Is there a link between Endometriosis and Endometrial Hyperplasia?

causes

One of my readers recently contacted me asking if I could do some research for her.  Her physicians suspect she may have hyperplasia.  What is that, you may ask?  It’s the changing or enlarging of cells or organs which may develop into cancer.  Specifically, she is undergoing tests to see if she has endometrial hyperplasia.  Now what’s that?  It’s when the uterine lining (the endometrium) is too thick.  Her question?  Is there a link between Endo and hyperplasia?

I found this to be very interesting as I had an MRI before my diagnostic surgery which found I had abnormally thick uterine lining.  The first part of my surgery last year was to go in and perform a D&C (dilation & curettage) to remove some of the thick lining.  So now I’m not only researching for my reader, but for myself (although my D&C biopsy came back normal).

How does endometrial hyperplasia develop?

It appears to be estrogen-dominant (sound familiar…Endometriosis may very well be an estogen-driven disease).  Many women who have high levels of estrogen, but lower levels of progesterone, may develop endometrial hyperplasia.  It has to do with hormones, ovulation, and the lack of progesterone, which may mean the lining of the uterus does not shed (at all, or as well as it should).  The over-dominant estrogen may encourage the lining to grow and thicken, and these over-crowded cells may develop into hyperplasia.

Mostly, endometrial hyperplasia occurs after menopause, once ovulation stops and progesterone is no longer produced.  It may also most likely occur during “the change of life” when ovulation is irregular (oh the things we have to look forward to).

Other reasons it may occur: an over-abundance of estrogen in your system (many foods or medications may heighten estrogen levels), taking medications that mimic estrogen, hormone replacement therapy, irregular periods, or if you are taking Tamoxifen (a breast cancer drug).  As as side note, Tamoxifen has been shown to increase Endometriosis activity and it’s use may need to be re-evaluated if you are treating for breast cancer and have Endometriosis.

You may also be at a higher risk of developing endometrial hyperplasia if you’re: older than 35; are white; haven’t ever been pregnant; were an older age at menopause; had your first period at a younger age; have diabetes mellulits, PCOS, gallbladder disease, or a thyroid disease; are obese; smoke cigarettes; or have a family history of ovarian, color, or uterine cancer.

Symptoms of endometrial hyperplasia

Abnormal/lengthy/heavy bleeding or cycles shorter than every 21 days appear to be the most common symptoms of endometrial hyperplasia. Bleeding between periods or post-menopausal bleeding may also be a sign.  An additional red flags may be pain during sex.

There are different stages of endometrial hyperplasia : simple, complex, simplex atypical, and complex atypical.  The atypical categories mean that abnormal cells are now present, which may (or may not) develop into cancerous cells.

Simple (aka mild) hyperplasia carries the smallest risk of developing into cancer.  Atypical hyperplasia carries the largest risk of cancer (8% if left untreated for simple atypical; 29% if left untreated for complex atypical).

Diagnosing endometrial hyperplasia

It’s the usual tests any EndoSister has undergone : transvaginal ultrasounds, biopsies, possibly a D&C, and possibly a hysterscope (a tiny lit-up tube going up your vagina to look inside your uterus).

There have been studies that discuss an increased rate of misdiagnoses for endometrial hyperplasia, though.  It may be a common occurrence called disordered proliferative endometrium, which is normal for perimenopausal women (going through “the Change”). It may also be a multitude of other conditions, many of which I cannot pronounce nor care to type up.  But you can read them in The Perimenopausal Blog entry here.

Treating endometrial hyperplasia

Many times, the additional of progestin to a medical regimen may successfully treat non-atypical endometrial hyperplasia.  Having a D&C to scrape out the excess lining is also an accepted treatment for the non-atypical hyperplasia.  A 2009 study showed that women with atypical hyperplasia who underwent a D&C had a lowered risk of cancer; however, 18% of those women still had invasive cancer cells at the time they had hysterectomies.  A D&C isn’t a guaranteed fix for atypical endometrial hyperplasia.

Some physicians will recommend ablation (where the lining of the uterus is destroyed by heat or laser), but it may not be successful.  And the scarring of the ablation procedure to the inside of the uterus may make it next to impossible to detect any remaining hyperplasia growth in the uterus.

If the diagnosis is for atypical hyperplasia (which again may develop into cancerous cells), a hysterectomy may be recommended to lessen the chances of developing uterine cancer.  If this is a decision you choose, please tell your doctor NOT to use a morcellator, as it may spread cancerous cells within your abdominal cavity (more info here).

How to avoid endometrial hyperplasia

If you are post-menopausal and taking estrogen, talk to your doctor about also taking progestin or progesterone.  If you’re still menstruating, talk to your doctor about a birth control pill that also contains progestin or progesterone; or taking them separately (as a pill, cream, or injection).  Keep within your healthy body weight, eat a healthy diet, and exercise; being obese may raise the risk of endometrial cancer.  Estrogen is stored in fatty tissues; the more fatty tissues you have, the more room you have to store excess estrogen.

