ENDO in lungs

[Walt46]

My wife has suspected endometriosis in her lungs and is due to have a major operation, justvto see of endo is present. I can only see a handful of cases of this worldwide - anyone else have suspected endo here?

Thanks

[Fithevax]

Hi, I've been convinced for years that I have it on my lungs but no one will believe me, however the only symptom I have to suggest it is there is monthly pain in my upper chest area. I'm curious as to whether your wife has different symptoms to be scheduled for an investigative op?

♡ Sending lots of well wishes to your wife.

[Walt46 in reply to Fithevax]

Hi, my wife had anoperation to remove it from her stomach and it was on a few of her organs too. He did say it was on her diaphragm, so convinced it may have got in this way, if not the blood stream.

She said it feels like an elephant sitting on her chest each month and can’t lie down flat. She had a few breathing tests at the time of her cycle, and they said she is not taking in a lot of air. She also had a collapsed lung at one point but couldn’t work out why - we assume it’s the endometriosis. She’s had X-rays, which of course won’t show it so the only way of finding out is going in and having a look.

She is getting worse each month and once her cycle is over she is fine again so it has to be it is what we’re thinking. Trouble is, we are having to educate the doctors over hear on it and it took some convincing to get the operation done. There are only a few cases reported worldwide, or are at least documented. I have been in contact with them and they suspect my has it.

My wife is pregnant at the moment and has been fine the last few months so we will see where we are after it. The operation is quite a risky one so have to way it up as if it stays like it is, she’ll cope, but if it’s spreading in her lungs then need to act soon so it’s her choice and no answer is an easy one!

Sound familiar to you? Will be interesting to know.

Thanks

[Fithevax in reply to Walt46]

It does sound familiar, yes. I've never suffered a collapsed lung so it may be that mine is milder if I have it at all.

Further down this page there are related articles and some very good reads of peoples stories who have been diagnosed with it and the re-occurring theme does seem to be collapsed lungs. The other theme is people also having to educate their doctors on it (as I've had to do with my endo also). Please have a read as there were some links posted and people offering direct contact for more in-depth experiences around the opperations etc.

I hope you guys find the right support and treatment and have a happy healthy pregnancy Xx

[Walt46 in reply to Fithevax]

Thank you, I will take a look at other stories on here as I think it’s the only site which I haven’t explored.

I hope it eases for you in your chest and doesn’t get any worse. Some doctors suggest that the pain it’s cause elsewhere can bring on anxiety and make it feel like pressure in the chest, which may have some truth in it, but I doubt it’s the full picture of what’s really going on.

Women really do have to go through some horrible things. I do feel like endometriosis is starting to get the recognition it deserves, so hope there will be some good medications and cures in the years to come. 👍 x

[Bespp]

Hi,

I am exactly the same...conviced for years that is is my lungs as well along the plevic area. what you have described for your wife I could have not even put it in better words myself.

kuddos for you listening to her and supporting.

My pain extends to the right should, neck and arm. During the cycle it becomes unbearble and as you said everything goes back to normal.

I have an appt with my GP next week to ask to be rreferred for an MRI and see if they can dig further.

Sending all the best wishes!

[Walt46 in reply to Bespp]

Hi Besp,

Sorry you are going through something very similar. I don’t feel pain, but I feel your frustration.

I hope you get answers. My wife had an MRI but sadly it didn’t show anything, but I’m sure you know that an MRI is unlikely to pick up endometriosis anywhere in the body unless it’s significant- or at least is my understanding anyway.

Always nice to have an MRI and rule out other things regardless I think and have that leave of mind.

I’ll update as and when things happen or feel free to ask questions in the meantime. She is currently in hospital as are baby is expected to come around 30 weeks 😬, as did our last one. They are note sure why, but we believe it’s due to endometriosis taking up baby’s room.

