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.
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.
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.
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.
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.
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…
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.
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
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.
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.
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.
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
Raul and Yuliya
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:
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.
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!
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.
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 Lupronfor 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.
Future Medicine – (Article, Feb. 2019) Cost–effectiveness of elagolix versus leuprolide acetate for treating moderate-to-severe endometriosis pain in the USA
Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Are you available to attend a webinar on Thursday, June 27, 2019, at 1:00pm (Pacific Standard Time). Join them for the free online webinar featuring Dr. Leslie Wakefield. Dr. Wakefield will be discussing how how physical therapy can treat Endometriosis symptoms.
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.
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
― 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.
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!
“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.
I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.
As a result the Mirena embedded in the wall, and once removed, I bled for 2 months straight, and a walnut sized tumor grew. I then had an ablation done (Sept 2017) to remove the tumor to try and control the bleeding. I was okay for about 1 month, and the tumor started to grow back. I then had a full hysterectomy (May 2018).
I was okay for about 5 months, and then the pain in stomach (so horrible) I went for a endoscopy, and the Gastro Dr. believes I have endo on the duodenum, as there was tons of food at the bottom of my stomach after a 20 hour fast, so slow digestions when the endo is inflamed in that area.
I am also having pain at 3 of the port sights where during the hysterectomy instruments were used, and I am being told by the OBGYN they believe this pain and swelling is because I have endo in the scar tissue, and the only fix is surgery to remove the scar tissue at the sites, and there is no guarantee that I will not have more endo in the new incisions?
I now have to track the pain, so I know when the cycle is, and account for a soft food diet, easily digestible when it comes, as to minimize the pain. And as for the incision pain, I have been told to try PT for abdominal stretching, and pelvic floor exercises before scheduling more surgery. NEVER ENDS. I have not been able to find any info. on endo on the duodenum? Thanks.
I want to send a special Thank You out to Jenny12 for being brave enough to share her personal story, struggle, and journey with us today. I’ll be doing some research for Endo no the duodenum and keep you posted! And we’re all hoping you’re able to find further answers and relief!
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.
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!
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.
I deserve an Oscar, an Emmy, shoot I’ll take a Tony. Every last one of us who fake it. No not sex but like we deserve a kindness award for not breaking balls when it comes to that. But fake being fine. Fake that smile of “I’m fine” when in reality we are not. Hollywood has nothing on us!!
I was diagnosed with this unwanted guest at 13. My father died a year before from cancer. Before I was diagnosed I was in and out of the hospital. My mother was told numerous times that my pain was in my head. I was lucky though my mother had suffered the same pain prior to having me. She fought for me! She didn’t care how many doctors said it was nothing she knew it was real. I on the other hand began to think I was crazy. I mean they are doctors they know stuff. I was 13 what else was I suppose to think. My first surgery was at 14. I was on my period and in pain but they did the procedure. They found the pot of gold or pot of never ending poop, depends on who you ask.
Even after being diagnosed I was informed that I didn’t look or act sick. When I heard this I always wondered what does Endo sick look like? My Dad worked with last stage cancer. We didn’t find out until it had spread everywhere almost. He didn’t “act” sick. But I was told if I wanted doctors to believe me I had to look the part.
I had one issue: how do you look like you want to rip your own insides out. I did end up acting though I began to act “fine” I thought if I could pretend hard enough the pain would stop. Or at least everyone but my mother would stop looking at me like I was a drama queen when I said I hurt. I was put on birth control at 14. It gave me menopause symptoms. Night sweats, heat flashes, you name it I had it. So they changed my meds to the birth control shot. And boom no more periods. But now I was depressed and scared because I was still in pain. So they gave me two types of antidepressants. Which gave me suicidal thoughts and ended up with me being locked up for about two weeks in a mental ward. So in roughly two years I lost my dad, I lost my mind, and I lost myself. I began letting Endo control me.
