If you’re down in the depths, try to find something to make you smile. A memory, a thought, a thing, a book, a quote, a TV show, a friend, a pet, a game, or even sleep and find it in a dream.
May you find peace.
Blogs I updated this week:
C-Sections & Endometriosis: added a March 2018 study published in the International Journal of Reproduction, Contraception, Obstetrics & Gynecology of a woman who had a large purple lump on her c-section scar that oozed greenish fluid during her periods. Any guesses as to the diagnosis?
Lupron Depot: My Experience: added an update as to how I’m doing three years later, as well as a 2018 study of long-term effects of Lupron Depot use, published in the Journal of Pediatric & Adolescent Gynecology
Lyndsay was 32 years old when she was diagnosed with Endometriosis. Now 37, she lives in Pittsburgh, Pennsylvania, with her beautiful family and wants to share her Endo Journey with us. Lyndsay is one of the rare EndoSisters whose lungs are affected by the disease!
Lyndsay’s Journey: I always had painful periods as a teenager, and into my twenties. I didn’t really think anything of it at the time.
At age 26, I was in a car accident where I was the passenger. The SUV rolled a few times as the driver had swerved to avoid a deer. We climbed out of the windshield, appearing unharmed. Paramedics checked us out and said we looked fine. I followed up with my doctor since I still felt off a day later, but she also said I seemed fine.
It was a little over a year later, I was working out at the gym and had a strange stomach pain. It got worse as the night went on, and I ended up in the hospital. I waited for almost 8 hours before I saw someone in the ER (my vitals were normal, so I was not deemed to be a priority). When they finally were able to check me out, they did an X-ray to see what could be causing my issues. It turned out my diaphragm had ripped open, and my organs had pushed up into my chest cavity, and partially collapsed my right lung. They asked if I had been kicked by a horse (I hadn’t) or if I’d been in a car accident. I told them I had over a year ago.
My issue puzzled the ER, and they sent me into surgery with 3 different surgeons – a general surgeon, a thoracic surgeon, and an ob/gyn. My surgery took over 8 hours and we learned a lot.
It appeared that my liver had a strange ring around it and they said it was likely that during the car accident, the liver was pushed up through my diaphragm and remained wedged in there for over a year. (Note that during that year, my periods were more painful than I’d ever experienced);
The car accident had left one of my Fallopian tubes crushed;
I had endometriosis in my uterus / abdomen;
The liver being shoved into my chest also damaged my right lung leaving it 10% collapsed for over a year.
I came out of surgery with a chest tube in the right side. After a few days in the hospital, they removed my chest tube and sent me home. My chest filled up with blood after I was sent home, and I had a series of visits where they would drain liters of bloody liquid from my chest.
Eventually, I had another surgery on the right side and a chest tube put in to clear up the issue. I spent weeks in the hospital and eventually they sent me home with a portable chest tube device (it has some German name that I can’t recall). The home health nurse that came to check in on my lung issue / chest tube device wasn’t properly cleaning her tools she used to remove the fluid from the device, and after a week at home, I ended up with a pretty serious infection along the chest tube site. I was hospitalized again, and after a few more weeks of treatment, and gradually removing the chest tube, I had stabilized.
Fast forward 2 years. In this time, I got married, and was pregnant with my first baby. The pregnancy seemed to be going well until I hit about 20-22 weeks. I was gaining weight normally, growing the way I should be growing, etc until about week 22. I started to plateau. I also had a nasty cough and started to lose weight. I consulted my ob/gyn (I switched to the practice that was involved in my surgery since I thought they knew the most about my medical history). When I voiced concerns about my weight loss, I was told by one of the female docs in the practice that “you are the type of person who doesn’t like to gain weight”…. I told her she was wrong and I was trying to eat the best food for the baby and at this point was drinking ensure to gain weight. She dismissed my concerns.
Things got worse as my pregnancy went on. I lost more and more weight, got short of breath very easily, and after almost going into labor early, was placed on bed rest for a few weeks until I demanded to be seen to check in the baby (the practice was very dismissive of my concerns – at this point, I was puking, had diarrhea, and looked very emaciated). I demanded to have an ultrasound to be sure the baby was okay. I went into the office and was immediately shipped off to labor and delivery to have my baby. Once I was dilated 9-10cm, pushing out the baby wasn’t so bad. I had a horrible cough, but actually my coughing / gagging helped my body to push my son out of my body. He was born in about an hour and was a 5lb 2oz healthy baby boy and I was so happy.
