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

I can relate to how you are feeling and the excruciating pain of chest tubes and lung surgery.  Hang in there as there is light at the end of the tunnel.

In Jan 2015, my right lung collapsed. At the time I was also told it was a spontaneous pneumothorax, a bleb bursting on my lung - a condition that mostly affected young, tall, skinny athletic males.  I of course, did not fit the category as I was a 49 year old female, relatively fit and healthy and certainly not tall. They did the surgery and 2 weeks later at my follow-up appointment I was told it had collapsed again. I was rushed back in and another horrible chest tube inserted to reinflate it.  That appeared to do the trick however a couple weeks later, it collapsed again.  To make a long story short, it took two lung surgeries, five (or six) collapses, numerous chest x-rays (about 40!) and horrible chest tubes for them to finally acknowledge it was possibly related to my period - a rare condition known as a Catamenial pneumothorax.  In the meantime I had scoured the Internet trying to figure out what on earth was happening to me and came across a site written by twin sisters who had dealt with this issue and done a lot of research themselves.  A total hysterectomy including removing both ovaries appeared to be the cure.  After presenting all my research, my gyno and lung docs were still not convinced as no endo was found in my lung according to the biopsies from both lung surgeries.  I was put on a 3-month course of Lupron Depot to see if the issue would resolve.  It did and they finally agreed to perform a complete hysterectomy which I had in Sept. 2015.  I am happy to report that I have been collapse free since then - same results that the sisters have experienced.  I am still healing from all that my body went through but so happy to be better and back at work after 11 months of awful pain. I developed a very painful frozen right shoulder as a result of the lung surgeries. I have been working with a naturopath, going for massage therapy and doing some very gentle restorative yoga to get my strength and flexibility back, as well as alleviate menopausal symptoms.  It is important you do not go on any estrogen for six months after the hysto, so as not to have any endo return.  Funnily enough they did not find any endo in my pelvic region during they hysterectomy.  So weird.

You are so fortunate to have run into your Gyno this early on!  Take care of yourself, I wish you all the best.

I have a similar story --began same time as you, am almost 49 now.

What lung surgeries did you have?  Exactly?  Who did the surgeries?  Did surgeons have experience with thoracic endo?

Did they find ANY endo in any of the surgeries?  Sounds like no?

What is the recovery like after salpingo hyst?

Would you be willing to talk on the phone?  I am trying to decide what to do, I've had 8 lung collapses now since Feb 2015.

sorry to hear you are going through this.  Would be happy to chat with you - how can I reach you?

sharlynn

So happy that I could help.  It's a horrible thing to go through and I had to do tons of research on my own to figure it out as the docs did not seem to know much.  I am not a doctor or expert on endo but from all that I've read it appears it might go away once there are no more hormones/estrogen feeding it.  Hence the importance of staying away from HRT/estrogen for at least 6-months after hysterectomy and removal of ovaries.  Take a look at the catamenial-pneumothorax site for more info.  Hope you feel better soon.