Hi all,
Has anyone been diagnosed with endo on their diaphragm? I’ve given up waiting for NHS and went private this week, and consultant is 99% sure it’s on my diaphragm and possibly lungs. Interested to know if anyone has this, symptoms, treatments and how it was diagnosed. Thanks! X
Hi! I have, I was diagnosed during a laparoscopy and it had covered my diaphragm. My symptoms were difficulty breathing, swelling underneath my ribs, pain in my shoulders and top of my back. Ive had surgery on my diaphragm where I had to have my gynaecology consultant and a thoratic consultant present at the operation during the difficulties which can occur. It hasn't cured it, but did alleviate some of the pain - however, its now been 2 years and has come back on my diaphragm.
Oh gosh, sorry to hear this. It sounds very similar to me regarding symptoms. I have sharp pain underneath my left ribs, which is worse when I’m due on and ovulation. A tight ache in my left shoulder, underneath the armpit and into my upper back. It’s been slowly getting worse since July, up until the point it’s unbearable. I’ve had 3 lots of surgery for my endo in the past and was lucky enough not to have as much pain for years. The big one is whether it’s worth me spending £4K to see if it’s my endo causing me this pain x
That sounds very much like its on the diaphragm - the problem they had when they started to talk about surgery with myself is that it does depend on where there they able to excise it due to the diaphragm being so thin. I also had a pneumothorax afterwards, which is common, because they inflate your lungs to be able to get to the diaphragm. Its a pretty serious surgery, but I think if you're in a lot of pain its worth it. But I'm sure they'll explain all of this to yourself. That is a lot of money though, I was lucky enough to have mine on the NHS but I waiting a good year and a half and obviously this was before the pandemic. I hope they're able to sort something for yourself- the pain is not nice at all! I was also given an inhaler from doctor and told that I had developed asthma, but they're not sure whether the two are linked. This could possibly be something to relieve the chest pain for yourself? X
Thank you for your replies, they’re much appreciated! Have you tried any analogues before? It was suggested I try synerel (not sure on spelling) but I’m always sceptical of hormones as I haven’t had much luck in the past with them. I’ve been waiting for an appointment with gynae under the NHS since March, and that’s just for consultation. I’m in so much pain and have a 3 year old, and off work. I just see the money as a needs must, as not sure I can hang on much longer. I don’t tend to suffer with shortness of breath or breathing problems (yet) x
Hi I have it on my diaphragm but was completely unaware until my lap in august. I am lucky as it has caused me no trouble so far (touch wood) good luck xxx
Was it picked up on a lap? My concern is that the Lap won’t diagnose it. I think I’ve had it for years looking back, but the pain has only really ramped itself up this year. X
Yes was found during my Lap in August xx
Fingers crossed it’s found on mine! X
Did you get an answer? I'm in exactly the same position!!
Hi,I don't have endo, I don't think (!?) But have all the same symptoms on left rib, breathing and like a weird movement suddenly makes me breathe deeply
plus twitching down my side and stomach, did you have twitching also?.
Might be a draft question but what are the symptoms of endo? Pain?
MRI results lead time? Diaphragm endo removal?
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Endometriosis on diaphragm 