Finally, go in for your regular examinations with your gynecologist, including a pelvic exam.  They don’t call it preventative medicine for nothing!

Is there a link between Endo and endometrial hyperplasia?

Depends on your school of thought.  If you’re one that believes Endometriosis is an estrogen-driven disease, then I would feel confident in theorizing that YES, there is a link.  I believe it is an estrogen-driven illness.  And endometrial hyperplasia is also an estrogen-dominant driven disease (too much estrogen; not enough progesterone).  So I, in my laymen wisdom, would call that a link.

But do I think you’re at a higher risk of developing endometrial hyperplasia if you have Endometriosis?  I truly don’t know.  Any higher than women without Endometriosis?  I have no idea.  Dr. M. Agarwal summed it up best in his 2/4/2012 response to an inquiry on Healthcaremagic, “Whether a given patient with endometriosis will have hyperplasia cannot be told before hand. It is best to keep a visit a gynecologist who will keep track of endometrial thickness by USG and guide you accordingly.”

What I did find for certain is that there are women with Endometriosis and endometrial hyperplasia all over the place.  Again, you are not alone in this:

LisaM posted in 4/2001 on Hystersisters.  She has adenomyosis, Endometriosis, fibroids, and endometrial hyperplasia.

Gee posted in 2/2002 on Hystersisters.  She had a hysterectomy due to atypical endometrial hyperplasia, adenomyosis, fibroids, ovarian cysts, and Endometriosis.

NYC_Grrl posted in 11/2006 on Hystersisters. She decided to have a hysterectomy because of her complex endometrial hyperplasia (not atypical), and was glad she did.  While in surgery, the physician also found that she had severe Endometriosis and a cyst “the size of a tennis ball” on her ovary.

Spoonerbear posted in 9/2007 on MedHelp. She had a D&C and ablation due to her endometrial hyperplasia.  She also has Stage IV Endometriosis.

Disneyheartlove posted in 2008 on MDJunction.  Not only does she have Endometriosis and uterine polyps, but she also suffers from atypical endometrial hyperplasia.

Catwoman posted in 4/2010 on Valvereplacement.  She received a hysterectomy at 34 due to her endometrial hyperplasia and also Endometriosis.

Bam1011 posted in 8/2010 on hystersisters. Not only does she have atypical endometrial hyperplasia, but also Endoemtriosis and ovarian cysts.

Tinkerbell_0609 posted in 1/2011 on IVF-Fertility. She has PCOS, endometrial hyperplasia, and Endometriosis.

MollyWiggles posted in 7/2012 in Hystersisters.  She had her hysterectomy a month earlier due to atypical endometrial hyperplasia.  She also has Endometriosis.

DJLadybug posted in 3/2013 in Hystersisters. Her physicians were pressing her for a hysterectomy due to her fibroids, Endometriosis, and possible endometrial hyperplasia.

Angiestaff posted in 9/2013 on Hystersisters.  She has Endometriosis and endometrial hyperplasia.

Skaduce posted in 3/2014 on Hystersisters. She suffered from fibroids, infertility, complex endometrial hyperplasia, and Endometriosis.

Little Volcano posted in 8/2014 on Hystersisters. She has endometrial hyperplasia, polyps, cysts, and Endometriosis.  She was waiting for further diagnostic tests to be done regarding her hyperplasia to make sure it’s not cancerous.

Jennn19 posted in 9/2014 on Hystersisters.  She has Endometriosis, but many women in her family have uterine cancer, endometrial hyperplasia, enlarged uterus, fibroids, ovarian cysts, and Endometriosis.

Anabus48 posted in 11/2014 on Hystersisters.  She has Endometriosis, Adenomyosis, and endometrial hyperplasia.

Pblonde posted in 1/2015 on Hystersisters.  She had complex atypical endometrial hyperplasia and Endometriosis.  Her physician recommended a hysterectomy, which she did, and is glad she did.  The biopsy results came back with Stage 1 uterine cancer.

Guest posted in 2/2015 on SteadyHealth.  She has endometrial hyperplasia, fibroids, PMS, PMDD, amenorehea, and Endometriosis.

Adamsmt posted in 9/2015 on Hystersisters.  She was going in for a hysterectomy because of her endometrial hyperplasia, polyps, and possible Endometriosis.

Do you have Endometriosis and hyperplasia?  Let us know!  Don’t have Endometriosis, but have hyperplasia?  Please, drop a comment below.  Trying to greater understand both conditions.

Resources:

Cancer Network – (1997; Article) Benign and Hyperplastic Endometrial Changes Associated with Tamoxifen Use

Cancer Network – (1995; Article) The Effect of Tamoxifen on the Endometrium

Cancer Research UK

Everyday Health Medica, LLCToo Much Estrogen

Everyday Health Media, LLC – What is Endometrial Hyperplasia?