I felt off physically after I gave birth, but was assured that it was normal to feel that way. I would talk and lose my breath for like a full minute. After persistently asking to have someone help me with my cough/ breathing issue, (they tried to send me home telling me I was fine), a doctor in another department saw my history, knew I’d had collapsed lungs before, and ordered a CT scan. So after my 3 wonderful days with my baby, I was told my lung had fully collapsed on the right side and that I’d need to go into surgery to repair it. I was devastated that I wouldn’t get to spend every minute with my new baby, but knew I had to fix my lung. I had the lung repaired, had 2 chest tubes, and was in hospital a little over a week.
Going home was such a great feeling so that i could reunite with my newborn. The cause of the lung collapse was still unknown at this point, but the guess was something related to the childbirth had irritated it. They estimated that if I got pregnant again, there would only be a 15% chance this would happen again.
Fast forward 2.5 years, I was on vacation and it happened to be a period week. I took Seasonique at the time which allowed for only 4 periods a year which I requested due to how painful they were. I was coughing and I coughed up blood. I started googling “coughing up blood on your period” and for the first time saw an article about how some people had endometriosis in their chest cavities, and could cough up blood during their period.
I called my thoracic surgeon to tell this to him. We discussed options for a bit and his suggestion was basically, “if you want another baby, I’d try to get pregnant soon and then I’d get on a birth control pill and not ever take the blanks, but also consult with an ob/gyn”.
A few months later (thankfully) I got pregnant, and actually made it through most of this pregnancy without issue, however I also went into labor early with this one and gave birth to a baby girl. I did dilate up to 9cm and while they were getting ready to deliver, they noticed she was breech, and I had to be quickly sent into surgery to do a c-section to deliver her. During surgery, my ob/gyn noticed a lot of strange weblike tissue in my abdomen. He cut it all out for me, and sent some to be biopsied. It wasn’t determined to have some endometrial implants on it. My daughter was healthy, but tiny. She was 4lbs 15oz, and while we were all sent home from the hospital together, when she went in for her first doctor visit the next morning, her body temp was too low and she had to be admitted to children’s. My husband took her since I was recovering from my c-section and the same night, I ended up in the ER with chest pain. It turned out both sides of my chest filled up with blood.
My surgeon surmised that if I did have endometriosis in my chest cavity (he thought it traveled there after my car accident), that the surge of hormones during delivery most likely caused the crazy bleeding. He suggested a lot of walking (20 min 3 times a day) could help keep my lungs expanded and push out the fluid. After a few weeks of that, my lungs were back to normal. My daughter also was out of the hospital after 5 days. She just had to gain some weight to be able to hold her body temperature. She and I were both home recovering together.
About 7 months later, I had some severe stomach pains and ended up in the ER. They diagnosed me with stomach ulcers. After a few weeks on antacids, I ended up back in the hospital with a collapsed right lung. After 2 failed pigtail catheter attempts, I ended up with 2 collapsed lungs. I had the pleurodesis done on the right and had 2 chest tubes placed on that side and 1 on the left. The pleurodesis is a procedure which irritates the chest wall to make it sticky so that the lung will adhere to the chest wall and not be able to collapse. The left side healed quickly (relatively) but the right side did not. Pleurodesis didn’t work evenly. Another chest tube placement was tried to get the doxycycline into different areas on the chest wall to try to get the lung to stick. It stuck in a strange web-like formation leaving a few pockets of space. One pocket was a part of the lung that still had an air leak.
I was in and out of the hospital over a 6 month period including a 6-week hospital stay and an 8-week hospital stay. I went home for a few weeks with a chest tube unit (the large one that wouldn’t allow for infection). Finally, they decided to remove the chest tube even though leak remained. The lung was stable even though the hole was still there. I was stable with the web-like right lung for 3 years.
