A beautiful breakdown of treatment options for Endometriosis

A pile of open books
Photo by Amanda George from Pexels

A new study about Endometriosis is out regarding the modern treatment of the disease.  This includes birth control, progestins/anti-progestins, GnRH agonists, aromatase inhibitors, danazol, NSAIDs, surgery, and alternative treatments. It identifies the pros and cons of each.

The study closes with this beautiful phrase:

“The pharmaceutical or surgical treatment require an individual approach and deliberated informed consent of the patient. Pharmacological treatment is only symptomatic, not cytoreductive, therefore, to remove endometriosis lesions, surgery should be performed.”

It’s uplifting to see a study bluntly state that medications only treat the symptoms, NOT the disease itself, and the Endo lesions need to be removed.  AND that each case of Endometriosis must be reviewed on an individual level.

Deliberated informed consent of the patient” means (to me) as having a fully-informed patient who is made well-aware of the pros and cons of each choice, the side effects, risks, and potential outcomes; as well as having performed their own research before agreeing to the treatment.

Even with excision, though, there’s always a possibly of recurrence or new growths. And not all physicians are skilled enough to recognize each lesion. Not to mention many surgeons still practice ablation (the burning away of the lesion, leaving rooted tissue to regrow).

Welcome to an EndoWarrior’s very frustrating pursuit for competent medical care.

I encourage you to read the study for yourself and share it.

Resources:

Journal of Education, Health, and Sport (Article, 2019) – Available Treatment Methods for Endometriosis

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

Saying Farewell to an EndoSister

Kristen Cavanaugh
Kristen Cavanaugh; Oct. 3, 1985 – June 27, 2019

Written by Heidi Baurmann, Speaking on behalf of all of our Bloomin’ Uterus sisters.

It is with a heavy heart that I announce one of our own has lost their battle with Endometriosis. Kristen Lynn Cavanaugh will always be a part of our Bloomin’ Uterus Sisterhood.

Kristen found me on Facebook in March during Endometriosis Awareness month. In the little time I knew her, it was obvious what a strong advocate she was for us all, sharing her story openly with the community & supporting chronic illness sufferers.

On Wednesday, June 27th, I was devastated to hear the news that Kristen had lost her life due to medication complications (the medications are listed at the end of this blog entry). It feels so unjust to loose a sister this way. Kristen’s friends and family are focusing their energy on spreading awareness in hopes to help others who are suffering in pain.

In loving words, her mother writes, “Kristen had a passion for helping those with chronic illnesses, and through her small business of health care products, she reached many women who suffer with endometriosis and fibromyalgia.“ Here is the link to her obituary. https://horancares.com/obits/kristen-cavanaugh/

Her dear friend opened up to me about her great sense of humor & expressed that what she “loved about her was how selfless she was. She quit a 6 figure job at DISNEY, to make boxes for each endosister. She carefully thought of each item while adding them to the boxes. She had such a big heart.”

Her family is asking for donations to the Endometriosis Foundation in her name. (There is a section where you can state who you are donating for.)
http://www.endofound.org

Here are the links to her Instagram endo page as well as her personal page, if you would like to say some words on her behalf.
@witsendocornerapothecary
@forkristenforeverago

Kristen will always be remembered in our hearts as a woman who fought hard & gave back. I hope you are looking down at all of this love and smiling. We send love to her family & all those who are feeling her loss.

**

Update: July 9, 2019: Suzie, Kristen’s mother, has given us permission to share the medications that Kristen was prescribed, which may have contributed to her death. We are sharing this information with you to implore you to verify with your physicians (and do your own research) regarding any potential drug side effects or interactions.

On June 24, 2019, Kristen was prescribed Dilaudid, Valium, Xanax, and Ambien. Suzie wants to stress to you that these medications, if taken together, can cause respiratory distress. Kristen and her family were not made aware of this danger. She would like to remind each of us that, “combining those meds is very dangerous.”

If you’re worried about your multiple over-the-counter drugs, prescription drugs, and/or herbal supplements having potential risks (or even death) when taken together, please talk to your doctor. And you can check out drug interactions on this amazing database.

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.

Pain Journal: June 2019

I cannot believe that June is already behind us. It was a pretty laid-back month for my Endo. I skipped my period again, but I’m not too worried about that.

