Feel Good Fridays

Good morning and happy Friday!

Today’s quote goes to all you supporters out there: whether you’re a caregiver, a friend, family, loved one, stranger…Thank you! And not just thanks from me…but thanks from anyone you’ve ever supported!

Just being there for someone can sometimes bring hope when all seems hopeless.

Dave G. Llewelyn

If someone needs you, and you can do it, be there for them. In any capacity.

Have a wonderful weekend.

Love, Lisa

Feel Good Fridays

Friday! I have today off for the holiday. My brother, sister-in-law, and nephew are out for the weekend. And we have friends joining us today and tomorrow as well.

Its shaping up to be a great weekend with a giggling nephew and wonderful friends.

Here’s your quote. 🙂 May you have a wonderfully full and vibrant canvas!

Life is a great big canvas, and you should throw all the paint on it you can. – Danny Kaye

Looking for All Natural Bath & Beauty Products? Look No More!

Jar of raw honey and freshly cut handmade soap by Special Flwoer Oil, Co.
Beautiful handmade soap by Special Flower Oil, Co.

Friends of mine, Raul and Yuliya Montes, have started a small company creating and selling natural bath and beauty products (and a few other things!). I’ve purchased and fallen in love with several of their items and wanted to sit down and pick their brains for a few minutes and share the news about Special Flower Oil, Co.

…pssssst…they make CBD oil bath bombs…

Looking for all-natural bath bombs, soaps, lip balms, and more? Read up a bit on who these guys are, what they make, and then go peruse their wares!

Lisa: Special Flower Oil, Co.?  That’s a great name! How’d you come to be?

Yuliya: We have this inside joke between the both of us that we’re a bit “special” two peas in a pod and all, and we came up with this saying “You’re my ‘special’ flower,” when one of is being a little on the – well… less than intelligent side. We always knew we wanted to own our own business, and at the same time wanted to do something that we both enjoy that benefited other people that we could do together – so one day while taking a shower together, we noticed how many ingredients were on some of the items – and we decided to work on something more natural.

Raul: It pretty much started with this weird rocking side to side, that kind of evolved over time. Our company name is literally our way of making fun of ourselves and each other, even though people outside, likely think that it has to do with the oils we use and such. As far as the start – we woke up one morning thinking, “wouldn’t it be nice to quit our day jobs do something we enjoy more?” Well, we haven’t quite quit our day jobs, but we’re doing what we enjoy.

Mason jar filled with shower steamers by Special Flower Oil, Co,
Organic shower steamers by Special Flower Oil, Co.

Lisa:  What do you feel sets you apart from the endless stream of competition out there?

Yuliya: We do hours of research over every single ingredient that we use, we refuse to take shortcuts. We believe that we need to be producing a product that we, ourselves would use before selling it to others, and having integrity in the ingredients that we use.

Raul: I think it’s unique that you’ve got a small business co-owned by a married couple, one being a woman, one being an OIF war vet. My background is in combat medicine, and in that I’ve discovered that improvised treatments and at times alternative treatments can have huge impacts on quality of life. Aromatherapy in and of itself isn’t just about chakra crystals and weird blessings, there’s some solid science behind it, including cognitive improvement in Alzheimer’s patients who have used rosemary, lemon, lavender and orange.

Lisa: As a person who suffers from a painful chronic illness that is often influenced by chemicals, parabens, and hormones, I appreciate your dedication to pure and body-safe ingredients in your products.  I see you guys use organic and locally-sourced ingredients.  Why is that important to you?

Yuliya: Back in 2013, I was diagnosed with Hashimoto’s – an autoimmune disorder that attacks and destroys the thyroid, and because of it I will be on supplemental thyroid hormone for the rest of my life. The more I did research, the more I found that body care products are ridden with harsh, endocrine-disruptive chemicals, affecting the body – and being a woman, I was using these chemicals all over my body. I threw out a lot of my stuff and began seeking out items that were natural or organic – but these are expensive, so I decided to make my own. I mean, with the skin being the body’s largest organ, and it absorbs a lot (up to 64% of contaminants from water alone), it’s easy to see that what we use on our skin ends up in our bodies – often in our blood streams and lymphatic systems, and it seems like the majority of mainstream body care products contain a horrible cocktail of carcinogenic chemicals, allergens, and irritants. Knowing who makes our ingredients, knowing how they are sourced, and using them ourselves first, always ensures that we’re creating the perfect product.

