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.
A 30-year-old nurse from Nigeria complained of chest pain and had an x-ray done. It showed a collapsed lung filled with both air and fluid; she received a chest tube to drain the fluids. A subsequent CT scan showed nodules in her pleural lining and they suspected Tuberculosis. A VATS surgery was done and a biopsy came back as endometriosis and she was prescribed birth control pills. She suffered two more similar collapsed lungs during two subsequent periods. Another VATS surgery was performed, which discovered more lesions and “small perforations of the diaphragm.” She treated with a GnRH analogue to prevent her periods. The study does not mention her prognosis or well-being after the GnRH treatment.
Even post-menopausal women can still suffer from Endometriosis-induced collapsed lungs. Never let a doctor convince you that Endometriosis “disappears completely” after menopause. A May 2020 study in the General Thoracic and Cardiovascular Surgery journal was of a 51-year-old woman who presented with chest pains and difficulty breathing. The chest x-ray revealed a collapsed left lung. Her lung was drained of fluid for seven days in the hospital and she was released. Nine days later: she returned with another collapsed lung. She was admitted to the hospital, the chest tube was reinserted, and surgery was planned. Three days later, she underwent a VATS procedure and they discovered a bleb (section of air between lung and lining) on her left lung, as well as “blueberry spots” on her left diaphragm. The spots were removed, and the section of blebbed (I have no idea if that’s how I’m supposed to say it, but it made me giggle) lung was removed. The lung tissue was confirmed as Endometriosis, but the blueberry spots from the diaphragm were not.
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 Taiwan in 2013, a 49-year-old woman went to the doctor due to chest tightness for the past week, including shortness of breath and headaches. She had no history of illness or painful periods. Prior ER visits found nothing wrong. A physical examination revealed she had a right collapsed lung. For the past three years, she did have a history of spontaneous pneumothoraxes. The first and second time, her lung was drained of fluid and she was sent home. This time a thoracic surgeon resected and biopsied a portion of her right lung, found Endometriosis, and referred the woman to gynecological care. A physical exam and ultrasound of her pelvis came back normal. She underwent a laparoscopy and was found to only have Endometriosis lesions on her diaphragm. These were resected, biopsied, and a confirmed thoracic Endo diagnosis was achieved. There was no evidence of further pelvic Endometriosis. She did not undergo hormone treatment and was symptom-free five years later.
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).
Another 2019 study of a 37-year-old woman had a history of catamenial hemoptysis. Her surgeons scheduled her thoracoscopy around the time of her period, theoretically so the lesions were very visible. Inside, they noted that the pleura lining of her lungs near the lesion had turned a yellowish-hue. They excised all visible lesions and she remained symptom-free 2.5 years after surgery. The authors credit the CT-guided marking, the video-assisted thoracoscopy, and the timing of the surgery with her outstanding results.
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.
And yet some women with thoracic endometriosis suffer from collapsed lungs while not on their period. A 2019 publication in ATS Journals was of a 33-year-old woman who had recurrent collapsed lungs. A PT scan was negative for any masses or lesions around her lungs. She had a VATS surgery, where she underwent a resection due to adhesions, lesions, hemorrhagic deposits, and “tiny diaphragmatic holes.” Biopsy came back as endometriosis. Her diagnosis was a bit more challenging for thoracic endometriosis as her symptoms did not coincide with her period.
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.
