Lung and diaphragm endo? Norethisterone?

Hi all,

I'm slightly concerned I have now also got endo in the lung and diaphragm. I coughed up a little blood when on my period and a cat scan revealed a nodule in the right lung. Does anyone have this?? I also have breathlessness and fast heartbeat at my period.

Also, is anyone on Norethisterone? I'm thinking of taking it to stop my next period. Has anyone taken it and had bad side effects?

6 Replies

  • Hi - endo on the lung is extremely rare and may be a complication of diaphragmatic endo. The first approach would be medical treatment with possible surgery if this is ineffective but it should be dealt with by a skilled thoracic surgeon. This is a case report on such a case:

    I assume you have endo elsewhere so if you are in the UK this should all be coordinated in a specialist BSGE endo centre. I have just started a facebook group that you might like to join as one of the admins has experience of diaphragmatic endo:

  • Thanks for this, yes have endo elsewhere. I will join the group xx

  • Yes I have this too as endo has covered all my internal organs! Like you they found 4 nodules in different measurements one is 4.5 inches long. Also I have a few little nodules on my left lung😨 Is why I'm asthmatic and using inhalers daily twice a day🙀

  • Hi Sonia,

    So sorry to hear that, how did they diagnose it as endo in the lung? Did you have any tests? I'm also asthmatic. Are you on any hormone therapies? Surgery? I feel like my endo is rampant at the moment and need to stop periods! I am at bsge centre but not seeing consultant until Dec.

    Thanks X

  • When I went to mount Sanai hospital downtown Toronto, I was coughing up blood from my lungs they done both mri & Iv cat scan it showed up on both tests, I was very sick in January 2016, not only that I had walking psneumonia. They're are keeping an eye on it. I had stayed there over night and was breathing through the air oxygen, mid afternoon they released me and sent me home with 3 different inhalers, I had to use my nubilizer for one med. I'm trying to substain from using pills/drugs. I have read a lot on google ways to naturally cure endo and to reduce pains that are attached to it! I recently purchased Endovan pills this is day 3 and already most of my bloatness has significantly gone down. My bleeding has slowed down as well. The pain is stable meaning I'm finding pain relief thanks god, my mood swings are getting better, I'm getting my appetite back, and I'm sleeping th right night without waking up screaming in pain. I just wished I knew about these pills years ago I would of took them sooner. It's a natural supplement as well it will be long term for me because I didn't get this condition over night, it took years to become this way. It's costly but for the price for my health well being I'm worth it! So annually I would need to go to hospital for follow up in my lungs.

  • Oh no, that sounds awful. How did they know the nodules were endo and not just an infection or scars from an infection? I will have a look at these endovan pills and see if it's possible to get them in the UK. They thought mine looked like there was an infection so I don't know for sure if it's endo but seems likely. Xx

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