Endometriosis on the diaphragm?

[ElizaEliza]

Hi all,

So I wanted a bit of advise...

I have severe endo and I am on the waiting list (again) for more surgery. Recently I've been experiencing right shoulder pain which runs down the front and back of my right shoulder, into my right arm and goes across the right side of my neck. When I experience the shoulder pain, my chest feels tight and I get a sharp deep pain to the right hand side of my chest when I breathe in. The pain is mixture of a muscular ache (it feels painful it lift my arm above my head and a sharp, deep pain.) It seems to be worse when my endo pain is worse, when I take painkillers ( tramadol daily) the pain subsides but comes back when the painkillers wear off.

This has happened during my past two cycles and disappeared shortly after my period but I didn't connect it with endo. At the time, I thought I had slept funny but I remembered thinking it was quite intense pain to have from just sleeping in a funny position as the pain felt a little bit like whiplash. I'm not ruling out that it could be other things but nothing in my lifestyle has changed recently and I haven't had any physical injury which would cause this. It seems odd that it is cyclical too.

I'm not sure if the two are connected but I have had a dry cough probably for the past 4 months, I don't cough everyday but when I do it's like a deep, chesty smokers cough - which always take me by surprises me. It's the sort of cough that would make you think you are developing a chest infection. I usually feel the need to clear my chest, like theres something moving around and I repeated dry cough, whatever is in my chest moves around but I don't cough it up, it just seems to resettle. I have heard people talk about bubbling and cracking sensation with diaphragm endo but I'm not sure if I would describe it that way.

Does anyone have diaphragmatic endometriosis? Can you advise of your symptoms and how you were diagnosed? Do my symptoms sounds similar

to yours? Did anyone think they have endo on their diaphragm but it turned out to be something else?

Any advice would be very helpful

x

[LoliLou95]

Hi,

I have diaphragm endo and all surrounding areas like my liver but minimal around my pelvis etc.

I suffer with this pain that you are describing quite frequently and unfortunately it doesn't stop until the endo cycle and pain stops I have overdone it on medication before as I found ibuprofen really helped however I then burnt my stomach lining so I would advise if you do use ibuprofen then maybe one every 4-8 hours with one paracetamol. Additionally try deep heat rub as I found this helped to ease my pain slightly!

Our symptoms are very alike especially with the shortness of breath and also I sometimes get a stabbing pain in my rib/lung area which makes me worry that the endo has gone through my diaphragm as it is only 1/4 of an inch thick and therefore can attach to the lung but I won't find that out until June when I am scheduled for diagnostic and removal.

I would consider mentioning it to your Gynaecologist for them to look at during your operation to see if it is there and if not they could possibly refer you to a different department to explore, but unfortunately it does sound like endo!

Wishing you a pain free day

Lou xx

[ElizaEliza in reply to LoliLou95]

Hi Lou,

Thanks for replying to me. I went to see my GP this morning, luckily the doctor I saw was really good and didn't think I was crazy for suggesting endo on my diaphragm! She was concerned about my persistent cough and has referred me for a chest x-ray, my cough isn't that bad and the pain is much worse but I guess any diagnostics tests at this stage would be useful. I'm going to try and push for an MRI scan as I know these are the most effective

at diagnosing endo. I have bad endo on my bladder and bowel but endo hasn’t impact on my ovaries much. Like you, it also seems to grow elsewhere though!

I’m sorry to hear about the stabbing pain you’ve been experiencing, I hope it has not spread to your lungs. I get a lot of intense stabbing pain in my pelvis that last for a minute or so throughout the day. Hopefully it is just nerve pain and the endo hasn't penetrated through your diaphragm.

Were you diagnosed through a laparoscopy?

Lizzie x

[LoliLou95 in reply to ElizaEliza]

Hi Lizzie.

I'm glad you've got an understanding doctor who has pushed you for further tests.

Yes I was diagnosed diaphragmic endo during my lap in Feb, now awaiting to see gynaecologist and possibly a specialist in this area as it is quite rare to have diaphragm endo! Another lovely lady on here has lucky passed me details on of a specialist in this area which of course I will do the same with you if you are diagnosed with it on diaphragm.

All the best of luck to you with your tests

Lou xx

[Kellymarie27]

Hi Lizzie

I also have severe endo on my bladder, bowel, diaphragm and also in my lungs. The symptoms you have are very similar, I am very lucky that I was successfully diagnosed last April by a specialist in London who said that it is overlooked by so many drs as they just say "it can't possibly be higher than your pelvis"!!!! I had a chest ct done which picked it up in my lungs. They put me on zoladex injections to help shrink everything as it's tricky to remove. Good luck with all your tests.

Kelly

[Judit999 in reply to Kellymarie27]

Hi Kelly,

Could you pls tell me how did zoladex work for you? I also have diaphragm endometriosis and possibly endometriosis in the lung. Im afraid of zoladex and chest surgery also, and i would really appreciate if u could share your experiences about the possible treatments.

Thanks a lot!!!

Hope you are having pain free days!!

hugs

(and sorry for my English )

[AkiBoo]

Hi, Eliza

I have endo on my diaphragm as well!

It was confirmed during excision surgery. Unfortunately, it wasn't excite as it was not on my surgeons list and she now says too risky. I was hoping to get rid of them all so I am disappointed.

I have similar symptoms apart from dry cough. I am on Mirena and Serazzet to stop my periods. So pain is not cyclical. I am managiong OK but wished to remove them all.

I also have endo on my liver too.

Hope you find a good consultant and get a very good treatment!

[Tallulah182 Moderator]

I have been diagnosed with severe endo affecting bowel etc. I have never been diagnosed with diaphragmatic endo but I did have the symptom you are experiencing with the shoulder pain. I also used to get a severe pain in my shoulder when I laughed or lay down. I raised this concern the last time I was in the hospital and was told I must have strained something (unlikely.bedrest)! Don't think I was much help here but at least you know your not alone xx

[Pdoodles]

Hi all ,I believe I have endometriosis on my diaphragm ,not diagnosed but am going to see a gyn in June as the treatment where I am is pretty poor. There is a fantastic facebook group for thoracic endometriosis, I have found really helpful and just wanted to share. Xx