovering from surgery can be a painful and scary experience.  Do you offer and tips or tricks to your patients for their recovery?  Not case-specific, but as a general rule of thumb?

In general, patients should take about 1-2 weeks away from their usual activity and refrain from strenuous lifting or driving while taking pain medications.  A general rule of thumb is if it still hurts, scale back.  The challenge with endometriosis patients is that more times than not, the post-surgical pain is more bearable than their endometriosis-related pain, so much so that they feel amazing even immediately postoperatively.  So, the tendency is for these patients to want to do more rather than allow their bodies to heal.

There are so many theories regarding the cause of Endometriosis.  Which theory(ies) do you believe may be the cause, if any? 

There are at least four predominant theories and evidence to support each.  I believe it can be multifactorial.  I’ll get into more detail on this during my seminar if this is of interest.

Do you feel that Endometriosis symptoms can be controlled by diet and supplements? 

 Sure.  In my opinion, the adoption of healthy living and eating habits will enhance overall wellness and promote healing, no matter the illness.

How do you feel about hysterectomies as a cure for Endometriosis? 

Removal of endometriosis is the treatment for endometriosis.  Hysterectomy (removal of the uterus) does not cure endometriosis. It may result in less pain when painful periods are the main symptom, but it does not cure endometriosis.

Where do you see medical care and treatment headed for Endometriosis over the next 10-20 years? 

Hopefully treatment will head towards more aggressive surgical management as a first step, preferably by highly skilled surgeons with expertise in minimally invasive approaches to treatment.  Promoting awareness of the utility of surgical management amongst fellow physicians will hopefully minimize or eliminate the circuitous path too many patients with endometriosis are sent on.

Any words of advice for Endometriosis sufferers who may be reading this? 

Your symptoms are real, your pain is real.  You deserve to be heard and most importantly to feel better, so, do your research. If you have pain that you no longer want to live with physically or mentally, or pain that is disrupting your quality of life and your doctor hasn’t at least considered endometriosis or hasn’t referred you to a surgeon who treats it, then find another doctor. Also, find a highly skilled, board certified surgeon when you are ready to go the surgical route.

What can we do to help you and the medical community?

Exactly what you are already doing – spread awareness.  Follow and promote members of the medical community who give good, quality, evidence-based information and have the training and expertise to deal with complex issues like these.

**

If you would like to contact Dr. Rebeles for a consultation or to ask your own questions about her experience treating Endometriosis, please feel free to do so:

Sonia Rebeles, MD
Minimally Invasive Women’s Surgery
9033 Wilshire Blvd. Suite 200, Beverly Hills, CA 90211
www.SoniaRebelesMD.com
Phone: (424) 285-8535
Fax: (424) 285-8534
Email: drrebeles@soniarebelesmd.com

Dr. Rebeles currently accepts all PPO insurances, cash pay.  (She is in the process of becoming an in-network provider with some PPOs and eventually Medicare, but this takes time).

I would like to extend a personal thank you to Dr. Rebeles, not only for taking the time to respond to these questions, but for doing so with such fervor!  It’s refreshing to find physicians and surgeons who understand so much about Endometriosis, and how best to treat it.

And, as always, together we can do great things!

Yours,

Lisa

Keeping a Healthy Pooper to Help my Endo

Diagram of human bowels

This is an old blog post (2016) and I have since had two bowel resections (2018 and 2020). I’ve also learned alllllll about Endometriosis on the bowels.

Here we go again!  Discussing taboo topics that nobody ever really wants to talk about.

You may remember a few months ago I met with a gastroenterologist to discuss my complaints of pain before, during, and after bowel movements. Anyway, he referred me to a colorectal surgeon here in San Diego for some further testing.  A few months later and my insurance finally approved the appointment!  And *poof* my very first visit to a colorectal surgeon took place last week (nearly five months after my initial visit with my PCP to discuss these complaints)…

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Feel Good Fridays

So, I’m reading Endometrioisis A Comprehensive Update, which was published late last year by Springer.  There’s a wonderful little quote that I just have to share.  The authors say a Scottish physician in 1774 described the symptoms of Endometriosis:

“In its worst stages, this disease affects the well-being of the female patient totally and adversely, her whole spirit is broken, and yet she lives in fear of still more symptoms such as further pain, the loss of consciousness and convulsions.”

I don’t know the physician’s name, or if it was, indeed, Endometriosis he was describing, but this quote really hit home.  I don’t know about you, EndoWarriors, but I do fear it returning…

On that note : HAPPY FRIDAY!

PUSHUPM.O.B.B 4 Endometriosis : a great way to raise awareness of Endometriosis

A flyer do do more pushups

I’ve had the pleasure of following the efforts of one man for the past year and a half to raise awareness of Endometriosis. He’s a dedicated husband to a woman who suffers from Endometriosis, and he’s a great motivator, and someone I’m honored to call my friend.  I’d like you to meet Jason Lawson.  He agreed to answer a few questions that we could share with you today!  Curious what he’s doing?  Flex your muscles and read on…

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Endometriosis Fundraiser : San Diego!

event flyer

On Saturday, February 27, 2016, from 1pm – 6pm, The San Diego Sisters of Perpetual Indulgence will be hosting a fundraiser at Shooters Cocktails in Spring Valley!  Tanya Linda will be preparing special Endometriosis-themed cocktails for sale.  All profits will be donated to our Walk’s fundraiser, which are then given to the Endometriosis Foundation of America! And…admission is free! No cover charge!!!  

It’s a fantastic testament to a community coming together over our cause.  Several Sisters either have Endometriosis, or know of someone who does, and are willing to put this event together for us!

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