Raul: I completely echo everything Yuliya said. I think that knowing where an ingredient is from, how it’s sourced, and having a relationship with the ingredient producer is important. Case in point, our Goat Milk, Honey, and Oats soap uses organic goat milk and oats, and raw honey from a local beekeeper, who also happens to be a fellow combat medic. Up to that point I’d never had fresh raw honey – and my god does it taste amazing. These are just glimpses into the items that we’re using in our soaps and bath bombs. I want people to feel as good about the product and the way it’s made as they do while they use the product.

Bath bombs by Special Flower Oil, Co,
Bath bombs made by Special Flower Oil, Co.

Lisa:  A lot of our readers suffer from chronic pain.  I see that you have “hemp isolate” bath bombs; can you tell us a little bit about what that means…and how your bath bombs may help someone in pain?  

Raul: CBD. It’s CBD plain and simple. I’ll be really honest – its really hard to sell items online that contain them, regardless of the farm bill passing. As such I wanted to make sure it was something that if someone said, “oh what is hemp isolate powder,” that they could type it in and the first thing they would see is CBD. We’re covering ourselves while trying to afford a completely legal and THC free item to those who need it.

While researchers don’t entirely know how CBD works yet, they think that it interacts with receptors in the brain and immune system. Moreover, it helps as an anti-inflammatory as well as can help those who suffer with chronic pain, and associated insomnia without adverse side effects. Now – when its combined with other anti-inflammatory and pain relief oils such as lavender, yarrow, eucalyptus, and chamomile – and of course Epsom salts, it creates a beautiful pain relief cocktail that you can literally just envelop yourself in. I’ve also got some CBD soap curing right now that I whipped up earlier today using the goat milk oats and honey base. I’m excited to use it!

Yuliya: CBD is nature’s way of affording us a pain relief option that doesn’t involve using drugs, while being able to indulge in the experience. Imagine it, you pour a hot bath, enjoying the hot steam – you toss in one of the bombs and soak for a half an hour, letting your skin absorb these pain relief oils and CBD… Oh you’re ready for painless sleep.

Lisa:  If someone doesn’t want a “hemp isolate” bath bomb, do you offer them the option?

Raul: Of course, we understand that CBD is still considered one of those edgy, experimental type of products – because of that we have the same bath bombs and soaps completely hemp free.

Yuliya: All of our products are customizable. If you see an item of ours that has hemp, and you want a hemp free version, just reach out – we’re more than happy to make custom products.

Bowl of bath bombs by Special Flower Oil, Co,
Bowl o’bath bombs by Special Flower Oil, Co.

Lisa:  I’ve gone through numerous pain management and stress-reduction workshops over the past five years and I’ve learned that sometimes to help reduce symptoms and pain, we need to try to calm our nervous system.  Take a moment. Breathe. Meditate.  There’s a great connection between pain and a heightened sense of “FUCK, EVERYTHING HURTS (and I wanna die!)”.  That being said,  I know you make scent roll-ons.  I’m partial to the “Palomar Skyline” blend as I find it very soothing, calming, and the scent jettisons my mind up into the mountains.  Are your essential oil roll-ons intended to aid in relaxation and calming techniques? Or just smell good? How can your customers better use your roll-ons to help calm and de-stress, both physically and mentally?

Yuliya: Absolutely, I deal with constant anxiety. I’m currently testing an experimental mixture that I’ve named “Natural Xanax,” Which I use pretty regularly to reduce my overall stress levels. Our oils are designed to both smell nice (and not overpowering) while helping the customer come off the proverbial edge. They also work amazingly while meditating. Our goal here was to help the customer find peace in the moment.

