Endometriosis and chest pain

[Nikneja]

Hi,

I was diagnosed with extensive endometriosis via a laparoscopy last weekend after 14 years of being told I had IBS. I have been getting a pain in my left chest which is like a spasm and makes me gasp on and off for years and now I’m worried it’s linked to endo. I asked my gp about it and they said it was costochondritis but from what I’ve read it definetly. I’m waiting to speak to the endo specialist so I will ask them but does anyone know how they would find endo in the diaphragm/ lungs/ heart areas? Is it an MRI?

Thanks,

Annie

[tmjourney]

Hi! Nikneja, this type of endometriosis you are talking about is called Thoracic Endometriosis. I have it actually! Your symptoms sound like they could definitely be TE related, plus if you have extensive endo it raises the likelihood more. To know definitively you would get CT of chest with contrast or MRI with endo specific protocol, if you suspect it in the lung you could also get a bronchoscopy. However, if it is on the diaphragm it will not show on scans. TE often does not show on scans and has to be diagnosed and taken out via Surgery. The CEC in Atlanta has a lot of info about TE and their surgeons are the best in the world (they specialize in TE).

[Nikneja in reply to tmjourney]

Thank you for getting back to me with all your helpful comments. I will ask the specialist when I next see him (i'm in the UK). Bit worried as had a few dizzy spells recently plus these pains and now I know how bad the endo and after all the wrong diagnosis I have had in the past has made me quite anxious. I will push for CT/ MRI scan when I next go. Thank you : )

[tmjourney in reply to Nikneja]

No problem there are great groups on fb for TE, I’m In two and they have been very helpful! There’s lots of women who have it and doctors who treat it in them! Just remember you aren’t going crazy

[Nikneja in reply to tmjourney]

Thanks chick! I’ll check them out! I’ve wrongly been told I have IBS about ten times, a gluten allergy, ulcerative colitis once, restless leg syndrome, stress, anxiety and bad posture causing my symptoms! When they finally told me I had endometriosis I couldn’t stop smiling 😁😁

[Blb21 in reply to Nikneja]

Hello, wondering if you have any update on your post and symptoms? I also was diagnosed with "extensive endometriosis" in 2014 when I was 21 years old. It recently got me thinking what even is extensive endo?! I was young and naive so self managed my symptoms with birth control (it stopped my periods so symptoms got better).

I have other symptoms which I have never thought about endo before. For years I have had random pain in the left side of my chest, sometimes a sharp shooting pain (feels like someone is grabbing tissue inside my left breast and pulling at it) - what sort of chest pain is yours? I was diagnosed with fibroadenoma in left breast (benign tumor), but now not sure if endo?? I often have dizzy spells and also shortness of breath most recently, when going up a small flight of stairs I'll get breathless and tight chest and feel like my heart or lungs is pounding. Also bowel symptoms, I've been told I have IBS and have been put on low FODMAP diet, which isnt really easing symptoms!

My consultant never wrote in my letters where the endo was, just that it was extensive, so wondering whether it is perhaps bowel or thoracic..

I'm in the UK too, which consultant have you been seeing as I am looking for a new referral?

Thanks 😊