Are there any fellow Catamenial Pneumothorax (endo on the lung) women out there?

Hi everyone, I am new here.

I have been managing a rarer form of endometriosis for around four years now (my first lung collapse was twelve years ago, but diagnosis had taken eight years), and I am wondering if there are other women out there who have CPT (endo on the lung) too.

If so I would love to hear from you. I am eager to learn how other women with this strange condition are dealing with it! Any advice would be greatly appreciated. Also I am keen also to learn how this impacts upon the partners of such women too and if there is any support out there for these people too.

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  • Hi found your post very interesting not sure if I can help but I've had a similar experience.

    Had a collapsed lung around 8 years ago during my period and was told it was a spontaneous pneumothorax, just one of those things because im tall and slim etc etc. Since then I've had more smaller ones but not always gone to the hospital. Also had a lot of unexplained chest pain, pluerisy, and so on during the time of the month. A couple of years ago I was diagnosed with Endo basically everywhere including the bowel, bladder, lots of adhesions. Everything was a right mess. Had 4 surgeries and waiting for my 5th. The link

    between my Endo and lung problems has not been formally made but I am convinced that there is some kind of link. I had no lung symptoms at all when I was on prostap. How did you get your diagnosis? Have the hospital discussed treatment with you? Ive not heard of anyone else with this just read about it. Hope you're having a good day today. My hubby is great and v understanding but it's hard to plan things as we never know how I'm going to be from one day to the next. I've just changed consultants so will see if my treatment changes. Would be interesting to hear how you finally got diagnosed. Does MRI show any probs with Endo on the lungs? Big hugs xxx

  • Regardless of endometriosis in lungs, of you collapsed during period, it falls under CPT. In reviewing dozens of articles, only about 1/3 of documented cases confirm thoracic endo. So if you have it elsewhere, you should be testing the root of the problem...just found an awesome documentary endowhat.com

    My thoracic surgeon found lesions but didn't get then tested for endo bc he is skeptical...only after four fallen lungs and two surgeries during day 1-3 of period did he accept that this condition was to blame.

  • I should have said the limbo between MY Endo and MY lung problems.... Sounds like I was generalising sorry xx

  • Hi Vegas

    It is so nice to know that there is someone else out there with a similar condition and circumstances to me.

    Occurrence rates of Catamenial Pneumothorax (CPT) given to me care of my specialist stood at 7 confirmed cases in England back in 2008. So apparently it is a little bit rare! Or under diagnosed, which is my own suspicion. I am my specialists first ever case.

    I am the opposite to you in height as I am only 5 ft tall and very petite. Weight wise I suspect we are similar in relation to our heights, I weigh 47 KG which is a BMI 0f 19 or 20. This ideal for successful treatment for preventing more lung collapses.

    My diagnosis was made during the Video Assisted Thoracic Surgery procedure, which came about to experiencing a major lung collapse that was deemed life threatening. As far as I know, there is no endo elsewhere, but I have not had any procedures to validate this.

    Due to the nature of the endometrial (funny how the spell check here does not recognise this word! Lol!) deposits on the pleura and lung tissue, it will not always show up on MRI or CT scans. X ray is only useful for confirming an actual collapse. If you are a fit person, then oxygen levels in your blood system will come up as normal even with a 15%+ collapse.

    My endometrial deposits are deeply embedded, so not all of it was removed. Also, surgery carries the risk of moving the endo around, as it loves to attach to scar tissue. I have a very small deposit on one of my scars under my arm :(

    I suspect it may be a really good idea for you to raise your concern with your GP, mentioning Catamenial Pneumothorax. I would also recommend you ask to be referred to a thoracic specialist as well as an endometriosis specialist

    There are scant, but good web sites explaining this condition, as you will quickly discover, hardly anyone has even heard of it. Some useful scholarly links are below. I don't bother with the more 'chatty' stuff. It is useful to take such information along with you when you visit a GP or lung specialist. If you demonstrate being well informed your are much more likely to be treated as a grown up patient instead of a poor victim! Also, when armed with information you are then in more control as to the choices you make regarding to managing this condition, should you be diagnosed with it:

    jama.jamanetwork.com/articl...

    journal.publications.chestn...

    jtcvsonline.org/article/S00...

