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Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo anyone? Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo anyone?

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  #1  
Unread 12-23-2010, 02:39 PM
Red face - Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo anyone? Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo anyone?

I have been fighting endometriosis for many years now. I have had issues with adhesions since 1994, Endo was first "officially" diagnosed in 2004 when it was found on my diaphragm and my last lap was in Dec 2009.

Since the surgery I have had issues emptying my bladder. Was first told to give it time that it was recovering from surgery (though no endo was removed from the bladder) and then later told that perhaps endo has invaded the bladder. The severity of the issue actually lessened a bit over time and I pushed it back in my mind.

At the very end of Aug I had a cyst rupture. The concern was that it was an endometrioma and my dr's office pushed Lupron hard. Told me that it was a "trial" to see if a hysterectomy would be ok for me. I had been against it in the past, but I bought my doctor's words of the majority of folks who have issues had issues with the signs/symptoms of menopause itself. Not the shot.

For some reason I didn't follow the "typical" course of action. It took over 4 weeks for that "cleansing" cycle and it knocked me flat on my back (literally) for over a week. My breathing got so bad I ended up in the ER, and it still has not returned to normal. Everything pointed to a clot, but no clot was found.

At this point since I was having so many issues I made an appt to be seen at a major teaching hospital in Baltimore where they do a lot of endo research. It took a while to get things set up since they had to do the record review, etc... however now that I have had my initial visit I certainly have a lot more information.

The basic gist of it all, it looks like a bomb went off down below. Bladder is not able to empty, ovaries affixed to pelvic wall cysts and all, uterus is folding over on itself, adeno and fibroids present.

Due to the severity of the situation, I was told I should continue lupron till I can get into see the uro-gynecologist mid-late Jan. The idea was even if it isn't working 100% in taking care of things, if it is suppressing even a fraction of the hormones, it would be worth it. Since it had just been over 3 months since the prior injection, I *shouldn't* go through the hell I did the first time.

My tailbone, and my ovaries beg to differ.. however it is what it is.

My biggest concern though is both my gyn and my pulmonolgist mentioned that it is very possible that endo has invaded my lungs. They want to do some more testing in Jan looking for this, and to assess the vessels of the heart.

Has anyone gone through this? My husband wonders if the lupron may have actually swung things in the opposite direction than was needed. Here it is, my hormones were supposed to be shut off, and I have "follicular cysts?!?" Hello I should NOT be ovulating! Then there is the "cyst" in my breast that has not changed at all since being on lupron (found on mammo/US) and now there is the possibility it is in my thoracic cavity?!?
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  #2  
Unread 12-29-2010, 09:13 AM
Re: Endo in Lungs? Lupron making things worse?

Jubilee,

For me, Lupron was not my saving grace by any means. I had many adverse effects. However, not all women do. Some women swear by it.

It sounds like your endo is pretty advanced. Have you sought out an endometriosis specialist? You mentioned having visited the Baltimore hospital, are they able to treat you as well?

In regards to your endo and lungs question, I have read cases in which the endo has spread to the lungs. While it is rare, it does happen.

I hope you are able to find answers and relief soon. My heart goes out to you.

  #3  
Unread 12-30-2010, 06:25 AM
Re: Endo in Lungs? Lupron making things worse?

Well in my home state of Indiana there certainly are not endometriosis specialists available. Thus the reason why I took the advice of some friends and made an appointment with Hopkins.

While no particular doctor is billed as being an "endometriosis specialist" there, it is mentioned in many of their materials as being a condition they treat. I am set to go to their pelvic floor center, where they have have a multi-disciplinary approach. The uro-gynecologist can handle the reproductive and bladder issues, and they work in conjunction with those who can do more extensive ressection on the bowel if needed.

I am set in January for a full set of pulmonary function tests, cardio workup, and consults with all that and the uro-gynecologist.

With the lupron, my breathing is getting worse (again) and I really am concerned that I am going to end up in the same state I was last time unable to work more than 20 hours a week, and flat on my back most other times.

I don't have hotflashes.. I might be a bit more cranky, but nothing that has been too much of an issue. Headache, shortness of breath, and the fact things look a lot worse than prior are the big concerns I have.
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  #4  
Unread 01-05-2011, 10:58 PM
Re: Endo in Lungs? Lupron making things worse?

Well it is almost 100% certain that the endo has invaded my lungs. Once again going into cycle, increasing shortness of breath, elevated clotting factors in blood, and this time, "patchy airspace disease, and curvilinear densities" spotted on X-ray, though no nodular disease was on the CT.

Now, I can't work, can do little stuff at home for fear I might "toss a clot" or end up with a collapse lung at anytime. Due to the severity of the problem, my appt with the pulmonary dept has been moved up, and looking at possibly thorascopy (with da vinci?) for endo removal. I would appreciate hearing from anyone who has had endo in their lungs.
  #5  
Unread 01-06-2011, 01:23 AM
Re: Endo in Lungs? Lupron making things worse?



As you probably know, endometriosis of the lungs is rare. We have had some members mention it so I have done a bit of searching to try to find a few of them for you.

See if any of these posts are helpful:

https://www.hystersisters.com/vb2/sho...8&postcount=12

https://www.hystersisters.com/vb2/sho...91&postcount=1

https://www.hystersisters.com/vb2/sho...5&postcount=96

https://www.hystersisters.com/vb2/sho...44&postcount=1

You might also find these articles helpful:

http://www.vitalhealth.com/patient-p...-the-lungs.php

http://www.endometriosis.org/lung_en...s_wallace.html

My goes out to you and I wish you all the best ! in there!

  #6  
Unread 01-06-2011, 08:01 AM
Re: Endo in Lungs? Lupron making things worse?

Thank you for the links. It does help to know I am not the only one who has had to go through this. I am curious if anyone here has had a thorascopy done for their pulmonary endo? It would be nice to know what to expect..
  #7  
Unread 01-06-2011, 08:11 PM
Re: Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo any

Wow! And I thought I had it bad. I hope everything goes ok for you )
  #8  
Unread 11-11-2011, 10:11 AM
Re: Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo any

I know that this post is a bit late but I just found this wonderful site and I quickly found your post about the endo in the lungs, I too have pulmonary endo. I have never heard of anybody else w/the dx and neither has anybody else in my area. I have always had horrible menses and have had d.u.b. in the past and have had only one d/c in the past but after having a child in 2007 when my hormones from nursing subsided i developed bronchospasms which brought up bright red blood in which i went to the dr. who of course treated me as if i had the plague! the cough every time got worse and worse i went to pulmonology who of course sent me for ct's etc in which showed nothing by this time i had finally noticed a pattern that it was starting a few days before my menses. when i told my pulmonologist this she said that she wanted to do a bronchoscopy right around my menses which was hard because i was so off schedule and having it every 2 wks or so. the bronchoscopy showed endo in my lungs. knowing that hormone therapy was a sure way to treat,we tried just light hormones with birth control which worked mostly. this January my blood pressure went up and had to stop the birth control and sure enough my sx went out of control again even worse and now with irretractable migraines also which neurology suspected to be also endo since they didn't follow past history for me or where not treatable and followed the same pattern as the pulm. My gyn. decided to opt for a treatment of lupron to see how everything would "react" to it before opting for the hysterectomy even though my husband and I had already discussed it and knew it was already the option since we knew the effects of long term hormones didn't seem like something that would be something to go through or had been studied very well and the migraines were definitely having a negative effect on quality of life. I have to say that the lupron had its downs and I wasn't happy to do it the 3 months I was on it seemed to last forever but it did work. I was able to function at work and home until my hysterectomy was performed. My dr. was surprised to find not as much endo. as expected but I did end up with stents in my ureters, endo on my bladder, a total hyst. and BSO which was not a surprise. I am happy with my results so far no migraines, less kidney pain which I just contributed to achiness from the lupron, and my pulmonary status seems to be cleared(I haven't been back to pulm.yet for f/u). A very rare diagnosis indeed that we share. Unfortunately your endo sounds much worse in your abd. cavity and I hope that you are doing much better since your surgery as well, please do share that if you don't mind?! There isn't much info out there about this dx since its so rare even in the medical journals, my husband didn't understand that until the day of surgery when the pre-op area was full of dr.'s asking a ton of questions-been a long frustrating road! Good luck to you!
  #9  
Unread 04-09-2013, 05:40 PM
Re: Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo any

Hello,

I'm not certain if you're still posting threads but wanted to let you know that I have been diagnosed with endo on the lung (specifically my right lung). I have had 6 right sided lung collapses since April of 2011 and each have corresponded with day 2-3 of my cycle. Have had multiple lung surgeries and procedures done and nothing seemed to work until I went and saw an endo specialist and he put me on Lupron and Letrozole for 6 months and so far (fingers crossed) I haven't had a collapse.

I have unfortunately had bad side effects on Lupron and am now trying a new drug called Visanne (with the Letrozole).

If this doesn't work will need to look at having both ovaries and hyster (but endo specialist is not open to doing this as I'm 36).

Did your lung symptoms get better or where they able to be treated?

Thanks.
  #10  
Unread 04-09-2013, 08:43 PM
Re: Endo in Lungs? Lupron making things worse? Thorascopy done for pulmonary endo any

I am sorry to hear others are having trouble with this as well.

Fortunately my lung symptoms did resolve after surgery. While I certainly have scarring, and my lung capacity is not what it should be, I can at least walk, talk, and not want to pass out. I was 38 at time of surgery.

Unfortunately, it seems that I might be having some trouble post Sx with abdominal symptoms again, and working through all the stuff Lupron put me through. I have another round of tests starting next week.
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