*Updated September 1, 2020*
Resources:
American Journal of Respiratory and Critical Care Medicine – 2016 publication; Unusual Cause of Pneumothorax
American Journal of Respiratory and Critical Care Medicine – 2017 publication; A Different Kind of Premenstrual Syndrome
American Journal of Respiratory and Critical Care Medicine – 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
American Journal of Respiratory and Critical Care Medicine – 2017 publication; Non Catamenial Endometriosis Related Pneumothorax
American Journal of Respiratory and Critical Care Medicine– 2017 publication; Thoracic Endometriosis Presenting as a Catamenial Hemopneumothorax
American Journal of Respiratory and Critical Care Medicine – 2018 publication; Catamenial Hemothorax a Rare Case of Recurrent Pleural Effusion
American Journal of Respiratory and Critical Care Medicine– 2018 publication; A 14 Year Old Female Adolescent with Recurrent Pneumothoraces
American Journal of Respiratory and Critical Care Medicine – 2019 publication; Recurrent Non-Catamenial Hemopneumothorax Secondary to Diaphragmatic and Pleural Endometriosis
American Journal of Respiratory and Critical Care Medicine – 2019 publication; Unusual Cause of Recurrent Hydropneumothorax in a Young Woman
BMJ Case Reports – 2018 abstract; Rare Case of Thoracic Endometriosis Presenting with Lung Nodules and Pneumothorax
Catamenial Pneumothorax : Living with Lung and Colon Endometriosis
European Journal of Medical Research – 2013 article; Endometriosis of the Lung: Report of a Case and Literature Review
General Thoracic & Cardiovascular Surgery – July 2019 abstract; Resection of Intra-Pulmonary Endometriosis by Video-Assisted Thoracoscopic Surery Under Pre-Operative CT-Guided Marking Synchronized with Menstrual Cycle
General Thoracic & Cardiovascular Surgery – May 2020 article; A Case of Thoracic Endometriosis-Related Pneumothorax in a Menopausal Woman
International Journal of Surgery Case Reports – 2017 article; A Case Report of Thoracic Endometriosis: a Rare Case of Haemothorax
International Society of Pleural Diseases – 2018 publication; Review Thoracic Endometriosis
Japanese Society of Internal Medicine – 2017 article; Pulmonary Endometriosis Which Probably Occurred through Hematogenous Metastasis after Artificial Abortion
Journal of International Medical Research – 2019 article; Case report of pulmonary endometriosis and review of the literature
Radiology Case Reports – 2017 article; Catamenial Pneumothorax Caused by Thoracic Endometriosis
Society of Laparoendoscopic Surgeons
Thai Journal of Obstetrics & Gynaecology – 2020 article; Pulmonary Endometriosis: A Case Report
Thorax 2008 article; Thoracic Endometriosis: Rare Presentation as a Solitary Pulmonary Nodule with Eccentric Cavitations
University of Southern California
Journal of the Society of Laparoendoscopic Surgeons – 2003 abstract; Extraperitoneal endometriosis with catamenial pneumothoraces: a review of the literature
Journal of the Society of Laparoendoscopic Surgeons – 2012 article; Bilateral Thoracic Endometriosis Affecting the Lung and Diaphragm
Nederlands Tijdschrift Voor Geneeskunde – 2016 abstract; Thoracic endometriosis with a specific manifestation
~ 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 
How awful. I knew it could travel to other organs but that must be very scary! I hope mine never spreads to the lungs. Good luck to everyone out there who not only is suffering with the more common endo problems and pains but these serious and more complicated issues. And thank you for raising awareness- I will certainly remember this if I ever do have any problems with my lungs in future 🙂
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Likewise on the “will certainly remember this…” Very scary! My doc said he saw Endo on my diaphragm, so this was a big eye opener when I was researching this today. Thanks for reading! And taking the time to offer feedback, and encouragement to other EndoSisters! Yours, Lisa
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Did they find it on your diaphragm during a normal lap? I never really know what areas they can get to in the operation but in sure my surgeon never looked very far!
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my doctor keeps me on birth control around the month so I don’t have my period so things like that don’t happen when my cycle comes up am I the only one who’s Dr or Obgyn has said that to them that having their period Makes thinhs flare up and its not a good thing to have your period when you have endometriosis unless you want to have children right then.
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I am suffering, I was given a treatment due to no diagnoses of endometriosis and the treatment caused severe bladder bleeding because no one told me how severe my fibroids were two years prior that I feel had caused my health to consistently decline. I think it ruptured some of the fibroids as I passed a 1″ white mass in my jet black goopy blood. I went through months of over 20 ER’s, had seizures and blackouts from the constant pressure and swelling that started at my pelvic area and over time has spread into my lungs and right groin. My pain is something I can’t describe but quality of life is in the toilet. Doctors were acting very odd with me, not responding shipping me around, testing me over and over again. As it turns out they first tell me I need immediate surgery and they will have a urologist, gyn, hernia surgeon to do exploratory laprascopy and fix all damages, but as I went to schedule doctor was just plain odd. As months went by and I was repeatedly injured by procedures done as so-called presurgery testing, I knew something was really wrong. My singing voice trashed by an endoscopy that left me unable to talk for three months and later has me with a chronic sore throat and laryngitis if I talk any length of time (feels like I have an infected right gland infection that never goes away), then I began bleeding from my bowels sporadically after having a colonoscopy where they removed a polyp and just left behind some internal hemroids (endometrial leisions?????), then I get this cystoscopy and I asked them to stop as soon as the scope entered because I literally felt