I spoke to my consultant yesterday who called me saying ‘good news your CT was clear…I replied with ‘and what was my MRI result?’. My surgeon then looked to us up and went very quiet. He confirmed that in fact the MRI confirmed Thoracic Endometriosis in the Pleura very close to my vena cava.
My surgeon had found endometriosis is my diaphragm back in 2019. I found someone else who wanted to operate on it but my surgeon advised it was nothing to worry about and to ‘forget about it’ and have a baby. I did that and within 10 months of having my daughter my diaphragm became so much worse and fast. For months I’ve been pushing for tests and his response was ‘oh no you don’t have thoracic, that’s heavy!’. Well here we are. I am just so drained and sad and tired and I am sick of having to constantly advocate for myself to the people who are supposed to understand the most!
Has anyone experienced something similar and had it treated?
Thank you!
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BlueTit98
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that’s so awful I’m sorry you’re going through this. I can’t comment on thoracic endo specifically but I totally feel your pain with having to advocate for yourself and feeling totally helpless. Sending love and thoughts xx
I have it! I’ve never found anyone else on here that’s had it confirmed for definite. Bloody brutal. And I know what you mean. I’ve had to explain my condition to so many doctors. No one knows what it is or understands it. It is exhausting, and totally debilitating.
I’ve had 11 pneumothoraces (lung collapse on the right side only) now. 5 before the op and 6 since because the op didn’t work.
Mines on my diaphragm and parietal pleura at the lung base. The surgeon resected some of my diaphragm and stitched a biological mesh to it to reinforce it and try to make it air tight, and took away some of my pleura too in the hope it would make the king fuse to the chest wall to stop it collapsing. I had a brilliant surgeon but for whatever reason my body hasn’t formed enough adhesions from the surgery which I needed to prevent subsequent collapses. It’s meant to have a 2% failure rate so if you choose to go ahead with an op then it’s unlikely you’ll be as unlucky as me.
What are your symptoms if you don’t mind me asking? Where do you live in the country? I can recommend my surgeon if you want a second opinion. He’s a specialist in thoracic endo x
Oh I’m so sorry you have it too but I’m glad we’ve found each other!
That sounds absolutely horrendous. I’m so sorry you’re still struggling even after such a major surgery.
My symptoms are constant pain across mainly my right diaphragm but also my left and on my right side towards the bottom towards my middle it’s a much stronger pain around the size of an orange. Nausea, dizziness, breathlessness, pain on certain movement, pain and breathlessness and feeling of pressure if I’m lifting heavy or having to carry my daughter a long way, pain when driving from the vibration, pain when trying to sleep as it hurts my chest more lying down and I get woken by the pain and have to switch sides more. It’s much worse before during and after a period!
I’m in the UK in oxfordshire, whereabouts are you? Yes please, I would really appreciate it xx
Oh my goodness you poor thing. Are you getting any pain in your right shoulder or shoulder blade? Have they definitely not found any signs of lung collapse arpund you period? That’s when mine goes and I get a lot of pain then, breathlessness/fatigue/dizziness. I really struggle with lying down too and feel much more tight chested. Can you push for an X-ray when it gets bad around your period?
Yeah I was completely gutted about the surgery. We’re wanting to go through ivf too as had no luck trying this past year but they won’t go near me until my lungs sorted 😔
I’m in London. Surely they must have decent people in Oxford though? I know there’s a guy in Bristol but not sure which is closer for you.
Yes! Lots of shoulder pain, but strangely much worse on my left. Feels just like the gas pain after surgery from a normal laparoscopy. The fatigue is horrendous I do understand.
They have done absolutely nothing. My consultant hadn’t even bothered to look at my results which I’d been waiting for for months until our appointment, the appointment I booked myself because it was taking so long. He completely dismissed me having thoracic endometriosis since finding endometriosis on my diaphragm during surgery in 2019 and made no effort to investigate what’s on the upper side of my diaphragm until I really pushed for it this year. It’s just so frustrating! I feel like it could all be prevented.
Thank you for sharing who you’re with! I’m hoping there will be. My consultant isn’t in oxfordshire. So I’ve booked to see the person that runs the endometriosis clinic and research centre at the JR in 3 weeks time. I’ve also pushed for a referral to the thoracic surgeon but he’s not an endo specialist but at least he’ll know how to do the surgery. The guy my consultant was ‘tempted’ to suggest hadn’t done endometriosis surgery before but other complex surgery. I’ve found another in London too but he’s private and so expensive!
Hope you don’t mind me jumping on board this post- I’ve just posted my own post as I myself am at breaking point with diaphragmatic endo pain- I came across your post which said you were going to the see the team at the JR- I live in Oxfordshire too and under the care of this team/ how did you get on at your visit and have you got a plan forwards?
I was diagnosed with endo in 2011 and have had a couple of lap surgeries over the years but only confirmed/treated in pelvic area. After suffering symptoms of diaphragmatic endo for 5 years I reached breaking point when my periods returned after my son was born and finally had an MRI which finally confirmed at least one large nodule growing awkwardly between my diaphragm and my liver.
They hospital discussed my scans at an MDT meeting at the hospital and it was decided that I should try to conceive another child before having surgery due to the high risks involved with immobilising my liver etc. We were not ready for baby no 2 just yet so they suggested I tried zoladex injections to try and help suppress the endo. I ended up on this for a year, it helped reduce my pain for a short while but it was short lived and I had ALOT of side effects so I decided to stop the medication at the end of August. Periods and ovulation pain now back in full swing and excruciating, I have an about a week of the month where I feel ‘normal!’
Telephone update with my GYNEA last week now I’m off the medication and they want to send me for more scans to see what’s going on as I haven’t had any for a year and the pain shouldn’t of continued whilst on the zoladex.
Feeling lost and like I’m not really being given the best advice from anyone- thinking of paying for a provide opinion once I’ve had the scans but in the meantime I would be so interested to hear of anyone’s own personal stories similar to mine and if surgery or anything else has helped you?
Hi! I’m so sorry you’re struggling, it’s crazy how similar your journey sounds with some of this. Do you want to drop me a private message on Instagram on my endo account endo.mama.journey and I’ll drop you my number so we can have a proper chat! If we’re not too far maybe we could even go for a coffee xx
ugh post lap bloating is the worst! my understanding is that the shoulder pain occurs when your lung Collapses. Next time it happens, I’d suggest going to a&e and asking for an X-ray so then it’s on the system and you have leverage with the doc you’re seeing who keeps dismissing you. So he found you had it on your diaphragm but then said he wouldn’t do anything about it? Seems a bit weird! Does he know what he’s doing?!
Great you’re going to see someone else. I’d just be wary of any thoracic surgeon without endo experience. They will generally treat you like a normal thoracic patient and not do anything about the diaphragm which is the main cause for post op failure (ignore me, mine is a special case 😂) my surgeon has said he’s had to do repeat ops on a lot of women where the other surgeon has done a bodge job and not operated on the diaphragm too. Happy to talk about this offline if easier? My insta is @elecorc. Not sure we’re allowed to put phone numbers on here! X
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