Endometriosis is not restricted to your pelvic cavity.
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.
~ 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
If you live in the San Diego area and are interested in attending a monthly support group, some of us EndoSisters have been meeting since January. For information on when and where our next support meeting will be, and to RSVP, please click here: https://bloominuterus.com/support-group/ or click on the “Support Group” link on in the upper-right of this screen.
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.
The 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!
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 for 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.
A 37-year-old woman was admitted for treatment in 2010 for shortness of breath, chest pain, and coughing, which would usually come about during her period. She had previously been diagnosed with Endometriosis and had always suffered from painful periods and sex. Her mom, sister, aunt, cousin, and grandmother all also had Endometriosis (whew!). Also, her current complaints breathing issues had been an ongoing issue, but blood and hormone tests yielded no answers. She had several imaging studies (x-ray and CT) on her lungs, as well as an abdominal examination. Her pelvic examination and ultrasound were painful, and her CA-125 levels were elevated. They suspected a return of her Endometriosis. A secondary CT scan of her chest cavity led to the further suspicion of the presence of Endometriosis lesions in her pleural cavity. VATS surgery was performed and the lesions were excised. Biopsy confirmed the lesions were Endometriosis – and she was diagnosed with pulmonary Endometriosis…which vindicated all of her prior chest complaints.
In March of 2018, a study was published in BMJ Case Reports. A 34-year-old woman had complained of shortness of breath for the past year, as well as rectal and vaginal bleeding, and a mass in her abdomen. Imaging studies revealed a partial pneumothorax and a lesion along the pleural cavity. The lung collapse was repaired and a VATS surgyer was performed. The lesion was biopsied and came back as Endometriosis.
Imagine being 14 years old and enduring multiple lung collapses and not knowing why. Well, one unlucky teenager did. A 2018 study reviewed the case of a 14-year-old girl who had suffered from nine…yes…NINE…collapsed lungs over a two year period. The first visit to the hospital, she complained of chest pain and difficulty breathing, but her vitals were normal and she “was in no acute respiratory distress.” CT imaging was normal, other than the moderate collapse. She was treated with a tube to drain fluid from her lung. As the years progressed, two of her lung collapses were on her right lung and the remaining seven affected her left lung. Five of them occurred while she was on her period and four occurred after her period had ended. She underwent a VATS surgery, but nothing abnormal was found. Due to the timing of her periods and her pain, she was referred to gynecology for suspected thoracic Endometriosis. She was placed on hormonal therapy and her lung collapses ceased to occur, even three years later. Even though the Endometriosis lesions were not visualized, she was given a clinical diagnosis of thoracic Endometriosis.
Not all women who have catamenial pneumothorax (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.
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.
In 2018, a study was published about a 46-year-old woman who had a prior diagnosis of pelvic Endometriosis, as well as fibroids, had multiple visits to the hospital due to fluid build-up in her pleural cavity. In the past six months, she had complained of right-sided chest pain, difficulty breathing, and a cough. She had been given antibiotics and diagnosed with a possible case of pneumonia. When her symptoms did not resolve and appeared around her menstrual cycle, imaging studies were performed and found some abnormalities along her pleural lining. A thoracentesis was performed, which is a procedure to remove some fluid from the filled cavity and it was found to be dark, bloody fluid. They suspected some sort of chronic inflammation. She eventually underwent a VATS surgery and was found to have endometriosis lesions on her diaphragm. She was diagnosed with thoracic endometriosis and treated with birth control pills after the surgery. No follow-up results were published.
Another 2018 study is about a 33-year-old woman who went to her primary care physician because of several days of chest pain to her right side as well as difficulty breathing. She was previously diagnosed with Endometriosis and had been treating with birth control. An xray of her chest found she had fluid buildup in her right lung pleural cavity. It was presumed she had pneumonia and was given antibiotics. She received a referral to a pulmonologist and was admitted to the hospital. A CT angiogram confirmed the fluid in the right pleural cavity. A procedure known as a thoracentesis was performed and they removed 1,500 ccs of bloody fluid from her pleural cavity. That’s roughly 50 ounces! The biopsy tests were not alarming. In the following weeks, she had the procedure repeated multiple times to remove new fluid build-up. Finally, she had a thoracoscopy done to look inside her pleural and thoracic cavities. It all appeared normal, but a random biopsy of pleural lining was conducted. The biopsy came back as Endometriosis and she received her thoracic Endometriosis diagnosis. Unfortunately, the study does not discuss her subsequent treatment or how she fared afterward.
A 2019 study was of a 29-year-old woman who had a four-month history of coughing up blood while on her period. The first or second day after her period, she would cough up blood. At one instance, it was estimated she coughed up 5 ounces of blood (that’s a standard glass of wine)! She had no thoracic pain, no trouble breathing, no other cough, no fever. A CT scan showed fluid shadows on the lobe of her right lung and fibrous lesions on her left lung. She underwent thoracscopic wedge resection and they removed a small portion of her lung lobe. They discovered some lung adhesions, as well stagnant blood. A biopsy confirmed their suspicions of thoracic Endometriosis. She did not cough up anymore blood (follow-up was four months after the surgery).
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.
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.
~ 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
Endometriosis begins to develop while you’re still in the womb.
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.
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!
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.
Many of you have read my blog entry Stress Levels May Affect Endo, which can be found here. In that blog, I mention Dr. Caroline Appleyard, her colleagues, and their research. Dr. Appleyard and Dr. Flores Caldera have agreed to answer some questions I’ve posed to them. Both doctors are incredibly busy; however, have still managed the time to answer these questions!
Q&A Session with Idhaliz Flores Caldera, Ph.D.
Do you have Endometriosis?
