Hi everyone, I was diagnosed last April. I have a 4.5cm lesion on the left lung in between the two lobes. I started coughing up significant amounts of blood which lead to my diagnosis.
I was put on Depo and Zolerex which was supposed to stop my periods. After they continued and further CT scan showed two more lesions on the lower left love and one on the right I decided to have a full hystorectomy (ovaries removed). I started on Letrozole back in I think it was July last year (also I think called Femara) which is used by breast cancer patients to stop any estrogen.
The coughing has definitely got better but I still cough up blood during the time my period would be due and have nausea and diarheorra (usual symptoms for me before the op) and it has been 3 months now.
I am very tall and slim, aged 39 and have had extensive Endo in my pelvic area for years.
Surgery to remove the large lesion is not an option at this stage because of where it is placed and the size of it. They say they would have to take my left lung out completely as it us just too big. Not an option for me with two young children! So CT scan coming up and I am hoping it has at least shrunk a bit. I am grateful I don't have lung collapses but not sure why I haven't given the size of the lesion? I have had asthma all my life and as a result have kept very fit and heathy to keep it under control and wonder if that has any bearing on why? No idea. Anyway have a great endo specialist here in New Zealand so I am sure we will work something out!
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Lillybee
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I am happy you a have an endo specialist in your country and that you are positively minded.
Just recently when I was doing research on endo I stumbled upon a research that suggested there's a link between endo and asthma but also thyroid problems. Unfortunately I cannot find it now but I bet if you google you'll find it.
What made me mention this is that when I went to the hospital for a pre-surgery check-up the anesthetist suspected I might have asthma...
I'll have to wait to be tested for that though as the system works slow in DK.
Have you looked at endo diet? I am easing myself into it now - have quit sugar and almost cut out all dairy but it's still a long way to go...
Thanks for that I will try and find that article. Re the diet I am pretty good but need to really get serious about ni wheat as I have been a bit slack and now that I am not exercising as much I really have to watch my health! Thanks for replying xxx
I am 43 and have severe Endo. I've recently started to feel pain in lower rib cage so having CT scan to check Endo for lungs or kidneys. I wasn't sure if a CT scan will show anything nut you confirmed it will!
I have been on fairly good diet and quite active with cycling and jogging, those are my stress release tools!
But this is probably why I got only diagnosed last October.
Good luck, hope the lesio has shranked and yes, I like the positive thinking, too, it helps, thanks a lot!
Good luck with your CT scan. Hope all goes well. The earlier you catch it the better as it gives you a couple more options. I have CT every 3 months at present. Taking Omega 3, bone health capsules and a general vitamin table called CAA all from a website called healthhouse.co.nz. The Letrizole is probably keeping the lesion at its current size but it can't hurt to make sure I have all the good stuff helping it!
Thanks for the supplements tips, too! Am taking evening primrose oil and normal multivitamins. Will study more about good supplements, yes, some supplements supposed to help the condition! xx
Thanks for posting your story and I'm really glad you have a doctor you're happy with. Letrozole is given to prevent the aromatisation of androgens in your body into oestrogen. Letrozole is an aromatase inhibitor and it is recommended for post-menopausal women who have had breast cancer. Even though your ovaries have been removed, oestrogen is still produced in small quantities. Aromatisation happens mostly in our fat tissue so being slim will also hopefully minimise that process.
Try looking at Melissa's blog. She is in NZ (but from SA) and she deals more with diet, lifestyle and naturopathic approaches. endoempowered.com
I also find Aubree's blog really excellent peacewithendo.com and her book too. It's called From Pain to Peace With Endo.
While neither of these women had endo on the lung they both navigated their way through very challenging endo situations and managed to minimise their symptoms. While that worn out saying 'everybody is different' is so true for endo, I'm sure you'll find all sorts of interesting things to try in a bid to help your situation even a little bit.
I have heard that women with endo are more prone to many other conditions and asthma is one of them. I had a bit of asthma as a teenager and again in my early 20s but it disappeared. I'm no scientist but I don't think one causes the other. I think it's more a case of a particular internal biochemical context that can give rise to all sorts of different health issues. It will only help matters if you try to alter that internal biochemistry. The blogs I mentioned above have plenty of info on how to do this.
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