Fast forward to daylight savings time one year … I had been taking birth control pills without the the blanks for a few years without issue. I forgot this year to adjust the time I take my pill. I have an alarm on my phone that goes off at 9pm every day. Well a few weeks later, my lung collapsed. It happened just after Thanksgiving. My doctor allowed me to wait out the holidays with my family and come in January to get a chest tube. I was thankful to spend Christmas at home, since I had missed Christmas the year my daughter was born. He tried just the small pigtail catheter in January. It worked temporarily, but I had another collapse in March and opted to do the pleurodesis on the left side. It seemed to work and expected to be the more permanent solve.
I made it until October before having another issue. It seemed as though the very bottom of the lung had come “unglued”. After this repair, I went to consult with Cleveland Clinic in their Pulmonary Medicine Department and also talked to the Head of Thoracic Surgery. They both said that they had nothing new to offer, but confirmed the steps my doctors had taken were what they would have thought to do. In their 20 years at the Hospital, they had only seen 1 other case similar to mine. They explained to me that I most likely had microscopic endometrial implants in my chest cavity. The implants bubble up during a period and then the bubbles pop when the hormone is no longer present. They suggested consulting more with an ob/gyn but also said that once I hit menopause the issue would go away.
Today I am writing this while in the Hospital less than a month from that conversation in Cleveland. My insurance changed my birth control brand to a generic. It had the same active ingredients, so I thought it would be okay. I had break through bleeding, and a week later the left lung collapsed. I had pigtail catheter chest tube installed on the left to suck out the air and allow the hole to heal. I am having my doctor write a prescription that requires me to remain on my current brand of birth control to prevent this from happening. It was encouraging to hear everyone’s stories, and if you can actually make it all the way through my crazy saga, I hope it’s helpful.
Words of Advice: If you are treating a lung endo issue with birth control, be careful about switching brands and remember to adjust for daylight savings time. Be strong and hang in there. It helps to take it just 1 day at a time and remember every day out of the hospital is a good one.
The Last Word: It’s comforting in a way to know that others have the same issue as me. Every time I tell my story to people, they look so horrified and have never heard of lungs collapsing due to endometriosis. I am happy to have a community of others with crazy endo issues.
If you wish to contact Lyndsay, you can email her here.
I want to send a special Thank You out to Lyndsay for being brave enough to share her journey with us today. And am so grateful she was able to have two beautiful children and survive the ordeals of childbirth and lung collapses! Lyndsay continues to uphold a positive outlook and attitude, and she is one incredible Warrior. THANK YOU! Wishing you luck in switching back to that name brand birth control and, as always, wishing you relief and peace. ❤ Yours, Lisa.
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
I need to remind myself to stop, sit, and just…relax. It’s been a go-go-go-go lifestyle for the past several months and hopefully this holiday season I can have some sit-down & do nothing” time. I’m hoping you can do the same.
Have an INCREDIBLE week.
Blogs I updated this week:
Endometriosis & the Lungs – added a case study of a 37-year-old woman with Endometriosis lesions in her pleural cavity. Published October 2017 in Radiology Case Reports.
Endometriosis on Your Skin – added a case study of a 49-year-old woman who suffered from a painful, swollen, stinky lump in her belly button for six years. Published October 2017 in EC Gynaecology.
On April 6, 2017, Oncotarget published an article which I’ll be briefly discussing here today.
Researchers took mice and implanted Endometriosis cells inside of of their pelvic regions wanting to see if the Endometriosis cells would migrate to extra-pelvic organs. They later analyzed the organs for microscopic Endometriosis-derived cells throughout the mice and found that it had migrated to the lungs, spleen, livers, and brains in many of the mice.
The authors suggest, “…that endometriosis in locations distant from the pelvis may be more common than previously recognized. Endometriosis should be considered a systemic disease that is often subclinical.” They suggest that these Endometriosis-derived cells residing in other organs may influence symptoms of Endometriosis, such as fatigue, eating disorders, sociopsychological issues and other symptoms which lessen our quality of life. It also discusses thoracic Endometriosis and Endometriosis on the liver, and those side effects. Further research, of course, is always needed.
The entire published study is free for us to read and is very, very interesting. I fully encourage you to click here and read the study and the conclusions. And please feel free to correct me if you feel I’ve misread the science-y bits. ❤
Oncotarget – (Article; April 2017) Micrometastasis of Endometriosis to Distant Organs in a Murine Model
~ 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
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.
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).
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.
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
~ 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