Yes, I have laparoscopically confirmed endometriosis. It also runs in my family – my two sisters have endo too.
If so, do you mind sharing a bit of your own story and journey? If not, what got you interested in studying Endometriosis?
I was diagnosed with Endo at 28 y/o, although I had painful periods all my life, and suffered from several sudden bouts of severe pain episodes that required emergency hospitalization, but no one knew the cause. After my diagnosis, I suffered 8 years of infertility due to Endo. I have tried all available treatments and have undergone 4 surgeries, but the disease kept progressing. As a molecular biologist I started wondering what was the cause of Endo, whether there was research about molecular mechanisms underlying this disease, but I noticed that back in 1994 there was very little research done on Endo. I decided to apply my knowledge and expertise to understanding my own condition. I applied for and obtained NIH funding to study the epidemiology, molecular biology and genetics of Endo. I have conducted research on Endo non-stop since 2001. I have been fortunate to have collaborators from other fields (physiology, neuroscience, genetics, pathology, statistics, psychology and public health specialists) who have joined me in these efforts. We have now over 10 publications in the field and more coming, and close to a hundred presentations at national and international scientific meetings, including the World Congress on Endometriosis.
There are so many theories regarding the cause of Endometriosis. Which theories have your studies caused you to focus on as the cause?
I have been interested in identifying the genetic factors involved in endometriosis (we showed that there is a genetic component in chromosome 10 associated to endo in the Puerto Rican population).
Also, I have researched the molecular mechanisms that could explain the attachment, survival and growth of ectopic endometrium that would lead to lesions (Sampson’s theory).
Do you feel that Endometriosis symptoms can be controlled by diet and supplements?
I can’t provide hard facts on this since our research is not focused in this area. However, there are some reports in the literature supporting a beneficial role of high vegetable/low fat diet, of omega-3 supplements and also of certain vitamins (not as supplements but directly from food sources – look for studies by Missmer et al – for endometriosis symptoms. Anecdotically I have heard patients state that changes in diet have helped with symptoms.
How do you feel about hysterectomies as a cure for Endometriosis?
I can’t comment since this is a very clinical question beyond the scope of my expertise. However, I have heard reports of women who continue suffering from symptoms after the hysterectomy. In addition, it is important to note that pelvic pain can be due to many other causes which need to be ruled out.
You’ve both worked on the stress-related Endometriosis studies. Thank you!! What other studies are you/have you worked on regarding Endometriosis?
We have researched the genetic basis of endometriosis, the discovery of non-invasive (blood, serum) diagnostic biomarkers for endometriosis and potential new targets for therapy using cell lines and animal models. We have also researched the impact of endo symptoms on quality of life, work productivity and health insurance costs.
Do you plan on conducting human studies regarding the stress and Endometriosis relationship?
We are very interested in continuing our research on the effects of stress on endometriosis in human subjects. It is important to confirm our findings using the animal model in humans. I would be very interested in testing how stress management can influence the symptoms and the quality of life of patients. Also, to explore what coping mechanisms are most effective to deal with symptoms and improve quality of life.
Where do you see medical care and treatment headed for Endometriosis over the next 10-20 years?
I would like to see centers of expertise in each country, where patients can be managed through a multidisciplinary team of experts that include not only medical professionals (gynecologists and other related specialties such as reproductive endocrinologists), gastroenterologists, urologists, physiatrists and pain management specialists, but also allied health, psychologists, nutritionists and which incorporate stress management techniques.
I would like to see more research on non-hormonal, targeted treatments for endometriosis that have less side effects and do not preclude women of keep trying to get pregnant if they so desire. I think there is a lot more to be done with immune-based therapies, and with small molecules that specifically target cell signaling mechanisms shown to be aberrantly regulated in endometriosis. There is a lot to learn and take from the cancer research field, as endometriosis and cancer share many of the same molecular pathways.
Any words of advice for Endometriosis sufferers who may be reading this?
Don’t take your symptoms lightly – they are a matter of concern; seek for different alternatives to alleviate pain and/or infertility. Don’t be afraid to ask questions and to get second or third opinions.
Document your symptoms; learn what helps, what makes them worse. Seek other specialists and alternative medicine approaches. Make relevant changes in lifestyle that will improve health overall and the symptoms of endometriosis also, including eating a healthy diet, maintaining a healthy weight, doing exercise and getting sufficient rest and sleep, and finally engaging in activities to manage their stress, whatever they may be. And speak up, educate others (especially teens), & volunteer in patient-based organizations. Everyone can help to raise awareness.
What can we do to help you and the medical community?
Increase awareness of endometriosis as a real disease that requires a multi-faceted, long-term and personalized approach for management. To the medical community and the general community, to understand that if you don’t see the pain doesn’t mean it isn’t there; to be empathetic to women suffering from a disease with no cure and limited effective symptom management approaches. To the employers and co-workers, to start a conversation with women with endometriosis who are co-workers to understand their disease and provide avenues to improve their productivity at work during their good days while ensuring they receive appropriate treatment.
If you would like to follow Dr. Flores Caldera’s and Dr. Appleyard’s efforts in Puerto Rico, you may do so by the following:
Facebook: Endometriosis Puerto Rico and EndoTeens Groups; Fundacion de Pacientes Puertorriqueñas con Endometriosis Fan Page
Also, if you would like to keep apprised of these Question and Answer sessions, you can follow them by clicking here. I will update them as regularly as I receive any further feedback from Drs. Appleyard and Flores Caldera.
I would like to personally thank Dr. Flores Caldera for taking the time to thoroughly review and respond to these questions. And for sharing her personal struggle with Endometriosis with us! Together, we can help spread awareness, education, and moral support. We are not alone. We are a mighty force!