Raul: I’ve got some that I’ve made just to act as a cologne, such as the GWOT Christmas, but by in large the scent oils are designed to help center someone. Dealing with PTSD, I’ve learned that sometimes a couple of dabs of the Palomar Skyline can help pull me out of a moment – whether its dealing with chronic pain due to spinal compression (or a recent shoulder surgery), or dealing with the existential hell my mind likes to throw me into. I always recommend using the oils on pulse points – or if you so choose, diffuse them, close your eyes, and focus on the smells. As odd as it sounds, I personally practice a verbalization of what I “see” when I close my eyes and focus on the scent. It really helps to pull me out of the mind-storm and places me on a mountain, in a lavender field, or in an orange grove…

Soap and essential oil roll-on by Special Flower Oil, Co,
Roll-ons and soap by Special Flower Oil, Co.

Lisa:  Do any of your roll-ons have pain-relieving capabilities?  My Mum buys me an essential oil spray that does the trick for acute pain.  And a friend of mine gifted me with a roll-on that also helps with surface pains.

Yuliya: Yes! Like Raul said, certain oils have pain relief and anti-inflammatory properties. Rolling or dabbing them on the skin can help with pain and inflammation in addition to the calming nature of each one of the oils.

Lisa: I’ve read your soaps use goat milk and locally-sourced honey.  Why is that better than ingredients that may be found in other soaps (handmade or otherwise)?  Sell me on their magic!

Raul: Goat milk alone is an amazing item. It contains Alpha Hydroxy Acids that help to unbind dead skin cells from the surface of the skin, giving a more rejuvenated look, vitamin A, which has been proven to reduce lines and wrinkles, cream – which keeps the skin moist (especially during those winter months) and minerals like selenium, which has been praised in recent years for its ability to prevent skin cancer.

Then honey helps to balance the skin’s natural bacteria, helping to reduce the appearance of acne, as well as speeds up the healing process of the skin.

Combined they can help with eczema, psoriasis, and even candida overgrowths on the skin.

Sugar facial scrub by Special Flower Oil, Co,
Lavender Charcoal Facial Scrub by Special Flower Oil, Co.

Lisa: I’ve never made soap before and imagine it’s much like making Jell-o: throw everything in a bowl and *tada* I have soap in a few hours. I know that can’t be true. So… how what all goes into creating a handmade bar of soap?  Help me appreciate the process and effort, please. 

Raul: Soap can be a real pain in the ass to be honest. It starts off with research and figuring out what items I want to use to make a soap – for example, if I want to make a beautiful swirly soap, I need to use canola oil, keep out the shea butter, and make sure my fragrances and essential oils aren’t going to accelerate the saponification. The next part is selecting my fats – which are oddly enough, often the same oils we use for cooking – coconut, canola, sustainable palm, olive, and the like – melting them down and mixing lye (yes lye) with either distilled water or goat milk (which has to be frozen to avoid curdling). Once lye mixes with a liquid, it creates a lye solution which is the basis for *all* true natural soaps.

Let me restate this: all real soap is made with lye – anything without it is a detergent and not a soap. Yes! Real Soap is made with lye. You might wonder where the lye is on the ingredients list of your favorite soap – “saponified oils of –“ or sodium followed by cocoate, palmate, palm kernelate, tallowate, or olivate. Soap makers know that people are afraid of the word “lye.” None remains in the finished product.

The lye is then blended with the oil, it begins something called “trace.” Trace is the point in soapmaking where the oils and lye have emulsified and the lye begins saponifying. Once this happens the lye and oil molecules combine and are chemically changed into soap and glycerin. From this point it’s put into a mold for a few hours or days, then cut, and left to cure for four weeks.

Soap and candle by Special Flower Oil, Co,
Handmade soap by Special Flower Oil, Co.

Lisa:  What’s been your favorite product to make?

Yuliya: Soap! Always soap. There are endless possibilities – from scent combinations to oil combinations. Each one of our handcrafted small batches is completely beautifully unique in its own right, and it should be, because it reflects us as people.

Raul: Soap. It might be a pain in the ass, but it’s totally a relaxing activity for me, and I can design each bar as meticulously as I want to. I can’t draw. I can’t paint, so this is my art.

