Truth, Theory, or Tall Tale?

causes

Endometriosis is not restricted to your pelvic cavity.

Truth

Endometriosis can infect your pelvic cavity and is routinely found on the ovaries, the bladder, the bowel, the uterus, the fallopian tubes, etc.  It is also found on other organs, such as the liver.  It can grow and spread on the diaphragm and lungs, and even enter a woman’s lungs, causing regular collapsed lungs or coughing up blood.  Rare cases of Endometriosis have been diagnosed on the brain, heart, eyes, skin, and even inside the spinal cord.

This disease is not restricted to the gynecological interest.  It should not be known as just a “period disease.”  All areas of the body can be affected.  Ongoing research to better understand this incredibly invasive disease.  One day we will have answers.  And hopefully a cure.

Resources:

American Journal of Roentgenology

Journal of the Society of Laparoendoscopic Surgeons

The JAMA Network

U.S. National Library of Medicine

U.S. National Library of Medicine – 2nd link

~ 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

Bloomin’ Uterus t-Shirts are available for a limited time

UPDATE : New sales page is active until February 22, 2016.  Click HERE for more info.

 

Many of you have been asking for another run of Bloomin’ Uterus shirts! Ask and you shall receive!  And this time there are TWO designs to choose from!

Option A (found here: http://teespring.com/bloomin-uterus-shirts) is the original design, with the Bloomin’ Uterus logo on the abdomen.  This sale campaign ends on April 19th.

shirt option a

Here’s the front & back of Option A from our March 28, 2015 Endometriosis Awareness walk:

front back

Option B (found here: http://teespring.com/bloomin-uterus-shirts_copy_1) has a smaller Bloomin’ Uterus logo up near the left chest area. This sale campaign ends on April 12th.

shirt option b

Both share an identical back.

AND both will have all profits donated to the Endometriosis Foundation of America.

Different styles of shirt, including a t-shirts, a v-neck, women’s fitted t-shirts, a hoodie, and a tank top (warning: this is a unisex tank top and more in the style of a men’s tank), are available. And each is priced so approximately $5 from each sale will be donated to the E.F.A.  The rest of your purchase price goes to Teespring for their labor and material costs.  None of it comes to my pocket. Just the way I like it!

Spread the word!  These are for a limited time only and won’t be run again for quite a while.

Yours,
Lisa
Bloomin’ Uterus

Feel Good Friday!

endoline

We made it to another Friday! And that means…Feel Good FRIDAY!

Today’s quote is by Steve Goodier, a blogger and newspaper columnist:

“None of us lives in isolation. We’re in it together. And some conflict along the way is inevitable. But our highest priority, when all is said and done, has to be commitment to each other –- sticking together.”

Tomorrow, Saturday, March 28, 2015, is a day full of walks and marches of women with Endometriosis and their friends & family coming together, supporting each other, and understanding that they are not alone.  It is a day of unity. A day of strength.

I’d like to see this “day” become a constant way of life.  Not just for Endo Sufferers, but for all of us.  May we all be able to “stick together” with those that truly matter in our lives.  Overcome differences, challenges, and disagreements.

You are not alone. We are not alone.

Have a wonderful weekend!!!!  I know I will!

Yours, Lisa

Library Update!

20150326_194847The Vital Health Institute generously gifted the Bloomin’ Uterus library with several copies of Dr. Cook’s book, “Stop Endometriosis and Pelvic Pain.” Sending a HUGE thank you to Dr. Cook, Margaret, and the staff at the Vital Health Institute for being so kind. Very much appreciated.

Interested in checking out a copy for yourself? FOR FREE (you have to ship it back when you’re done reading it). Follow the link and let me know!

https://bloominuterus.com/library/

Endometriosis & The Lungs

download

I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs.  An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood.  Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month.  Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc.  Here goes!  This is NOT meant to scare you.  Just educate us all, including myself.

