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…which is also SO INCREDIBLY RARE. Please, I’ll preface it by saying this is so super duper rare.

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

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.

A 2019 study followed a 28-year-old woman who had complaints of right upper quadrant pain, painful periods, and infertility. All imaging studies came back as normal and the pain resolved on it’s own. Two months later, she was hospitalized due to severe left abdominal cramping and a CT scan found something wrong with her sigmoid colon. Surgery revealed adhesions and Endometriosis on her sigmoid colon and appendix. Three months later, she was seen due to “sharp stabbing chest pain” behind her breast bone, which “intensified with coughing, lying down, and” taking deep breaths. A CT scan showed fluid on her lungs. A chest scan done the next day also showed fluid in her pericardial cavity (the area around the heart). That same day, she collapsed; this was Day Three of her period. She was rushed into surgery. Bleeding lesions were found within her right lung, an lesions were also found on her pericardial lining. Pathology confirmed the lesions were Endometriosis.

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 people 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 patients 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.  Just one more thing for us to worry about…

What did I learn today?  It’s scary knowing that patients 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).  Remember: it’s INCREDIBLY rare. I cannot stress that enough. 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

(Updated September 13, 2019)

Resources:

Biology Online

Cardiovascular Surgery International (Article, 2019) Cardiac Involvement Resulting from Thoracic Endometriosis

Endometriosis.org

Heart.org

Mayo Clinic

Merck Manuals

Medical Dictionary

Camran Nezhat, M.D., FACOG, FACS

Human Reproduction – (1996; Article) Theories on the Pathogenesis of Endometriosis

Neurology.org

Rutgers

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

Videosurgery – (2012; Article) Pericardial, pleural and diaphragmatic endometriosis in association with pelvic peritoneal and bowel endometriosis: a case report and review of the literature

Journal of Clinical Pathology– (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