Free Endo Webinar: Dr. Leslie Wakefield

Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Are you available to attend a webinar on Thursday, June 27, 2019, at 1:00pm (Pacific Standard Time). Join them for the free online webinar featuring Dr. Leslie Wakefield. Dr. Wakefield will be discussing how how physical therapy can treat Endometriosis symptoms.

Registration is free, but is required. So sign up today!

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

An Evening with Dr. Kurtulus

Flyer for Living with Endometriosis presentation.

On June 5, 2019, the Marine Corps Community Exceptional Family Member’s Program hosted Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) and I for a discussion about Endometriosis. I am so grateful to Dr. Kurtulus for setting aside time from his busy schedule, sharing his personal time with us, and to the members and crew of the Exceptional Family Member’s Program for allowing he and I this opportunity.

There were about a dozen folks who attended the nearly two-hour meeting at the Marine Corps Recruit Depot in San Diego. We all sat near one another, including Dr. Kurtulus, in a very casual and intimate learning experience.

Dr. Kurtulus began with an explanation about what is known about Endometriosis, covered a few theories of the illness, the various stages of the disease, and how it affects each woman differently.

A physician’s suspicion of Endometriosis may be raised by a complete medical and symptom history. A physical examination may take place, in which the doctor may feel scar tissue, abnormalities, or even nodules. An ultrasound may also be ordered, which could show the presence of cysts, Endometriomas, and misplaced ovaries (or other organs). These may further bolster a clinical diagnosis of Endometriosis. Some physicians may follow-up the ultrasound with an MRI, which may (or may not) further strengthen such suspicions. Those results, however, may be skewed because of the skill level of the radiologist; if they don’t know what they’re looking for Endometriosis-wise, the scans may appear normal. And…imaging studies don’t always indicate the presence of Endometriosis.

If a clinical diagnosis of Endometriosis is even remotely suspected by a physician, an exploratory laparoscopy should be conducted. It’s the ONLY way to receive a diagnosis.

But, as you very well may know, not all doctors are equally skilled. It is SO VERY IMPORTANT that we, as patients, do our research, due diligence, and everything we can to ensure we receive the BEST medical care we can. Unfortunately, we have to be our own advocates.

Although laparoscopy surgeries are considered far easier to recover from, a lot of surgeons around still do the ol’ laparotomy method. Tiny incisions versus a big ol’ incision? Think of the healing process and risk of infection differences. I know that, in some cases, a laparotomy may be medically required in extreme cases, but unless you’re one of those extreme cases: JUST SAY NO TO LAPAROTOMY. Why?

I took a little visit to the Wikipedia Time Machine this morning:

  • 1809: the first successful laparotomy was performed without anesthesia;
  • 1910: laparoscopy was first used on human subjects (on dogs in 1901);
  • 2000: the DaVinci robotic-assisted laparoscopy was approved by the FDA.

With the advancement of medicine and technology during the 210 years since the laparotomy was invented, why in the world would you choose a physician who ignored the laparoscopic or robotic-assisted laparoscopic methods? (Again, unless you specifically had an extreme medical case that required a laparotomy.) I’m forever going to imagine surgeons who elect to do laparotomy over the more modern surgeries available as wearing chaps and a cowboy hat.

And if you can, the benefits of a robotic-assisted laparoscopy may be what you seek: surgical tools with 360-degree articulation, the use of Firefly® Fluorescence Imaging, and the added bonus of insane magnification of the visual field. There are also exciting prospects on the horizon of using AR (augmented reality) and dyes during robotic-assisted surgeries to help surgeons visualize hard-to-spot areas of the body. Ask your doctors all the questions. Find one that does the method you prefer. I’ve only had robotic-assisted laparoscopies…so I cannot compare results. But I’ve been told by many people that my recoveries were faster and scars were much smaller.

Some surgeons only do ablation. Some do ablation and excision. Some only excise the lesions. Some say they excise when they, in fact, truly ablate. Excision surgery is considered the gold standard for treating the disease. Dr. Kurtulus drew some great visual aids for us, demonstrating the iceberg effect some Endometriosis lesions may present. He also shared video footage of a recent surgery where he excised both surface Endo and deep infiltrating Endo using the robotic-assisted DaVinci method. Again, ask your doctor questions. What techniques do they use and why?

Also, it’s important that you seek copies of your operation report AND pathology report. IF there is NO pathology report, question why! Does that mean they simply burned away the lesions and there was no physical lesion to send in to biopsy? Last night we learned that not all lesions ARE Endometriosis, and it’s important to know the results of the surgical pathology.

Surgery may not be an option you wish to pursue. Or it may not be something your body can handle. Now what? What other options are available to you? Well, your physician may try out various painkillers to see which may help you. Ibuprofen, Midol, Tylenol, Naproxen Sodium? Those don’t work? Your doctor may move up to others such as Vicodin, Percocet, Tramadol, etc. But with the opioid crisis…they may not. The pain pills may help…or may not.

They may have you try birth control pills, an IUD, implant, or depo provera. Stopping, or controlling, your periods may help with your symptoms. Then again, it may not. And there’s a likelihood of side effects.