Lisa:  Have you had any mad scientist concoction failures with any products yet?  Tell us a funny story…

Yuliya: My first round of lip balm. It was horrible! It was rock hard. Completely solid. We ended up scrapping the whole batch because I was being stingy with oils. It was like trying to rub a candle on your lips.

Raul: My first round of bath bombs. Oh God, they were horrible. I’m not even sure where they went wrong… well the worse part was – I’d made two batches – the first was great, and we had gotten our first order when we’d opened the Etsy. Guess which ones got sent? Yeah… as soon as I realized, I contacted the customer (who thankfully hadn’t used it yet) and sent out another set of bath bombs free of charge. I mean, we saved the day, but it felt really dumb.

Bath bombs by Special Flower Oil, Co,
Bath bombs by Special Flower Oil, Co.

Lisa:  Any sneak peeks at items you’re working on that aren’t released yet?

Yuliya: Massage candles, therapeutic body butters, tinted and flavored lip balms, face masks, and beard balm for the guys.

Raul: A few more soaps. I want to have seven main “flagship” soaps, and run a special “soap maker’s” batch once every month or so – which will just be a few of our “left-field” ideas thrown into action

Lisa:  Do you take custom requests?

Not only do we take customer requests, we look forward to it!

Lisa:  Anything else you’d like to add?

Our goal is to give back to the communities. We like working with 503s and other small businesses. We also have wholesale options (we make it, you sell it as your own).

A li’l more about Special Flower Co.:

Early in 2019, we were discussing the prospect of having a wedding reception, and began discussing what kind of party favors we would use. Initially we settled on bath items, like soaps, bath bombs, and scrubs, but after looking, we felt like nothing really fit the people who had always been there for us. There were plenty of quality goods out there, but none that were uniquely “us.” 

That’s where Special Flower Oil Co. began. 

Personalization and uniqueness are what make an item special. It’s the time taken to make a unique item that isn’t mass produced and misleadingly called “handcrafted.” It’s about the time and effort we take to perfect our art, whether that be the scent in a bath bomb, the particular composition of a soap, or the one on one focus on customer service. 

We are Special Flower Oil Co.

Raul and Yuliya

Yuliya and Raul Montes kissing
The happy couple and Special Flower Oil, Co. founders: Yuliya and Raul Montes

NOT JUST ANOTHER “HANDMADE” BATH PRODUCT

Our products utilize top of the line organic, fair trade compliant, rain forest safe oils. Moreover, we source local products from goat milk to honey, as often as we can, utilizing veteran owned businesses where available. We also source our herbs from local, organic, pesticide free gardens – because you deserve to feel as good about a product’s background, as you do when you use the product.


You can find Special Flower Oil, Co. on the interwebs:

Email: info@specialfloweroil.com 

Web: https://specialfloweroil.co/

Facebook: https://www.facebook.com/specialflower/ 

Instagram: https://www.instagram.com/specialfloweroilco/


I want to extend a huge thank you to Yuliya and Raul for not only creating some amazing products, but for being the exceptional human beings that they are…and for taking the time to give us a sneak-peak into their lives and business. We wish you continued success in all endeavors!

*I was not compensated for this interview. It’s just something I wanted to do for them…and you.

New Study: Elagolix vs. Lupron (Cost Effectiveness & Quality of Life)

Red apple and green apple
Comparing apples to…apples? Image by Freestocks.org

This will be a highly-charged opinion piece for me…so as you read what I am writing, please know that I am seething and upset and just needed to vent.

A study of Elagolix (aka Orilissa) hit my inbox recently and I just opened it today. It was run by Abbvie, of course. And it compares Elagolix to Lupron to see which is more cost-effective in possibly giving women with Endo a greater quality of life. So, it’s win-win for Abbvie since they make both of those drugs…

Elagolix was deemed the “winner” in that it costs patients less money and possibly grants them a greater quality of life with a possibility fewer side effects.

And why am I seething? That sounds great!