    Sadly you may have to pay to view the complete text on some papers!

    I do not know where you are based, but I was so lucky to have had my major lung collapse near to where there happens to be one of the best thoracic surgeons in the country, Nottingham City Hospital. Also, the next city along is Derby, which happens to have one of the top Gynaecologist/Reproductive Disorder teams in the country too.

    If you are referred for surgery, let me know and I can share my experiences with you but also let you know the details of the surgeon and his team that treated me. I was a bit of guinea pig at the time, so I suspect your treatment will be 100% more comfortable!

    Phew...there you are...this should be adequate for starters!

    Keep in touch and I am here for you should you wish to learn more about this quirky condition, such as how I currently manage post VATS. That is another essay in itself I am afraid :)

    Big hug

    X

  • Hello, I'm recovering from lung surgery to manage catamenial pneumothoraces. I don't believe there are many of us with a diagnosis as my surgeons were initially surprised to have a patient with this condition however, as collapses of the lung can range in severity I suspect there are women out there with problems they may not associate with endometriosis so i also think there is under-reporting/diagnosis.

    My first confirmed collapse was in July 2011, treated by aspiration. I now believe that between August 11 & march 2012 when I was admitted to hospital, I had collapses every month. I also suspect I had experienced collapses in the past.

    In March 12, I was an in-patient for 26 nights and had VATS followed by pleurodesis followed by another collapse resulting in thoracotomy for pluerectomy, diaphragm resection and polymesh, and another pleurodesis. A paper will be coming out on the procedures written by an assistant surgeon and I'm happy to let you know about that if it's interesting to you. I was impressed with the level of care I received as soon as I made it to the cardio-thoracic ward. Although the thoractomy was very unpleasant and required morphine for some time afterwards, the operation was not optional and I am very grateful for the renewed quality of life it has given me.

    How do you find it best to manage any symptoms you may have now?

    Really pleased to find your post and hope to learn more from anyone here who has catamenial issues!

  • Hello Hemingway

    It is so (strangely) relieving to hear of another woman with a similar health issue to myself, as I have not had much opportunity to speak of my own experiences with anyone who knows what it is like to deal with this life threatening and sometimes down right scary condition!

    So, firstly, a huge thank you for making time to contact me.

    It sounds as though we have had similar treatment experiences too. As noted above in my written piece I was finally diagnosed with Catamenial Pneumothorax in 2007/8 due to VATS and representing symptoms. I had my first lung collapse in my mid twenties and this finally came to a head when I had a huge collapse post surgery for a routine small operation unrelated but coinciding with my onset of menstruation.

    Likewise to you, I am also so grateful. Interestingly I have found that a few years down the line with such an approach to life I do feel out of kilter with some people who I am close to as they do not have such a depth of appreciation towards how amazing being alive is due to not having to fight for their life to such a degree to be here today. Sounds dramatic, but it is so true from where I currently am.

    With regards to how I manage now, to be honest it is the blind leading the blind!

    I have tried acupuncture, Chinese herbal medicine and Reiki. The pain is still hanging around the surgery areas and lower right hand lobe areas, mainly due to nerve damage. Managing cramps each month is easier which may be down to taking the following (what works for me may not for you, so I would suggest you do your own research and speak with your GP and a decent herbalist)

    Krill Oil

    Agnus Castus

    Magnesium

    Vitamin B complex

    Oil of Evening Primrose

    I also take:

    Tranexamic Acid on days 1-3 of bleeding as well as Naproxen (may be incorrectly spelt)

    I am surprised I am not rattling!

    Swimming is excellent for relaxation and for using muscles around the chest area and my horse riding is strengthening my muscles, especially around the ribs. I have tried going on the pill (Yasmin was the last one) but the side effects are not great. I am opting for a more holistic approach at the moment. I am a vegetarian diet and eat a vegan diet every 4 days or so, when I remember.

    I hope this helps!

    :)

  • Sorry it's taken me a while to get back on and see this - thank you so much for the breakdown of what you take though, really interesting and useful. i'm going to check out your website and message you too!

  • Hi im twinkletoe i was diagnosed with Thoracic Endometrosis i had on two occassion a callapse lungs i though i alone had this rear disease.

