Diaphragmatic or Thoracic endometriosis?

[GemmaAB]

Hi, I hope you're all ok today.

I feel like I'm an endo veteran now. I was diagnosed over 10 years ago and I'm level 4. I have recently found out that the endo has spread to one of my lungs. I'm reaching out to see if anyone on here has Diaphragmatic or Thoracic endometriosis? There is so little know it's not even a top on the list.

I used to get this sharp stabbing pain that I thought was in my left ribcage and just shrug it off as another issue that was one to many on this. But in my last lap the surgeon casually said while we were there, we cut away some endo on your lung so we go that as well. I asked if that might have been the cause of the stabbing pain and he confirmed it would have been. I was so out of it and in a bit of shock I didn't think to ask he right question. I didn't even know you could get endo in your lungs then.

I don't want to both the doctors at the moment because they really have their hands full and its not urgent so I thought you guys might be able to help. I just wanted to see if anyone knows of any good articles to read or more about it and if there is anything I should be doing?

Thanks in advance!

[Stacey85]

I would like to see what people say, I'm waiting to find out.

My chest pains are so bad I end up in A&E and I have gone from being a semi professional cyclist to basically walking only on good days.

I'm really lucky I saw a cardiologist at A&E and he's going to get to the bottom of it for me or make sure someone else does.

I should get a letter this week to go in for an MRI on my pelvis and chest and then he is going to push my referral to the BSGE centre. As whoever made the referral in March only made a routine referral and the cardiologist said theres nothing routine about my case.

xx

[PurpleSynesthesia]

Good morning lovely,

That must have been so shocking to hear that news. I have read articles where endo has even been found in the brain, but apparently it's quite rare.

I don't actually even have a diagnosis yet, but I wanted to jump on this post (sorry) because I get stabbing, hot pains in my left ribcage area which started at puberty, over 20 years ago.

I'm sure I've read a post on here, not too long ago, where someone has mentioned this before.

I would definitely find out more if I were you, perhaps write everything in an email to the specialist secretary & also give them a call to ask them to reply to said email.

I know the NHS is super busy, but it is their job to ensure total patient care - your surgeon sounds like a good one so probably wouldn't want to do half a job.

Let us know what you find out.

All the best xx

[GemmaAB in reply to PurpleSynesthesia]

The stabbing pains sound the same, I had them for years. They would cause me to gasp or even yelp for lack of a better word If I took a breath in to deep or laughed a certain way. They are gone since my surgery a year ago.

[PurpleSynesthesia]

Me again, I found this thread from years ago. Xx

healthunlocked.com/endometr...

[GemmaAB in reply to PurpleSynesthesia]

Thats so helpful thank you!

Im really interested to read everything I can about it.

Thanks you xx

[EndoG]

Hey, I have thoracic endo. I had a procedure around Christmas to have it removed from my lungs and I’m waiting on surgery to have it removed from my diaphragm. It’s also come back in my lungs already so I’ve got to have the last surgery again next month.

I don’t have any suggestions for what to read though, sorry. I’ve not found much about it online except that it’s “really rare”.

Do make sure the drs keep on top of it though. I have fluid on my lungs. A side effect of untreated diaphragm endo, and it’s doubled in the last month. My dr is pushing forward my next surgery because of it as there’s a danger of lung collapse.

I’m sorry I couldn’t be of more help, but I’m here if you want to talk! X

[GemmaAB in reply to EndoG]

Im sorry you are having to have so many surgeries, it just really feels like we got the short end of the stick sometimes. I hate my body.

I don't seem to have really terrible symptoms like I have read about so I don't feel I should bother anyone about just yet. But my husband says you need to start the process if you want to get seen. Its so hard to know what is serious or an issue as changes happen so gradually and I just become ok with the normal of pain or bothering symptoms.

I hope you surgeries go well xx

[EndoG in reply to GemmaAB]

I’m actually quite happy about the surgeries, I’ve spent 8 years trying to be diagnosed and they said it’s not possible for me to have endo and wouldn’t even look! I’m hoping now they’ll have to look for pelvic endo.

Definitely start the process ASAP.

I didn’t have really bad symptoms at first, but within a year it got so bad that I cough blood and can’t breathe properly on my period. It just started off as like a stitch under my ribs but now I have to go to A&E every time.

I know it can feel like you’re being a burden, especially as there’s so much going on right now, but please see a dr as soon as you can xx

[MandyLouise in reply to EndoG]

Hey can I ask if they found your endo on your lungs through an MRI? I have similar pains on the left side of my lungs as well but the doctors always put it down to musculoskeletal pains. I have a surgery booked in 2 weeks and not sure how far they’ll go. Evidently because of previous damage they’ll be going in under my left rib cage so who knows but is it worth mentioning at this stage?

[GemmaAB in reply to MandyLouise]

Hi, Of course, they didn't see mine in any previous scans as I hand not brought it up. I had my lap booked to sort out everything in pelvic region they had found it in my bowl as well. I had left it five years since my last lap and the regular endo pain was unbearable so I won't do that again! But they originally said they would go in and see if was a two-surgery job or one becuase of how much there was.

When I woke up they said they went as long as they could and felt they got enough and that they had also found the lung end and sorted that as well. It was a suprise to everyone. They made it sound like it was not a big deal at all.

They got to it from the incisions made in my lower half so I'm not sure if they could see everything or how thorough it was.

I would tell them everything, I had no idea how far and how many problems endometriosis can cause.

I hope it goes well!

[EndoG in reply to MandyLouise]

Hey, no my MRI was completely clear. My thoracic consultant still suspected endo after it and decided to do a bronchoscopy and they found it throughout my bronchial tree. He said MRIs don’t normally pick it up anywhere. X

[kelsbels88]

Hi I have it in my diaphragm too found when I had my surgery last August. I’m lucky in that I do t get any pain from it but I do get some achey discomfort in my shoulder. Don’t know if they are related and tbh I always thought the pain in my shoulder was ovulation pain now I’m starting to wonder if I was wrong.

Also makes me laugh “it’s very rare” and yet all of us have it or suspect it 😂

Take care ladies xx

[GemmaAB in reply to kelsbels88]

So true, Loads of women probably have it. The just don't have enough research or testing on it....