Share Your Story: BMW

photos of Endosister, BMW

BMW has asked that I share her Endometriosis journey with you today. She was diagnosed when she was 13 years old and is now 32. We live in the same area, so I look forward to getting to know her better!

BMW’s JOURNEY: 

Where to begin… As I lay curled up in the fetal position holding my stomach with one hand typing with the other. I find myself just wanting to talk to someone anyone… Wait no not anyone someone who understands. I’m in pain.

And not take a ibuprofen and lay down pain. But mental and physical anguish.

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Feel Good Fridays

Thunderstorm clouds on the horizon
photo by Kevin, Colorado Clouds Blog

Here we are again! A Friday! Already!!!

I’ve been relishing the mostly pain-free life since my November surgery. And every little tiny prick of pain sends me deep into a “Oh no, is it coming back already?” thought process. The poor April ultrasound results don’t help and I’m eagerly awaiting the July follow-up ultrasound.

But, I ran to Heidi and we had a little conversation yesterday during a moment of doubt. Heidi has had some glorious results from pain management and physical therapy and I figured she may very know the fear I was feeling:

Text conversation with Heidi.  Me: "Do you almost fear all the shit just coming back and rendering you incapable gain?  I do." Heidi: "Oh man, yes hunny!  Every twinge of back pain makes me think it's coming back again.  It's this stormy cloud just over the horizon that's taunting me. I'm so grateful for where I'm at & I just have to remember how hard I fought to be here, & try to enjoy each moment.  We got this, & we're beasts."

See? SUPPORTIVE! Heidi is amazing. And, she’s right: WE GOT THIS AND WE’RE BEASTS!

But yesterday’s moment has led to today’s quote search. It captures the fear I have. It gives it a visual that many people can relate to; a fear that gnaws at the fiber of their being. I suffer from a painful chronic illness, and although I’m in a wonderful position right now, I still have these fears:

“That’s the point. This healthy-feeling time now just feels like a tease. Like I’m in this holding pattern, flying in smooth circles within sight of the airport, in super-comfortable first class. But I can’t enjoy the in-flight movie or free chocolate chip cookies because I know that before the airport is able to make room for us, the plane is going to run out of fuel, and we’re going to crash-land into a fiery, agonizing death.” 
― Jessica Verdi, My Life After Now

Okay, so it might be a little dramatic…but it really captured how I feel about this relentless disease. Endometriosis.

I have my Sisters, my Warriors, my Family to get me through these moments. I’ll enjoy the in-flight movie and complimentary cookies. I’ve embraced having my nights and weekends back to enjoy. And maybe…just maybe…I can acknowledge these fears when they bubble to the surface and let them go.

May we all be able to do such a thing.

Love, Lisa

PS – Heidi, I love you so very, very, very much.

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.

New Clinical Trial for Endometriosis Pain

Icon of doctor and patient for clinical trial

An EndoSister shared a page with me describing a new clinical trial for women suffering with Endometriosis pain. It’s a vaginal ring that delivers *some type* of medication. There wasn’t much information on the site about what type of medication…

If you’re interested in seeing if you qualify for the clinical trial, you can submit your application by answering a few questions on ResearchMyEndo’s site. Once you’re talking to a representative, be sure to ask questions like what type of medication is it (pain medication? GnRH agonist? GnRH antagonist? potential side effects? options to leave the study, etc.) AND (most importantly), you may not want to read any further of this blog entry because I don’t want to reduce your chances of being accepted if researching the product is a disqualifying factor.

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Pain Journal: May 2019

Summary of Lisa's pain for May 2019

May was a fun one. I was curious if I’d skip yet another period. OR if having skipped my April period would lead to a hellish May visit from Aunt Flow.

As you can see, I was pleasantly surprised! My period cramps never got above a 2 out of 10! My lower back pain was intermittent on my period at a low 1 out of 10. And I did receive a twinge of pain when I coughed on my period, toward the lower right abdomen area. I only took two over-the-counter Ibuprofen for my mild period cramps and back discomfort on the first day of my period. I had to remind myself, “Why suffer with this pain?” And they killed the remaining discomfort and cramps. TWO IBUPROFEN!

My other pain during May while NOT on my period?

  • May 8th: I woke up at 6:30am with mild lower abdomen cramps, a 1 out of 10. Nothing to be concerned about, but something to note. It only lasted a few minutes; and I wondered if it was gas or poo-related.
  • May 9th: I did it again; I ate too much. A buffalo bacon cheeseburger AND onion rings? I mean, I didn’t finish them…but I most certainly should have stopped eating sooner. This led to discomfort at my staples, 2 out of 10.
  • May 10th: an odd, burning type of discomfort near my staples that lasted a few minutes, 3 out of 10. About an hour later, it was a quick series of diarrhea and poops; so I figure that discomfort was most certainly poo-related.
  • May 12th: I woke up with mild discomfort at my staples; likely related to the night before’s angry bowels…
  • May 13th: this was a new one: a weird discomfort in the area between my belly button and my lower ribs. Similar to the location of my pre-surgery pain, so of course I quirked an eyebrow and monitored this one with extra vigilance. The discomfort was only a 2/10. And didn’t lead to a big poo or anything horrible. It didn’t last long, either.
  • May 14th: a repeat of that throbbing discomfort between my belly button and lower right ribs; it was a 3 out of 10 and lasted several minutes when I woke up. It occurred again that afternoon. It happened again twice more that afternoon…and I found the trigger. CHERRIES! By going through my food journal and timestamps, I realized it MIGHT be cherries causing me some type of gas pain. So…I stopped eating cherries…
  • May 22nd: I, again, ate too much. It was yellow curry with chicken; I mean, how can you NOT eat to much? Well, I haven’t learned my lesson and received my usual staple discomfort, 3/10.

And my May poos? ZERO PAIN the entire month. No glass being dragged through my guts. No cramps while I poo. No need to bend over in two and cry while sitting on the porcelain throne.

May 7th holds the record for the most poos in a day: seven and two bouts of diarrhea! SEVEN!?! I hadn’t poo’d well the day before…and this was just my body’s way of suddenly purging all the leftover crap that was still in my guts! Seven…I was exhausted that day. LOL

What were the lessons I learned in May? 1) STOP EATING TOO MUCH! Just take your time, eat slowly, give your body time to adjust to the volume of food, and STOP EATING. Push the plate away, drop the fork, get a doggy bag. 2) My body’s not ready for two drinks a day. It may not lead to that agonizing pain I had in January…but it leads to some poopy issues. 😉 Just leave it to one drink…

If you’d like to read my day-by-day play-by-play May pain and food journal, please check it out below:

If you’d like to see my Poo Chart, please check it out below: