An Update: Endometriosis in Cynomolgus Monkeys

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Last year I wrote about a study involving Endometriosis being found in Cynomolgus monkeys.  Recently, a new study was published in Human Reproduction about those monkeys and Endometriosis, and here I am to regurgitate it to you in my layman understanding.

At the Tsukuba Primate Research Center in Japan, 614 female cynomolgus monkeys were evaluated between 2008 and 2012.  Of those, 29 were chosen to be screened on a routine basis, including monitoring menstrual cycles, fertility, bloodwork (including CA-125 levels), and physical examinations.  Surgeries were performed and 15 of the 29 monkeys had surgically confirmed cases of Endometriosis.

Let me repeat that:  fifteen of the 29 monkeys had surgically confirmed cases of Endometriosis.  These monkeys were not implanted with Endometriosis as lab rats often are.  It grew on its own.

These 15 monkeys ranged in age from 8 years old to 20 years old.  They discovered that CA-125 levels tended to be elevated in the monkeys that had chocolate cysts present and lower in those who did not have endometriomas.  They also discovered that painful palpation examinations and abnormal feces were both commonalities with these monkeys.  Also of note, the monkeys ate less food during their menstrual cycles, which may be attributed to increased pain and a decreased quality of life.

During the time of the study, the remaining monkeys who did not have Endometriosis were monitored to make sure they did not develop the illness.  Four of them DID develop Endometriosis!

Even though the monkeys were small in comparison to humans, the surgeons were able to easily identify Endometriosis lesions (and their various colors: red, pink, brown,  blue, black or white), endometriomas (chocolate cysts), and adhesions while performing the laparoscopies.

Based on these findings, the authors suggest that screening, diagnosing, and monitoring Endometriosis in monkeys should include palpations, fecal monitoring, and CA-125 testing.

The findings of the study were that cynomolgus monkeys with spontaneous endometriosis may prove to be a good model to evaluate the disease, as well as drug efficacy.  I would hate to think that that means they may one day end up as lab rats for drug companies.  My animal-lovin’ brain takes me down that dark path, though.

I am constantly amazed by the presence of Endometriosis in non-humans.  And saddened at the thought that these animals cannot vocalize the pain I know they feel.  But knowing that the illness affects other species makes me hope that it may one day get the attention of the scientific and medical communities that it deserves.

RESOURCES:

Human Reproduction –  (April 2018) – Spontaneous Endometriosis in Cynomolgus Monkeys as a Clinically Relevant Experiment Model

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

 

 

Heating Pads & Endometriosis

heatingpads

Recently, someone brought it to my attention that they’d heard that heating pads are bad for Endo. Now…I live with my heating pad literally attached to my body almost every first few days of my period.  So, I was taken aback by the suggestion as I find the heat soothing.  And I vowed to do some research on the theory that heat is bad for Endo…and, as usual, formulate my own opinion and share it with you.

Endometriosis News ran an article in August of 2017 highlighting the opinions of Melissa of EndoEmpowered and Aubree Deimler of Peace with Endo, and both discussed how heat may cause fascia to manipulate (or soften) and harden after it cools down once the heat is removed.  Aubree tried the heat elimination process to see how she felt, and felt a difference with her pain.  If you’d like to try, please follow her example.  Melissa interviewed Chris Toal of Azolla Health, who shared a downloadable brochure on the theories behind heat and fascia. Not only does Toal discourage the use of heating pads, but also the use of hot showers or baths.  Aubree directly linked back to Melissa’s article and interview.

What is fascia?  It’s a thin, fibrous tissue made up mostly of collagen that covers and supports tissue, such as muscles or organs.

From what I gather, the underlying theory expressed in the views of Endometriosis News, Melissa, and Aubree of why heat is bad for Endometriosis pain is that the heat, for lack of a better term, softens or melts the fascia tissue.  Once the heating pad is removed, the fascia rehardens and can make the pain worse.  This may cause adhesions to shift, form, and harden.  Aubree cites to Ida Rolf‘s theory regarding fascia and displacement with energy/heat/manipulation.

Visualize a brand new, unlit candle.  Once lit, the wax begins to melt.  Blow out the flame and the wax cools and rehardens, oftentimes in a new shape.  Or think of making gelatin: the mixture is liquid while hot and solidifies once it’s in the fridge and cooled off.

The fascia-altering theory is the only argument I have been able to find against using heating pads if you have Endometriosis…so:

Let’s find some proof to all of this…because, like I said, sometimes I live on my heating pad.

Ida’s theory that fascia tissue degrades with manipulation or energy is frowned upon by some.  It’s called the thixotropic effect, where the tissues degrade with heat or pressure, then reform upon settling.  Paul Ingraham wrote about his opinions in Feb. of 2013 and again Jan. of 2018 on thixotropic effect on PainScience.com and opines that fascia is simply “too tough” to manipulate in such a manner and states that Ms. Rolf found her theory to be “nonsense” as well.  Mr. Ingraham cited many studies and professionals to support his opinions.  You’re welcome to read both pieces (linked above and in the Resources section below).

But what if it’s not nonsense?  According to the Science of Slow Cooking (mmmmm…crock pot food…), collagen begins to break down and liquify into a gelatin at 160 degrees Fahrenheit.  Now, I’m no expert on the human body versus a meat-animal, but…how hot do heating pads get?!?

A study published in Safety Brief in 2015 ran a few experiments on heating pad created by Kaz (Model HP-110).  After running the heating pad for 120 minutes, it never exceeded 151 degrees Fahrenheit, uncovered.

Sunbeam offers a FAQ on their webpage about the temperature range of their heating pads: the low setting 110 degrees F and the high setting can get up to 160 degrees F.

Sew4Home conducted their own little science experiment with homemade microwaveable heating pads.  They compared rice, corn, and flaxseed.  After 30 seconds of heating, the rice was 140 degrees Fahrenheit, the corn was 158 degrees, and the flaxseed was 144 degrees.  Five minutes later, each had cooled:  136 (rice), 142 (corn), and 142 (flaxseed).

Hot water bottles should never be filled with boiling water (water typically boils at 212 degrees Fahrenheit), due to leakage and safety concerns.  Many manufacturers of hot water bottles suggest a nice, easy-to-touch temperature; not scalding.

So, I’m not sure that heating pads (electrical, microwaveable, or hot water bottles) will get hot enough to do any liquifying damage to facia.  But, then again, I’m no expert.  And several webpages promote the use of heating pads (sometimes combined with castor oil packs) to help with adhesion, Endometriosis, pelvic, or lower back pain.

So, then I was curious: why do heating pads make my pain feel better?  Once more, I hit the internet.  And, once more, ran into a lot of Mr. Paul Ingraham’s writings and voluminous cited resources, along with other webpages.

Heat may be very soothing, it increases blood circulation to the area, it may relax tense muscles, and a 2006 study found that internal heat receptors may actually block pain signals.  So, once more, heat may be good for dealing with certain types of pain.

Again, I’m not a scientist and this is just my opinion after bouncing around the internet for several hours doing research and reading.  My conclusion?

My heating pads make me feel better…and I will not stop using them.  Am I knocking Endometriosis News, Melissa, Aubree, or Chris? Nope.  Everyone is entitled to their opinion and I value a broad perspective on things.  But, for me?  I also value the comfort that a good ol’ heating pad delivers.

What about you?  My advice? Do whatever makes you feel better.  Hot, cold, or neither.  It’s your body and you know it better than anyone.

Resources:

Earth Clinic (Dec. 2017): Natural Remedies for Abdominal Adhesions

EndoEmpowered (Nov. 2016): Stop Using Hot Water Bottles for Endo Pain

Endometriosis News (August 2017): Should You Use Heat for Endometriosis Pain Relief?

Functional Fascia: Fascia Facts

Healthline: Treating Pain with Heat and Cold

LiveScience: (July 2006) Study: How Heating Pads Relieve Internal Pain

Merriam-Webster Dictionary: definition of fascia

My Health Alberta Ca Network: Adhesions Care Instructions

PainScience.com (Jan. 2018): Does Fascia Matter?

PainScience.com (Aug. 2016): Heat for Pain.  When and how to apply heat for therapy…and when not to!

PainScience.com (April 2017): The Great Ice vs. Heat Confusion Debacle

PainScience.com (Feb. 2013): Thixotropy is Nifty, but It’s Not Therapy

Peace with Endo: (Jan. 2017) Why I Stopped Using My Heating Pad for Endometriosis Pain

Safety Brief: (Jan. 2015) On the Safety of Heating Pads

Science of Slow Cooking: The Science of Slow Cooking

Sew4Home (Sept. 2014): Organic Fillers for Warming Pads: We Compare Rice, Corn and Flaxseed

Sunbeam: FAQ – How Hot do the Heating Pads Get?

Taber’s Medical Dictionary: definition of fascia

The Hot Water Bottle Shop: FAQS

University of Illinois at Urbana-ChampaignDepartment of Physics: Q&A Water Temperatures

 

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

 

An Interview with a Silent Warrior.

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I know a few EndoSisters who have chosen to keep their diagnosis private for one reason or another.  During a month where many are shouting about Endometriosis to raise awareness, I wanted to remember the ones who choose to remain silent. And respect that choice.

I had the pleasure of interviewing an EndoSister who keeps her diagnosis a secret.  Not only to understand her choice and position better but to also give her a voice.  A forum to speak her peace, share in a way that doesn’t corrupt her privacy, and encourage those who also endure in silence.

I would introduce you to her, but she shall remain Nameless.  She shall remain Faceless.  Just know that she may be your friend, daughter, co-worker, or wife.

**

How old were you when you began to feel Endometriosis symptoms?
I think my symptoms started when I started my period at twelve. My periods have always been extremely painful. And I have always been scrunched up in a ball in tears.

Did you ever tell anyone then that you were having these issues?
Yes

How was that received?
I either got laughed at or told to be quiet. (That’s being exceptionally nice)

When were you diagnosed with Endometriosis?
Two years ago this past February

How did your diagnosis come about?
Doctors found a large cyst on my left ovary from an MRI then confirmed with two follow up ultrasounds.I had surgery to get it removed. The cyst was a chocolate cyst.  When my doctor came to talk to me after I woke up from surgery, she told me I had Endometriosis.  She also said that she had never seen so much endometriosis in someone and that it was everywhere.

How did you feel when you learned you had Endometriosis?
Not surprised, and a little relieved. It made sense why I have been in so much pain. The past few years the days without pain were less than the days with pain. After so long I just got used to being in pain all the time. Continual pain is normal.

But it was a huge weight lifted off of me knowing that I am not some weak ass pansy who can’t handle shit.  (Refer to the question three about how my pain was received).

Are you ashamed? Embarrassed? Angry? Confused? All the things? Which and why?Ashamed, no. Embarrassed, no. Angry, yes. Confused, no. Sad, yes. Frustrated, yes. Alone, sometimes. And so many more emotions. Some days are better than others. And some days I want to crawl into a dark cave and just cry and cry and scream (these days are few and far between).

Have you told your friends, family, or co-workers about your diagnosis?
Only my EndoSisters here know as well as 4 close friends. Two coworkers know I had abdominal surgery and one of them knows it was to remove a cyst, but neither of the coworkers know my Endo diagnosis. My family and other friends do not know.

If not, why have you decided not to tell people?
I have not told my family or my friends for one reason I still don’t feel comfortable even saying here. I also haven’t told my family because of my response to question number 3. I have not told three of my close friends because: 1) I know 2 of them can’t keep a secret. 2) the one that can keep a secret, has never been supportive of me when I talk about my pain and how much I hate it. She’s not outright mean, just dismissive about it. She also would not agree/support the reason I am not saying here.

How were you able to find EndoSisters? And how did it feel being able to connect and share with them?
I have a friend with Endometriosis and she directed me to Bloomin’ Uterus. To say it was difficult to open up to my friend does not even begin to describe what I was feeling and going through. (As a matter of fact, answering these questions is taking me hours and a whole lot of fucking tears to get through).

I had two friends offer to help take care of me when I told them about my surgery. One ended up with the flu the day before my surgery, so only one was able to help take me to and from the hospital and then spend two days with me (including my surgery day). I took 1 day short of two weeks off work, so I took care of myself the rest of the time. I contacted my friend with endometriosis two days after my surgery (through Messenger while pretty high on pain medication). I was in tears, frustrated and feeling completely lost and alone. I don’t think she will ever truly know how much she helped me that day and the extraordinary supportive woman she has been since. I would not be where I am today without her warrior-ness.

I have been able to connect with other ladies in the support group and they have been so incredible and encouraging. I get to talk to some ladies on a daily if not weekly basis. They make my days so much brighter.

I see what so many other ladies talk about in our support group and it kills me that they are going through this same shit. But everyone provides such support and love and understanding. These ladies are the best.

Sometimes when I do feel alone, I just go to our support group and read. And sometimes it helps a little and sometimes it’s like getting the huge bear hug I need. Even a heart or a like to a comment I make.

How has the silence affected you?
It sucks balls. Sometimes. But most of the time, I know it’s the right choice and I am comforted in this decision.

Do you think you’ll ever tell others about your illness?
No. A significant other maybe. But I find that terrifying. And yeah, yeah my boyfriend, husband or spouse should support me blah, blah… The thing is… You don’t know. You don’t really truly know until you have been put in this situation.

How do you think your announcement will be received?
One, I’ll be looked at with pity. And I fucking hate that shit. Two, everyone I haven’t told will be hurt that I kept something from them and they probably won’t trust me in the future. And they will probably think that I’m hiding things from them. Three, I will be told that it’s my fault that I brought it on myself for hating my periods and if I just accepted the pain I had from the beginning this would have never happened… Power of attraction… blah, blah…

Is the reaction of others learning so long after your diagnosis part of the reason for your silence?
Nope. Once I found out, I never planned on telling. (Even my friend I opened up to in the first place.)

What would you tell other women who have decided to keep their diagnosis a secret?
You’re not alone. You’re just not. Whatever reason/s you have for keeping silent is/are the right reason/s. You don’t need to justify yourself. Not to yourself. Not to anyone else. I don’t care if it’s your family, spouse, your best friend, your boss, who the fuck ever. YOU DO NOT HAVE TO TELL ANYONE IF YOU DON’T WANT TO.

How can your EndoSisters help you?
Just keep doing what you’re doing ladies. You are amazing and have helped me more than you can possibly know.

Is there anything else you’d like to share?
Nope.

**

What a beautiful and eye-opening experience for me.  I’ve always been an over-sharer and cannot imagine enduring this illness in silence.  But I love and honor my EndoSisters for their decisions to remain quiet.  Whatever those reasons may be.  If you have chosen to keep silent, stand by that decision.

Never let us guilt you or judge you into divulging your secret.

And know, like she said, you are not alone:  “You do not have to tell anyone if you don’t want to.”

To all those who endure and suffer in silence, you have my respect and love. Consider yourself gently hugged from afar.

And, to the Warrior who allowed me to interview her, I cannot thank you enough.  You are so incredibly strong and brave and have been an incredible presence in my life, and the lives of other EndoSisters.

 

Endo Awareness Month: Giveaway!

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You may have read my recent review of Chiavare lube.  Well, Kaylyn is providing me with 5ml bottle of Chiavare Personal Moisturizer to give away to one lucky Reader on April 1st!  I’ll toss in a few Bloomin’ Uterus buttons and bracelets, too.  It’s our fun way of giving back and celebrating Endometriosis Awareness Month!

How does it work?

Simply submit your answer below.  Your contact information will be kept confidential and shared with no one and I’ll contact the winner directly for their mailing address.  I will post your answers (anonymously, if you so choose) on the blog, Facebook, Pinterest, and Instagram, along with the hashtags #endometriosis #chiavare and #bloominuterus.  On April 1st, I’ll have the computer randomly select a winner!

This is open to those who have Endometriosis…and those who have loved ones or friends with Endometriosis.  Really…what WOULD you do?

Want to play?

 

 

A fun way to spread awareness, get your voice heard, and win a few fun gifts!  And if you would like to see all of the submissions we’ve received, click here.

A New Lube! Bring on the Sex!!!

Chiavare 5ml

I’ve learned a fun “side effect” of blogging is sometimes people write you and offer to send you stuff if you’ll write a review. WHAT?!?  Well, it happens.  And I agree with it as long as the person or company understands that my review will be unbiased, and it may be negative.  I’m gonna be honest!

Why am I telling you this? Because it’s happened again…and this time…with luuuuuube! Yes!!!  And not just any lube…an all-natural lube created by a woman who HAS Endometriosis.  Which, of course, makes me super duper happy to support our not-so-little Endo Community.   And it’s called Chiavare Personal Moisturizer.

Anyway, on with the review!  (Mom…I know you’re reading this; you may want to turn away now or risk blushing!)

Back in early January, I received an email from Kaylyn Easton, who also has Stage IV Endometriosis.  She was hoping to tackle the stigmas of female health and sexual activity and bring something positive and beneficial to our lives.  And she has created an all-natural, chemical free, vegan, gluten-free, non-GMO, hypoallergenic, and edible (if that’s your thing) “personal moisturizer.”

I’m just gonna keep calling it a lube, but when you read the ingredients, you’ll come to understand why many customers also use it in other ways.

Okay, I’ll stop teasing and tell you what’s in it.  You ready?

  1. Coconut Oil,
  2. Almond Oil,
  3. Vitamin E,
  4. Grapeseed Oil,
  5. Sunflower Seed Oil; and,
  6. Evening Primrose Oil.IMG_2015.JPG

And…that’s it.  I’m no doctor, but I’m not sure people with a nut allergy should use this.  If you’re curious, you may want to email the company and ask…

I like to think of myself as a connoisseur of sexual lubricants.  I’ve tried soooo many different ones and had yet to find one that myself and my partner both liked.  “This one’s too sticky, this one’s stinky, this one wears off quickly, this one burns, this one gets chunky” – a whole gambit of negativity.

So, I had my doubts about Chiavare just because I hadn’t been able to find a favorite lube before…and I still had yet to tell my husband any of this.  So, the day it arrived, I tore open the package, rubbed a little on my finger and smooshed it around.  Initial thoughts: It’s smooth, odorless, wasn’t sticky, and it tasted good.  Chiavare came in this beautiful, discreet little 5ml black bottle, so, I plopped it on my nightstand corner to well…corner…my unsuspecting husband later that evening.

But, alas, he wasn’t feeling well.

So, I wrote Ms. Easton and asked if it would be safe with toys.  Her response? Basically, avoid latex condoms or toys.  Oil-based anything will likely destroy any latex-based products, but luckily for me, I have a latex allergy and my favorite toy is silicon.  Which led me to another question: can I use it with non-latex condoms?  Yep.  If you’re like me, this lube is safe with a non-latex condom.   The hubby and I aren’t trying to make babies, so we still wrap up every time.

So, the next day I gave it a go solo.  Again, I had my doubts.  I few pumps of the clear lube onto the head of my toy, smooshed it around with a bit of flair, and (well, you don’t need to know the rest).  Do know, however, that it was wonderful.  Slick, smooth, warmed up quickly to my body temperature, never got sticky or glumpy.  It was a wonderful experience.  As usual, though, wash all your toys afterward!  Ew…

It was a few weeks later before my husband and I were able to give the lube a human-to-human test.  He had no idea it was coming.  And the second I warmed a bit of lube in my hand and applied to…well, he and his Jimmy Hat, he instantly commented, “Ooooh, that’s a really good lube!” Again, sparing you the details of the act itself, I wasn’t disappointed.  And neither was he!  As we lay in bed aftward, he again commented on how much he liked the lube.  I explained it was new, where it came from, and what it was made of.  He’s never liked or commented positively on any of our prior lubes.  And this one he couldn’t say enough about how much he enjoyed it.

About a week later, the opportunity presented itself once more. Hubba hubba!  This time, though, instead of going in straight for the Deed itself, I wanted to treat him to a bit of a hand job (for lack of a better term? No offense intended to anyone).  Again, he loved the lube, but the only issue I had with it was during the hand job the lube soaked into his…uh…um….(you know)…so I had to reapply it a few times.  But once we moved on to the Horizontal Mambo, smooth as silk and never dried up.

Pairing this lube along with a few sexual positions that lessen the pain with penetration, sex is once more an enjoyable endeavor for me.  And for us.  And I cannot express how incredible that is.  My old lubes are now in the trash…nasty glompy chemical sticky things.

Despite the fact that my husband’s flesh devours the lube during a hand job, the lube is fantastic!  And I LOVE the fact that it’s all natural! We have enough going on with chemical exposure in our lives and if we can reduce it just by one little thing, it’s may help.

If you’re interested in checking out Chiavare for yourself, click here!  She’s got several links about the ingredients, testimonials, different uses, and her history.  The small bottle (the one I have) is about $10.  There’s a bigger bottle, but the wee-one has lasted us nearly 2 months, and we’re not even close to empty.

Chiavare

I’m so grateful to Kaylyn for reaching out to me and sending me the freebie bottle.  Not only did I learn about an amazing product, but I get to support an EndoSister’s endeavors, and hope to spread the word to help others who may be looking for a good lubricant.  And I’ll be more them in the future!

I’m hooked.  My hubby’s hooked.  We’re hooked!  Thank you, Kaylyn, for making such a wonderful product!  I hope that your Endometriosis Journey continues along a positive path.

PS – these beautiful pictures were provided by Kaylyn at my request.

 

Endometriosis Awareness Month Begins!

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One in ten women have Endometriosis…and it’s estimated 170,000,000 women worldwide have it. For many of us, it’s taken 8-10+ years to get a diagnosis – it personally took me 22 years before my pain had a name. Why does it take so long?
 
Well, the symptoms have been written off as normal. It’s all just “part of being a woman.” Many physicians don’t understand the signs and symptoms of the illness. Many women aren’t taken seriously when we describe our pain. There is no simple test for Endometriosis. Imaging studies may not catch it. Blood tests may not be abnormal. The only tried and true way to diagnose Endometriosis is with surgery and biopsy of the tissue.
 
The invasive growths that Endometriosis causes inside our bodies are like nasty little spores. They attach, fester, and grow wherever they wish: the pelvic cavity, on top of organs, the bowel, the uterus, the urethra, the liver, the appendix, the diaphragm, and in rare cases: the lungs, the spine, the brain, skin, the eyes, the heart, the lungs. They feed off of our hormones and react like the lining of the uterus: they swell, they inflame, they cramp, they shed. They cause excruciating pain and the scar tissue caused by this illness may pull our organs out of place, weaving them to other organs or our abdominal wall.
 
And to make things even more difficult, there is no cure. There are treatments: pharmaceuticals, supplements, diet and lifestyle changes, Eastern medicine, and surgery. But many physicians aren’t skilled in performing surgery to effectively remove the disease lesions from the body. Many don’t even practice the “gold standard” of excising the disease, but rather they burn it away…leading to recurrence and increased internal scarring.
 
Even with proper excision, recurrence and regrowth of the disease may occur. The only thing we can do? Be there to support one another and research and support organizations that may one day find easier treatments and (hopefully) a cure.
 
Some of us only suffer while on our periods. But some of us suffer all of the time. A hysterectomy may help relieve some discomfort, but it may not. Menopause may help, but it may not. I know plenty of women post-hysterectomy or who are beyond the Change of Life who are still suffering from Endometriosis symptoms.
 
One day there will be a cure. And in the meantime, all we can do is be there for one another. I love you, my EndoSisters. And to those of you who support us, you have my gratitude and affection. ❤
 
If you would like to learn more about this craptastic illness, please follow this link. It’s where I’ve put all of my research in one place…and there are links within the blog that will bring you to greater details on the subject. https://bloominuterus.com/what-is-endo/
 
If you know someone with Endometriosis, give them a gentle hug today.

Have you Seen the Endometriosis Commercials on TV?

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Screenshot of SpeakEndo.com; 1/30/18

I don’t have TV, but I’ve had a lot of friends and loved ones excitedly tell me that they saw a commercial about Endometriosis recently! I think that’s awesome! A wonderful way to spread awareness to so many people!

Like one friend said, it took me 20 years for a diagnosis – maybe it wouldn’t have taken so long if I had seen a commercial similar to this one. If it can help just one woman begin to search for answers, it’s awesome.

So, I checked out their webpage, SpeakEndo.com and watched the recent TV ad. If you haven’t seen it, you can watch it here. I thought it was wonderful for encouraging women to be open and honest about their pain symptoms. Periods aren’t embarrassing – just tell your doctor so they can make sure everything is okay. They won’t know something is wrong if you don’t speak up! Embrace that personal power and self-advocacy!!

SpeakEndo also creates a community for women to share stories, bond, and learn together. It also provides resources on how to prepare for an appointment with a physician to discuss Endometriosis. And it gets better: for every person who signs up on SpeakEndo, a donation is made to the Endometriosis Foundation of America; although it doesn’t state what that donation amount is.

Then I did some digging. And please understand: this is an expression of my opinion. I developed it based on gut feelings and what little internet information I could find. Purely my opinion. Please feel free to do your own research, digging, and thinking:

AbbVie’s name hovered over the commercial toward the end after they released the webpage information. “Who’s Abbvie”, you ask? A pharmaceutical company. Not just any pharmaceutical company, but the one who manufactures and markets Lupron Depot, a GnRH agonist used aggressively by physicians to treat the symptoms of Endometriosis. I was on Lupron Depot for six months (you can read my experience here) and many other women have suffered from long-term effects of the drug (you can read about their lives after Lupron here). It’s not a drug I will ever take again. I feel like the harsher physical and mental side effects of the drug were not verbally disclosed to me, and it was literally the hardest regimen I’ve ever endured. It’s so much more than “chemical menopause.” If you’re interested in reading up on some of the other side effects that weren’t verbally discussed with me (literally, I was told it was “just like entering menopause”), check out the FDA’s product packet insert here (Pages 10-12 discuss adverse reactions).

AbbVie is also currently working on a new GnRH antagonist called Elagolix to treat Endometriosis and fibroids. It would be in pill form instead of an injection like Lupron. The most common-reported side effects during the clinical trials were hot flash/hot flush, nausea, and headaches. I haven’t been able to find the lesser-reported side effects. But having been on a GnRH agonist for six months and enduring a wide gambit of effects including hot flash, nausea, and headaches; I will never personally take another. I could only hope that Elagolix’s lesser-reported side effects will be equally disclosed and discussed prior to prescription and administration of the drug to patients.  Reported benefits of long-term Elagolix use have been reductions in fatigue, menstrual cramps, non-menstrual pelvic pain, and painful sex.

Am I going to sign up for SpeakEndo.com? Nope. After scrolling to the bottom, seeing AbbVie is the owner of the site, reading their privacy policy and their terms of service, I’ve no desire to embed myself with a pharmaceutical company.

A large part of me can’t help but think that the push for the FDA priority review, the timing of the Endometriosis commercial and the launch of the SpeakEndo webpage are financially motivated and targeting a niche market:

  • 2013-present: AbbVie conducts clinical studies of Elagolix to treat Endometriosis pain and symptoms;
  • May 2017: SpeakEndo.com domain name secured by AbbVie
  • Sept. 2017: AbbVie seeks FDA review and approval of Elagolix;
  • Oct. 2017: FDA approves a priority review of Elagolix;
  • Jan. 2018: SpeakEndo commercials hit TV screens;
  • Spring/Summer 2018: anticipated FDA approval date for Elagolix;
  • SpeakEndo is owned by AbbVie, Inc.;
  • AbbVie manufactures and distributes Lupron Depot;
  • AbbVie has conducted several studies regarding Elagolix and is pushing for FDA approval.

AbbVie received FDA approval for a priority review of Elagolix, shortening the usual 10-48 month approval process to an expedited 6-month approval process…meaning Elagolix could be approved as early as mid-2018. An article published on January 29, 2018, stated that AbbVie shares were “up over 100 percent over the past year” and a September 25, 2017, article stated that Elagolix was “expected to have an annual cost of therapy over $7,000” in the United States alone.

In the past, the FDA has approved prescription medications on a priority review basis, only later to be withdrawn from the consumer market. Priority review is granted for drugs that “would be significant improvements in the safety or effectiveness of the treatment, diagnosis, or prevention of serious conditions” and drastically shortens the time of approval to push the drug to the consumer market. Following is a list of examples of a few drugs that were approved on a priority basis, only to be withdrawn:

  1. After a 9-month review, Accutane was approved by the FDA on May 7, 1982, to treat acne. Ads were placed in magazines and on TV. During the first six months of its release, physicians had written 200,000 Accutane prescriptions. As time and technology progressed, Hoffman-La Roche (the manufacturer) secured the domain names FaceFacts.com (focused on acne with teenagers) and derm-infonet.com (acne with adults), which have been described as webpages that were non-branded information sites that provided “medical information on the subject of acne and acne treatments.” In 2000, Hoffman-La Roche had raised over $7.5 million from Accutane sales alone. In 2001, the FDA Consumer Magazine said Accutane was “the biggest breakthrough in acne drug treatment over the last 20 years.” Then, in 2009 the manufacturer withdrew it due to an “increased risk of birth defects, miscarriages, and premature births when used by pregnant women; inflammatory bowel disease; suicidal tendencies.” There were years of regulation reviews and hearings, as well as over 7,000 lawsuits filed by consumers.
  2. Abbott Laboratories created Cylert to treat ADHD/ADD targeted mostly at children and teenagers. It was approved under a priority review in 1975. Cylert was advertised in medical journals, such as the American Journal of Psychiatry, touting it’s “once a day convenience” instead of a need for multiple doses.  By December 1998, the FDA reported there had been 12 confirmed cases of liver transplants and/or death caused by the drug. In 2005, a consumer group raised concerns about the safety of Cylert which was followed by Abbott discontinuing its production (supposedly due to a lack of demand and not influenced by the consumer complaints). The FDA officially withdrew its approval as Cylert was proven to cause liver toxicity and the risks involved far outweighed the benefits of the drug.
  3. A few Irritable Bowel Syndrome drugs have been approved by the priority review process.  In February of 2000, Lotronex was approved for the treatment of Irritable Bowel Syndrome in women. Soon after it was available to the public, the FDA began receiving adverse reaction reports, including constipation and ischemic colitis. In some instances, patients required surgery due to bowel complications…or worse…died; there were reports of 45 surgeries and four deaths. Less than ten months after it’s priority review approval, Glaxo Wellcome withdrew Lotronex from the market. However, since it was considered the only drug available to help some people with their IBS symptoms, it was re-approved in 2002 and was placed back on the market with severe restrictions. In July 2002, Zelnorm was manufactured by Novartis for IBS treatment.  It was aggressively promoted with TV and magazine ads. With the launch of Novartis’ “Tummies” TV commercials, they received 390,000 new patient prescriptions, claiming their ads “empowered thousands of women to talk about IBS” to their doctors. It increased their prescription sales by 90%. However, due to an increased risk of heart attack, stroke, and chest pain, it was pulled from the market in 2007. Zelnorm sales profited Novartis an estimated $560 million.
  4. After seeking priority review, Pfizer received FDA approval in 1997 of Rezulin. It was marketed as an antidiabetic and an anti-inflammatory medication. Due to reports of liver failure and 63 confirmed deaths, the drug was removed from the market in 2000. It had earned Pfizer over $2 billion in sales.
  5. In 1999, the FDA approved Merck’s drug, Vioxx, after a six-month priority review period as a drug to aid with pain, menstrual cramps, and osteoarthritis that was supposedly safer than Advil or Aleve. Magazine and TV ads featured athletes Dorothy Hamill and Bruce Jenner. They both made appearances on the Larry King Show to talk about Vioxx, clarifying that they were both paid by Merck. It’s estimated that Vioxx was prescribed to more than 20 million people. However, it was withdrawn from the worldwide market in 2004 after it was found to increase the risk of heart attacks. It’s estimated that nearly 28,000 people suffered heart attacks and/or death due to Vioxx. Merck profited $11 billion during Vioxx’s four-year sale period.

However, on April 10, 2018, AbbVie announced that the FDA requires an extended review of Elagolix before it’s approved for the public market.  What are they reviewing that hasn’t already been discussed: data regarding liver function test results from the clinical trials needs to be thoroughly reviewed by the FDA.  AbbVie fully expects the FDA to approve Elagolix, regardless of this new delay, by the third quarter of 2018, sometime between July and September.

I’ve no faith in the FDA’s “priority review” process. The FDA does not conduct their own studies; rather, it depends on the studies by the manufacturers and third parties attesting to the safety, risks, and efficacy of the drugs they’re pushing.

Through my research, I’ve also learned that many pharmaceutical companies have hosted patient groups, organizations, and websites which offered an avenue of support to those who suffer from various conditions. Advertising watchdogs refer to this tactic as “Condition and Behavioral Targeted Advertising,” using unbranded sites to reach a target audience with a specific condition. It’s been described as “specialized health portals and networks specifically created to target consumers based on particular conditions or concerns” through “the use of online video and websites to raise the awareness of a particular disease or condition…designed as educational sites, where individuals can share their experiences with various treatments.” The phrase that really makes my Spider Senses tingle: “specifically created to target consumers based on particular conditions or concerns.”

Eisai, Inc., a pharmaceutical company that manufactures an anti-epileptic drug, owns www.livingwithepilepsy.com. The domain was secured in 2005, but the webpage is no longer active. In 2009, Eisai, Inc. started the unbranded site www.livingwithLGS.com, another epilepsy site which includes “treatment options, transitioning a child to adult care, videos, and tools and resources for caregivers, including a customizable Doctor Discussion Guide.” The site is still active today.

Likewise, in 2001 www.parkinsonshealth.com was launched. It was owned and run by Teva Neuroscience, a pharmaceutical company that manufactures drugs used in the treatment of (you guessed it…) Parkinson’s Disease. Teva Neuroscience even produced a brochure, claiming Parkinsonshealth.com and Parkinson’s Support Solutions were “a comprehensive support program designed to provide the financial resources, support, and education patients and caregivers need.” And the only place that Teva Neuroscience was referenced in the entire brochure? The small print at the bottom of the very last page…If the consumer wasn’t looking for it, the brochure would have read as a completely unbiased publication without any fiduciary interest. The webpage is no longer up and running.

And this sounds much like what AbbVie appears to be doing with SpeakEndo.

I’d really, truly like to think that AbbVie is only reaching out to those in need, spreading awareness of an often misunderstood and neglected disease. But my brain keeps circling back to the fear of their motivation. I truly hope their intentions in setting up SpeakEndo.com were not to prey on those who suffer and seek relief from the pain of Endometriosis, nor to gain from the seemingly-perfect timing of the projected approval and launch date of their drug Elagolix.

Regardless, I am still so very pleased that someone (even if they are Big Pharma) are out there raising awareness of Endometriosis and bringing sufferers together. I can’t say this enough: I hope their intentions are pure and their motivation is appropriate.

**Updated May 22, 2018**

Resources:

AbbVie – products list

AbbVie – Elagolix product page

AbbVieAbbVie Receives U.S. FDA Priority Review for Investigational Oral Treatment Elagolix for the Management of Endometriosis with Associated Pain

AbbVie – SpeakEndo.com Privacy Policy (How We Use Your Information section)

AbbVie – SpeakEndo.com Terms of Service

Acne.orgHow Advertised is Accutane?

AdAgeBig Pharma Finally Taking Big Steps to Reach Patients with Digital Media

AdAgeInteractive: Media & Marketing: Drug Companies Boost Online Media Buying: Roche will Spend $1 Million-Plus

Andantestudy – Teva Neuroscience’s brochure: Caring for a loved one with Parkinson’s Disease

AttorneyPagesBayer’s Trasylol: What Really Happened?

Azilect.com

BenzingaAbbVie Shares Double In A Year; Leerink Moves to Sidelines

BonkersInstitute – 1996 Cylert advertisement in the American Journal of Psychiatry

Center for Digital DemocracyDrug Marketing Moves to Digital: How Pharmaceutical Companies Pitch Consumers Online

Cision PR NewswireAbbVie and Neurocrine Biosciences Announce PDUFA Target Date of Q3 2018 for Elagolix in Endometriosis-Associated Pain

Clinical TrialsStudy to Evaluate the Long-Term Safety and Efficacy of Elagolix in Subjects with Moderate to Severe Endometriosis-Associated Pain

Community CatalystZelnorm: A Case Study in Why Drug Advertising is a Bad Idea

DePirro/GarroneZelnorm

Drugs.comElagolix Approval Status

Drug Enforcement AdministrationLevamisol (Ergamisol)

DrugwatchCelebrities Team with Big Pharma to Promote Drugs, Disease Awareness

Eisai Eisai Announces Launch of Antiepileptic Drug Fycompa in U.S.

Fierce PharmaMerck – Vioxx

Formulary JournalPemoline Removed from US Market

Harvard Law SchoolBabies, Blemishes and FDA: A History of Accutane Regulation in the United States

Lawyers and SettlementsNovartis Withdrawing Zelnorm: But at What Cost?

Los Angeles TimesThe Rise and Fall of the Killer Drug Rezulin

MedTVIs Lotronex Back on the Market?

New York TimesUS Lets Drug Tied to Deaths Back on the Market

Obstetrics & GynecologyElagolix Reduces Fatigue in Patients with Moderate-to-Severe Endometriosis Pain

Obstetrics & GynecologyLong-Term Safety and Efficacy of Elagolix Treatment in Women with Endometriosis-Associated Pain

Organic ConsumersBayer: A History of Profit from Suffering

ProCon.org35 FDA-Approved Prescription Drugs Later Pulled from the Market

Regulatory Affairs Professionals SocietyFDA Approves Pfizer’s Mylotarg 7 Years After It Was Pulled from the Market

RochePatient Organisations

Seeking AlphaAbbVie Should Obtain FDA Approval for Elagolix

Strataco

Tradmarkia.comFaceFacts.com Trademark Information

US Food & Drug Administration – Cylert pamphlet

US Food & Drug AdministrationDrug Approval Database – Accutane

US Food & Drug AdministrationDrug Approval Database – Cylert

US Food & Drug AdministrationDrug Approval Database – Lotronex

US Food & Drug AdministrationDrug Approval Database – Mylotarg

US Food & Drug AdministrationDrug Approval Database – Permax

US Food & Drug AdministrationDrug Approval Database – Rezulin

US Food & Drug AdministrationDrug Approval Database – Trasylol

US Food & Drug AdministrationDrug Approval Database – Vioxx

US Food & Drug AdministrationDrug Approval Database – Zelnorm

US Food & Drug AdministrationGastrointestinal Drugs Advisory Committee and Drug Safety and Risk Management Subcommittee Background Package

US Food & Drug AdministrationPriority Review

US Food & Drug AdministrationSequence of Events with Vioxx, Since Opening of IND

US Library of MedicineElagolix: A Promising Oral GnRH Antagonist for Endometriosis-Associated Pain

Whois.com – Domain Name Search – Facefacts.com

Whois.com – Domain Name Search – IWalkBecause.org

Whois.com – Domain Name Search – Livingwithepilepsy.com

Whois.com – Domain Name Search – LivingwithLGS.com

Whois.com – Domain Name Search – Parkinsonshealth.com

Whois.com – Domain Name search – SpeakEndo.com

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

Healthline.com Asked Me to Help!

 

Untitled-1 copy
Screenshot from Healthline.com; 1/31/18

 

I’m so excited I’m going to BURST!

Earlier this month Healthline.coms staff asked if I would be interested in writing a few pieces for their site.  I’ve enjoyed the information they’ve had to offer in the past, and have been honored with a few of their blog awards, so I jumped at the chance to help!

They requested two things:

  1.  An Open Letter to their readers about my experience with Endometriosis, and any thoughts I wanted to share; and
  2. Tips & Tricks on handling painful sex that can sometimes accompany Endometriosis.

I jumped at the chance and began writing.

After I submitted the two pieces, I was then advised that Healthline.com would like to compensate me for my work.  Whua?!? You’re going to PAY me to write about Endometriosis and spreading awareness and helping support others?  …Now if you know me, you know I have this little unwritten moral code: if I make any funds dealing with Endometriosis awareness, fundraising, or the blog, I’m donating it straight to the Endometriosis Foundation of America.  I asked if they could just donate the money directly to the EFA for me; however, due to accounting reasons and stuff, they couldn’t.  So as soon as these funds hit my bank account *poof* they’ll be going straight to the EFA.

I will not, nor will I ever, profit from this damn disease.

BUT, I’m SO honored and excited and jazzed and thrilled and … excited! 😀 I wanted to share these two pieces with you.  If either of them resonates with you, please feel free to share with anyone and everyone.

The Open Letter:  Hey Girl, You Don’t Have to Live with Severe Period Pain

Painful Sex:  The Boss Babes’ Guide to Sex with Endometriosis

Thank you, Healthline staff, for this incredible opportunity for outreach and support.

If you read the articles and want to chime in your thoughts, I’d love to hear from you 🙂

The Blogger Recognition Award

blogger-recognition-award-badge

*squee* I love these things. 🙂

A fellow EndoSister and Blogger The Dissociated Press nominated me for this wonderful opportunity to tell you how the Bloomin’ Uterus blog began.

As you know, I have Endometriosis.  I was diagnosed back in June of 2014 with this illness I knew nothing about and could hardly pronounce.  My nurse helped me better understand Endometriosis by describing it as sort of a crabgrass that you cut and it can grow back again and again.

I felt disgusting on the inside.  Hideous.  Infiltrated by some alien.

So, I created the Bloomin’ Uterus and a little mantra to remind myself that I was none of those things:

BU

Then I delved into researching more about the illness.  Why had I not heard of this disease that affects one in 10 women?  What could be done? What caused it?  I obsessed.  And I needed somewhere to write down all of my findings.

I’ve never blogged before in my life.  But I grew up writing in my diaries. So, this was my online diary.  My thoughts and fears and pure opinion.  But that soon progressed into something bigger.

Rather than simply writing about my issues, I wanted to help spread the word about Endometriosis.  I wanted to connect with other women who had it. I wanted THEM to share their stories! AND I wanted to be able to share the books I’d collected and the things I’d learned.  So the blog morphed from an online diary into what it is today.

A place where people can ask me a question, I research the answers, and post my interpretation of what I’ve read.  Am I always right? No.  But that’s the beautiful part about having an illness that has no true black and white answers.

I’ve connected with so many incredible women.  And I’ve learned to embrace my illness; all of it.  Without it, I would never have become the strong woman that I am today.  And I will never stop…

I would like to nominate these fellow bloggers who I find incredibly inspiring in their own ways!   Tell us why you started YOUR blog!!

The Endo The World – Claire ❤ xoxoxo ❤

The Endo Zone – one of my all time favs, Marixsa

Yellow Endo Flower – a wonderful blog started by a woman in Kenya wanting to raise awareness and build a community of Warriors there.