  • Hello Twinkletoe

    I hope you find comfort in knowing you are not alone. The VATS surgery is very effective. I have not had a single lung collapse since! I live in Warwickshire but I would rather travel for top care than settle for the convenience of staying local.

    Sadly I found out last Thursday that I have level 4 endometriosis deep in my pelvis and also in the rectal and colon areas. So, no pun intended, but I am feeling gutted currently. More major surgery awaits under the care of my specialist and a colon/rectal specialist. It is doubly annoying as I really look after myself with a good diet, plenty of exercise and a positive approach to life!

    If you ever want to know more about how I pulled through then do get in touch.

    Big hug and I hope you are ok today!

  • Hi,

    I had right catemenial pneumothoracies for a few years then 2 plain VATS followed by VATS talc pleurodesis that stopped the collapses for 5 yrs. I'm not having periods now but I got air in my chest 3 days ago. CXR showed no air just fibrosis and rt diaphragm elevation. I'm so depressed now because I thought I was cured of this and I have other health issues to contend with. This air is more painful than before because the lung hasn't gone down.

    Does anyone have any knowledge of whether MRI or CT is clearer for imaging of a post pleurodesis lung? Not sure if my old chest surgeon takes my current health insurance so I might not be able to even see him. My first 2 surgeons who did pleurodesis didn't do it right so I don't want to just go to anyone.

    Any advice appreciated!

  • Hi

    So sad to hear things are not good for you at the moment.

    MRI scan is pretty reliable for showing up any issues.

    I've recently discovered my endometriosis has been shuffling around my body too. It is currently lurking around the colorectal area, bowel and kidneys.

    Grand!

    Good luck and let me know how you get on. I hope all goes well for you, as this is no picnic. Try and keep chirpy and positive.

  • Hi ....I also have thoraic endometriosis, diagnosed after my second collapse in 2009 (but unfortunately I wasn't told until after my third collapse in 2012).. I'd be really interested in which drug treatment has been effective - I'm receiving GnrH injections on a 3 monthly basis for 9 months but there is a question now as to whether I should continue. I've had pleurodesis, bullectomy and pleurectomy in 2 separate operations. I'd also be really interested in ongoing symptoms...does anybody else have a prickly sensation around the affected lung or throat and cheek? I also have had an odd metallic taste which so far is unexplained.

    Look forward to any replies. Thanks for sharing.....

  • Hi,

    I live in Tampa, Florida, USA, and have been suffering from this condition for years (2008 was my diagnosis, but had symptoms several years before that). I had thoracotomy and mechanical pleurodesis 26 Dec 2008, which lasted several months before I began having symptoms again, to which the doctor said, "Is impossible." Then, 27 months after the surgery, I was diagnosed with another pneumothorax in the emergency room and required another chest tube. I was tried on birth control pills, then straight estrogen at increasing doses, but had vaginal bleeding every single day, so I became angry and stopped that medication on my own. A few months later, I was in the hospital again with another chest tube. I had done a lot of research on the subject, and I knew more about this condition than my doctors did.

    One might think a pulmonologist is the specialist to treat, but in reality it is the gynecologist who can help. Estrogen is the worst thing you can take for catamenial pneumothoraces. Please if you have this do not let your doctor try to convince you that it will help. Estrogen is the enemy. Their logic is that estrogen will suppress menstruation, but estrogen actually feeds the endometrial implants. I finally convinced my gynecologist at age 50 to remove my ovaries. It is an extreme measure, but from what I have read, it is the only thing that works. Now, 2 years and 3 days after undergoing oophorectomy, I do continue to have symptoms, but not as bad and not requiring chest tubes--so far. Today, my symptoms have been the worst I have experienced since the last chest tube (Nov 2011).

    I have a new gynecologist (in Orlando) who actually has experience with this condition, and he has put me on Femara, which is primarily used as chemotherapy for estrogen-dependent breast cancer. It somehow blocks the activity of the estrogen. My symptoms did improve somewhat after starting Femara up until today (I have been on it now a little over 2 months), but I wonder if my having recently moved furniture in my house (coinciding with dates when I would have started my cycle--I still keep track on the calendar, as this is when my symptoms always occur) might have caused pressure to open my lung again.