Other pharmaceutical options may include Lupron Depot, Orilissa, Letrozole, Danazol, etc. GnRH agonists, GnRH antagonists, or other drugs that affect the body’s production of chemicals, or how they respond to estrogen, etc. – many of these have side effects that might be unbearable to some – and many may only be taken for a limited amount of time. And these medications may, or may not, help with your Endometriosis symptoms.

Many of us EndoSisters refer to medications as band-aid fixes. They mask symptoms. But sometimes ANY relief from your pain and symptoms is good relief. Every person is different; the choice is yours. Don’t be bullied into a decision by your doctor.

We also briefly discussed lifestyle changes and alternative medicine: an anti-inflammatory diet, acupuncture, pelvic floor therapy, meditation, pain management, CBD oils, etc. Find what works best for you. And the need for finding support, with any illness, was highly recommended.

The evening was brought to a close with the sound of Taps playing in the distance somewhere on the military base. Contact info was exchanged, as were hugs. And the promise to do this again sometime was made.

Here are some key points I took out of last night’s event:

  • Never be afraid to ask your physician/OBGYN/surgeon questions about their practice, techniques, and beliefs. 
  • If the surgeon only does laparotomy surgery (and you are not an extreme case that requires it), find another doctor. Find one who dose either laparoscopy or robotic-assisted laparoscopy. Without the extreme medical need, there is no reason to undergo the laparotomy procedure of literally the early-1800s…
  • If the surgeon only does ablation/cauterization/burn away the lesions: find another doctor.
  • If the surgeon usually only does ablation/cauterization/burn away the lesions, but will excise “for your case,”: find another doctor. They’re likely not skilled enough to properly and thoroughly remove all of your endo.
  • If your doctor insists you use drugs before they’ll even consider surgery (i.e, Lupron Depot, Orilissa, Letrozole, etc.), find a different doctor.
  • If your INSURANCE insists you use drugs before they’ll approve surgery (i.e, Lupron Depot, Orilissa, Letrozole, etc.), BUT your doctor wants to do surgery; ask your physician to push for a peer-to-peer review with the insurance company. Your doctor will have to justify why your surgery is medically necessary as opposed to treating with the medications. There may be a fight ahead.
  • Seek alternative treatments such as acupuncture, nutritionist consults, pelvic floor therapy, meditation, etc. Every little change we can do may affect our well-being.
  • It will be nearly impossible for the great surgeons to affect the medical community around them. Doctors are set in their ways; may lack the time to go to proper training; and may pursue more cost-effective/timely methods (ablation vs excision, etc). It is up to us, the patients, to research our physicians, find ones that are well-suited to our needs, and pursue our own proper care.
  • Track your pain and symptoms, and discuss those findings with your doctor. Bring a copy for them to review and keep; and a copy for yourself to review with them. Thoroughly cover all areas of concern.
  • Find support. Lean on one another. Ask questions. Share experiences. Know you’re not alone.

And most importantly? Each and every one of us has the power to influence those around us. Spread awareness. Share stories. Speak up about your illness. Fight for better care. Teach your doctors…some WILL learn. And learn from your doctors.

Cause ripples.

Again, I am so very, very, very grateful for an incredibly informative and uplifting evening.

Endometriosis Workshop in San Diego

Living with Endometriosis flyer for June 5, 2019 workshop in San Diego

Do you live in the San Diego area?  Are you active or retired military or a dependent of someone who is? And do you want to learn about Endometriosis, treatment options, and how to cope with the disease? 

Join us for an evening with Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) as he speaks about Endometriosis to the Marine Corps Community Exceptional Family Member’s Program on Wednesday, June 5th at 6:00pm at the Marine Corps Recruitment Depot in San Diego, CA.  I’ll also be talking for a few minutes about our support group, our events, the family we’ve created, and how you can join us.

All military and their families are invited.  Due to the location of this event, it is restricted to active/retired military and their families only. 

Call 619-524-0916 or email ombfamilycaresd@usmc-mccs.org to RSVP.

Date: Wednesday, June 5, 2019
Time: 1800-1930
Location: MCRD San Diego, Building 6E Classroom
3602 Hochmuth Ave.,
San Diego, CA 92140

Recap: End Endo FUNdraiser 2019

Sister Donatella Soul and Saint Birthday Suit pose together at an Endometriosis Fundraiser at a bar

Each year, a few gals get together and take over Shooter’s Cocktails, a local bar, to raise money for the Endometriosis Foundation of America. And this year was no different.

On January 27, 2019, Tanya Linda (aka Saint Birthday Suit), Sister Donatella Soul, and the San Diego Sisters of Perpetual Indulgence came together and raised almost $400 through general donations, drink sales, and online donations! A local band, the Ass Pocket Whiskey Fellas, also rocked the house and donated CDs to the cause.

Donatella and Tanya, who both have Endometriosis, agreed to share with us why they do what they do…

Tell us why you choose to raise money for Endometriosis awareness and research.

Tanya:
It is all I can do so I give it my all.

