Shoulder tip pain and heavy chest: Possible Diaphragm Endo?

[Lejay]

I was diagnosed with Severe Endo in May last year but unfortunately I had ablation surgery (which diagnosed me) and my endo symptoms have returned/worsened.

Most recently I've been dealing with a new symptoms that I suspect may be related to Endo but unsure.

I've had shoulder tip-like pain and a feeling of a heaviness in my chest on and off for the past 4 months. It has gotten worse as the months go on and it seems to only happend around the 2 weeks to a week before my usual period week (I'm on the pill and skipping periods so have had no period for 10 months).

This time this shoulder tip pain and heavy chest has been non-stop for the past 2 weeks and it is a lot worse. I can't sleep, nearly fainted a few times, am extremely nauseous. My other Endo symptoms have also gotten worse in the last 2 months (FYI I changed from Visanne to a contraceptive pill 2 months ago), mainly my bowel,bladder, migraines, fatigue,weakness and bloating (constant). I have lost my appetite due to all this as well.

I went to the GP yesterday, as recommended by my gyno, and had some tests and it's all clear with heart, lungs and muscles. I had an chest xray also but won't find out until the middle of next week if it's clear or not.

Has anyone had a similar thing with shoulder tip pain and heavy feeling in chest that seems to occur cyclically and has been linked to Endo?

If not, does anyone have any ideas on what it could be?

EDIT: forgot to mention that the shoulder tip pain radiates down my left arm and feels like it's being constantly squeezed and the pain can also shoot up my neck and radiate to my right shoulder in extreme episodes.

Sorry for the long post!

[Stacey85]

I'm in a similar position and would be interested to hear what people have to say. I apparently don't warrant a referral to a endo specialist on the NHS but I complained in fear the general gyne has missed some. I have terrible bowel issues and really bad shooting pains in my bottom somewhere. Also get a really bad chest leading up to my period, breathless, drained, right sided chest pains, right sided shoulder pains. I feel I really really need to speak to specialist to clear it all up xx

[Lejay in reply to Stacey85]

I rang my specialist because she said if things get worse to ring her but her nurse said to go to GP first to rule anything else out first. Have you seen your GP about your pains and symptoms? xx

[Stacey85 in reply to Lejay]

I have seen a respiratory specialist. She ran bloods done a X-ray etc but just fobbed me off with having exercise induced asthma. So I stopped exercising for around 6 months and it didn't help. That ruled out exercise induced asthma!

I've had extensive work done with the dentist to rule that out. Jaw bone in sections etc. All was fine. About £2000 later! Didn"t help with my chest pains.

I've seen ENT to see if it could be any issues with my nose. I struggle to breath because of swelling inside. Allergies ruled out so we don't know whats causing that. Waiting to get referred again! But my nose isn't affecting my chest either.

I don't need to speak to my GP at the m moment because one of the gynes at the hospital has written to an endo specialist. I'm going to wait to see what he suggests.

Going to see your GP may mean a referral to some sort of specialist. LONG!

[wanwood]

Just an idea, but my first thought is that your shoulder pain and chest discomfort is related to the bloating from endo. If you have extreme bloating and lots of actual air or gas trapped inside you, it will cause shoulder tip pain. Similar to when they pump you full of gas to do a laparoscopy.

Bloating can definitely make you lose your appetite as well, and it gives me heartburn when it gets bad enough. Hope this isn’t TMI but if you’re constipated, that will absolutely make trapped wind and bloating worse and needs to be sorted.

Hope you feel better soon xx

[Lejay in reply to wanwood]

That was my first thought too especially since my bowel symptoms have gotten worse again. The shoulder pain is very similar to shoulder tip but it also feels heavy and the pain will radiate down my arm and feel like my shoulder and entire arm is being squeezed. The pain has also shot up my neck now and again and over to my right shoulder.

Its very weird and I've never experienced this before when I have previously experienced constipation or trapped gas. I've been drinking peppermint tea and using stuff to help my bowel symptoms which has improved somewhat but the shoulder pain is still constant.

Thanks xx

[wanwood in reply to Lejay]

Wow, that sounds really strange! Hope you get to the bottom of it! xx

[LauDawg]

Hi Lejay,

I used to get incredibly deep pain on my right shoulder blade the day before my period. Nothing would touch it, I couldnt sleep and I'd have to lie on a hot water bottle all night. I mentioned it a number of times to my GP/chiropractor and they said it was probably my posture. I was used to a painful abdomen and didnt have heavy periods, so endo was never considered even by me, but this pain was something I couldnt cope with.

After being diagnosed with severe endo, picked up during fertility checks, and quite a lot of surgery, my endo specialist said that the pain could indicate diaphragmatic endo. It wasnt investigated during surgery since it requires a liver surgeon to be present, they have to do a full celiotomy and move the liver over to fully viasualise the diaprhagm. It's quite serious surgery for it to be removed.

Thankfully it's improved greatly since the rest of the endo has been removed, but there is still some soreness. Maybe it'll get worse, but I'll be honest the thought of that level of surgery means that I'd rather go back on the pill.

My reccomendation is trying to see a specialist endo consultant. They will have the experience to understand your symptoms and be able to guide you correctly.

I contacted my GP and chiropractor to tell them that any women presenting with right shoulder pain before/during a period should be investigated for endo. Hopefully it'll help some other women out there suffering in silence.

Good luck xxx

[Josiejo77 in reply to LauDawg]

Oh my goodness this could be describing me. I have shoulder pain, very light and infrequent periods but also I get chest tightness and during a lap they picked up endo on my liver. I didn't know about diaphragmatic endo but will look into it