Danielle’s Story about Endo on the Lung

It was 3 years ago now when i started finding it hard to take a deep breath and swallow. I put it down to the fact i had a bad cough and that i also smoke.

It was a few months later when i first coughed up blood which scared the hell out of me. I then realised that there was definitely something wrong and it wasn’t all down to a cough. I went to see my doctor who told me i had a chest infection and prescribed me antibiotics. he also sent me for a chest x-ray just to be sure. Results of my x-ray came back as clear and so i presumed it was just the chest infection. A month later from the 1st episode i coughed up blood yet again and went back to the doctors who sent my phelgm away to be tested. I still hadn’t realised that this was happening only when i had my period. My phelgm came back clear and by this time i had coughed up blood once more. The doctor then wanted to send the blood i was coughing up away and so i did this waiting a month at a time. this time the results came back with an infection and i was prescribed the correct antibiotics. Yet again the same thing happened, i coughed up blood and this time i noticed i was on my period and that it seemed roughly 4 weeks between each episode. I went back to my doctors again and i explained about it co-inciding with my period and he mentioned to me endometriosis although he stated this was extremely rare. He wanted me to go away and keep a diary for 3 months which i did and sure enough on the 1st day of my period i would cough up blood. My doctor referred me to a chest specialist who carried out a CT scan which showed up nothing. He then performed a broncoscopy which is a camera down my throat into my lungs to see any abnormalities and they found a patch of endo on the tubes from my throat to my lungs. I then had to be referred to a gynaecologist for my treatment. Ihabe now finished my treatment of hormone therapy and i feel worse now than when i was coughing up blood. My throat feels constantly raw and i still find it difficult to breathe deeply and swallow. I seem to pick up colds and coughs really easily and i feel physically run-down. My whole body aches, even brushing my teeth is an effort and i’ve been back to my doctors who are saying i have stress??????? I don’t have a lot of pain occassionally i get cramps in my chest but they are more irritating than painful. The chest specialist did mention to me the possibility of cutting part of my lung away or freezing the affected area but i havent heard from him since.

I hope this helps sorry its so long-winded. There is very little info out there on endometriosis in other parts of the body and i never knew if my symptoms were due to endo or something else. I’m relieved to find that its not all in my head and that the symptoms are real.
By Danielle Parker