Dorna’s Story – Coping with Lung Endometriosis

It was about 4 years ago and me and my then boyfriend (now husband) were play fighting when all of a sudden I started to cough up blood, We thought nothing of it at the time but exactly 4 weeks later the same thing happened again, when I went to see my GP he told me that I was too young to have anything serious and to go home and stop being so silly.

Every month the same thing happened I coughed up blood, and every time I did I went to A&E they treated me for blood clots which meant a week in hospital and that didn’t stop it they then got so fed up with me turning up in A&E they started treating me in the waiting room in front of the usually Saturday night drunks and druggies.
I eventually managed to get an appointment with a chest specialist after 8 months of coughing up blood and as soon as I sat down his first question was did I cough up blood during my periods, until that point it hadn’t registered in my head that to two ends were connected in any way.

It then took several months and several different scans from radiation to Iodine to try and track this endo, unfortunately it could only be done on the first day of my period and the NHS the way it is you cannot ring up on the day to arrange a scan, so it was all down to guess work and we never managed to get it on the exact day, so I was referred to a gynaecologist who did a laparoscopy and followed up with Danazol.

I had a massive allergic reaction to Danazol and was put onto Zoladex. I only managed 4 months on the Zoladex as it made me ill and what I didn’t realise until I spoke to my brother (who makes Zoladex) I was being given the male version of Zoladex without any hormone treatment to prevent osteoporosis. After a few months respite from treatment I realised I was still in excruciating pain and went back to the gynaecologist to be told that as far as he was concerned I had received treatment and was cured if I was still in pain I should have a baby !!

I went back to my GP to ask for a referral as I was not happy with his attitude or diagnosis, this is when she broke the news to me that the gynaecologist had left the endo on my left tube as it was too difficult to remove.

This is when I was referred to Miss Rose who is a specialist in Endometriosis, and within months she had me in for a laparoscopy and removed everything she could see with a laser and then put me on a continuous course of the pill, unfortunately this did not agree with me and about 12 months ago I was put onto Provera, which I have to say is a miracle drug in as much it has been the first time in years that I have lived without constant pain, unfortunately the downside is I have piled on the weight gaining 3 stone, and it would appear that the pain is returning. I am due to go and see Miss Rose next month but I am not holding out much hope.

As far as surgery goes for endo on the lung, I think they try to treat the cause rather than the effect so they eliminate the endo in other areas first and then I think if I had continued to have chest pain and coughing up of blood then they would have had to re think about the lungs, unfortunately the endo in the lungs only appears on scans on the first day of your period so unless you are as regular as clockwork it is hard to locate.

I have to say though that my husband has been a God send he’s been there throughout and has stood by me when a lesser person would have walked away, and in answer to your question of information unfortunately this seems so rare that I have not found any information or anyone else in my situation.

An Update on Dorna: October 2001

I have since returned to Miss Rose and am now back on the Zoladex but this time I am taking the three monthly injections and HRT (unlike last time when I was not given HRT !!) so the side affects are a lot less very few hot flushes etc. And hopefully next year after my February injection Clive and I are hoping to start a family I will keep in touch as to what happens and will have some good news by the end of next year.

Dorna