Endometriosis in lungs, does anyone else experiencing this?

[Jendn83]

Hi everyone, I came on here hoping to find other women how have experienced endo in their lungs, i have suffered with severe pain and organs glued together for years before i had a hysterectomy 3 years ago with only 1 ovary left, for a while everything was great, but the ovary started burning and feeling sore around the abdomen abdomen higher, before covid it was on my diaphragm now its up through the left lung and causing problems with breathing especially when lying down or any activity, is there anyone who has experienced this and what happened?im currently on the prostap injection monthly but its only working for 2 weeks at a time and im back to square one with pain in every breath i take, any advice would ne appreciated

[Blue_Sky12]

hi, I’m sorry I’m not able to share anything helpful but I’ve had slowly increasing chest pain and shortness of breath for the last year/18 months. It really fluctuates with my cycle and flares up particularly on the same specific days of the cycle. I’m currently on a very long waiting list for a second opinion as to whether I even have endo…but I wondered if you’d be willing to share how you got to a diagnosis and understanding of where endo is in your lung/diaphragm?

I had surgery for suspected endo nearly a year ago, and despite me listing pain and other symptoms in my urinary and respiratory systems, the surgeon basically only looked at my womb and ovaries and concluded I don’t have endo, so I’m really hoping for a better experience this time around at a different hospital.

[Jendn83 in reply to Blue_Sky12]

Hi blue_sky, im so sorry your surgeon was not helpful! I had a battle proving where i had endo years ago as i had explained i could feel it everywhere including the vagina abd was told it doesn't go there by the specialist, i kicked up alot about not being listened too and how many times i had been sent to a&e for being bent over in pain and when they did my hysterectomy they finally looked and found it there as well, its awful when they dont listen! Is there any other surgeon you can speak to? I find just because they say they are a specialist doesnt mean they know a lot, you probably know will no doubt know more about your condition than they do! Im still waiting on them going in to confirm its endo but they have run every other test and my heart itself is fine. They symptoms stopped when they put me on prostap along with the symptoms in my abdomen but now the injection is only effective for 2 weeks most and all symptoms are back with a vengeance, it started off with pain and bubbling sensation on my diaphragm just before covid hit, then weirdly hiccups which made the doctor investigate what was happening and endo was suspected then but its progressed aggressively since then were i can actually feel it in my lungs and it severly impacts breathing for me especially at night ive had a 24 hour heart tracer and it recorded bpm of 55 going to 110 while lying down all through the night. I dont known if this answer helps but if i can give anymore information please just ask

[Blue_Sky12 in reply to Jendn83]

ah thank you so much, I really appreciate your reply! I’m glad you’ve had some progress but really hope you have some proper help soon

It sounds like whatever I have is much less advanced anyway. But the symptoms to match up and it’s so cyclical which is what made the GP happy to refer I think. I’ve had chest x rays, an ecg and a 24 hour trace plus loads of bloods and a bunch of bowel investigations too. Also had kidney ultrasounds because of cyclical pain in that area but believe it or not everything so far has come back fairly normal. I have no idea how long this waiting list is, my referral was put through in May I think…this hospital does have a BSGE centre attached to it though so I’m hoping their main gynae might have a better understanding/awareness of endo. My first surgeon was lovely and extremely validating of my pain, she suggested surgery really quickly and thought the chances of me having endo were high. But then the op was so basic and so gutting to be completely discharged with no further investigations for the pain etc! Hoping this time around, whenever it comes, will be more specialised!

[Jendn83 in reply to Blue_Sky12]

It sounds like your having an ordeal to! Its horrible what endo patients have to go through! Just because they don't see it in one place internally doesnt mean its not anywhere else, i really hope they investigate proper for you this time and you can get proper treatment x

[G3miniStar]

I honestly believe this is what I've got as well as I feel like my lungs are 'sticky' and rattle when I take a deep breath sometimes. Especially first thing in the morning. Consultant didn't spot it during my last lap though, so I've got to rely on him being the expert at seeing it.

[Jendn83 in reply to G3miniStar]

Hi G3ministar, omg yes the stickiness!!ive been trying to explain this sensation for so long! I have the same symptoms! In the morning the 1st few deep breaths hurt so much and i get that rattlemor sometimes a bubble sensation! Are you getting another operation for him to see it?

[G3miniStar in reply to Jendn83]

I will mention it to him at next appointment I think, to see if he thinks it's anything. But endo on the diaphragm/lungs is next level endo I believe so I'm really worried if he does say it's something. Hopefully yours can be found, or some sort of treatment given! x

[Jendn83 in reply to G3miniStar]

I'll keep my fingers crossed for you! Im on 3 inhalers atm to help my breathing with it and have an emergency appointment next week with specialist, if i can find anything else useful out ill post it on here x