them ripping my urethra apart, it sent me into uncontrolled shaking and vomiting after it was done. I have a sensation now of my bladder, bowels and vaginal area all being one opening if I go to the bathroom. I have constant pain and pressure and can no longer empty my bladder. I complained of having a sense of an infection that felt like it started in my bladder, moved into my bellybutton, then into my stomach, up my esophagus and into the gland in my neck on the right side. Not one out of many doctors would acknowledge anything. On top of all this going on, I seem to have chronic issues with white blood cells, protein, keystones, and billuruben. They constantly find bacteria and mucus in my urine and do nothing (mind you I had an enterrococus infection that started with bleeding, no one treated it for a month of agony I was left in until I started vomiting uncontrollably with white foam). Since then I was placed on seven doses of antibiotics but nothing ever changes for very long. Then I tested twice for false positive pregnancy tests only in my urine. So as all this is going on I get imaging showing adenomyosis, a uterine fibroid and another post uterine fibroid that seems to be growing on each new imaging I have done, but I get the same, oh you are in menopause it’ll all go away. It is NOT going away, a few months later I have a cyst forming on my liver, then a few months later a cyst forms on my gallbladder, I start have severe blockages and trouble breathing so I got what I could afford by doing hyper baric but run out of money. It did help me breath, but swelling in abdominals/pelvic area got worse. Go back into more ER’s again told they are going to do surgery, but never happens. Now I have lung scarring. I collapsed in one ER from losing the feeling in my legs from a bowel blockage that felt like I ripped something more than the umbillical hernia I already had to the point I have a constant feeling my insides are hanging out, it is a horrible sensation. As of this month I went to get my original ultrasounds (by the way I had to fight to get all my records released after a doctor intensionally destroyed an initial report so they could minimize my condition to then refuse me surgery so I would suffer more). To my shock the 1mm fibroids my gyn said would go away from menopause, well they were NOT 1mm, I had multiple fibroids and two were almost 6cm a piece. I then learn imaging during my biopsy showed the typical red raspberry and white scarring of severe endometriosis, yet they just keep telling me a bunch of crap about endometriosis not being in that area. Okay folks here’s the deal, I’m pretty sure in severe forms it can go anywhere, you feel like something is gnawing at your insides rotting you from the insides out, it is the most insidious pain you will ever know. They will tell you oh try this, do that and ignore you when you tell them this is NOT working. I feel doctor make every excuse they can to leave you to suffer and the worst part is, my symptom evolved over several years, my complications in surgery could of been avoided had someone just gone in and done something once they found all the fibroids. Worse yet my whole family has been able to get surgery for this and they are all pain free, but me, I have lost my entire savings, I am losing my home soon, I can’t function, my skin is a mess, I look four months prgenant and I’m uncomfortable all the time. I do not believe anymore in doctors being compassionate, I do not believe people care as I stumble out to my car from an ER crying after thinking they would finally consider the right thing, today they sent me off with oh medication to mask what is growing in my stomach… R U kidding me how many more years, isn’t twenty enough? Isn’t bleeding through my clothes clotting and cramping half my life enough. I am angry, I can even shut up anymore because I am too outraged at hearing another story about “oh thank God I found this doctor and he got rid of my endo and gave me back my life.”. This is my experience, if you have money you get help, but if they took it all and you still aren’t fixed you become an experiment, where you are passed around from specialist to specialist who can’t even begin to admit correctly the horrible state you arrive in. They place you on drug after drug and as you get worse they practically laugh at you and tell you to go see a psychologist! I rather be uethanized at this point in time then wake up in this nightmare I am in. I hate human beings in a way I have never known and I will explain why. How dare the medical community continues to use their power to let someone rot away when I don’t know a woman in this world who doesn’t understand what they are feeling and know when it’s time to op for a surgery for relief. After all… I’ve watched men know everything my whole life. I am PO’d folks beyond mad, literally raving like a lunitic p____s’d off!
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My surgery was a robotic lap to remove cysts from my ovaries. It was just supposed to be an hour & a half under the knife. My wonderful surgeon opened me op and immediately saw evidence of Endo. Bless the man…he took 4 hours to thoroughly go through my body, locate and remove any Endo & adhesions that he could. I’m so grateful that he even knew to look up north. Found it on my liver, too. So I guess it all depends on who’s lookin’ and how deep they care to go, eh? Have you only had the one lap? When? Any recurrent symptoms since? blah blah blah, so many questions 😉 PS – I love your avatar.
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^ My story is very similar! An hour long surgery turned into 4 hours. We were both (the doctor and I) shocked by the severity of adhesions, as neither of us suspected endo at all. Thank you for sharing the information, scary though it is.
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I’m so glad that your doctor knew what he was doing when he opened you up and saw it and was able to remove it while you were under, instead of having to schedule a 2nd surgery 😀 YAY!
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Did the woman you reference who had a bilateral lung collapse in 2011 have her ovaries removed in 2005 or just her uterus?