Healthcommunities.com

HERS Foundation

Mayo Clinic

The American Congress of Obstetrics and Gynecologists – Endometrial Hyperplasia

The American Congress of Obstetrics and GynecologistsTamoxifen and Uterine Cancer – Committee Opinion

The Perimenopause Blog

US National Library of Medicine – (2009; Abstract) : Complex Atypical Endometrial Hyperplasia : the Risk of Unrecognized Adenocarcinoma and Value of Preoperative Dilation and Curettage

US National Library of Medicine – (1994; Abstract) : Endometriosis and Tamoxifen

US National Library of Medicine – (1996; Abstract) : Prognostic Importance of Hyperplasia and Atypia in Endometriosis

West Coast Gynecologic Oncology

Womens Health Advice

~ 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

More about my Pooper

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So I posted about my poo diary this morning, but you don’t know WHY I have to keep one…

So Saturday I had an appointment with my PCP. Well, the Physician’s Assistant. It was wonderful! I was going in to get a referral to a GI doctor because of my poopy-gut-pain (knives, daggers, glass feelings when I poo) and we talked for nearly an hour about my Endometriosis, my diet, my supplements, my birth control, and my poopy issues. She wasn’t quick to jump to conclusions of IBS or Crohn’s, which I valued! And we even discussed the possibility that my Endo and/or adhesions may have returned, which may be causing my renewed poopy-pain (been poopy-pain free for nearly a year, then *blamo* they’re back). At the end of our lengthy conversation, she stuck her finger in my butt (wooooohooooo), said that I have a sharp 90 degree angle inside (which she said isn’t normal, but may not be bad) and it may truly be that adhesions are pulling my insides out of whack. Especially after I told her my op report said Endo and adhesions “obliterated my cul de sac”- she understood right away that pulls everything and can cause havoc with rectum and bowels.

She’ll write up the referral to the GI and strongly suggested that my GI and gyno have a powwow before/during/after my GI appointment. I’ve asked if she could find a GI that was at least familiar with Endometriosis rather than I having to explain it or immediately settle for an IBS diagnosis. I love it when you find a doctor (or a PA) that truly listens and cares. And she affirmed that my lifelong poopy pain is NOT normal, calling me her most “Patient Poopy Patient” for enduring these years of pain always thinking they were normal. It’s time to start honoring my body and reaching out for help regarding anything that may not be normal.

I’m also not wanting to jump to conclusions that this can only be caused by my Endo and/or adhesions. And she understands that as well. She let me know that there will likely be a scope test, and possibly a colonoscopy, just to rule out other possible internal issues or triggers. Also looking forward to an HPV test of my butt (I have two strains on my cervix [one of which is high-risk cancer HPV] and this is just to be thorough and safe).

This week I’ve been dealing with burning cramps accompanied by diarrhea. Yay…Keeping a diet/poopy diary until I have my GI appointment so I have some facts to bring in to him/her. Looking forward to normalizing again. Ugh.

How do you deal with your poopy issues?  Do you have Endo on or inside your bowels? What does it feel like?  What about IBS or Crohns?  Drop a comment below…

Heading back out into the desert

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photo by Arron Marie Fenton; Wasteland Weekend, 2011

Now that I’ve been back from Burning Man for two weeks, it’s time to head back out to the desert.  This time we’ll be camping for 3 days at Wasteland Weekend, a big post-apocalyptic themed event.

I’ll keep current on my diet and supplements.  My only concern?  I’m stepping into this one with bowel issues : I’ve had diarrhea literally since Sunday.  Four days.  I’ve been keeping a poo-journal since Sunday due to my pending GI appointment…keeping track of my cramps, what I eat and drink, and my poos.

And it has been a wild ride these past few days.  Some cramps have even woken me up at night.  Others keep me from standing or walking.  Some induce major back pain. I’m hesitant to take any Immodium AD since that usually backs me up for a week.  I’ll keep drinking my water, stay hydrated, and honor my body.

So I’m hoping I don’t become intimately familiar with the port-a-potties this weekend.  But if I do, that’s okay.  I can serenade my fellow campers with my … um … music.  I’m also really hoping my body re-balances and either just stops pooping altogether for a few days or winds down and normalizes.  I’m tired of this.  Looking forward to the GI doctor’s appointment.

I hope you all have a great weekend!

Truth, Theory, or Tall Tale?

causes

The medical community has a standard of care for Endometriosis.

TallTale

There are many physicians who have heard, and treat, Endometriosis.  And there are many still who have not heard of it, nor know the first thing about treating Endometriosis.  With that being said, is there a medical-community standard for successfully suppressing symptoms of Endometriosis?  In this modern day and age of scientific discovery, you’d think yes…but…

No.

Some physicians will operate, surgically removing or destroying Endometriosis implants and scarring from the pelvic cavity and beyond.  Some physicians refuse to operate.