At 15 I had my second surgery because I was still having pain. The doctor informed me and my mother that the Endo had spread “everywhere”?!? I was not sure what that meant. He showed us photos pointing out red dots and saying that it was endometriosis. My pain was cause by a dot was all I could think. He informed us that there was nothing he could do. He put me back on the shot. He did mention the pregnancy might help with the pain. Yep he told a 15 year old girl that having a baby might help. Needless to say my mom was quite pissed. He smoothed it over by informing her that I most likely would never be able to have kids.
I was sitting right there.
He said it so casual, I cried when I got home my mom reassured me that 1.That the doctor was an ass. 2. Nothing is written in stone. I, in return, pretended to be fine.
Endometriosis had just shoved me in the locker and dared me to tell someone. By sixteen I was mentally drained I had two laps, many different meds I put on antidepressants and topamax. And I started dating. I wanted to be normal and I was for the most part. At 16 I honed faking it. I became a flake because I didn’t want to tell anyone I was in to much pain to go out. I sucked it up and pretended if my boyfriend so me in pain I played it off. Because “No guy wants a sick girl” yep someone told teen me that. I felt so small I didn’t want to be sick. I wanted to be okay, I wanted to do what my friends did and not pop ibuprofen like candy to attempt to get through a day.
But I wasn’t okay but again I pretended. Endo was pushing me around and I was letting it. I stayed on the shot for seven years. After getting off I didn’t have my a period til two years after I stopped the shot. Then bang the pain increased. So they gave me the ring. I was 23 Great I thought I just have to keep one up there at all times.
I got married at 23 and moved cross country my husband is in the military. Still pretending I was fine. I stopped telling doctors I was in pain. One told me I had to have a period to clean myself out. (Yea, sounds real stupid right?) So I believed him I did it and by the third month I couldn’t get out of bed. I was alone in Washington State I knew nobody. My husband was on deployment. I was in so much pain I had to crawl to the bathroom I couldn’t make it to the kitchen at all .I was pretty sure I was dying or an alien was gonna jump from my stomach. By day four of only eating crackers that I had in my room and drinking water from the faucet in the tub because I couldn’t stand at the bathroom sink. The alien jumping out of my stomach started to sound good. I was terrified but I never said a word not to my husband in emails. Not to my mom in phone calls not even to my friends in phone calls. I would tell them I didn’t feel “well”. I acted as if the pain hadn’t changed.
When I did inform a female doctor of the horror I had gone through, she assured me it was normal sometimes females have”bad” periods. I tried to explain but swallowed my voice maybe I was overreacting. Endo had taken my voice again. Maybe it wasn’t “that bad”.
Looking back I could slap me! It was bad; it hurt inside and out. But I remained silent.
I got a new doctor who told after I explained to him my pain that I only needed to have a period to have a kid. And since I wasn’t trying to at 24. I could keep the ring in. So I did and life went on and so did I. I worked and cried in the bathroom when the pain got bad. I pushed through I had to I wasn’t gonna be weak.
Who wants a sick wife, friend, co-worker, employee. Nobody.
So I still let the pain bully me into silence. At 30 me and my husband decided to try for a baby. I removed my ring. And all hell broke loose! From period anxiety to bleeding bellybuttons. My symptoms are worse. And it’s scary doctors still don’t listen.
But I’m not going to be quiet anymore.
I lapse into faking it from time to time. But in all honesty I’m tired of being in pain. I’m tired of remaining silent because people might look at me strange. The hell with them!
I spent the majority of this illness blaming me. Hiding scared and alone. Not because I was actually alone but because I was ashamed of being in pain. Ashamed of being scared and looked at as weak or not good enough. Or seen as over dramatic. I will be damned if my nieces or God willing my daughter goes through what I went through. Nope!!!
Somebody is going to listen to me.
Words of Advice:
Don’t remain silent! Don’t let anyone make you feel crazy or less than because your in pain. You are more than your pain if you wanna cry. Then cry, scream , yell. Just don’t let the bully win.
If you would like to reach out to BMW, you can email her directly.
I want to send a special Thank You out to BMW for being brave enough to share her personal story, struggle, and strength with us today. We are so glad you will no longer remain silent!!!
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.