  • a) It’s the same damn company comparing two similar drugs that it manufactures,
  • b) both are laden with possible shit-tastic side effects,
  • c) both can only be taken for a minimum amount of time , and
  • d)…the best for last: San Diego’s own Dr. Agarwal is listed as an author, a consultant for Abbvie’s research, and he helped with the “inception, design, and analysis” of this study. The same Dr. Agarwal who accepted $315,000 from Abbvie from 2013-2017. And I’ve been told my many of his Endo patients that he often pushes Lupron and Elagolix for treatments.

Does it make me want to consider taking Elagolix to manage my Endo pain? Not one bit.

I was on Lupron for six months and it was one of the hardest things I’ve ever done, physically and mentally. Many people I’ve talked to had horrendous side effects and continued to have them long after quitting the treatments. And ABC 10 News interviewed several of our local EndoSisters about their Lupron experiences. It’s my understanding that Elagolix is very similar to Lupron…so I’ve zero desire to put my mind and body through such torture again…for a temporary, limited-use band-aid drug. But, I will always say this: don’t let my opinion sway you from a treatment option.

A fellow EndoSister, Magda, has a different perspective and she has given me permission to share her words today:

“I had a very good experience meeting with Dr A a few months ago finally so I don’t agree with a lot of the comments made about him. 

“I’m on a different study, for [redacted] which is similar but not one he is associated with and he thanked me for doing so even, and honestly my endo pain surprisingly enough I feel is quite nonexistent at this point, around 8 weeks in on non-placebo drug. Obviously if some saw me in a walker this last weekend it’s bc I need surgery on my hip from the labral tear because of a car accident but I’m beyond grateful that my endo is finally under control with one of the newest drugs out there for it, and with the addback therapy I haven’t seen any real side effects I’ve noted. In 2 weeks I’ll have my bone density rechecked so we can see where that is but I feel grateful to finally be on something helping control my endo pain, especially with limited side effects. 

“Since surgery is clearly not an end all option for our disease we’ve all learned maybe we should keep an open mind that there are some doctors out there that are truly trying to actually find a solution to at least help control our daily symptoms and in my opinion that is what Dr A is doing with his current practices, as a cure is not that simple. Unfortunately most diseases don’t have a cure, all kind of people take daily meds for all kind of things, like high blood pressure, diabetes, thyroid problems, high cholesterol, migraines, I could go on and on and on……trust me I get it. I literally cried my eyes out earlier this year the first day a doctor told me I was in denial that I had endometriosis and needed to be doing something about it, but mainly because I realized she was right. I also realized there are a lot worse things in life and in some case way worse conditions, especially some that don’t have a few pills that can help lower the pain levels or even possibly not help you in staying alive.

“So I count my blessings that I finally know what’s caused my pain, even though it took a long 21 painful years and a horrendous almost near death experience in the hospital last year just to get a diagnosis and finally know, but at least now I know and I’m doing something about it.

“That’s why I joined a study. To help not only myself but all the countless women who might still not know, and especially the children, more specifically the ones in my family that might be the unlucky ones to get this disease as well…..everyone has their own choices to make in life. I’ve made mine to help make a difference in any way I can. My question is what are you doing to help. If not others, at least for yourself. God put doctors and scientists on this earth to work on and help possibly eventually find cures, or at least medications that can help, that’s what the current studies out there are for. Without patients willing to help test the products, they will not be able to help us. And who knows, maybe you will actually feel better in the process. I know I do. And I at least have that to be grateful for. That’s my food for thought on this topic. “

Please, please, PLEASE do your own research and know what you’re getting into first: read the entire FDA drug pamphlets, analyze the studies, talk to others that have tried it, and question your healthcare providers. Most importantly: trust your gut. The decision is yours, and yours alone.

Resources:

Future Medicine – (Article, Feb. 2019) Cost–effectiveness of elagolix versus leuprolide acetate for treating moderate-to-severe endometriosis pain in the USA

SAVE THE DATE! 2020 Bloomin’ Uterus Endo Walk

2019 Bloomin' Uterus Endometriosis Awareness Walk
2019 Bloomin’ Uterus Endo Awareness & Support Walk; photo by Richard T. Reyes

Save the date!

The Worldwide EndoMarch announced Saturday, March 28, 2020 as the date for next year’s walk. And although we aren’t affiliated with their march, we do like to have it on the same day.

