Endometriosis UK
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Diaphragmatic endometriosis? Experiences/ symptoms/ treatments?

Hi I know that diaphragmatic endometriosis is quite rare but since my periods started I've experienced bad upper right quadrant pain and pain in my back by my kidney that radiates up my back and shoulder and my front and it feels like it's burning underneath my lung and it sometimes spreads to the left side. I've been to a and twice with chest pains and upper right quadrant pains and every scan they did on me came up fine.

I was diagnosed with endometriosis a few months ago during a laparoscopy however it has not helped my higher pains at all and people keep saying it's too high up to be endo but I'm not convinced.

Has anyone had any experience with diaphragmatic endo? What were the symptoms and the treatment? Xx

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Hi, I am awaiting my lap & it looks like I have a blocked Fallopian tube & endo cyst. My gnawing aching pain , seems sometimes not to classically fit .... I get pain under my ribs. & around my back as well as hip & awful pain down my leg. However , I did read a recent article that said pain can radiate . So it does not nesserialry mean the endo has spread! I also feel the pain which I have is all on my left side & down my leg which is now weak but I can't exercise as it causes more aching !!!!

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Ah no poor you! That's true I've heard that it can radiate too so we will see. Good luck for your lap! Xx

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Diaphragmatic endo would usually cause shoulder pain, especially on the right. This is due to the phrenic nerves on the diaphragm that pass through the chest, shoulder and up through the neck. It is the shoulder where the pain is felt - the same as when you are filled with gas at a lap. Scans won't show this unless it is actually in the chest and even then it would probably need to be done by a thoracic consultant familiar with it. If your lap was done in general gynaecology I should get a referral to a specialist centre where they will be more familiar with rare endo. Click on my name and look at my post on how to find one.

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Not necessarily. If you have lesions on your liver or under your ribs, then you would feel it in the areas this lady is complaining of. Infact, I found a medical journal that states that if a woman has RUQ pain and pelvic endo, then the first port of call should be to look for diaphragmatic endo. Remember the this disease affects everyone differently.

I get the same area of pain and two specialists agreed that it sounds like endo in upper abdomen/diaphragm.

I do also get shoulder pain but that may also be due to GORD...which appears to be caused by upper endo lesions.

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Yes, clearly there can be a combination of symptoms. Whilst right shoulder tip pain is a classic sign others such as shortness of breath, pleuritic chest pain (more often on the right side) and upper abdominal pain on either side, especially if cyclical, should raise suspicion again especially in the context of severe pelvic endo.

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I've had similar.

It started with RUQ pain that was assumed to be gallstones originally, but none were found.

I'm asking for my gynaecologist to check my diaphragm during my next surgery.

My gastroenterologist agrees with me that my symptoms are likely to be endo.

I get upper abdominal pain, usually right sided but can be middle and left. It can be a dull ache or severe spasms.

GORD.

Painful gurgling, bloating, pain under ribs, constricting chest pain, flank pain.

I've had to stop wearing bras as it hurts too much. Even crop tops are painful.

Did you get a diagnosis?

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