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.