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

Thoracic or Pulmonary Endometriosis is when Endometriosis implants/adhesions are found in your thoracic region, and can be found on your trachea, bronchi, diaphragm, lungs, or heart.  It was first medically documented in 1953.  Today, we focus on the lungs.

This CAN be fatal.  If you suffer from these symptoms, or suffer from recurrent lung collapses, seek emergency medical attention.  If you suspect you may have thoracic Endometriosis, please, I urge you to have a talk with your physician.

75% of women who have pulmonary Endometriosis suffer from catamenial pneumothorax, which can cause her lung(s) to collapse during her menstrual cycle (usually starts within 72 hours of her menstrual cycle beginning).  Endometrial cells have implanted themselves along the lining of the lungs and when menstruating may cause air and blood to enter the lungs improperly, causing a collapse.  Symptoms include stabbing pain, shortness of breath, dizziness, fatigue, neck pain, and a “pop” or “cracking” sensation.  And, yet, some women have absolutely NO symptoms and it’s discovered by accident during surgery.  It’s most common among 30-40 year old women with Endometriosis.

A 31-year-old woman had a prior medical history of iron deficiency anemia and several months of acute bronchitis went to the ER due to shortness of breath that had been progressively worsening.  A chest x-ray showed her right lung had collapsed and filled with fluid.  They drained her lung with a chest tube, but due to complications nearly two weeks later, she returned for VATS surgery.  During the surgery, endometrial lesions were found along the lobes of her right lung, which were removed.  At the time this publication was written, she had one period since surgery, with no recurrence of the collapsed lung; however, she did complain of right-sided chest pain during her period.  She had since started oral contraceptives.

A 32-year-old woman had chest pain and shortness of breath for the past two months.  Now with the onset of right abdominal pain for two days, she was admitted into the hospital.  An ultrasound showed an endometrioma and fibroids.  A chest x-ray showed a collapsed right lung.  She received a chest tube and fluid was drained.  Prior to being discharged from the hospital, the fibroids and endometrioma were surgically removed, and she hadn’t had any recurrence of symptoms two months later.

A 35-year-old woman with a history of a prior lung collapse went to the emergency room because she was having chest pain and shortness of breath.  She had a known history of Endometriosis and infertility, as well as a collapsed lung two years prior.  She was not on her period.  It was discovered that she had a collapsed right lung and was sent in for VATS surgery.  Bluish-brown lesions were found her her pleura and diaphragm, which were all resected, removed, biopsied, and confirmed to be Endometriosis.  As of one year later, she had not had any recurrence.

A 36-year-old woman had gone to the emergency room because of abdominal pain, chest pain, shortness of breath and feeling faint.  It was the second day of her period.  She had a long-standing history of anemia, infertility, and a surgical Endometriosis diagnosis.  The ER did some imaging studies, found fluid in her pleural cavity, and drained it – taking one litre of fluid!  She also had some fluid in her abdomen.  While at the ER, she collapsed and was rushed to surgery – they found blood clots in her pleural cavity, as well as suspected Endometriosis inside her lungs and on her diaphragm.  They observed the blood was slowly leaking from the lesions…the lesions were cauterized (boo) and a portion of her lungs was resected.  Biopsy confirmed Endometriosis and three months after her surgery, she still had not had a repeat collapse.  She was referred to a gynecologist for future care.

A 43-year-old woman who had had ablation surgery for Endometriosis several years and who took Provera woke up one night due to sudden pain in the right side of her chest.  Three hours later she was having trouble breathing.  So she sought medical care.  She was found to have fluid buildup along her right lung, which was drained via a needle procedure.  A day later, she started her period and six days later underwent VATS surgery to remove a hematoma and more fluid buildup.  The biopsy of tissues revealed chronic inflammation.

A 47-year-old woman went to the ER complaining of right flank pain, dizziness, and sweating.  Testing showed she had fluid in lining of her lungs and she underwent VATS surgery.  Tissue that was removed was biopsied and found to be Endometriosis.  After surgery, she went on hormonal suppression (didn’t disclose if birth control or other) and has not had a recurrence of symptoms.

