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)
Cardiovascular Surgery International (Article, 2019) Cardiac Involvement Resulting from Thoracic Endometriosis
Camran Nezhat, M.D., FACOG, FACS
Human Reproduction – (1996; Article) Theories on the Pathogenesis of Endometriosis
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
26 thoughts on “Endometriosis & The Heart”
I found all this information very helpful as my daughter suffers from endo,and,it gives me insight in detail to this delibitating disease and l have most certainely watched as every day she stuggles with her pain,so thank you for your research
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Thank you for being an awesome mother in taking an interest in your daughter’s disease. I’m glad that she has you.
Would Dr.’s be able to detect this with and Echocardiogram?
In several studies, echocardiogram results were normal, regardless of Endometriosis being present.
So how would that be diagnosed. I was just thinking of the lady in the fifties, surely and echo would have shown a tumorous mass.
Let me do some further research into the failed diagnostic echocardiograms and let you know. It may just be the only way to diagnose it is through surgery. I’ll get back to you in a few days.
Thanks, this just scared the pants off of me that it all.
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Me, too. Wasn’t meant to scare, just educate. Endo on the heart is supposedly incredibly INCREDIBLY rare. It was hard even finding any literature on it. But some poor gal or two has had it, so it’s been known to happen. 🙂 I’ll let you know what I come up with
As far as I know they put a tube down your throat, to look at your heart. And I believe they can donthensame test to looker lungs and the whole diagram also.
I have suspected diaphragmatic endo and possible thoracic endo. The surgeon will be performing a VATS to look at my lungs, diaphragm, and heart. That kinda scares me about the lady in the 50s, since I’ve had a lot of the same symptoms. I have gone to the ER more than once with such horrible chest pain and shortness of breath. The pain radiates up my neck an in my shoulder and arm. I truly feel like I’m having a heart attack. I’ve had so many tests done on my heart and most have been normal. I do have one side that is slightly larger, but nothing showed up on the ECHO. I’m just so ready for my surgery and know for sure what’s going on.
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Jamie, I am so happy to hear you are going to have your VATS to see what’s going on. That is the single most empowering step you could do right now. Try to rest easy, dont think about the what-ifs, and breathe. I know, I know; easier said than done. Please keep us posted after your procedure. ~Lisa
I have endometriosis and had two surgeries but chest pain is consistent. I recently had a echo,ECG,blood work and all normal.I still have no answers and now I see its the chest wall area.There are times when I touch/press on a certain area it is painful.Do you think that could be due to endo ?
I wish I knew…does it happen mostly around your periods? And it just gives you one more thing to discuss with your physicians. I’m so sorry 😦
Thank you very much Lisa; very interesting article. I have Endometriosis and quite severe Adenomyosis. I was recently diagnosed with Right Ventricular Outflow Track Tachycardia having suffered chest pain for many years with most recently near constant ectopic beats with bursts of tachycardia. I just had a 6 hour cardiac ablation to cauterise the ‘faulty’ tissues inside my heart. My cardiologist does not know what is causing my arrhythmia but in the back of my mind I am wondering if this is not linked with my endometriosis. During the procedure, my doctor also said the problematic tissues were deeply rooted. Unfortunately they do not take samples to do a biopsy during this procedure and I have not yet met a doctor who see any link between my heart problem and my other conditions. If there is a link between Endo and heart arrhythmia then many women may be suffering without knowing. I hope that one day a reputable doctor will start the necessary research on this subject. All the best. Peggy
Thank you, Peggy, for sharing. I hope your recent procedure helps with your symptoms. And it is my hope, too, that a better doctor will come around and focus on unexplained issues, research, and find a relation and treatment. Yours, Lisa
I am up at 4am with chest pain and pressure, awaiting my EV and ablation procedure to be scheduled to treat SVT – but suspecting something else is going on. I got up and pulled out my estring after reading this article, even though my gyn and cardiologist do not seem concerned about any correlation. After 25 years with endo I am learning to trust my instincts which are currently screaming “Something is not right.”
Thanks for the article, wondering if this is what is going on (have had endo removed from my diaphragm at least twice). Tired of having to constantly research and advocate to be treated, but it’s
the only way.
❤ keep us posted
I’ve suffered from endometriosis for over 20 years (that I think), diagnosed just over a year ago and had a total hysterectomy February 2017 at the age of 40. I was diagnosed with constrictive pericarditis in January 2015 after being hospitalized for 10 days, resulting in open heart surgery in February 2015. That was before being diagnosed with endometriosis, my gynecologist believes that’s what caused the problem. I also suffer from copd and have never been a smoker or around chemicals more than just household cleaners. Thank you for this informative article.
Why do they continue to give estrogen replacement/ based birth control pills to women with Endo? Estrogen dominance is the main culprit in endometriosis and giving more, synthetic adds fuel to the fire!! The pill almost killed me at 24. This is worrisome. I have stage 4 endo and adenomyosis which the endometriosis was mostly excised 4 years ago but still some remains. I have bouts of costrochondritis and it feels a lot like endo pain. My dr has seen kidney strangulation by endo, too. It definitely can be deadly.
Just want to thank you for all of this helpful information! I’ve had Endo for over 20 years now. I stopped counting laparoscopic surgeries around 7 or 8 to excise adhesions and scar tissue. They were forced to remove EVERYTHING piece by piece due to this awful disease! I had a heart attack at the age of 38 and had a stent placed in my LAD that was 95% blocked. To this day, I (after a COMPLETE HYSTERECTOMY) experience constant abdominal pain, avoid sex due to pain and am now experiencing extreme chest pain. All cardiac testing has been normal. I know there is Endo on my bladder and abdominal cavity because I can feel it. I can actually feel it around my stomach area and now I’m concerned that it may be the culprit of my severe angina. Another surgery is scheduled for 2 weeks from now but I am going to speak to my cardiologist ASAP about knowing something is wrong with my heart even though tests thus far have been normal. THANK YOU, THANK YOU, THANK YOU!!!!
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Good luck, hun! And please keep us posted.
Hi! ☺️ This was a great read as I have recently been diagnosed with endometriosis on my diaphragm and in discussions about how to manage as the other side of where my endo is located on my diaphragm is where my heart is located. So difficult to find readings on endo in relation to the diaphragm online. This is a good resource and so sad about the women in your research. Did you have any tips on mentality wise as am finding this so daunting? Hope you are well and thank you also! Xx
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Hey I had it on my diaphragm, too! Fortunately mine actually vanished on its own after 2 years of spotting it on my diaphragm. My surgeon wouldn’t excite is it because of how dangerous the diaphragm could be. As far as mental tips and tricks? Do absolutely anything and everything you can to stay positive. Are you in any sort of good online endometriosis support groups? And I mean SUPPORT. ;))
I stumbled across your blog while searching for Endo on the heart. I was diagnosed 20 years ago (luckily I was fairly young at 17) and have had multiple surgeries for my Endo. It was found on my diaphragm. Had everything removed (ovaries, uterus, the works) 2 years ago. Pain is back. No one believed me. Went in for surgery this summer and my Endo has grown back. I have a relate aggressive form that can grow back all on its own. Lovely. However, my chest pain and heart pain as well as upper abdominal pain has led my doctor to believe my Endo has made its way to my chest. Having surgery this December to find out.
Thank you for your research on this article, it is much appreciated!
I am so sorry, but grateful you pursued and pursued and PURSUED!!!
Please keep us posted ❤