Diaphragmatic / thoracic endo experiences? (new here!)

[poeticdisaster]

Hello - I'm new here and wondered if anyone has any experience / advice regarding possible diaphragmatic or thoracic endometriosis. Apologies if it is a bit long!

I was diagnosed with endo (by laparoscopy) in 2017 after 12 years of recurrent attacks of pain in my ribs/chest that couldn't be traced to anything and didn't respond to any treatments. A doctor suspected diaphragmatic endo but the surgery didn't find that - although they did find endo in my pouch of douglas (which they removed) and on one of my ureters (which they left as a urologist was not present).

Since then the chest pain attacks have continued. They seem to be cyclical, happening between ovulation and my period most months. They feel like a vice tightening around my ribs, making it hard to take a deep breath (although not impossible), and coming in waves like contractions/cramps. They make me feel sick and dizzy. It's completely debilitating and frightening, and the attacks last for hours to days (shortest ever was three hours and the longest was five days). Last month I tried going to A&E during the attack, but they found nothing (as I expected) and gave me oral morphine, which had no effect at all. I've had enough tests at various times to know that it's not heart or lung related even though the pain is around my chest.

The gynaecologist referred me for a CT scan which I managed to arrange for right before my period was due. It didn't show any sign of endometriosis in the thoracic area, although it did show an enlarged thymus gland.

Has anyone else had any experience which sounds like this? I've been battling the rib/chest pain attacks for nearly 15 years now, and have been misdiagnosed as all sorts of things (abdominal migraines, intercostal neuralgia, psychosomatic pain, muscular injury, IBS etc) and tried multiple treatments (painkillers, nerve blockers, seeing an osteopath, breathing techniques, anti-spasmodics) all with no effect. Knowing that I do have endo elsewhere in the body and given the cyclical nature of the attacks, endo still seems the most likely cause, but I can't find out about anything that sounds quite like it and all the doctors and consultants I've seen are confused by it too. I'm wondering about diaphragmatic endo on the top of the diaphragm as described here: endopaedia.info/subtype16.html but I still don't know how to proceed or push for treatment if that's even likely.

So far my treatment options are zoladex and HRT for three to six months to see if the pain stops (which would indicate that it is endo in spite of the CT scan showing nothing and then I would be referred for possible thoracoscopy) or finding my own means of pain management. The gynaecologist has asked my GP to investigate autoimmune avenues relating to the enlarged thymus too (though I've been tested for a lot of those already and come up negative). I can't take the combined pill thanks to migraines and the POP has triggered episodes of my mental illness whenever I've had it before and I don't want to take that risk again at this point in time. Zoladex also worries me for that reason. I'm 34 and currently not taking any medicine at all, and I'd really love to keep it that way as long as possible!

Any advice or similar experiences would be really great. Thanks for reading!

[Serwaa81]

Hello lovely I can't believe I found someone that is going through the same thing as myself I've had this problem since 2015 after operation when I lost my baby I woke up with pain on my right side of my ribs and I've been in pain ever since I've been misdiagnosed with loads of different things gone had loads of X-rays . Going to see a specialist cardiac tricks surgeon and they believe that it could be end endo of the diaphragm. The pain is unbelievable I cannot sit up properly I cannot lay on my side I cannot wear a bra is absolute nightmare so as I'm just so low and so depressed because I'm live with constant pain and it's an absolute nightmare for children so as you can imagine it's so hard. I've been doing some research and that pain could be caused by adhesions and scar tissue so this is what I'm going with I want them to meet go and have a look where the area of the Rib side where the pain is coming from because the zoladex has have definitely helped but the pain is still there then pain around the ribs is really sore so that's why I'm out so if you would like to talk about it or have any questions I would love to speak to someone like you because I've only had this for 4 in March for years and it and it's I cannot believe you've had this for 12 years and is only now they've diagnosed you it's just so so bad.