I have been diagnoised with Endometriosis in the lung. ...

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I have been diagnoised with Endometriosis in the lung. I was wondering if any one else out their had this condition??? It's such a rare condition doctors dont know what to do...

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  • Posted

    In response to your letter about endometriosis on the lung. Can you please tell me your symtems as i have endeometriosis and always get this severe pain in my back which goes through my rib cage, i can not get rid of this pain with any painkillers and it also coinsides with when my periods should be.

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  • Posted

    Hello my name is janeane,35 years old,I have endeometriosis also and have been having the same pain,it goes under my ribcage in my back some times in front,pain radiates and hurts when i breath,happens same time every month right before my period.My doctor said it could not spread up that high and so they checked my gaul bladder was fine.Then ultrasound now they want to do catscan....janeane

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    I too was diagnose with endometriosis of the lung about 4 years ago( age 27)I AM NOW 31. far u are the third person I know of that have this rare condition. The other two was a set of twins I met on line when I was first diagnose and was looking for answer. No one sat me down and explain what I have, what to expect or anyting. I had to do the research myslef and that was how I found a specialist. I had pain in my right hand and chest and caugh a lot. for months I would go through this. I did not take much notice untill it happen at a certain time of the month during my period once that was over the pain go away. Then I realize the pain started to stay longer. I could not laugh, or breath deep without being in pain even when I lay down. I called out of work after feeling realy sick and throwing up. That day nomal breathing was difficult. The next morning I went to a walk in medical center instead of making appointment with with my doctor. When I went in after an exam i was sent to do a xray. Then all i know if about 2-3 doctors are asking me questions like did you have an trama like a car accident. I was admitted to the hospital right away. A chest tube was put in my chest. after almost a month with a chest tube I was told I had endomitriosis of the lung. I say so many doctors and interns asking me questions. No one have ever heard of it before. I underwent two surgery where my lung was seal to my chest bone to prevent a nother lung calapse. I also had surgery to remove endometriosis from my uterus. I am still seing a specialist. I was put on the pill at first. when I met my specialist he said because of the lung endometriosis I will have to have another kind of treament. I was put on Lupron depot(harmonal treatment) which make me exprience menopause. after more than a year I was place on depo provero. with that I was having a period and it all start again. I was place back on the lupron. The worst part is I am having all the symtoms of menopause. Each time I am close to another shot I can feel my lung about to hurt. I am unable to see my period because it will start all over again. I am tired of taking meds but I rather that than be in pain. I got married in November06. We are now trying to have a baby. The endomitriosis damage my tubes so we have to do IVF. I may have to go back on the meds after the baby is born.

    This is so rare that many doctors are not aware of it. When I talk to people especially women they have never heard of it. Some do not know what endometrosis is. I am living with this four years now. I am not cured. I still feel small amout of pain in my lungs and not sure if that is from the surgery. When I get am pregnant it may help the endometrosis fo the uterus but my lungs will still affect me. Having a period is not a plan for me at this time. To cope with it I pray alot and I do get support from friends and family and now ai have a husdand to help.

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    • Posted

      I've been suffering for 8 months now with the same symptoms. I had Sugeiry to past my lung to my chest on a April 17th 201. The specialist thinks I have endometriosis but is unsure. How did they detect that you had endometriosis of the lung? Please contact me I would love to understand what's going on from another point of view. 
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    • Posted

      Hi guest ☺️

      Bless your heart, I read this with tears in my eyes.  I'm sitting here in agony, but reading your story is making me tell myself "get a grip!"

      i would like like to know how you've been, I see this was posted a year ago, can we get an update?  

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    • Posted

      My daughter started having this issue in February 2016...so far she has had 3 collapses. If you don't mind would please share the specialist you are seeing? My daughter lives in New York and I'm desperate to find a solution for her. After seeing my daughters pain, I feel so much compassion for you guys and I am hoping that you will be able to have your beautiful babies soon. Take care.
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    • Posted

      Hi. I just came across this site as I was researching endo. I have had 2 laparoscopic surgeries with Dr. Tamer Seckin in NYC. If your daughter still lives there, I would HIGHLY recommend she make an appointment with him. He is the founder of The Endometriosis Foundation of America and is one of the top researchers/surgeons in this field. I can't say enough wonderful things about Dr. Seckin -- he is simply phenomenal. I have a very long history with endo and infertility and Dr. Seckin changed everything for me. I got pregnant naturally twice (following laparoscopic surgeries) in my 40's (!!!) and now have 2 beautiful sons. Dr. Seckin is truly the best and anyone with endo who is seeking treatment and can get to NYC should meet with him. I wish your daughter the best of luck.

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    • Posted

      Hi. I have endometriosis too. I have had a collapsed lung twice and maybe now again. I went to check up with my doctor and did a X-ray and I have mild fluid in one of my lungs. Doctor say mild pleural eddima in my lungs. I am scared again. He gave me medicine for two weeks and told me to also blow on a balloon. I am tired of all this. I am on three months injection so my period don't come. I thought I was good with the injection. Cause I also took a ultrasound to see if any endometriosis and none. So now what. I am totally tired of being poked with that chest tube. Cause it hurts when they put that in. I am so traumatized by that.

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    • Posted

      Yeah the injections didn't work for me either. Have you tried the endo diet? If not look into that. And if you really can't take it anymore speak to your doctor about getting pleurodesis surgery. It was a hard painful recovery but it worked for me, it stopped the fluid from getting in my lung. 

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  • Posted

    I have had endometriosis of the lung for 7 years I was diagnosed very quickly, within 4 months. I was 24 then, I am now 31, thankfully 11 doctors put their heads together and quickly diagnosed me. However I had to complete a very long stint of isolation in the contagious disease section of the hospital before they released me and realised I wasn't contagious! I suffered stabbing, electrifying chest/lung pain for about 3 years before a visible symptom reared it's ugly head outside piccadilly circus tube station where, horrifically, I experienced a bubbling sensation rise through my left lung which worked it's way up towards my throat, prompting me to need to clear my throat which brought up about 2 cup fulls of bright red bubbly blood... I was horrified. This happened everytime I had a period, about 3 times each cycle, until eventually I was diagnosed with pulmonary endometriosis. My doc gave me the option of 2 treatments, invasive surgery or I could take the contraceptive pill every day without ever taking a break, meaning no periods. My doctor told me that taking the pill every day will eventually make the endometriosis shrink and then eventually disappear. I chose the high oestrogen pill... and it worked. After a bit of breakthrough menstrual bleeding in 2007 and no sign of coughing up blood in 6 years, I decided to have a break from the pill in dec 2007. One year later, December 2008 I went to casualty with acute stabbing pains in my abdomen and severe pain during urination.. even though I gave them my medical history they didn't connect the two and discharged me undiagnosed... since then (in the last 4 weeks) I have been experiencing severe stabbing pains around the middle section of my lung, around my back, on my shoulder and beneath my breast plate...... I went back to the docs today to pick up a repeat prescription of my high oestrogen pill.... It looks like it doesn't go away. I don't have a husband yet, but want babies before I'm 35/6 and this scares me.
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    • Posted

      as a older lady who had suffered from the ravages of Eno since I was 14 yrs old, I am now near late 50's, I must say I am disheartened to still hear the delay in diagnoses of Endometriosis to young ppl after all these years since I  was told after going to  many doctors for over 7 yrs that I did in fact have Endo finally!, that was over 30 yrs ago. I had 2 laporoscopies, a Laporotomy and finally a Hysterctomy at age 32. I was on contless medications that did not heelp much if at all back in my 20's, made to feel like I was crazy or just a baby who could not handle the montly menses pain from my periods. I see this is still going on and it disturbs me greatly. We all know our own bodies and if we are getting symptoms of sever pain or excessive bleeding around Period time then is is most definatly related to Endo no matter what these inept Doctors say so push in till you find the right dr who will do a Laoroscopy and find the truth and damage that Endo wreaks on our bodies, I saw in the 1970's that it could travel to the lung and now you are the 5th case I have seen since then as it is rare...good luck and God Bless all my Endo sisters, speak up 4 yourelf cause the lonnger u wait to be diagnosed the more damage and adhesions you will have.  xoxox JoJo
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    • Posted

      Hello Jojo1956

      How are you ? I'm 40 and just had Full hysterectomy, all the tools went out ! I had/ have endo stage IV ,and it was all over my pelvic area including rib cage which they were not expecting. Just one question if you don't mind, how do you feel after your hysterectomy after all these years? Did endo come back? Hope not. Do you have any other symptoms? 

      Thank you 

      Carla

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  • Posted

    Yes, I too have experienced what was diagnosed as \"Pulomonary Endometriosis\" 2 years ago. I've been treated with hormones and have a wonderful team of doctors in Boston, MA. Literally saved my life. I never had pain or other serious symptoms. Only, Persistent coughing, winded easily ( which was odd as I am very athletic), heavy breathing and ongoing menstrual bleeding with horrible cramps. At times felt faint during menstrual cycle. Apparently I was first diagnosed with pneumonia and collapsed lung (pheumothorax) which kept filling up with fluid. Long story short- I was referred to a Pulmonologist who literally had this \"running theory\" that it may be a rear pulmonary disease. Had chest surgery better known as thorocoscopy and have been ok since so far. (Thank God) I would also recommend having a experienced fertility specialist. Mines is great and specializes in endometriosis. From what I understand its possible to still have children but it can be tricky. A good team of doctors is the key. Hormone therapy is not ideal but from what I can see it works.
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