Diaphragmatic Endometriosis

[ald28]

Hi there,

I had surgery last year for stage 4 endometriosis (21cm endometrioma, stent in ureter, almost lost my left kidney... I could go on!).

I have been suffering from severe right shoulder pain for several months now, but I keep getting fobbed off. I even had to have a trip to A&E last month as the pain was so bad, I thought I was having a heart attack. They said it was probably referred pain from my endo (I'm growing another cyst on my right ovary).

I've had an ultrasound and nerve test done, so the shoulder is definitely fine in that respect.

I have a referral with my consultant next week (after months of waiting), so I'm hoping to bring it up then.

Has anyone had severe shoulder pain that turned out to be Diaphragmatic Endometriosis? How difficult is it to convince your consultant to do another operation to have a look?

Thanks!

Al x

[Ems666]

Hi so sorry you are suffering.I can’t really help you as I’ve not yet been diagnosed I’m at the stage of ruling other things out first.

But everything so far is pointing to endometriosis.

You mentioned shoulder pain

I’ve suffered now for about 4 years with shoulder blade pain no one can find out what’s causing it tends to get worse when ovulation and when on my periods is yours the same?

I didn’t even think it could be endo related but now you’ve made me think and would explain the pain if it was.

Hope your feeling better soon

Emma. X

[ald28 in reply to Ems666]

Thanks for replying, Emma. Yes I've already had a diagnosis of endo last year, but not diaphragmatic endo. Got my appt today, so fingers crossed he believes me! How are you feeling? x

[Ems666 in reply to ald28]

Hi hope your appointment went well. Feeling pretty crap at the mow. Im due on the end of the week so all pains ramped up a gear.Got my op for hysteroscopy and biopsy Friday due to my womb lining being slightly thicker then it should having to be put to sleep when they do it due to it being too painful when they tried to do it when I was awake.

Emma xx

[Sdavies1010]

Hi Al, I’m so sorry you have awful shoulder pain too. It’s definitely worth a chat with your Endo Consultant and id recommend telling them you’ve tracked it for a period of time and it’s definitely linked with your other Endo symptoms.

I have stage 4, bowel and uterus adhered etc. Diagnosed by lap. I went back to discuss right shoulder pain and they were reluctant to go back in and do another lap to confirm it (which I agreed with as my recovery last time was tough) so put it in my notes as a diagnosis by symptoms. Also, they did tell me that they don’t tend to remove diaphragmatic as it makes the pain worse (they’d use ablation) so the lap would be purely to diagnose but not action to take so a lot to put me through.

I really hope this is of some use to you and you get the help you need from your consultant xx

[ald28 in reply to Sdavies1010]

Thank you sooo much for your detailed reply. Your endo sounds exactly like mine! I will definitely bring it up and see what they say. I've also read that they don't like to operate on the diaphragm, but I'm not sure how much more ibuprofen I can keep taking x

[CryBaby91]

I also have horrid right shoulder pain around my cycle but lately it's been happening more frequently. I get recurrent and very strong hiccups too, they happen at the drop of a hat and it is a nightmare to get rid of them! Im not diagnosed sadly, but I would guess it's all linked to the fact that there's pressure on my stomach which is likely causing pressure on my diaphragm. So the endo could be simply causing pressure on it as opposed to growing there? Definitely speak to your gyne and push for some answers if you're worried xxx

[ald28 in reply to CryBaby91]

Thank you so much for replying! Yes I also get very peculiar hiccups too (I sound like a donkey hahaha) and the most horrendous heartburn / acid reflux. You're right, it could be because of everything else that's happening down there. I will definitely bring it up with my consultant today and let you know what they say! xxx

[PizzaQueen22]

I have severe neck pain that sometimes radiates down my shoulder and arms, I have been diagnosed with diaphragmatic endometriosis but they found it during surgery but I think they checked as before my surgery I told them about the pain and how I thought it was arthritis pre op. They asked specifically if I had that before it so I think that helped with getting the diagnosis.