Diaphragm endometriosis

[Violet159]

Hi ladies, long post alert:

I'm waiting for a lap to diagnose endometriosis for pelvic pain, but for about 6 months I've had pain in my upper-right abdomen and back around my right rib area, it also stabs up into shoulder and when it's bad it hurts to breathe in and out and can cause a tingly feeling down my arm. I've had a bunch of investigation, they've ruled out anything with my lungs/heart and also things like gallstones and liver pain. In the last few weeks it's worsened and I now have constant nausea to the point I'm struggling to eat and the pain steadily got worse. Last couple of nights I've been completely unable to sleep due to the pain which tramadol didn't even touch, I cannot find a position to relieve it!

Went back to my GP yesterday morning and she said she thinks it might be diaphragmatic endometriosis (kind of surprised me to have a GP suggest it to me instead of it being the other way around, things are slowly changing for the better girls😊) but with being on the mini pill my cycle is very unpredictable so I wasn't sure if these symptoms are worsening with my cycle as endo symptoms normally do. But when I got home and went to the toilet, guess what? Got my period! So I'm now having to look realistically at the idea that this is diaphragmatic endometriosis which is quite scary as it sounds pretty difficult to treat.

When I saw my surgeon for my lap he mentioned that they check the diaphragm in all surgeries (I'm luckily at BSGE centre in Edinburgh) but I'm wondering if I should try to get in touch somehow to let him know that if it's there it's causing pretty nasty symptoms? I'm thinking that way they'll have an extra careful look at the diaphragm and would consider treating it if they found it and could do so during that surgery. Does anyone know how I could do this? Through my GP maybe? The only number I have is for the waiting list office.

Also any advice from those who have suspected or diagnosed diaphragmatic endo would be much appreciated! I'm not really sure what to do with myself. Any tips for managing symptoms? I was on opioids which haven't helped much and am now taking diclofenac which seems to be easing it a little but I'm concerned about my stomach as it used to give me stomach ache despite omeprazole. I didn't find heat or ice packs particularly helpful either so I'm a little bit stuck!

Thank you all and I hope you are having good days xx

[melanies]

Hi - sorry to hear that you’re having such a rough time. Your pain sounds dreadful. Did your GP suggest anything to keep you going until you get the lap? You should get a chance to speak with the surgeon before the surgery so can mention your concern re diaphragm then. Or your GP should be able to send a message. I’m interested to hear how you get on as I had stage 4 endo before having a full hysterectomy 6 years ago. I have recently had a few pelvic pains which have made me think that the endo is back. Separately I have also been referred to hospital for chest pains - my referral being to check for any heart problems which so far have shown none. It didn’t occur to me until lately that the two could be linked. I found out about Thoracic endo through a google search! My symptoms don’t seem as extreme as yours sound - I have more of a dull ache around the chest area. But I’d also be keen to hear from anyone else who might have suffered from this and what treatment involved and/or any recommendations for relieving symptoms. Sorry I can’t help much with advice about treatment/ symptoms! I am also in Edinburgh. If your surgeon for your lap is Dr Cameron Martin - he did my hysterectomy and was absolutely fantastic. I’m hoping I’ll get referred back to him if I need any further treatment in the future. Good luck and post an update when you’ve had the surgery. x

[Zoeymcd_28]

Hi there. I am so sorry to hear ur story sounds like u are in a lot of pain.

I haven’t been diagnosed with endo but for the past year and a few months I’ve struggled every month when my period arrives. I get dull horrible ache in my right shoulder down my arm then it moves to my other shoulder up my neck. Then I get the pain in my collar bones and in my ribs and my chest it’s absolutely agony and this pain goes through all these stages in 4 days while I have my period. I take painkillers that have absolutely no affect what so ever. Like u say I just can’t find a position that’s comfortable and I’m in tears constantly with the pain for that 4 days. I have been living in Houston for the past year and when I first started getting this pain I just thought oh it’s maybe just inflammation but it got worse and realised it’s every month so now I’m back home I’m going to see my gp next week and I really hope they don’t it me for a scan or something to look. Because I seriously cannot cope with this anymore i mean I have 2 kids and I can’t do anything with them for that days cause I can’t move. It’s so difficult and I’m scared to look for work because of that days I’m in so much pain I really need help. Sorry for yapping on.

I hope u manage to Get to the bottom of what is causing yours and get help with that.

[Cma89]

Hi, have you received any further information about diaphragmatic endo? I've been experiencing the same symptoms you've described here and I think that's where my Endo is as well

[Violet159 in reply to Cma89]

Hi, haven't yet got an answer I'm afraid! My consultant had agreed to look for diaphragm endometriosis during the laparoscopy but unfortunately my date was today and was cancelled for the virus ☹ it's a little irritating that I still don't know and I'm sorry I can't help more! I have so much sympathy for you right now going through this though, I hope you get some answers soon! Best things I'm finding for relief are anti inflammatories and heat - although I've not found anything to 100% relieve it. Good luck and take care of yourself xx

[Cma89 in reply to Violet159]

Thank you. So sorry your surgery got cancelled. Mines is booked for May but I think the same thing will happen to me. But I'm convinced it's on my diaphragm but it seems like it's difficult to remove anyway☹️

[Stacey85 in reply to Violet159]

Did you get your lap? and did they ever find it on your diaphragm?

[Violet159 in reply to Stacey85]

Hi, I did get the lap in September last year but they didn't even find pelvic endo 🙃. They did check the diaphragm but I'm not sure how thoroughly, the op only seems to have lasted about 15 minutes so I'm not convinced they looked closely enough...

I'm using the mirena just now and things have improved although I still have pain in that area all the time. I've finally been referred by my GP to a chronic fatigue/immunology clinic and she suggested these sorts of symptoms could be linked to an immune condition so I'm waiting to see what they think. Going to get that sorted first and then see about getting a specialist second opinion on my lap - my GP thinks I probably have pelvic endo and it could have been missed. So its a long time yet till I'll have an answer!

I'm presuming because you're asking this that you're having similar symptoms, I hope you get some answers soon! Good luck x