Some prescribe Lupron Depot with the “Add Back” pill.  Some refuse to prescribe the Add Back pill.  And some refuse to prescribe Lupron.  Some prescribe Depo Provera, others prescribe Zoladex, others Danazol, others Lanzopral.

Some suggest hysterectomies.  Others are vehemently against them.

Some suggest birth control pills, IUDs, implants, or a “ring.”  Others do not.

Many prescribe NSAIDs and pain killers.  Many do not.

And while any of these above-referenced treatments may work for some women, they do not work for all women…

The medical community still does not know what causes, contributes to, or sustains Endometriosis.  Without that knowledge, they cannot begin to iron out a standard of care for all women, let alone a cure.  It’s trial and error.  Hit and miss.

And it’s frustrating.

The Wurn Technique : Improve Infertility and Adhesion Pain?

clearpassageHave you heard of the Wurn Technique?  I hadn’t until a few weeks ago when I received an email from Clear Passage with links to a recently-published study showing the Wurn Technique can improve infertility issues, as well as reduce Endometriosis pain.  Are they claiming to cure Endometriosis?  Not at all.  But they are claiming their technique may help reduce your pain and may increases your chances of becoming pregnant.  So, curious as I was, I read up on it, asked questions, and now I present this information to you!

Personal Note: I am not endorsing Clear Passage or the claims made in these studies or their webpage.  I am simply pointing you, the curious reader, in a direction you may not have located otherwise.  Always, always, ALWAYS do your own research.  And choose a treatment that feels right for you.  If you have any questions about the Wurn Technique, please reach out to Clear Passage at info@clearpassage.com or 1 (352) 336-1433.  They will answer your questions and, if you so desire, schedule a phone consultation with one of their therapists (for free) to see if this is a viable treatment option for you.

Update 1/12/16 : If you’re located in the San Diego area, Clear Passage now has a San Diego location.  Click here for more information.

Clear Passage

Clear Passage was created by Belinda and Larry Wurn after Belinda was diagnosed and treated for cervical cancer in 1984.  After enduring surgery and radiation therapy, Belinda’s insides were scarred, creating a “frozen pelvis.”  Conventional medicine did little to ease her suffering, so she and Larry studied physical therapy techniques in the US and abroad and practiced the manual physical therapy they had been learning.  And, it was working!  They began developing their own methods and manual therapy techniques to ease her chronic pain, which ultimately became known as the Wurn Technique.

The Wurn Technique

The Wurn Technique involves 200 manual therapy techniques, each created to palpate the restricted areas of the body, freeing up adhesions and restoring the proper flow of the body.  It is generally a 5-day treatment comprising of 20 hours of bodywork.  Again and again, Clear Passage was able to “reverse infertility” for many women, freeing Fallopian tubes from scar tissue, and restoring their proper function.  Many women have praised Clear Passage and the Wurn Technique for the ability to conceive, and successfully deliver, a child.  All without surgery.

wurn rep
A representation of one of the hundreds of protocols employed by the Wurn Technique

KSAT12, a Texas-based news station, broadcast a story on August 19, 2015, about the Wurn Technique.  If you’d like to see a great visual demonstration of some of the techniques they use, click here.  There are also some testimonials of some very satisfied clientele.  The video is roughly 2 minutes long.

Infertility

Testimonials are a great way to do business; however, Clear Passage wanted scientific proof!  They conducted a small clinical trial of a woman whose Fallopian tubes were both severely blocked, and she had been diagnosed with a frozen pelvis.  Previous surgical intervention to unblock her Fallopian tubes failed and she was resigned to not having any children.  After working with the therapists at Clear Passage and using the Wurn Technique, they were able to completely unblock one of her Fallopian tubes!  Fantastic results, but not enough proof.  So…they went BIG and began a 10-year study of their technique and infertility results.  And it was recently published in the Alternative Therapies in Health and Medicine journal.

In that study, they examined and treated nearly 1,400 patients over a ten-year period.  Of them, many women had Endometriosis-related infertility and astounding 43% of those patients conceived after their Clear Passage/Wurn Technique treatments.  A figure which surpassed even the surgical intervention figures (38-42%).  Women with both PCOS and Endometriosis also reported a successful pregnancy rate (75%).  Undergoing IVF?  This study found that Clear Passage and the Wurn Techniques had pregnancy rates 1.5 times higher than IVF alone.  Overall, Clear Passage and the Wurn Technique had a 60.85% success rate in opening one or both blocked Fallopian tubes! How does it work?  “…the Wurn technique… appeared to work by deforming adhesions in the body, thereby allowing increased mobility, motility, and function of the structures involved in fertility.” (Alternative Therapies, May/June 2015, Vol 21, 3, p. 37)

Further studies are needed to evaluate if the Stage of Endometriosis has any bearing on the treatment outcomes.