Thanks x

[Afrohair]

It’s very hard to get diagnosed since we are never believed in the first place I have been investigating chest pain for the last year and breathing struggles to the point I have to stop or I think I will drop dead if I don’t it usually occurs different parts of my cycle good luck to your wife with surgery x

[Afrohair]

Can I just say what a treat it is to have such a supportive husband aswell you must be a diamond to your wife not all endometriosis sufferers have that Kind of support x

[Walt46]

Oh thank you ☺️

[Pinkmini]

I was diagnosed with it after a bronchoscopy

[Walt46 in reply to Pinkmini]

What did they see exactly and what was the treatment plan? Hope your doing ok.

[Dance_20]

Hi I am sorry to hear about your wife’s suspected condition. I have thoracic endo and I underwent a major lung and diaphragm surgery last month and still recovering from a horribly painful operation. Prior to this surgery I suffered two episodes of pneumothorax - first one when I was a few weeks pregnant and the second one when my period started after my miscarriage. A few weeks ago I posted about thoracic endo/catamenial pneumothorax on this forum when I joined this online community but haven’t found anyone else yet on this forum who has been diagnosed with this condition. It’s quite a detailed post if you wish to read it. I am very happy to help you and your wife with any further queries you may have. My lung endo would not have been diagnosed if my lung had not collapsed. You are right it is a very rare condition so can be very daunting. I hope your wife does not fall into this category but if she does tell her I am there to share my experience and offer any support she needs. I hope she gets well soon and many congratulations on the pregnancy.

[Walt46 in reply to Dance_20]

Thank you so much. Sorry you are going through all of this, it must be difficult when there are limited cases to seek guidance and comfort from. I believe there are lots of undiagnosed cases out there with endo in the chest cavity, but as you know it’s a phantom pain to many in the medical profession.

I’ll certainly will read your posts and keep in touch. I’m just doing as much research, so when my wife is back to her normal cycles she has some contacts and sound advice. I know she won’t be thinking about this until after the pregnancy as there are issues already with the pregnancy and her health ( in hospital as we speak), but I’m sure she will love to speak to you when the reality of this creeps up on her again!

I am surprised to see someone on here that has been through it, I did contact two ladies in the US who got in touch but limited responses. They are borne doing really well a few years later is what I can tell you

Speal soon and really hope you improve everyday as others have.

Thanks,

Andy

[Dance_20]

Thanks Andy. I am trying to think positively too and hopefully in a few year’s time I’ll leave this nightmarish experience behind me. Your approach about your wife’s case sounds sensible. These investigations and surgeries are invasive and morphine needs to be administered constantly. The only thing I was allowed to have was a chest drain procedure (without painkillers) when I was pregnant when I had a collapsed lung. I hope your wife can just go past the pregnancy and childbirth smoothly. In a few month’s time I will have a better idea about my condition too so will be able to provide and share further info. As you say let’s stay in touch and best of luck with everything in the meantime.

[Walt46 in reply to Dance_20]

Thanks u. Good luck for the next few months, I really hope things get better sooner rather than later. I’m sure you’ll be helping so many in your position soon once there is a better understanding of it, so we’ll done you.

Andy

[Dance_20]

Thank you Andy. I am just trying to understand if my endo travelled into my thorax following ivf treatment. If you don’t mind can I please ask if your wife’s pregnancy was natural or through ivf? If it was the latter did her pneumothorax symptoms flare up post implant? Many thanks again

[Walt46 in reply to Dance_20]

Hi Dance, Both pregnancies were natural. First was born at 30 weeks due to endo and it looks as tho this one will be prem too. They also thought it would be difficult for my wife to become pregnant again, though it happened quite quickly. Really sorry you are going through this. x

[Dance_20 in reply to Walt46]

Thank you so much Andy. Great to know natural pregnancies can happen. I was told I can never conceive naturally because of my deep infiltrating and severe endo particularly in the rectovaginal area. Nothing could be done to clear my blockages without damaging my rectum. Again wishing you and your wife all the very best.