Donatella:
Tanya chooses to organize this fundraiser for her birthday every year with the help and support of The San Diego Sisters. It is important for Tanya as she manages living with endo. Five of the members of our Sister House in SD have endo, so it us important for us to support awareness and research and provide outreach to those in the community looking for understanding and a little joy. The venue we use, Shooters Cocktails, allowed our use for this fundraiser as one of the owner’s relatives has endo.

Can you tell us more about the Sisters of Perpetual Indulgence?

Donatella:
The Sisters of Perpetual Indulgence started Easter weekend, 1979, in San Francisco. The Mission is to promulgate joy and expiate stigmatic guilt. The Sisters were the first group to recognize, inform about, and fundraise for HIV/AIDS. The Order has spread and Houses and Missions may be found worldwide.

Tanya:
My favorite activists in SD. Bawdy, Funny, Informed, Helpful and without Shame!

This year a little something special occurred. The San Diego Sisters of Perpetual Indulgence granted Tanya a Sainthood! What’s that?

Donatella:
Personally, I have wanted Tanya to be sainted for some time for her support and promotion of The Sisters. Being able to include her efforts in endo awareness and fundraising was a Joy. I think it is an important inclusion as it means representation for those in our community managing endometriosis. A Saint of The Sisters of Perpetual Indulgence is a member of the community who supports the work of the Sisters. In Tanya’s case, her endo outreach has enabled The Sisters in our outreach and fundraising efforts for endo. A Saint is a member of The Sisters who does not have voting privileges. They are community members who support the work, but do not have a calling to be a Sister or Guard.

Tanya:
I am honored to help our Sisters help those in need in our community.

I know that Tanya serves special Endo-themed drinks every year at the FUNdraiser. What’s up with that?

Tanya:
Warning! Bawdy and we make no apologies for that!

Donatella:
LOL, Tanya and I wanted to create drinks that brought some joy, that the women could have a chuckle at. Also, the names make an impression on the men so in a humorous way we can get some points across about pain and discomfort. It is fun to hear the men get into it and yell, “I’ll have another Heavy Flow!”

Note from Bloomin’ Uterus: a portion of the proceeds from each of these drinks were donated to the Endometriosis Foundation of America. The drinks included: Heavy Flow (a bloody mary), Moist Vagina (a delicious shot), and Yeast Induction (a beer & a shot).

Anything else you’d like to share?

Tanya:
Derek French is an acupuncturist here in Mission Valley (San Diego, CA area) who has been treating my early stages of Endo with herbs and weekly acupuncture for over a year and my painful periods are now a whisper of what they were. Derek has treated Endo patients in more advanced stages with great results his number is (619) 993-9297.

Donatella:
I have found the End Endo event to be a wonderful way to let those suffering have an afternoon of fun and camaraderie with others who understand. It has worked to bring out women who have just been diagnosed, but do not know where to turn for information.

**

I cannot thank Tanya, Donatella, or the Sisters enough for doing this year after year. And Shooters for housing the fundraiser! AND a huge shout-out to the Ass Pocket Whiskey Fellas who were absolutely incredible (and will be joining us for our March walk)! Annnd than you Richard for the photographs and video!

If you missed the FUNdraiser this year, don’t fret: they’ll do it again NEXT YEAR!!! Thank you, Sisters! ❤ It’s always a blast and it’s for such a phenomenal cause.

All of these photos were taken by Richard T. Reyes (Saint Angel con Cuernos) and used with his express permission:

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!

Aly Needs Our Help: An Endometriosis Survey

Aly, standing in front of a rock wall

Yesterday we shared Aly’s story with you.  Today, we’d like to share an Endo project that Aly is working on…and she needs our help!

Here’s a quick introduction from Aly regarding her project:

I have been struggling with endometriosis for 7 years now plus 7 other chronic illnesses and I am only 21. I am a graphic design student and for my senior project, I want to create a catalog/brochure that would be available in doctor’s office or clinics to:

  • give patients information about the disease
  • ways to help with the pain and symptoms
  • share stories
  • find support
  • to help bring awareness about endometriosis
  • and a way to let women know they are not alone in the fight.

She has created a survey that she is asking people to take to help her with my research to create a catalog/brochure that people won’t just throw away. She’s also open to suggestions for the content, as well. 

I’ve taken the survey and it took a few minutes and had some valuable questions to answer.

2019 Endo Events Around the Globe

2019 Events with a yellow ribbon

Hopefully you can find an event near you; just click on the title of the event and it will bring you to more information.  I’ll add to this as I find new events! If YOU have an event you’d like me to add, please email me.

United Kingdom:

Birmingham – May 25, 2019 – EndoBall 2019

Brighton – April 14, 2019 – Brighton Marathon 2019

London – March 23, 2019 – Worldwide EndoMarch UK – London

United States:

California; Los Angeles – March 30, 2019 – LA EndoMarch 2019

California; San Diego – March 30, 2019 – Bloomin’ Uterus Endometriosis Awareness & Support Walk

New Jersey; Saddle Brook – March 23, 2019 – 3rd Annual Our Journey 5K for Endometriosis

New Jersey; Saddle Brook – March 23, 2019 – Our Journey Endo Walk

New Jersey; Rochelle Park – March 30, 2019 – 3rd Annual Our Journey Endometriosis Awareness 5K