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Post by fishguru on Nov 27, 2011 3:40:16 GMT -5
semicolon - My spontaneous pneumothorax was in the right lung. So... right now, I'm betting on catamenial pneumothorax.
I never really noticed any cyclical pain before, but come to think of it... right before my period starts, I usually have at least a couple of hours of diaphragm pain. I never attributed it to my diaphragm, I always thought it was my "stomach" giving me trouble right before my period! How odd!
But I've never had any breathing difficulties before. That was really scary. But now I'm worried about next month......
I emailed my gyno, so we'll see if she gets back to me on Monday. I'll let y'all know!
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Post by semicolon on Nov 27, 2011 8:54:37 GMT -5
chasinghope- most of my pain is/was cyclical but it doesn't have to be. I had a lot of pain in my side about 5 weeks after surgery on my right side, I think it was adhesions and I tried a lot of stretching and massage. Keep an eye on it, maybe it's still the healing process!
Fishguru- I chatted with a woman who had this and she never really noticed breathing difficulties. She was a pretty active person and thought she was just a little out of shape (she was doing stairs for exercise and was slightly winded), then with the pain she thought she had thrown her back out. It is definitely not a cut and dry thing, but I am impressed that lady at the hospital knew to ask you about endo!
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Post by fishguru on Nov 27, 2011 18:25:39 GMT -5
semicolon- Yes, I *never* would have thought endo to possibly be involved with my collapsed lung. Thank goodness that surgeon mentioned that! I hope I get a response from my gyno.
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Post by fishguru on Dec 7, 2011 1:41:02 GMT -5
Just wanted to let y'all know that I heard back from my gyno. In all her years of practice, she has never had a case of thoracic endometriosis although she knows of women who have endo in their lungs and they cough up blood with their periods. (Lovely)
But.... she was nice enough (and interested enough) to get me a refferral to the Pulmonologist! So I get to see him on Dec 20th. Which might be a good thing as that's when I am expecting my period this month.
I'll let you all know what happens. I plan on going into the appointment totally prepared so I'm not given the brush off. (Which sometimes happens when I start talking about endo.)
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Post by Karen on Dec 7, 2011 7:01:29 GMT -5
Ooh, good luck!! If you can, bring some medical literature on it with you in case he's never heard if it! Your hope he'd do research on his own but just in case... I'm glad your gyn was helpful!
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Post by semicolon on Dec 7, 2011 19:41:19 GMT -5
If you want any other articles let me know, I might have a few more bookmarked. I'm interested in what he might have to say, and how your next cycle goes! Just in case you wanted it, this is the doc who lists throracic endo as a specialty: www.atlantathoracicsurgery.com/dr-gouldman.php
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bambi
New Member
Posts: 7
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Post by bambi on Dec 11, 2011 4:51:19 GMT -5
Hi there,
I also get funny pains in my chest and breast area sometimes. I can get random 'stitch' feeling pain which i never understood too. Ever since i was 10 i just thought everybody had some sort of everyday pain so i haven't thought about it until right this minute reading this post. I've been on the pill continuously for about 10 months, so im not too sure if it happens during my cycle. Im having a lap in 4 days and i was wondering if you do have it on your lungs or in that area will they be able to tell this during your lap? Will there be any clues they need to look in other areas? Or should i mention something on the morning of my surgery?
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Post by fishguru on Dec 22, 2011 1:29:43 GMT -5
Hi all! Saw the pulmonologist yesterday. He was quite aware of catamenial pneumothorax or thorasic endometriosis. He said it's VERY rare, but does exist. The endo doesn't usually affect the lungs so much as it does the diaphragm. When the diaphragm can't function properly, excess air invades the pleural cavity, collapsing the lung.
Apparently, my pneumothorax was a "good size" and he agreed with my previous doctors inserting the chest tube, putting me on the suction pump and keeping me in the hospital.
Because I was a "one-timer", he didn't want to immediately start cutting into me for exploratory surgery; which would be the only way to get a definative answer. (Thank you!) But... given my history and experience, he said he agreed that it's probably Catamenial Pneumothorax.
Here's the rub.... I can do nothing and wait and see if I have another pneumothorax. OR....I can start on BC pills and stay on them until I hit menopause. The BC pills my gyno suggested was Levora-28, a high progestin, low estrogen, high androgen potency.
Now here's the thing... I just started on Spironolactone back in October for my hormonal acne which had gotten REALLY bad. Being on spiro has done AMAZING things for my face! The Levora, with it's high androgen potency would cause me to have the bad acne again.
Now.... I know it sounds super-superficial of me, but after having suffered with the bad acne for the last 5 years, to finally have a clear face is like.... so amazing! And I don't want to go back to having the huge, cystic acne spots. I know that sounds horrible considering having another collapsed lung, but.... I was so depressed with the acne and to have a clear face now...I'd almost chance having the collapsed lung. I don't know if anyone here can understand my feelings, but if you've ever had bad acne....
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Post by Karen on Dec 22, 2011 4:33:49 GMT -5
I think you have every right to ask for another option. There are other BC options that aren't as androgen dominant, and I think it is well within your right to ask! I'm glad the doc has an understanding of what's going on, but can you defer to your gyn for treatment?
How do other members treat this? I recall someone using femara. Other suggestions?
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Post by semicolon on Dec 22, 2011 19:47:45 GMT -5
It sounds like he knows a good deall- I'm relieved for you!! I don't think you sound superficial at all, acne can be terrible and it is nice to have something that works!
For me, I went the route of surgery to remove the endo from the diaphragm but mine hadn't perforated it yet. From my research, they can repair the diaphragm with mesh if needed. I'm hoping mine will stay at bay, we am trying to conceive so I am not on any BC- not the most helpful advice, I'm sorry! I think your gut will tell you if it is catamenial vs spontaneous pnuemothorax, and I say go with Karen's advice to explore all BC options.
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Post by fishguru on Dec 28, 2011 3:02:12 GMT -5
I still haven't made my decision on going on the Levora or not. I'm really torn. I checked with my gyno about other BC options. She said the newer pills like Yaz/Yasmin (that help with acne) have been shown to cause more blood clots than the older BC pills like the Levora, so she wants me to try the Levora.
Argh... still thinking...
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Post by Karen on Dec 28, 2011 7:19:52 GMT -5
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Post by fishguru on May 20, 2012 0:42:58 GMT -5
Aloha all!
I thought I would add to this Spontaneous Pneumothorax thread.
Well.....it happened again. My right lung collapsed again a month ago My gyno is sure it is Catamenial Pneumothorax now. A specialist is flying in from Oahu (I'm on Maui) to see me in 2 weeks. She's a reproductive endocrinologist.
My gyno was over on Oahu a week or so ago, talked to the other docs there about me and only 1 doc had EVER seen anyone with Catamenial Pneumothorax. Needless to say, I was the talk of their lunch break! LOL
My 1st lung collapse was in Nov. 2011. I was doing ok afterwards. Periods coming normally. Then in January, the timing of my periods started to go funny. My gyno put me on continuous Levora on March 1st. All went well; no real side effects and no period. Until April 11th when I started bleeding.
It was fairly light. Within 2-3 days, I had the usual chest and back pains. A trip to the urgent care and a chest x-ray confirmed my right lung had collapsed again.
So...the Levora did not work to stop my period. And I am still bleeding. I haven't stopped since April 11th. My first week was light. The 2nd and 3rd week were very heavy. These past 2-3 weeks have been lighter, like heavy spotting.
Because of my constant bleeding, my gyno switched me to Necon. It has slowed it to the heavy spotting because I was getting very weak and anemic with the 2+ weeks of heavy bleeding. But the Necon has not stopped it.
So...here's my thing...back in October of last year, I started taking spironolactone (50 mg a day; a low dose) for my hormonal acne. It works great. When I started the Levora, my acne kicked up a little, so my doc said I could increase my dose to 75 mg a day. When I stopped the Lecora and switched to the Necon, the acne has flared back up due to the change in hormonal dosage. I have not increased my spironolactone dose this time.
I have a feeling the spironolactone and its anti-androgen abilities might be somewhat involved?? I have to ask the specialist.
So...with my 2nd collapse, now my gyno wants to go full on into starting me on Lupron and then finally have a hysterectomy. Both of which, I am not happy about. So I'm hoping seeing the specialist and getting a second opinion works in my favor.
This whole endo thing is crap.....
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Post by semicolon on May 20, 2012 9:45:07 GMT -5
Hey fishguru- you are famous now! Lol!
For this latest one, sis they do chest tube and the whole nine yards, or see if it came back on its own? I'm sorry, this must be very stressful. I would go for the second opinion on the Lupron; fears that I would have for you is 1)that you don't exactly know where the endo implants are (diaphragm, in the plueral space of the lungs, both), so is there some repair work to do? 2) Lupron, ugh! 3) a hyst is not a cure for endo, and if you don't want that there should be another option.
I would definitely want someone with experience with dealing with endo in the thorax but I know that's tough because it's so rare, and you live on an island!! I don't know much about the spirolactone, maybe someone else has a thought.
Great to hear from you, although I wish things were better!
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Post by semicolon on May 20, 2012 9:46:50 GMT -5
Ps- do you/have you during this recent bout had any pain in the right side, under the ribs or like a stitch in your side?
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