A 20-year-old woman went to a clinic because she had been coughing up blood.  A month later, it happened again and she went to the hospital.  A month later, again.  Two weeks after her period, she was admitted for further studies, but her symptoms had ceased.  Two years prior, she had undergone an abortion and had since taken contraceptive pills – then her coughing started about a month after she stopped taking the pill.  Birth control pills were once more prescribed to her, but she did not take them and continued to cough up blood.  Six months after her initial clinical visit, she underwent surgery and the biopsied tissue from her lungs tested positive as Endometriosis.  While inside, her surgeons also found blood within her lungs.  They removed what they could and she was symptom free at least four months after her surgery, without going back on the pill.

Not all women who have catamenial pneunothorax (lung collapses on their period) suffer from Endometriosis in/on their lungs.  A study published in the December 2016 issue of Current Thoracic Surgery found one woman who had recurrent lung collapses on her period, and subsequent surgeries for those collapses, did NOT have Endometriosis.  She just had collapses during her cycle.  She was placed on birth control and it helped stop the collapses.  Not everything is Endo…Just one more reason why conversations with your doctors and thorough medical histories are so important.

Blausen_0742_Pneumothorax

10.7% of women who have pulmonary Endometriosis suffer from catamenial hemothorax and/or hemopneumothorax, which is a build up of blood (and sometimes air) in the pleural cavity , which is the space between our lungs and our chest cavity.  During a menstrual cycle, that inflammation and blood of the Endo implants cause pressure on the lungs, which can lead to shortness of breath, chest pain, clammy skin, low blood pressure, and rapid heartbeat.

8.5% of women who have pulmonary Endometriosis suffer from catamenial hemoptysis.  This is when the Endometriosis implants/adhesions are found on the lung or lung nodules.  This may cause the woman to cough up blood during her menstrual cycle, as well as cause back pain, a “bubbling sensation” in her chest, fatigue, and may obscure lung imaging studies during her menstrual cycle.

How does the Endometriosis get into the thoracic cavity and onto the lungs?  Unfortunately, there are only theories: it spreads through the uterine veins into the venous system, it travels through the lymphatic system, we’re born with it there already, the prostaglandin (hormones) damage the lungs and pleural wall, it travels via the air circulated through the fallopian tubes, there are defects (holes) in a diaphragm which may allow the passage of these cells.  The theories go on and on.

Regardless of how it actually gets to the lungs, many believe that the recurrent hormonal changes that the implants go through during a woman’s cycle may weaken the lung lining, or the lungs themselves, causing the pneumothorax and these issues to occur.

How is it diagnosed?  Diagnoses may be delayed, and has been known to take as long as 8 months or more from the onset of symptoms until diagnosis.  Imaging studies may rule out infection or malignancies, and may be helpful in supporting the suspicions of pulmonary Endometriosis.  Just as surgery is the “golden standard” for diagnosing pelvic Endometriosis, VATS (video-assisted thoracoscopic surgery) is the “golden standard” for diagnosing thoracic Endometriosis.  Some physicians may opt to perform a thoracoscopic and laparoscopic surgery at the same time to search the pelvic and thoracic cavities for Endometriosis.

Thoracic_Surgery-2

But how is it removed?  A procedure called a thoracoscopy is performed, and is very similar to a robotic laparoscopy.  Small incisions are cut along the right of left sides of your upper torso, rather than your stomach.  The little tiny instruments many of us EndoSisters have become familiar with are used in detecting, destroying, or excising Endometriosis in the thoracic cavity. Portions of the lung may also be removed/resected for biopsy. Drainage tubes may be present after surgery and remain during the healing process.