    On my last hospitalization in Nov 2011, I was admitted for 4 weeks, as my lung would not reseal. I had talc pleurodesis after about a week, which did not work, then I had CT-guided placement of a pigtail catheter directly into the air pocket, which did not work, either. So I finally had my ovaries removed, and after a while if these pneumothoraces stop happening, I can have bioidentical hormone replacement therapy to help with the menopausal symptoms.

    I don't understand how I can continue to have symptoms, having been without a source of estrogen for 2 years now. My new GYN said that there could be other tissues in my body harboring estrogen, but I hoped the Femara would help with that. I'm quite frustrated at this point. It's been 5 years since I could lead a 'normal' life. I sympathize with all of you and wish you the best.

  • Hate hearing that after such measures you still experiencing symptoms...Started a FB group for ongoing conversations and sharing of experiences. Hope you'll join: facebook.com/groups/4660845...

  • I am 38 years old with stage 4 endo. Getting ready to have a hysterectomy because it just keeps getting worse. I am unable to have any more children. God blessed my husband and I with a son 10 years ago through fertility treatments. 8 years ago I went to the ER for chest pains. I had the chest pains 2 times before and it took the 3rd time before I realized it was during my periods when I had the same pain. My right lung was partially collapsed. Pulmonary Dr. knew right away it was Catamenial Pneumo. and did a thoracentesis...or pleuracentesis?? I always get that mixed up. I ended up having 2 more and I went on Lupron for 6 months to stop my periods. I never had them again but I have gained a lot of weight because the Dr. said to have my babies and then have a hysterectomy. So I went on fertility after fertility treatments. Well I was never able to conceive again but just couldn't bring myself to have a hysterectomy. I was tired of going through all the hormone treatments and fertility is expensive. I was very thin and petite when my lung collapsed. For some reason the Dr. said it is common in people my size?? I guess because I am much heavier is why I haven't had another one, I don't know. But I know I have it in my bowel and other areas. I wonder where it can travel to in the body? I hope that the hysterectomy will cure the pain and I will be able to get back to my healthy weight again and move on with my life. Endometriosis has consumed my life and controlled me for the last 12 years. Every since we decided to start a family. I am sick of it! Good luck to you all and good health!

  • I was diagnosed with lung and colon endometriosis in 1991 and have a timeless book which describes my experience with Catamenial Pneumothorax. kirkusreviews.com/book-revi... I know control my estrogen levels via diet. Estrogen inhibiting foods, and avoiding estrogen containing foods. catamenialpneumothorax.org/...

  • Hello, I thought I would take some time and read some other experiences and I will share mine.

    I was diagnosed with Endo just roughly after my daughter was born about 10 years ago and had a laparoscopy to see the damage as well as remove any Endo the doctor may find, results were pretty bad. I was trying to get pregnant again so wasn't on any medication for the endo as it was "removed" in surgery, reaching pregnancy wasn't successful after a few years I also got tired of dealing with the immense pain of my periods, I decided to go on medication, with NO success. One day I felt a sharp pain behind my right shoulder, right side of my neck and down my right rib cage I had also started my period (making a long story short after being told I was having a stroke), they finally decided I had a spontaneous pneumothorax and it would resolve on its own and that it may return within the next 6 months if it does to go back to emergency. 1 month later I knew it was a pneumothorax yet again also noticed I was also on my period so I asked the doctor if my period could have anything to do with my pneumothorax. I was told "oh no, your period has nothing to do with your lungs" with a smirk and look that I was nuts. So they did a Vats and removed a "bullae" they found on my right lung. I was told by my theoretic surgeon (who happens to be one of our best) that I had less then 1% of this reoccurring. Not even 1 month later I was back with yet another pneumothorax and on my period as well. This time I made the connection and told all my doctors which had no response for me except the look that I was nuts. One doctor actually laughed at me and told me I was "special". So this time I had a talc pleurodesis done and the tubes inserted yet again. This time I was told I had less than 5% chance of reoccurrence with our fingers crossed of course. When I was able to get up and walk, I went straight to my doctors office with all the info I could find on catamenial pneumothorax and demanding that I get my periods stopped right away before my next period. After 2 weeks of doctor games one Gyne decided to give me Lupron Depot for my Endo and I have been on it ever since with a little add back of estrogen luckily I haven't been back to the hospital since. Needless to say my life hasn't been the same since. My new goal now is figuring out how to get off Lupron without suffering another pneumothorax.

