2 episodes of lung collapse.

[December42]

Hello, I have had two lung collapses because of a Catamenial Pneumothorax. The first one in Oct 2010 and the second one Dec 2010. I had surgery on my right lung where it occured and I haven't had a big collapse since then. I was also told that this condition is rare. I haven't was never told that I have endo, so I am going to see my OBGYN. I get scared around my cycle time because i don't want this to happen again. Is there anyone out there that had one and if so then what do you do to keep it from happening again.

[Impatient]

It is rare indeed, you're a very special case.

As the endo elsewhere (if there is any) is not causing you any trouble by the sound of it, otherwise you would probably have been back and forth to the GP about it by now, they might have a look at it to see how far it has progressed on your other organs too, but that might need to wait for a different surgical procedure below the belly button. There is no reason for the medics to have known you had endo before the lung collapse if you hadn't shown any other symptoms.

endo is a weird disease, a tiny amount in the worng place can cause agony and havoc, and for some women there is extensive endo growing away quietly not showing too many signs until suddenly it has caused so much damage that it cannot be removed or treated properly.

I'm sorry I don't have experience of endo in the lungs to speak wisely on this topic, there might be some one else more familiar with it on this forum but not that I remember reading about.

It is very rare. Don't just rely on this forum though, because of the rarity aspect, spread your enquires far and wide. There are endo forums for New Zealand, Australia, and several for the USA too, and you might just have a bit more luck finding another lady with lung endo by enquiring in other English speaking countries too.

Another factor could be in your favour, if you had endo cells in your lungs, it is much more likely to be an isolated patch of endo, which has been there since long before you were born, and if they did get it all out by surgery then you have a very low risk of a repeat lung collapse.

That isn't always the case though and you might also find you have endo patches or lesions on organs in the lower stomach which are growing but not actually causing you too many other symptoms or pain at this stage. As every surgery has consequences in terms of scar tissue adhesions, the gynae team might prefer not to operate on you again if you are coping with endo elsewhere if there is any.

Best of Luck finding a fellow lung endo sufferer.

They will be somewhere out there in the world.

i hope the gynae is able to give you a more detailed picture of what they found during the op, and what your options are, which might help you to be less anxious about having a lung collapsing again.

And do keep us up to date, as there are bound to be other lung endo ladies in the future who visit here and would be grateful to read of your shared experiences.

[December42]

Thank you for responding to me. I also would like to know if this disease is deadly.

[Impatient]

Not in itself, endo isn't deadly, but there are complications that can arise from where the endo grows and they can cause significant problems if not acted upon.

As you already know, lung endo can cause lungs to collapse and that is a medical emergency and could be fatal if you are stuck somewhere unable to get to a hospital or get prompt medical help.

Endo can grow through the walls of other organs or the adhesions from endo can damage your digestive system or bladder and urinary system leading to serious medical conditions which left untreated could cause someone to die from complications.

luckily we live an age of anti-biotics and paramedics, so the risks of complications proving fatal are very low in the UK.

I should think the risks associated with having surgery and a general anaesthetic or a bad reaction to certain drugs or surgeries is more of an increased risk of being fatal than the endo lesions.

Probably the greatest risk is that of suicide, with depression resulting from having a chronic painful illness or the treatments for chronic illness.

There are recorded cases of women with endo having been in so much pain or is such a confused or anxious mental state that they have tragically taken their own lives as a release from their suffering. When the pains are at their worst, I would doubt there's hardly a single woman with chronic endo pain that hasn't contemplated ending it all at some point.

I know I have, and I know I am not alone. That isn't just a case of being depressed but of being desperate for relief from pain.

[Docval63]

Yes. There are at least 10 of us on this site alone. It's really helpful to read about everyone's experiences. Just search for "catamenial pneumothorax within this site, then you will see all of the replies. Hang in there and Good Luck..