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According to the study, the woman had a total hysterectomy in 2005, so her uterus and cervix were removed. Unfortunately, the study doesn’t reference the status of her ovaries. You can read the study here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3407434/ Wonderful question!
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I have had my cycles stopped since 2009. I still had laparoscopy surgery 2 years ago. Stopping my cycle does me no good. Good luck
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My symptoms didn’t even start until about 18-24 months after my total hysterectomy. The flares in the lungs doesn’t have to correlate with your cycle. Other than that note great information!
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Very true, I am on continuous birth control now since August 2015. I have pelvic, rib, and right sided chest pain almost everyday now.
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I am 6 weeks post op from VATS procedure to remove endometriosis in right lower lobe. I had hemoptysis with almost every period for about 3 years. The surgery was the hardest thing I’ve ever gone through and I’ve had several abdominal surgeries for endo, however I am glad I did it before it became life threatening. Has anyone else gone through this?
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Krissy, I’ve posted your question to our Facebook page hoping to elicit more responses for you! Check it out here, if you have Facebook. If you don’t, let me know and I’ll paste the responses here for you. https://www.facebook.com/bloominuterus/posts/868101196614381?comment_id=868132223277945¬if_t=share_comment
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I m suffering from this disease past 4 years and i didnt even knew about it… Ive known it since 2 days.. I already had a lung surgery this year.. the doctors took it as a contagious disease maybe they’re not aware of this disease … I only cough up blood when i m on my periods i m only 17yrs old…. what can i do to cure this completely??
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Unfortunately, Shailja, there is no cure. They can operate to remove the Endometriosis implants and scar tissue, but it may grow back. They may put you on birth control pills, injections, or an IUD to control your hormones. Many women have found some relief this way, but many have not. You can alter your diet to cut out inflammatory foods like sugar, red meat, or caffeine. I am so sorry for your diagnosis. Just know that you are not alone in this.
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Hello.
I realize this post is old but I am trying to connect with others that have similar symptoms as my daughter.
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I have been suffering with this for years. I didn’t know what this was. At fort I had a sticking pain. I thought it was angina.thrn the pain changed to bubbles popping like in my chest. Now unfortunately I have chronic inflammation in my chest most days all days.but not to long ago I started realizing that the severity of my inflammation came about a week or so before my period or during my period or just after it left.yesterday my chest was on fire a 7-8 out of 10 I would say. My period came today and though i still jave the inflammation on my keft side it is not asninflammaed as yeterday.i went to my doctor and while talking I told her that it corresponds with my period and she mentioned this disease. I have to do a high resolution c.t scan and she what they find.
Honestly I would be happy if I found out it was this. I’ve searched and searched for an answer to why I’m having this chest pain.finally putting a name to the problem would be a welcome change and take it from there. Best of luck everyone
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Best of luck to you, Aloma, and please keep us posted!!!
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I was diagnosed with endometriosis August 6th 2015. I’m currently in the ER due to experiencing severe pain in my stomach, lower back and neck. I have a very hard time walking due to the pain. Hoping something can be done for the pain. Anyone else who suffers from endometriosis just know your not alone in the fight.
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I started seeing a chiro weekly and extra when needed for my period pains. My lower back always hurts and gets out of whack 2 days before I start… and continues until after day 1. I go in for an adjustment and instantly half my pain is gone! Some months ae worse than others and I have a plethora of pain killers, but going to the chiro helps a ton too! …I’ve been battling this for 15 years now although wasn’t formally diagnosed until 2012 when I developed a lump and couldn’t walk until the lump (size of large bouncy ball) was removed from just above my uterus. ..that was a fun call to get (took a week for them to test and verify it was endo).
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Can this happen to younger women? (I just turned 26.) My endometriosis has recently gotten far worse, and I’m only allowed 2-3 periods now. However, I’ve been having some problems with random chest pain (it started last year, I think) when I was having more regular periods. The doctors told me I just had bad reflux and had to deal. But it sounds exactly like what you’re talking about. And since I haven’t had a period for a few months, I still get chest pains, weird shortness of breath, and a rapid heartbeat, but it’s not like it was before. Before, the pain was so bad I barely slept for three days. I’m just a little worried now.
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Never hurts to talk to your doctor about it. I know several readers who have Endo on their lungs.
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Thank you!
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Janae, thank YOU for sharing your experience! It’s mind boggling to me how often symptoms are discredited or ignored. And I am SO grateful you’ll be going to the Center for Endometriosis Care soon!! Please keep us posted on your recovery and how the operation went. I am told time and time again that Endo on the lungs is so exceptionally rare that I’m just scaring women into believing they have it. Well, I don’t believe it’s as rare as we are told. Women like yourself (AND umbilical endo!) prove that. I think it’s just lesser diagnosed…or paid attention to.
Wishing you luck on your upcoming procedures! And recovery ❤ Yours, Lisa
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❤ Again, please keep us all posted. And if you'd like, you can feel free to Share Your Story, which will be published here and shared on Bookface. If you'd like to wait until after your excision, hysto, and recovery, feel free. 🙂 But…no pressure, rush, or obligation. I'm just so proud of you for hunting down other Sisters, and getting into The Center! https://bloominuterus.com/share-your-story/
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I LOVE that idea!!!!!!!! Thanks, Janae! ❤
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This is what we think has been going on with me for DECADES….
When the endo isnt treated i am an acute asthmatic….and during my cycle I am prone to opportunistic bacterial pneumonia infections…..my immune system takes a complete beating….hormone treatments keep me out of hospital the depo for 9 months kept me functioning like a perfectly normal person even throughout devastating black Saturday Bush fires when we were surrounded by 5 fire fronts and the sky went black and rained embers on us which should have landed me in hospital, but didnt because the treatment worked…..i have had symptoms for 20 odd years in relation to my lungs….diagnosed with asthma and COPD and all symptoms vanish when the endo is properly treated…..
But even after approaching 7 surgeons i cant convince anyone to look. Or that it is a possibility….
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Keep trying, hun. Are you in the US? What about writing to one of the supposed Endo experts and seeing if they’ll look at your case file?
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Australia….general attitude is that I have 3 kids so why treat it……
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I wish they would stop dismissing this! I’m so sorry 😦 But *yay* on your kiddos!
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my kiddos are awesome…3 girls…all at high risk of endo…we dealing with the first years of puberty with all 3 of them….welcome to read about them on my blog
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it makes me very very very very very sick and has landed me in hospital often enough…
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All I can think of is keep trying to find a doc who will listen to ya.
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Wyvernsrose, Mine presented the same way. “Pneumonias” started about 5 years ago. Just started Lupron. Found 2 complex cysts in my lung that pulm wants to biopsy. I am stalling. Want to see if Lupron works first.
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At this i just need them to look they are refusing too. The mirena hasnt stopped my cycle completely i still get spotting and the whole bus load of lung issues with it.
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In 1988, I had endometriosis surgery. I was 28 yrs old at the time. It was so thick that the laparoscopic procedure the Doctors tried to perform would not work, so I received a bikini cut. The endometriosis was so thick throughout my abdominal cavity, covering almost all my organs, even on the lower lobes of my lungs. Even though I had a total hysterectomy at 34 yrs of age, I don’t believe for one moment that the removal of the uterus & ovaries removes all the endometriosis totally. I was placed on Danazol for 6 months. Today I am 56 yrs old and still suffer from chronic pain & fatigue. Just like cancer cells that continue to grow and spread, I believe endometriosis is capable of doing the same!
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Kathleen, I am so sorry you are in pain. 😦 And I agree completely with you…
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From what I have learned through Nancy’s Nook Endometriosis discussion and education they are now finding that we are born with the areas the disease will infect. A study done through stillborn infants that had the growths in each of the areas it would reside in including areas outside of the pelvic region.
While it cannot spread with time it can infiltrate deeper, destroying tissues and organs in the process. It also steadily gets worse with time. I’ve had this since I was born, I’ve had a lot of the symptoms without even knowing it. Always sick, strange alergic reactions with no known cause since I was a child, extremely painful periods since age 12, and rib pain that occured in my late teens.
Over time I have steadily gotten worse. Last year being the turning point and what lead me to finally have a diagnosis. It started in April 2015, my painful period pain became even more painful. It tested my sanity, debilitated me. And at the time I was bleeding for 5 weeks straight going through super tampons almost every hour. The scariest part was the blood clots, which were the size of my palm.
I don’t remember if I had any rib pain at this time I was pretty preocupied by how terrible the pelvic pain was. Fast forware to August 2015 I had my first disgnostic ablation procedure done. They found the disease everywhere, including my bowels. I was told I was the worst case they had ever seen.
I was thankful for 5 months of mostly pain relief but the pain crept back this March 2016 and with it so did the rib pain. I have been tracking my symptoms in a journal and was surprised to see I have pain now almost every day. My symptoms usually consist of pelvic pain, pain in one or both sides of ribs, right sided chest pain, right shoulder pain, intense upper back pain (esspecially in my shoulder blades) and now some more strange symptoms.
Last week I had decided to go off my continous birth control (northindrone) my thought was maybe this was adding to the pain because in a recent survey they found half of lung collapses occured outside of the mentrual cycle while on continous birth control. Well a few days off of it I had felt what I can only describe as someone squeazing my right lung and not being able to breathe. It lasted aboit 10 seconds but was still scary. Then 2 days later I felt what felt like a bubbling sensation around my left lung. This occurred again yesterday.
I am currently doing everything I can for myself, following the endo diet religiously, natural remedies like essential oils and raspberry leaf tea, and keeping my stress under control. Interestingly enough when I started taking my birtg control again the pain in my ribs and chest lowered signigantly within hours. It’s very hard to read my body right now but still tracking everything.
My hope is that I can see either Dr.Mosbrucker or Dr. Sinervo, both familiar with extensive disease. I have made myself a very educated patient and hope others can do this too 💛.
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I can’t stop crying as I get knowledge and read the experiences so many women are going thru for the first time. learning how incapacitated and uncontrollable it can be. I am the mom of this wonderful gal and I have learned today that she has this horrific disease which is taking her lungs. I can’ t protect my baby. I am so sorry for all you too. Why is it, that it takes so long for doctors to react to it, knowing that this is something that spread to the organs? I have taken health for granted and it is hitting were it hurts me the most: My child. These doctors you mentioned, where are they?
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Myriam, I am so sorry to hear of your daughter’s pain and your torment. One day, one day our illness will get the recognition and research it deserves. And, as my mom says, “there’s a doctor out there somewhere who is looking for a cure.”
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I’m having surgery in August for suspected endo on the diaphragm and thoracic endo. My CT scans have shown nodules on the lower loves of both lungs. I’ve had pain in my right shoulder for years and never thought about it being anything more than maybe overuse. When I started getting severe pain in my chest and shortness of breath she is the one who suggested the possibility of endo there given my history of it. I can’t wait for my surgery. When I have my pain it’s so bad it feels like what I imagine a heart attack feeling. I actually went to the ER the first time thinking that’s what it was. I’m praying it’s not on my heart as well, because my scans did show slight pericardial effusion. 😁 Thank you for what you are doing, and I am trying to figure out the best avenue for spreading awareness with my story and helping others.
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Again, Jamie, I am SO excited for your upcoming surgery! Just to have an answer!!!! Please keep us posted. And you can always share your story here on our blog (at the top in the right corner) any time. We’ll share it here and on Facebook. You can also write your local politicians to try to help spread awareness and press funding for research. You can start blogging, write articles in local e-zines, start a support group in your area, host a walk, the possibilities are endless. You can do GREAT things!! 😀
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Hi Jamie! Just checking up on you – how was your surgery and recovery? What’d they find? How was your recovery? And, more importantly : how are you doing now? Yours, Lisa
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My surgery went really well! I ended up finding out that my right ovary was torsing on its own blood supply causing a lot of the pain I was having. Apparently neither of my ovaries had much support. I ended up having my right one removed. There was also lots of endo that had either been missed at my first surgery, or had come back. Thankfully there was none on my lungs or heart. I felt I was finally going to have relief!!! Apparently that was not the case.
December of last year I had another surgery. This time to remove my left ovary after a large cyst had formed. It was thought to be an endometrioma, but turned out to be a dermoid cyst. Again I had 15 spots of endo that was back!!! I thought for sure this was going to bring relief!!!
I have now been having low belly pain again for about a month. Over the last couple weeks the chest pain and shortness of breath has also returned and progressively getting worse very quickly. I have an appointment tomorrow to try to figure out what is going on. I’m so nervous for the endo to be there again. I’ve already had 3 surgeries in the last 2 years just for endo!!!!
It’s really messing with my mind this time around. I am trying really hard not to let the depression get to me. Thank you for checking up on me! I also started a blog, I haven’t written in a while, but started getting a new post ready just yesterday, so I am hoping to get back into it!
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I’m so sorry to hear your pain is back 😦 That’s been going around with a lot of EndoSisters lately; so you’re not alone in this roller coaster or depression. I wish I could take it all away. Hang in there. I’ve subscribed to your blog so looking forward to following youuuu. ❤
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I was diagnosed with Catamenial pleurisy last summer. After surgery though it turned out my lungs were healthy. It was the bowel spasm-ing from the foods I was eating that was causing inflammation and pain in my left lung! Follow my blog as I embark on a diet reset to find out what foods are causing the pain!!!!
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https://expeditionendometriosis.wordpress.com
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Hi! I wanted to share my experience with all this. Mine is a little backward from what you’ve shared here. For years, throughout my early and mid-20’s I had chest pains. I went to the ER a few times & was always sent home due to suspected heartburn or “anxiety.” It was extremely frustrating because I know my body & knew something more serious was at play. Finally in 2015 (I was 26 at the time) I had an episode that was pretty much excruciating. I researched it and drove myself to the nearest Urgent Care and asked for a chest X-ray. I had a “spontaneous pneumothorax.” Never heard of it before! I was suspecting a serious case of pneumonia or something. My left lung was totally collapsed and they could not get it to re-inflate. I spent about 2 weeks in the hospital and ended up having major surgery (VATS) to remove part of the lung and to adhere the lung to the chest cavity to hopefully prevent further collapses. Beyond the typical major-surgery setbacks and occasional flare ups I’m totally fine now!
Except – flash forward a year. Once I healed up from my surgery my husband and I started trying to conceive our second child (DD #1 was born in 2013). We had unexplained infertility, the doctor said. We were both very healthy & everything was timed properly. In one of the tests done, though, I did show elevated levels of CA-125 (is that the marker for endo? Can’t remember exactly). However, I guess I was asymptomatic. So I explained to my OB/gyn about my Pneumothorax history and that it did seem that some of my problems coincided with my period–I was actually on day 2 of my cycle when I ended up in the hospital the year before! So, she looked at me like an anomaly (which I guess it probably is pretty rare?!) and told me I need to have the lap done.
So, here we are! I hope the lap works and helps us conceive. I had no problems at all with the chest pains while I was pregnant with my daughter, so I’m confident that it really is a temporary cure! I’ve always wanted all the babies, so I’d be OK with just staying pregnant in order to control the endo (assuming I can GET pregnant, that is…). Haha. Anyway, what long term protocols can I take? It’s nice having answers as to what I’ve been dealing with all these years but it’s also kinda upsetting that it’s something that doesn’t actually have a “cure.” Let me tell ya, lung collapses are no joke and it’s a huge pain (literally and figuratively). Does BC help (like once we are dong having babies), or does it just exacerbate the problem? I’m rambling now, sorry.
Thanks so much for the info!
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Hi Jamie! Rambling is good 🙂 Get it allll out! To answer some of your questions (with the best of my knowledge): 1) yes, elevated levels of CA-125 can be considered a possible identifier of Endometriosis, although it’s not a guaranteed answer. Many women with normal CA-125 levels have Endometriosis, and some with elevated levels don’t have Endometriosis. 2) make sure your lap surgeon knows what do to IF you do have Endometriosis – excision is critical – they CUT OUT the lesions and scar tissue rather than ablation/cauterization (burning it off). Think of a melon baller: cut out the bad tissue, leaving the good. Burning just sears the top. 3) expect at least a 2-week recovery…if you’d like more feedback on what recovery is like, let me know. 4) Some women have eased their symptoms with a change of diet, cutting out certain foods/drinks that are may cause hormonal changes or inflammation – look u The Endo Diet in our search feature for lots of info. 5) some women (myself included) may have temporary relief on birth control. I took a continuous pill for a year and a half, only had my period 2-3 times during that time, but my Endometriosis continued to grow and was “worse than before” when I had my second lap last year. Most importantly: hang in there. Keep pushing for answers and for your health! And good luck with trying to conceive!! ❤ ~Lisa
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I was diagnosed with endometriosis of the lung 4 years ago and underwent a total hysterectomy a year afterwards. Prior to my diagnosis, I would cough up blood during my period’s heaviest day – which also lined up with it being usually 3 days in. I would have chest pain, in the same area every month. I was told that a hysterectomy would be best for me since I was already having extreme periods that would last for 10 days, twice a month. Removing my ovaries was supposed to remove the chance of it happening again. I had the procedure 3yrs ago, and although I haven’t coughed up blood anymore, I still have the same chest pain every now and then and even difficulty breathing sometimes. I always tell my husband it’s the same exact feeling but we were told the cells would die off on their own without ovaries feeding them. Now after reading this, I feel relief knowing something could actually still be wrong. It’s not just in my head. Thanks for this write up.
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You are so welcome! Never be afraid to bring it back up to your doctor.
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My Pulmonary (Thoracic) Endometriosis was localized to my Sinus Cavity. Apparently I dodged quite the bullet.