And treatment?  It appears that thoracic Endometriosis and pelvic Endometriosis share the same treatment: hormones. It is believed that it is estrogen dependent.  So Danzanol, progesterone, oral contraceptives, or GnRH treatments are used.  Horrifyingly, I’ve read today that hysterectomies or removing the ovaries “is the treatment of last resort…”  Can you imagine?  Removing your lady bits for something that’s infected your lungs.  I cannot.  The horror.  Especially when there has been no proof that a hysterectomy fully relieves your Endometriosis symptoms…Horror.  In 2005, a 43-year-old woman received a hysterectomy, only to suffer a bilateral lung collapse in 2011.  A thoracoscopy was then performed and Endometriosis implants were discovered and removed from her lungs and diaphragm.  Again, I say : a hysterectomy is not a cure.

And one more thing we already knew: there is no cure.  Whether it be on your lungs, your uterus, your bowels, your urinary tract, your diaphragm, your ovaries, or anywhere else it decides to sprout : there is no cure.  But there will always be hope.  And we are all in this together, regardless of the location of our Endo.

*Updated June 6, 2017*

Resources:

ATS Journals – 2016 publication; Unusual Cause of Pneumothorax

ATS Journals – 2017 publication; A Different Kind of Premenstrual Syndrome

ATS Journals – 2017 publication; An Uncommon Cause of Hemopneumothorax in a Young Female: A Case Report

ATS Journals – 2017 publication; A Vicious Cycle: An Uncommon Presentation of Thoracic Endometriosis

ATS Journals – 2017 publication; Non Catamenial Endometriosis Related Pneumothorax

ATS Journals – 2017 publication; Thoracic Endometriosis Presenting as a Catamenial Hemopneumothorax

Catamenial Pneumothorax : Living with Lung and Colon Endometriosis

Current Thoracic Surgery

Endometriosis Research Center

European Journal of Medical Research

International Journal of Surgery Case Reports – 2017 publication

Japanese Society of Internal Medicine – 2017 publication

Society of Laparoendoscopic Surgeons

Thorax publication

University of Southern California

US National Library of Medicine – 2003 publication

US National Library of Medicine – 2012 publication

US National Library of Medicine – 2016 publication

~ 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

Truth, Theory, or Tall Tale?

causes

Endometriosis begins to develop while you’re still in the womb.

Theory

Although a few recent studies have found displaced endometrioum cells outside of the uterine cavity of female fetuses, there is still a lot of research to be done.  Several people now believe that those of us who have Endometriosis have had it since we were in our mothers’ wombs.  Some believe it’s pre-ordained at birth where our Endometriosis implants will grow and at what Stage (1, 2, 3, or 4).

Unfortunately, there is still no proven cause of Endometriosis, so every “cause” is still just a theory.  Without a known cause, a cure is difficult to even begin to develop.

Resources:

Endopaedia

Reproductive Biomedicine Online

U.S. National Library of Medicine

Sharp Hospital Free Seminar : 03/25/15

Q&A

On March 25, 2015, from 6pm – 7:30pm, Sharp Hospital (San Diego, CA) will be offering a free seminar regarding gynelogical issues (including Endometriosis) and advances in robotic surgery.  There will even be a Q&A session with Sharp’s physicians!  There is also a seminar on March 26th, but I will not be able to attend that evening.

I will be attending.  I know many of you are not in my local area, but wanted to see if you had any questions that you would like me to ask!  Just drop a comment below and I’ll make sure and ask!

If you’d like more info on the free seminar, you can click on their link here.   Let me know if you are going and we can meet up!

Feel Good Friday!

tide-569367_640It’s FRIDAY! Another week!  We made it!

Today’s Feel Good Quote is by photographer and poet, Jaeda DeWalt:

“Healing is more about accepting the pain and finding a way to peacefully co-exist with it. In the sea of life, pain is a tide that will ebb and weave, continually.

We need to learn how to let it wash over us, without drowning in it. Our life doesn’t have to end where the pain begins, but rather, it is where we start to mend.”

For any of my friends, family, Endosisters, or even strangers, who may be enduring some pain right now, whether it be mental or physical, may you find a way to allow it to pass through you.  Push through.  Endure.  Come out of it glowing and ready to move forward, before the next wave. Live.

May you have a beautiful weekend.

Yours, Lisa