Endometriosis Pain

Painful sex and painful periods.  Two very painful things most women with Endometriosis have to deal with…

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Click for larger view

In 2011, Clear Passage again hit the scientific and medical community to see how their Wurn Technique affected these painful issues associated with Endometriosis and the study was published in 2012.  All of the study participants had been previously surgically diagnosed with Endometriosis and 78% of those women also had pelvic adhesions.  One study consisted of 14 women who complained of painful sex; another consisted of 18 women who complained of painful sex and painful periods.  Each of the women underwent 20 hours of physical therapy using Clear Passage’s techniques.  The studies concluded that painful sex and sexual function were statistically significantly improved and painful periods statistically significantly decreased for the study participants.

In 2014, they submitted an update on that study! Seven of the 18 patients from the 2011 study were available for follow-up a year later.  Fifty percent of the women still did not experience any pain with sex!  Fifty percent!  And the participants also reported a continuing decreased amount of menstrual pain.  The Wurn Technique may prove useful to a woman who is having painful intercourse or painful periods prior to undergoing another laparoscopic surgery, or if she cannot afford a(nother) surgery.  An alternative option, which may lead to a year of reduced symptoms.  But, again, this appears to be only adhesion-related; shifting, freeing, and stretching the adhesions.  It may not work in all painful cases if adhesions are not the causation.

The Interweb’s Two Cents

I decided to wander around the Internet for testimonials, questions, and nay-sayers about the Wurn Technique.  So I waded through the first 20 pages of Google search results and present you with a few results:

Zoe was a satisfied customer from 2007 (click here).  She stressed that the Wurn Technique is neither massage therapy or physical therapy, but a “deep deep deep body work…”

Pogo1 wrote on a forum in 2008 (click here) and was met with a good experience of the Wurn Technique in the UK.

KimmyKay inquired online in 2009 (click here) and only received a response from a very skeptical doctor, who then offered to make himself available for a consultation to evaluate her infertility issues.

Layne Emerson wrote in 2011 (click here) about the potential risks involved with massage therapy or the Wurn Technique. Clear Passage also outlines the risks of their methods here.

Amber3 reached out in 2011 (click here) for anyone who had experience with the Wurn Technique.  FaithHopeLove responded that she had the Wurn Technique to treat ankle scar tissue with fantastic results.

Mojo1234 posted in 2011 (click here) that the Wurn Technique did not work for her, but “…I think it does for some.  It depends on the extent of adhesions and what’s attached.”

Janice O posted in 2011 (click here) about her bowel obstructions due to adhesions and how she manages her pain and symptoms with the Wurn Technique.

Bookbabe posted an inquiry online back in 2013 (click here), and was met with skepticism, but also a few positive remarks.  She had her physician talk to Clear Passage and, “[h]e said what they are doing makes sense to him and that there is a chance that it would work.  He also called an ob/gyn friend of his to see what she thought of it and she said that when they do surgery to try and remove scar tissue and they are also stretching and tearing so it make sense to her as well, although she had never heard of it before.”

Mark Crislip posted shortly after the 2015 study was released (click here) with some points as to why he feels the results of the study, and the study itself, are disingenuous.

Craig Bowden’s daughter started a Gofundme campaign (click here) to help with medical and travel expenses for his Wurn Technique treatments.  He had severe abdominal adhesions after several surgeries, but updates, “[b]efore heading down to Clear Passage, I had a persistent/painful bowel obstruction, could only walk short distances with a crutch, had trouble going up/down stairs, experienced tremendous pain in my abdomen on a daily basis, had a very limited diet of crackers/similar items, and required a significant amount pain medication everyday. Only a mere five days after their treatment, I’m writing this as a person who can walk extensively without a cane, stand upright with great posture, and move freely without pain. I have diminished my baseline of pain and I am tapering down my pain medication. It’s absolutely incredible!”

Nicole Brown left a raving review (click here) after her four-hour Wurn Technique session at Align PT.  And she goes on to describe her experience after her week-long treatment.  “It was the best call I’ve made in a long time.”

As always, you must decide for yourself what you will believe and what course of action you will take.

If you think you’d like to try out Clear Passage and their Wurn Technique, please contact them at info@clearpassage.com or 1 (352) 336-1433.  And, as always, consult with your physician before starting any new regimen…

I would like to thank the Clear Passage team for being a wealth of invaluable information and putting up with my endless questions and requests during this blog-writing process.  If anything, Clear Passage’s dedication to improving womens’ lives is very evident to me.  They truly believe in their work.  I hope that they are able to continue to ease the pain and suffering of others while also continuing their pursuit of additional scientific proof.

Resources:

Adhesions.org

Alternative Therapies in Health and Medicine (2015; Article) Ten-Year Retrospective Study on the Efficacy of a Manual Physical Therapy to Treat Female Infertility

Babycenter.com

Clear Passage

Journal of Endometriosis and Pelvic Pain Disorders (2012; Article) Decreasing Dyspareunia and Dysmenorrhea in Women with Endometriosis Via a Manual Physical Therapy : Results from Two Independent Studies

Journal of Endometriosis and Pelvic Pain Disorders (2014; Letter to the Editor) Update on “Decreasing Dyspareunia and Dysmenorrhea in Women with Endometriosis Via a Manual Physical Therapy : Results from Two Independent Studies”

~ 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

Feel Good Fridays!