I still haven’t learned my lesson about eating too much. And when I do, I still get discomfort near my staples in my guts. I also experimented with having two or more boozy beverages; nope, not good. My body still doesn’t like that. Now, though, instead of intense staple pain my guts just freak out: I either poop uncontrollably or don’t poop at all for a day or two…which causes a discomfort all in its own. And I also experienced some left-abdominal discomfort and/or pain, but it was rare, minimal, and only at times right before I had to poop (and no every time I had to poop, either). And I mostly poo’d between one to five times a day, with a few days of no-poo…but those no-poo days were usually triggered by poor diet and beverage choices.

I did have one instance of “what the heck is that” pain near my lower left abdomen when I was bending over and cleanin’ the cat litter. It was fast and sharp and I figured it was either adhesions or that li’l cyst on my left ovary. Again, I’m not to worried about it.

Although I skipped my period, I did have a few days (around where I should have been bleeding) where I was super emotional and had baby-twinges of cramps. So I think my body was trying really hard to have a period. I spotted a few times during those days, but I’ve picked boogers that made more blood than my uterus did those days. So, seriously, counting June as a skipped period month.

And my favorite part of reviewing my pain tracker? No need for any NSAIDs or pain meds! No Ibuprofen, no Tylenol, no Naproxen Sodium, no Percocet, and no Tramadol! I cannot stress the importance of excision surgery by an experience Endo surgeon, as well as getting in tune with your body and seeing what else it may need: diet changes, meditation, acupuncture, cranial sacral therapy, yoga, pelvic floor therapy; whatever helps you!

Here’s my June pain journal and poopy charts!

Endo Diagnosis: Five years ago today

cake with a big number 5 candle on it
Birthday Candles by Andy Eick

My calendar has been reminding me every day this week that today is my five-year diagnosis anniversary…and I’m a maelstrom of emotions.

Sad. Happy. Angry. Vindicated. Excited. At peace. Hopeless. Blessed.

Years of pain, telling my doctors, taking meds, cancelling plans, missing work, and accepting it as normal. And five years ago today, I learned the cause of my pain had a name: Endometriosis. I never would have received my diagnosis if it weren’t for a series of ultrasounds, a competent doctor whom I now cherish, and the appearance of a persistent cyst on my ovary:

Feb. 2013: pelvic ultrasound

May 2013: pelvic ultrasound

May 2014: pelvic ultrasound – possible dermoid cyst

May 2014: pelvic MRI

June 30, 2014: exploratory, diagnostic, and excision surgery! SURPRISE ENDO!…not a dermoid cyst.

Sept. 2014: pelvic ultrasound

May 2015: pelvic ultrasound

Feb. 2016: flexible sigmoidoscopy to check out bowels due to pain

May 2016: pelvic ultrasound

July 2016: pelvic CT

Sept 2016: 2nd excision surgery

May 2017: pelvic ultrasound

August 2017: pelvic ultrasound

May 2018: pelvic ultrasound

June 2018: pelvic ultrasound

July 2018: 3rd excision surgery (Endo remained on small intestines to be dealt with ASAP by colo-rectal surgeon)

Nov. 2018: 4th excision surgery and bowel resection

April 2019: pelvic ultrasound

Pending July 2019: pelvic ultrasound to monitor a possible endometrioma…

The journey continues…and the spinning maelstrom of emotions also continue to fester: Sad. Happy. Angry. Vindicated. Excited. At peace. Hopeless. Blessed. Now with the possibility of the disease already being back already, add on: Scared. Nervous. Hopeful.

But my favorite part of today’s five-year anniversary? It led me to my Sisters and fellow Warriors, has given me new friends, and it’s brought me so much closer to my family. Endo given my a voice and purpose. It’s united all of us: Warriors and our Support. And we all fight together…not only for our own survival, but for one another.

Happy Big 5, Endo. Thanks for everything. ❤

Feel Good Fridays

Desert Tortoise crossing roadway, by Brad Sutton/NPS
Desert Tortoise crossing roadway, by Brad Sutton/NPS

Happy Friday!

I know a lot of my friends have had a rough week. Pain. Cancelled plans. Lots of self-care. Today is for you:

“It does not matter how slow you go as long as you do not stop.” ~Confucius

One foot in front of the other. Or, just stand still…for a moment. Then, keep forging ahead. And if you need it, reach your hand out. I’ll take it and we shall walk together.

Love you guys. Have a great weekend. ~Lisa

Blogs I Added This Week:

New Study: Elagolix vs. Lupron: Abbvie’s findings of which of their two drugs will be more cost effective for patients…(insert grumble here)

Blogs I Updated This Week:

Orilissa: Abbvie’s New Drug: added a June 2019 study showing women no Elagolix/Orilissa had improved work attendance (an extra 2-4 hours per week)

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