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I am a father of a 14 year old. Over the last two years, she has had a lot of menstrual pain and so has been put on Lo Estrogen which has helped control the cramping to a good degree. We are also lucky she has the most wonderful and communicative OBGYN any woman could wish for. About 2 weeks ago, she had severe pain that happened when she would breath, radiating to her shoulder, etc. She decided to just go to sleep but woke us up at 3:00 AM with even more pain so we went to ER where a chest x-ray showed a small pneumothorax. Some hours later we went home and then consulted the thoracic surgeon a few days later who said it was small and would heal up within 10 days. They did another chest x-ray 48 hours after her ER visit and noticed the pneumothorax did not get worse so no surgery or chest tube was necessary. The surgeon said it may or may not recur down the line. We brought up the event with her OBGYN who said it is very possible it could have been a catamenial pneumothorax as she has another patient that had endometriosis that was not on birth control and she was put on birth control to prevent further lung episodes. I am confused since the estrogen medication is supposed to suppress or control endometriosis, but my daughter is also on a low dose. Anyway, we have entered a new and anxious period in our lives, but we just need to take it bit by bit and move on. I am here to learn more about what others have gone through similar to our situation.
Thanks,
alex
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Alex, I updated the blog entry today to include five new case studies, including a woman who WASN’T on her period when she suffered a collapsed lung due to Endometriosis lesions on her pleura lining and diaphragm. ❤
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My daughter started having what we now know as endo symptoms at age 12, not long after her periods started. We did hormone check to see if they were not in parameters and she went on natural hormones-estrofactors and progesterone cream. This helped for a while, but she always had to go to nurse office at school for Midol for 1-2 days of her period, would be nauseous and have a headache and cramping. About a year later, the cramps were beyond tolerable and Midol wasn’t helping. Went to OBGYN and she said to take Ibuprofen 4 tablets (800mg). Worked for a couple months, then excruciating pain with periods. Went to ER’s with them telling us to go to OBGYN. Made them do ultrasound to check for cysts-clear of those at that visit. Continued to do natural hormone progesterone, but I took her off Estrofactors because I read the link of high estrogen to endo and figured it was making things worse. Helped only a little. Things continued to get worse and she would miss 1-3 days of school with every period. OBGYN wanted to do the pill. I was hesitant due to her having weight issues already. She also didn’t want to do the pill. Finally, at age 15, we went to see my neice’s OBGYN because he was the one who finally helped her with her endo suffering. He took my daughter in for emergency surgery. Staff ridiculed him for doing endo surgery on a 15 year old! They found out we and he were right. He found a moderate amount of endo and removed it. She felt awesome for almost 6 weeks when her first period started after the surgery. BAM! Right back into it all. He put her on birth control. Did nothing. Depo Lupron shots in addition to birth control-no help, constant headache and periods continued. Depo Lupron alone and no help, periods continued. We read a researched what we could find. Went back 5 months later begging for a hysterectomy to at least stop from getting new lesions. My daughter also is the carrier of a muscle disease and didn’t want children. Dr. was still hesitant to remove uterus. Then I showed him pics of her brothers who have the muscle disease and he understood. She had only the uterus removed and cysts taken off R ovary, all endo that had been removed 5 months earlier was back!!! This surgery helped some, but not enough. 4 months later we found Center for Endometriosis Care and had surgery again. Lots of endo, scar tissue and scarred appendix removed, R ovary removed had 10 cysts on it! She has felt much better since as far as abdominal endo. However, she ended up with a headache about 5 days after surgery and still has it 7/8 out of 10 every day (it has been just about 2 months). She is wondering if she has endo in her lungs as well as her brain. Already been trying to get help from local neurologist and Center for Endometriosis Care but no one is helping yet again! She is only 16 and I am so worried about her mental state due to all this pain and problems. She is beginning to feel that no one is going to help her. This has been a 4 year journey already for such a young person 😦
Who should we go see? As in who is the expert for endo in these areas? Lung and brain?
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Hi there. I found this article and came across your post. I am having symptoms of thoracic endo and I am scheduled in 2 months for surgery with the CEC. Can you tell me if you have had any reoccurrence after surgery with the CEC? What was recovery like after thoracic surgery?
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Hello All — a question: Do we know whether endometriosis on the diaphragm or in the lung can affect breathing during normal activity? I had partial hysterectomy last year (with endo found on the diaphragm) and had severe anemia beforehand, but have been feeling much better and have been trying to get fit again, but I simply cannot build up my endurance — because breathing becomes extremely labored with even moderate effort. I have been diligent about exercise, but it is simply not getting better despite 6+ months of effort (I even hired a trainer, thinking I was not pushing myself enough). Anyone else with similar problems? Any solutions you have found?
BTW, although a hysterectomy is NOT a cure, I do need to say that in my case it was a huge positive: I had severe anemia due to heavy bleeding, and my body reacted very badly to contraceptives. Having the uterus removed means that I am functional every day of the month instead of one or two weeks.
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