Not quality shoes

We’ve made it to another Friday!

Today’s quote is by one of my absolute favorite authors when I was in my teens, Bodie Thoene:

“Being brave…is not always being unafraid. Maybe it’s more like doing what you know is right even when you’re too tired. Or scared. It’s going on and doing it anyway…even when you think you can’t take one more step.” (excerpt from The Key to Zion)

A lot of women I know are scheduling surgeries over the next few months, undergoing new MRIs, are meeting new doctors, or undergoing clinical trials. Each of the has a bit of fear in their voices, a bit of hesitation, and all are full of hope.  Today’s quote is for them.

And for anyone going through something where they need to rise above their fear and push forward.  You are incredibly brave.  All of you.

Have a wonderful weekend.

Yours, Lisa

Endometriosis & The Heart

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I’ve read bits and pieces here and there that Endometriosis can grow on your heart (or the lining of your heart).  And have heard from a friend that she may have it on her heart.  That’s scary business!

Which got my juices flowin’ to find the documented cases of Endometriosis on the heart, how it was excised (if at all), etc.  Here goes ( PS – there’s not a lot out there…)!

Endometriosis is usually found within the pelvic cavity, but has also been known to travel northward and latching onto the liver and diaphragm.  It has also been found on the membranes surrounding the lungs.  Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes.  But today, we focus on the heart.

We all know that the heart is located in our chest.  But, just where in our chest?  What does it touch?  Ready…SCIENCE!

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The heart is located adjacent to the diaphragm and lungs.  This may be of particular interest to anyone with Endometriosis on their diaphragm (like myself) or your lung lining who also believes in the transplantation theory.  The pericardium is the sac that envelopes the heart.

In 2012, a 28-year-old patient with Endometriosis complained of pelvic pain and upper-quadrant abdominal pain.  She was surgically diagnosed with Endometriosis six months before this new abdominal pain surfaced.  She had pain during her menstrual cycle which radiated from her upper abdomen to her right shoulder, which worsened when lying down and would sometimes render her immobile – completely unable to move because of the pain (now that sounds familiar).  An electrocardiogram and clinical exam of her chest were normal. She was given NSAIDs, which offered no relief, and reported her abdomen and shoulder pain as a 9 out of 10, nearly unbearable.  An abdominal ultrasound was performed, and “plaques” were evident on the surface of her liver and diaphragm, which made her doctor suspect Endometriosis.  A surgery was performed and she was found to have diaphragmic (diaphragm), pericardial (the sac around the heart), and pleural (the exterior lung lining) Endometriosis. Endo implants were also located, and excised, from the usual pelvic cavity sites.  She also had adhesions between her liver and diaphragm, which were separated.  Implants were removed from her diaphragm, pericardial sac, and pleural lining.  Biopsies of the tissues extracted during surgery confirmed Endometriosis, as well as the presence of Endometriomas on her diaphragm. And “[t]he diaphragmatic peritoneum, muscular layer, parietal pleura and pericardium were completely fused into one solid mass.”  She had to undergo two weeks of respiratory therapy after surgery due to complications of a pneumothorax (collapsed lung), but had no pericardial issues afterward. She was also given three months of a GnRH treatment, followed by a continuous birth control pill.  She had no recurrent pain when she did a follow-up exam three months after surgery.  It is suggested that if you suffer from shoulder pain or upper-abdominal pain during your monthly cycles, you may want to talk to your doctor about the possibility of Endometriosis in these areas.

A study released in 2009 discussed peritoneal stroma Endometriosis.  Peri-what what?  Peritoneal stroma Endometriosis.  The peritoneum is the lining around your abdominal and pelvic cavities.  A stroma is “the supporting framework of an organ, a gland or other structure, usually composed of connective tissue cells, as distinguished from the parenchyma cells or tissues performing the special function of the organ or bodily part” (that cleared up everything; right?).  Stromal Endometriosis can occur with, or without, the presence of regular Endometriosis.  And they are usually located near or above the mesothelial surface, which covers the peritoneum (abdominal & pelvic cavities), percardium (heart), and pleura (lungs).  They become inflamed, just like regular Endometriosis, and can even form masses and granulomas, which may calcify.  Why all this talk about stromal endometriosis?  Keep reading…

In 1960, the first recorded case of stromal Endometriosis and the heart muscle was published.  This growth resulted in the poor woman’s death.  In this 1960 report, it suggests that stromal Endometriosis usually occurs after menopause…Anyway, back to the facts:

  • In 1951, a 46-year-old woman was admitted to the hospital due to vaginal bleeding, and she received a hysterectomy due to an enlarged uterus.  Her ovaries, Fallopian tubes, and cervix were left intact.  Tissue sample biopsies confirmed the presence of stromal Endometriosis.
  • In 1952, she had a physical examination and electrocardiogram, which both were normal.
  • In 1954, she returned to her gynecologist due to unnatural vaginal firmness, and more stromal Endometriosis was located on her cervix.
  • In 1955, she complained to her doctor of difficulty breathing and heart palpitations.  She was found to have a slight heart murmur, but again her chest exam and electrocardiogram were within normal limits.  She continued to have stromal endometriosis growths on her cervix, so she was treated with radiation to sterilize her ovaries; within a month, those masses had begun to recede.
  • Two months later, she complained of throat, jaw, and chin pain and was hospitalized.  Again, cardiac exams were normal.  The pain disappeared and she was released from the hospital within 48 hours.
  • Less than two months later, she was back in the hospital for chest pain and was diagnosed with pericarditis (inflammation of the pericardium – the membrane around the heart), which resulted in a hospital stay of over a month.  Less than a month after discharge, she was admitted back into the hospital for pericarditis, as well as excess fluid in her lung cavity (pleural cavity).
  • Three months later, she developed “shoulder-hand” syndrome, which is a painful disability of the arms due to a disturbance in the sympathetic nervous system.  Also, she complained of hot flashes and was given estrogen therapy.
  • Less than five months later, they found a recurrence of her cervical stroma Endometriosis, and her estrogen therapy was immediately stopped.  A flouroscopy of her heart at that time also found an enlargement of the right side.
  • Within three months of having stopped the estrogen therapy, her cervical growths had all but disappeared.  She continued to complain of fatigue, weakness, difficulty breathing, and night sweats.
  • Three months later, she was again admitted to the hospital for difficulty breathing and chest pain.  They believed she may have suffered from a pulmonary infarction and found she had a right axis deviation.
  • Over the next month, she continued to deteriorate, became dizzy, fainted on four separate occasions, and suddenly died on December 28, 1956.

Her autopsy revealed a tumorous mass in her heart, which “filled the chamber” and “invaded the wall of the right ventricle…”  This mass varied in texture, some being spongy and soft, some being fibrous and hard.  It was biopsied and identified as stromal Endometriosis.  They believe she died due to the blockage (aka the stromal Endometriosis) in her heart and theorized that it ended up in her heart by being transplated from her cervix via her lymphatic system. Unfortunately, if you would like to read this study, you must pay for access to the article (I paid $30 for 24-hour access to The American Journal of Medicine).  But if you’re fine with just the abstract, the link is below in the Resources section (the same link can be used if you wanted to pay the read the article).

In other news, at the 2012 annual meeting of the American Society for Reproductive Medicine, it was discussed that women with Endometriosis may have a 50% increased risk of heart attack, and an 80% increased risk of angina (chest pain).  They theorize that there may be an overlap with inflammation and hormones that causes this link.  They did state that larger studies are needed before raising alarm in Endometriosis patients or the medical community.  However, important lifestyle changes for women with Endometriosis may be necessary to avoid any increased chances of heart attacks.  Keep in mind, too, that certain oral contraceptives may also increase a risk of heart attack in women.  Just one more thing for us to worry about…

What did I learn today?  It’s scary knowing that women in the past who have had diaphragmatic Endometriosis, as well as Endo on their livers, have had Endo on their heart-lining.  My surgeon found Endo on my liver and my diaphragm.  Mine!  So it’s a bit terrifying.  BUT, it’s also not a guarantee that you (or I) are going to develop it on the heart (or in the heart, as is the case of that poor woman from the ’50s).  I’ve learned that I am going to pay attention to my body, eat heart-healthy foods, exercise, and just take care of the machine which is My Body.  It’s all I can do.  I’m not going to worry about what could be, because it won’t do me any good.

But if you have any of the symptoms discussed in this blog, please consider talking to your doctor.  And if Endo has been discovered on your diaphragm, liver, and/or lungs, you may also consider discussing with your doctor what surgeries may be required in the future to have a better look at your thoracic cavity (a laparoscopy isn’t always the best choice to visualize those areas).

Again, this isn’t meant to scare anyone.  Just educate. And raise awareness.  It’s not just a pelvic disease. Not just a gyno-thing.  Thanks for reading!  Feel free to share or comment below.  Yours, Lisa

Resources:

Biology Online

Endometriosis.org

Heart.org

Mayo Clinic

Merck Manuals

Medical Dictionary

Camran Nezhat, M.D., FACOG, FACS

Oxford Journals – (1996; Article) Theories on the Pathogenesis of Endometriosis

Neurology.org

Rutgers

The American Journal of Medicine (1960; Abstract) Stromal Endometriosis Involving the Heart

U.S. National Library of Medicine – (2012; Article) Pericardial, pleural and diaphragmatic endometriosis in association with pelvic peritoneal and bowel endometriosis: a case report and review of the literature

U.S. National Library of Medicine – (2009; Abstract) Peritoneal Stromal Endometriosis: A Detailed Morphological Analysis of a Large Series of Cases of a Common and Under-Recognized Form of Endometriosis

~ 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

Why I support the Endometriosis Foundation of America

causes

Based on yesterday’s post about the Endometriosis Foundation of America donations, some of you have asked what outreach programs the EFA offers.  What are they doing with the money they collect from donations?  How are they helping raise awareness for Endometriosis?  How are they helping with research?  How are they helping EndoSisters with their disease?

