Diaphragmatic Endometriosis

[curl123]

I think I could have diaphragmatic endometriosis. I was wondering if people had experienced it? 

Asides from right tip shoulder pain (which I don't think I actually get) what symptoms have you had? How was it diagnosed?

[Flynn_Maverick]

Hello! It's quite rare but people definitely get it. The first time I just had what I thought was moderate to severe rib pain for two years (my liver and diaphragm were stuck together). This got worse when eating or sitting in certain positions. But this time I have less pain but breathlessness about three days before my period and three or four days afterwards. Mine was diagnosed with laparoscopy - booked in for my next one tomorrow - but it didn't show up on MRI scans or ultrasounds. I hope that helps a little.... Good luck getting it sorted. X

[curl123 in reply to Flynn_Maverick]

thank you that does really help! mine is worse in the mornings when my bladder is full, are there certain times of the day its worse? or is it worse for you when your bladder is full?

Good luck for tomorrow! Poor you but at least it's good to get it sorted xx

[Flynn_Maverick in reply to curl123]

Hello! Sorry for the delay just recovering now! Yes I was in agony when my stomach was full, and it got to the point where I could only eat meals horizontally. A full bladder wasn't as much of a problem for me, although it depends where you might have adhesions etc. Also certain seats made it worse. Carrying anything heavy would cause a spasm type pain for a couple of days afterwards too. Really good luck getting it sorted xx

[Bettyheslop]

I am starting to think I have it too, I did have a lap in October, it wasn't seen then but I am now waiting for endo removal plus hysterectomy with an endo specialist as my first surgeon said it was too complicated for him.

Before lap it was just a niggle but over the last few months I get painful right ribs plus just a very uncomfortable feeling, at first I just assumed I had been carrying too much shopping, children etc on my right side and tried to rest it but it's got worse and I have realised that it worsens around the time of my period, is really quite painful during the week after, gets slightly better then goes off for a few days before my period starts again. 

It ranges between full on pain, to a sensation that feels like my right ribs are glued together, to feeling like there is something stuffed just under my right ribs towards the bottom that shouldn't be there. I can never get comfy at night time, I have a warm wheat bag on it every night and it's not just the heat that helps it's having something in the area to lie on to support it.

It does get worse if I sit with my legs up under me which is very annoying as that was how I always sat, also worse if I'm bloated. 

I could be completely wrong and it might be something else but it's strange how it follows a monthly pattern and I also get a bit breathless around period, I had just put that down to indigestion that I always get around period too. It's always something!

I do hope you manage to get it sorted xx

Ps. actually everything I have endo related is worse on my right side, I have endometrioa cysts on both ovaries but it's way more painful on the right, I have sciatica on the right and I I even get more bloated on the right. My right ovary is stuck to my uterus. I also get more migraines on the right, I often feel like my right side is just broken everywhere as my left is so much better!

[curl123 in reply to Bettyheslop]

am sorry to hear that! poor you, thanks for your reply. I read somewhere that the majority of diseases occur on the right side of our body so 95% of diaphragmatic endometriosis occurs on the right side while only 5% of cases occur on the left hand side so maybe that's why your stuff is worse on the right side. xx

[Bettyheslop in reply to curl123]

Well I have never heard that, it's all a learning curve.

It's all a big old pain but I don't worry about it too much, I just have a little whinge if it's too bad and then get on with stuff

Xx

[iDaisy78]

Hi there! I have confirmed diaphragmatic endometriosis. It was diagnosed through a laparoscopy, the doctor saw it and took photos, but did not treat it as it's tricky and needs to be done by a specialist, not a gyno. The symptoms were excruciating shoulder pain, the most horrible pain I have ever felt, to the point that one day I woke up wanting to chop my right arm off. The pain is now controlled since I started taking the pill, continuasly and with no pauses. I still get pain though, just not as bad. Good luck x

[curl123 in reply to iDaisy78]

thank you for your reply!! will you have another surgery to remove the endo from your diphragm? and is the surgery worth it and is it risky? x

[iDaisy78 in reply to curl123]

I'm not sure I will have surgery on the diaphragam. What I have read (might be wrong) is that it's riskier than treating endo on the pelvis, etc., as there is risk of liver puncture due to where the equipment as to go through. I don't want any risks to my liver! x