Solidarity!

So, save the date: Saturday, March 28, 2020

Further details to follow.

…let the planning begin!

Feel Good Fridays

Back of Lisa's Endometriosis Journey tank top which shows each year of surgery and where endo was found
Back of shirt

As is my customary Friday morning tradition, I found myself back at my favorite bagel place for my breakfast and an almond milk hot chocolate. As I waited for my wares, I noticed a woman waiting in line eyeballing the front of my shirt.

If you haven’t seen the front, it’s a wonderful design, created by a friend, representing my insides after my Endo surgeries. Ha.

Front of tank top showing fun cartoon of uterus, no fallopian tubes, and a resected intestine
Front of shirt

Once she paid for her bagels, she walked right up to me with a big smile.

“I was standing in line reading the back of your shirt,” she said. “So then I had to try to read the front of your shirt to see what it is.”

“Oh?” I prodded.

“You’ve had quite the ride,” she said, with a li’l bit of sadness in her voice.

“It sure has been.”

“I’m familiar with the disease…” she said, leaving it open-ended.

Familiar? Did she have it? Does her daughter??? She looked to be in her sixties. “Are you?” I prodded further. “Do you have it?”

“No,” she smiled, “but I’m an OB nurse.”

We talked for a little while longer while we both waited for our bagel sandwiches and beverages. She seemed surprised at how extensive it could be, how entwined it can get, and how often my surgeries were warranted. I let her know that my pain levels were in a good place since my last one. She placed a warm hand on my shoulder, “I hope it stays that way.” And we said our goodbyes.

Such a wonderful way to start a Friday. And now? On to today’s Feel Good Friday’s quote:

“Finding healthy coping mechanisms are as essential as breathing fresh air

Find what works for you.

Do it with zest and fervor 

Unapologetically” 

― Renee A. Lee

For me, striking up conversations, spreading awareness about Endo, and making connections is a huge part of my coping mechanism and self-administered therapy. That being said, I know it’s not for everyone. What helps you cope? Let me know in the comments below!

I hope you have a wonderful weekend.

Love, Lisa

Blogs I Updated This Week:

Endo & Liver Function: added a 2019 study of a 42-year-old woman who complained of right quadrant pain, vomiting, and nausea. Turns out she had the super-rare Endo on the liver!

Share Your Story: RDS

blonde woman laying on couch clutching lower abdomen in pain.  Photo courtesy of USDA blog
Original photo courtesy of USDA; re-edited by Lisa Howard

RDS is a 40-year-old woman living in Turkey, struggling to find answers and the medical care she needs.

RDS’S Journey:

I have had issues with my lower abdomen for years. It was always worse during my periods. Three weeks ago a new pain came on my right hand side. I thought it might be appendicitis, so I went to the emergency department. The doctor’s first performed an ultrasound, but couldn’t get a good view of the appendix. It was agony them pushing and searching for the appendix. In actual fact the appendix was behind the ovaries. Because the pain was intense they suspected appendicitis and performed a laparoscopic appendectomy.

Whilst operating however they discovered the reason why they couldn’t get a good view of my appendix: It was literally stuck to the right ovary. They said only the end of the appendix was inflamed and there was something around my ovaries. They cleaned that up, consulted a gynecologist, removed the appendix, then stitched me up.

I wish my Turkish was better to understand what was around the ovaries but I highly suspect endometriosis. The doctor’s did not give me any other advice ( it was a public hospital. In and out like a conveyor belt) and I was sent home. But I’m still getting pain and I think a gynecologist is the next point of call.

Our Response to RDS:

Hi RDS! I don’t have your email or a way to get in touch with you, so I hope that you can find this blog entry.

If you do find this, please email me. My gynecologist and excision surgeon is here in the United States, but he’s from Turkey. Perhaps I can ask him for any recommendations of where you might go to seek the medical care you need.

*

I want to send a special Thank You out to RDS for being brave enough to share her personal story, struggle, and journey with us today. We wish you all the best in seeking your medical care and answers. And will be praying for you.

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  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.



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.

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: