Thoracic endometriosis!

Hi All.

I've suffered with endometriosis for 17 years and had many ups and downs with it. I've undergone 10 laps to laser endometriosis and remove multiple cysts. My last lap was April 2015 where it's now on my bladder too. I've tried practically every treatment possible and now seem to have become immune to the depo provera injection therefore my endometriosis is back with a vengeance, mainly in my left side, back, groin and thigh. Two weeks ago I was rushed to hospital with chest pain and difficulty breathing. They thought it was a pulmonary embolism but thankfully it wasn't but they found lung nodules which my Gynaecologist has confirmed as endometriosis. It's so painful and draining im struggling so much and the pain radiates into my shoulder and neck, she has referred me to a dr in London as she hasn't dealt with it that often. Any advice or experiences would be greatly appreciated as I'm feeling very low at the moment with the thought of it spreading so much. Thank you x

11 Replies

  • Hi Kelly I have no experience of this but couldn't read your post and not comment. I'm sorry you're suffering and wish you all the luck in the world in getting it sorted.

  • Thank you so much Jean. Xx

  • Oh dear, I'm so sorry your suffering, the doc you have been referred to in London, I take it there in the BSGE list of specialists?

    I wish you every luck I getting this sorted,


  • Hi I'm sorry this is happening to you hun. Would you mind describing you shoulder and neck symptoms. It's just I get shoulder pain and neck pain sometimes. I also feel a tightening in my lower diaphragm at certain points in the month. Xx

  • Yes he has come highly recommended. I actually got a phone call today to see him on the 15th feb which is great.

    Mikkid88 it feels like someone is crushing my chest and back, I get days where I'm extremely breathless. The shoulder and neck pain feels heavy and a dull pain all the time. Do you have the same symptoms?

  • I had a very bad chest and frequent breathlessness, it improved to some extent when I started on Zoladex. I had a hysterectomy and both ovaries removed and 5 days later I was suddenly breathing so much easier. It was like I'd been wearing a gas mask for months and had then taken it off. I suspect the endo in my abdomen was preventing the lower part of my lungs from moving properly. My chest is still a bit congested though. I'm hoping that will improve with time. Can I ask how yours was diagnosed?

  • That is so good to know, when I saw my normal Gynaecologist we had discussed a total hysterectomy so I'm hoping that the specialist in London will agree and it will solve so many problems. I had a ct with contrast as they thought I had a PE and found 6 nodules in my lung which my Gynaecologist has said is endometriosis because of the symptoms. I'm unable to have a biopsy at present because I'm on warfarin life long for a clotting disorder, which also makes any bleeding worse.

  • Any chance you'd share their details please? I've had 2 collapsed lungs as a result of endometriosis on my diaphragm. My gynaecologist hasn't helped at all so would be interested to find someone that could help with this. Hope you're ok. Thanks.

  • Hi. I'm off to see him today so I will let you know what he is like and what he proposes can be done. Fingers crossed X

  • Hi Kelly.

    Ive just come across your post and wondered what diagnoses and treatment you have had regarding you thoracic endo.

    Many thanks x

  • Hi thank you for asking.

    It's been a long and tiresome journey but my doctors are amazing. My gynae sent me to a cardio thoracic specialist who has dealt with a handful of endometriosis cases and confirmed on examining the ct that I have endo in my lungs, I also have it in my diaphragm and stomach. He was shocked that the hospital who did the ct did not notice the bleed that had also occurred! I have not been allowed any surgery as they were not sure my lungs could take the anaesthetic so I'm on prostab injections to help shrink the endo. I've had my ups and downs with it as originally they used the zoladex injections but one didn't take and the symptoms came back straight away it was awful and scary. I felt like I'd gone back to the beginning again so they changed it to prostab as the body absorbs it better. It's been ok but due to the damage of my lungs I get lots of chest infections and at the moment I'm getting a lot of pain in my stomach and back again. I think it's really knocked my immune system as I'm low all the time. They would like me to stay on the injections as surgery is so risky but we are having another discussion in february about a full hysterectomy under the supervision of the gynae and cardio thoracic surgeon. It's quite a scary prospect. Are you suffering with similar symptoms?

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