    I would love to know what other women are doing to control their Endo and pneumothorax because I am done with Lupron taking over my life.

  • Hello.

    It is great to finally hear from other ladies that suffer from this rare disease. I was watching the TV show called " The Doctors" on yesterday and they actually had a guest on the show that suffered from this condition. I almost cried. I suffered from my first collapses in 1995 and chest tube insertions which resulted in thorocotomy surgery(with pleurodisis). They had never heard of this condition back then so I had to do a lot of research on my own and track my symptons, then convince everyone that this condition was real. Fast forward to 2004 and it happened again (after they said I wouldn't have anymore collapsed lungs), so needless to say I had to endure this painful thorocatomy surgery again. This time they took out the pleaural lining in that lung.

  • As you all know this condition will pretty much affect you all the rest of your life. I haven't had any more collapsed lungs so far, but I also attribute this to my being in pre-menapause, so I have not had any periods recently. I still have remainders (shooting pain or the feeling of pulling in certain areas) depending on what's going on of the surgeries and chest tubes, since they both causes scar tissue and nerve damage in the based of the breast and ribs. I've just learned to be thankful that we as a team figured it out before the lack of oxygen did any life threatening damage.Just glad they fnally listened to me after I pretty much researched it on my own, since the gyn, general practitioner or thoracic surgen, had never heard of it! What a journey. So hang in there guys....

  • If you don't mind me asking, what are you taking to stop your periods? Or are you just naturally in that stage?

    Thanks!

  • Fortunately,I am naturally in that state. I turned 50 in Dec. So, early last year it started to go away. Unfortunately, it's kinda weird because every now and then, I still get cramps sometimes with no blood. And the uncomfortable pressure and general annoyance of the after effects of the surgeries, still lingers. But so far, no more collapses, so I am grateful.

  • Back in October 2013 I suffered my first pneumothorax. I had previously been bleeding from my menses for 6 months, very heavily at times. I was rushed to the hospital afte experiencing shortness of breath and cold like symptoms only to find out that I had a spontaneous pneumo. After spending 19 days in the hospital and two thoracic surgeries on my right lung I was given lupron to stop my bleeding even though my doc did not put me on lupron because she thought I had catamenial pneumo but because I was severely anemic due to the loss of blood, even though I told my docs that I thought I had catamenial pneumo. Well, after 4 months of the lupron keeping my menses at bay, it has returned with force, literally.....I just pray that I don't have another pneumo. I was planning on having a hysterectomy to stop my periods completely, but I was waiting until my summer break, but now I'm scared that I may have another collapsed lung so I'm considering going under the knife before my summer break. But, from some of the posts I'm not sure if that is the answer.

  • Hello - I have suffered from catamenial pneumos since April 2011. I have had a total of 6 collapses and it was only after alot of research and prodding on my part that my thoracic surgeon agreed that perhaps my collapses and periods were related.

    I was put on Lupron for 6 months, but developed some bad side effects, then tried a new drug called Visanne (I believe available in Canada and the UK(?) for another 6 months and then lastly went to taking continuous birth control pills. I have been on this for the last 9 months with success but then last week had my first period in the past 2 years and it was extremely painful in my pelvis and am currently having severe cramping in my lung. Am hoping that it is just residual scar tissue (have had talc pleurodesis done 3 times) from the lesions and that my lung will hold.

    Have started back on the Visanne again, but not sure if this will work and wanted to see if anyone has had success in stopping collapses with a hysterectomy and removal of ovaries (my gynecologist is hesitant to do this as I'm only 38, but I feel like I'm running out of options). It's been 3 years and I just want my life back.

    Thanks to anyone that can provide insight.

  • Hi! I'm also 38 and have had 14 collapses since 2008. I'm currently on Prostap and about to start an oestrogeon add back. The plan is to stop on Prostap for the next 2yrs then have a full hysterectomy, without HRT for the following several months. There has been a little independent study completed in America by a group of catamenial ladies. The study concluded that the most effective treatment for the condition is complete ovary removal or hysterectomy without HRT for several months. The surgery failed in cases where any ovarium tissue was left behind or HRT was started before 6 months. I know its awful and I'm constantly worrying about my lung collapsing and the pain I have in my lung and ribs everyday, but hopefully fingers very crossed we'll get through it!!

  • Thanks Tarzan75 for the feedback and sorry for the late reply. I was unfortunately in the hospital shortly after I wrote my first post as I developed acute pancreatitis and doctors are now wondering if I have endo on the pancreas as the attack occurred shortly after my period/lung/endo flair.

    I met with my endo specialist today and he wants me to still stay on the Visanne for now as I haven't gotten a period since I started on it as he still is not open to doing the hysterectomy and removal of ovaries due to my age.

    I can absolutely understand your fear (as I am scared almost every time I have lung pain - which seems to occur more frequently). I'm sorry to hear that you're going through this as well, but take come comfort in the fact that we're not alone in this journey! All the best to you.

  • Should I stay on Lupron?

    I have had several lung collapses that occur at the onset of my period. I will give my history below in case it is helpful to those dealing with thoracic surgeons who do not "believe" in data menial pneumothorax.

    My question is whether anyone has been treated with Depot Lupron and then stopped receiving the injections, and what the recurrence risk is of stopping treatment. (Lupron suppresses the body's natural production of estrogen, which is what causes the tissue on the lung to shed and create an opening.). I am nearing the 15 month mark on Lupron and the best doctors in the world (chief pulmonologist at the Mayo, teamed with Mayo gynecologists and my own primary Mayo doc who is a lung specialist, and my local gynecologist who is an endometriosis guy) acknowledge that we are all just guessing in terms of the risk. On the one hand, starving the tissue of estrogen for some period should make it shrivel up and die. On the other hand, the tissue on my lung is microscopic and undetectable, even through surgery. I am 52 and should be hitting menopause at some point.

    Thoughts?

    My history is a long series of lung collapses that went undiagnosed (I thought getting my period entailed the twinge in the shoulder and frequently feeling poorly afterwards - I never experienced pain or noticed the shortness of breath, though in yoga I would feel something moving around). In August 2012, woke up with slight pain in my shoulder blade and thought, "oh, I must be getting my period." My lungs felt funny, and I assumed I was getting asthma, due to my bad pollen allergies. After a few days, I could hear a crackling (faint, like Rice Krispies) when my mouth was open. I went to the allergist, assuming it was asthma (which I don't have). He checked me with a stethoscope, oxygenation tests, lung capacity tests (blowing into a tube and recording volumes) and said "there is nothing wrong with you." I pressed and said there was clearly something wrong (feeling strangely dismissed and slightly mocked, something I am unused to as a lawyer and senior exec). He dismissively said I could have an xray on my way out, and then I should go home. An hour later, they were sending an ambulance as I had a completely collapsed right lung.

    The ER put in a chest tube and I was in the hospital five days. Not a single doc would entertain my theory that my period and the lung collapses were linked. They would just smirk a bit, or say catamenial pneumothorax was impossible, as there is no known mechanism for that tissue to travel to the lung. They refused (this was a respected hospital, but not the Mayo) to consult with a gynecologist at all. They said they didn't even know one.

    Then, in February, I had another lung collapse, again on the day I got my period. This time, they did surgery - VATS, and found endometrial tissue all over my diaphragm. They resectioned my diaphragm (took the top layer off to remove the lesions), and performed mechanical pleurodesis to rough up the lining next to my lung so that if it collapsed again, the lining would grab it rather than letting it slide all the way down. (It took me awhile to figure out that when the endometrial tissue on the lung sheds when I get my period, this opens up the lung. Air escapes and pushes the lung to collapse.). Again, the docs said the surgery would take care of it and did not see any reason to consult a gynecologist.

    In May, when I got my period, I had the same feeling in my shoulder, and felt a ping when my period started. I had an X-ray and it was a small (35%) collapse - maybe the pkeurodesis worked to prevent a total collapse. No chest tube required, and in a month the air reabsorbed and the lung looked normal. Again, the lung docs did not refer me to a gynecologist. This time, I went to the Mayo to get another perspective. On the day I saw my primary care doc, he also got me in to see a pulmonologist and a gynecologist and before the end of the day, I had a Lupron injection.

    I have been collapse-free for over a year, but the Lupron is hard on me. I have queasiness, fatigue, and six months into treatment, could tell I was getting into a depression. I am on anti-depressants which have helped.

    So, the question looms in terms of discontinuing the Lupron. Also, my Mayo docs gave me a prescription for a small amount of estrogen add-back, to avoid osteoporosis and menopausal symptoms. My local gynecologist thinks I should go off the estrogen just to make sure the tissue is truly "starved" so it will die off, rather than just be suppressed. All docs acknowledge that we are all guessing.

    Anyone out there want to add to our data points as we make this decision?

    Thanks so much.

  • Hello.

    It looks like we are all doing the exact same thing, Lupron or Visanne. I was hoping that by reading other posts from fellow catamenial sufferers that there would be a "better" solution but unfortunately I don't seem to find one.

    I too was on Lupron for 2 and a half years with some HRT add back after a while then thought I needed a break from all the harsh side effects so tried Visanne for a couple of months. I am very thankful that both of the meds have kept me out of the hospital but I was getting so down that I just stopped taking everything (I do not recommend). I have been off all meds for about 5 months now and I must admit the first 3 months were the greatest. I had energy, life, happiness even my family seemed happier, but now that the pain is starting to come back I am getting tired and starting to feel lifeless again, but I fear Lupron more and dread the day when I walk into the doctors office to get my shot.

    Not sure what Im looking for, I guess maybe I just needed to vent a little.

    Good luck to you ladies out there and hope they find an end to this very soon.

  • Wow! Just wow! I just had my "first" lung collapse episode in October where I was in the hospital for 18 days during the month of October. I have had symptoms of diaphragmatic endometriosis since 2007. I just turned 34 in September.

    My DR never believed my symptoms or pain had anything to do with endometrios, but every month the symptoms came back with every menses. Long story short, I thought I had pneumonia so I went to the dr for X-rays and a prescription and instead ended up in the ER getting a pigtail inserted. Ultimately they inserted 3 tubes on top of a lung surgery to find and seal the hole in my lung. Endometriosis was found on my lung and also again confirmed to be on my diaphragm. ( previously diagnosed in March). My surgeon team and hospital gyno, all suggest lupron shots. I have declined. I don't want this cycle of being on and off these strong meds and hormones. i have opted to try a holistic practitioner. She has put me on a regimin to help balance my hormones naturally. I am praying I do not have another collapsed lung. I feel so anxious as my period is starting sometime this week. I feel like ultimately, I will end up having a hysterectomy. I don't have children and my husband and I are not wanting to have any. I am sad today reading these posts and realizing the only options are to fill my body with lupron shots that can come with so many unwanted side effects , and then It comes back when you come off it. I've read that we're not supposed to take it longer than 1 yr time in a lifetime because it is so strong. It doesn't seem worth it to me but that is my thought. But now I'm reading that hysterectomy may not be the end all either!....I'm hoping with eating a More balanced diet and the right supplements, I can prolong the process. I've already had 4 surgeries this year. This disease is tiring. I wish the best to you all.

  • janaenaebonita - I know it has been 2 months since the last post but I haven't been on the site very often as I find thinking about this brings back all the memories.

    I am wondering how your natural path is working for you as I am not looking forward to the Lupron shots and would love to know if all natural can help... Please share your experience.

  • Hi jenj,

    So far I have been with minimal pain. The first mensruation the month after my last surgery was more painful then the most recent one. I still feel that the endo is there in my diaphragm and lung but the last cycle was better. My breathing has been good and normal as well. I get nervous every month but so far I have been with minimal pain. Mostly feeling tired and exhausted during that time of the month. I've been doing gluten free, and now dairy and soy free. I am also only eating organic to avoid added hormones and pesticides. I am taking b 12, D with K and chaste berry plus as well as coconut oil. I stand by coconut oil! I feel it has helped me with the pain tremendously, and when I slow down in using it, I notice a difference. At the moment other than my mirena, I am not taking any other hormones. Hopefully it will stay that way! I wish you all the best as well! I will try and keep you updated!

  • So good to hear another inflammation fighter out there. Gives me hope as I start the journey just two weeks out from my second VATS. I started a Facebook group in case that might be easier to keep up with gather women dealing with this disease. Hope you'll join.and share facebook.com/groups/4660845...

  • Thanks so much for letting us know. I will definitely consider something like this. I hope it all continues to work for you. :0)

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