Well, ask and you shall receive!

With their permission, I’ve posted a brief summary of their programs and efforts:

Endometriosis

  • An often painful disease affecting multiple body systems
  • Occurs when tissue similar to the endometrium (lining of the uterus) is found in areas outside of the uterus
  • Approximately 1 out of every 10 women of reproductive age live with endometriosis in the United States

The ENdometriosis: Promoting Outreach and Wide Recognition (The ENPOWR) Project

  • The EFA’s school- and community-based education and outreach program, consisting of a 45-minute interactive discussion differentiated for specific audiences
  • Supported by significant grants from the New York State Senate and Department of Health ($650,000 over three years)
  • To date, the ENPOWR Project has made 310 presentations to sites throughout New York City, Long Island, Albany, Syracuse, Rochester, and Westchester, reaching over 7,400 adolescents
  • ENPOWR has a 91% return rate to sites
  • For more information on their ENPOWR program, click here

The ROSE (Research OutSmarts Endometriosis) Study

  • The first project in the United States to solely investigate endometrial tissue to the deepest genetic signature
  • The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with the disease
  • The EFA’s sponsorship of ROSE at the Feinstein Institute is one of our crowning achievements, and just the beginning of a long-term partnership in endometriosis research
  • For more information, or to participate in, the ROSE Study, click here

MIT Center for Gynepathology Research

  • Established in December 2009 by Linda G. Griffith, the School of Engineering Teaching Innovation Professor of Biological and Mechanical Engineering and director of the Center
  • The country’s first research center in gynepathology
  • The center is currently working on creating a software application/mobile app to raise disease awareness and to gather better symptomatic data from patients, starting with their first doctor’s visit
  • For more information on this center, or to follow their news and research, click here

Annual Medical Conference

  • An annual gathering of medical professionals to address the controversies surrounding endometriosis, improve treatment options, and to establish that the disease must become a research priority
  • For 3 years, the EFA hosted a Nurses Conference, a separate educational event for nursing professionals
  • Beginning in 2015, our Medical Conference will include all allied health professionals
  • For more information on their upcoming medical conferences, click here
  • Unable to attend (like myself)?  You can watch (for free!) videos of their past conferences here (2015 videos are still pending)

Annual Patients’ Day

  • A multi-disciplinary collaboration for women and their loved ones to meet each other, share their journeys, and “ask the experts”
  • The Annual Patient’s Day usually falls within the timeframe of their medical conferences.  More info can be found here

Blossom Ball

  • The EFA’s annual gala and sole fundraising event to support efforts to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research
  • Our 2016 gala is expected to be held on April 9-11, 2016
  • For more information on their Blossom Ball event, click here

Poster Campaign

  • The EFA has placed over 100,000 educational posters on walls across the country in schools, colleges, sports facilities, gyms, doctor’s offices, hospitals, and clinics to increase public awareness for endometriosis
  • To see their brochures, fact sheets, symptom trackers, and posters, click here

The Endometriosis Foundation of America is doing a lot for our disease; not only searching for a cure, but educating women, their loved ones, nurses, and doctors alike.  I hope you can see why I choose to support their efforts through my Bloomin’ Uterus fundraising (the walk, the buttons, and the t-shirt sales).  If you would like to support the EFA, you can either do so through my fundraising efforts (here) or directly through the EFA’s webpage (here).  Don’t want to support the EFA, but do want to support endometriosis research, education, and awareness?  There are so many organizations out there!  Do the research, find the one you feel best about, and give it a go! 🙂  There are no wrongs or rights here; only action.

Truth, Theory, or Tall Tale?

You may say, “I don’t know anybody that has Endometriosis.”

TheoryOne in ten women suffer from Endometriosis.  Many suffer in silence because it can be an embarrassing “women’s disease.”  Chances are that you know someone who has Endometriosis, or know someone who knows someone that has it.  And you know what else? Famous people have Endo : Whoopi Goldberg, Susan Sarandon, Cyndi Lauper, Dolly Parton, Pamela Anderson, and Hillary Clinton are just a few.  There are so many.  And it is suspected that Marilyn Monroe also had Endo.  See?  You know someone who has it.  Might as well learn the signs and symptoms…

Susan Sarandon speaks out about Endometriosis at the Endometriosis Foundation of America’s Blossom Ball, an annual fundraiser

And Whoopi spoke at another EFA Blossom Ball event

I appreciate these women so very much for taking the time out of their busy schedules and speaking out about this disease.  I wish all the gals (famous or regular gals like you and I), especially those with political influence, would do the same.