Endo on Diaphragm?

[Cma89]

Hi, just looking for some information. Has anyone been diagnosed with endometriosis on their diaphragm? What are your symptoms and where exactly is your pain?

I have been experiencing rib, upper back and shoulder pain on my right side and just wondered if i could have endo on my diaphragm.

(Additional info: I have been diagnosed with endo, on my POD, ovaries and I have adeno also. I've recently been off the pill Yacella as it is out of stock and that's when the pain started again. I've experienced this pain before my 1st laparoscopy in 2016. I had a 3rd laparoscopy booked but unfortunately it may be postponed due to Coronavirus)

[PL0NKER]

Hello! I haven't been diagnosed with endo on my diaphragm but I suspect I may have it there too. I've been getting shortness of breath/difficulty breathing for the past 2-3 months during my periods now. I also get pain in the right side of my chest and rib area and just an off, weird feeling there in general, as well as (right) shoulder, and arm pain. 95% of the time it kicks in during my periods. I'm in chronic pain every day so I've been able to spot this new pain/pattern (yay for more pain/struggles 😂🙄).

Sorry I don't have an "answer" for you but thought I'd share my similar situation because I feel like I don't see many people mention diaphragm endo/similar pain so it makes *you* feel quite alone!

[endopositive in reply to PL0NKER]

This is exactly my experience to, I have pain right shoulder and right of sternum through to my back! I guess I thought I was alone in this or just going crazy but I asked my surgeon and he said it involves a complex op and not worth the risk, especially as it can be so difficult to find and remove on the diaphragm. In other words - you have endo, deal with the pain!

[Melon365]

Again I am sharing because I think I am in the same situation. My pain is very similar to yours but just on my left side. Sometimes it is a sharp stabbing and other times it is like a really bad ache. It start 3 months ago after I had the Mirena coil removed. It can happen throughout the month but the two days before I bleed are the worst.

I told my GP but she dismissed it I am waiting to tell my gyne but again my appointment was cancelled.

Hope you get some answers x

[AkiBoo]

Hi,

I have confirmed endometeiosis on my diaphragm. My pain area is on my left side mostly but the consultant saw the lesionvon my left side, I think.

Pain on my left side is less.

But I also have confirmed endo on my liver so some pain could be from this.

The most noticable pain is my neck though for diaphragmic endo.

I hoped to get them removed but that is not an option even with a good endo centre, so managing this for a long timev now.

[Endomy in reply to AkiBoo]

I hope you are fine.. It is really a hard experience as I have the same. Can I ask you what hormonal treatment you are taking to stop bleeding? And for how long?

[AkiBoo in reply to Endomy]

Hi,

Sorry to hear you had more traumatic experience than me.

I have mirena coil and progesterone only pill, and have one overy only.

I am 48 now so hoping getting to menopause very soon.

I also have endo on my liver so the pain I ecperience on chest area is not sure where the origin?

I suspect I have endo on my left and right diaphragm but not sure if any on my lung. At least, I am not.bleeding anymore so my lung will not collapse?

[Endomy]

I have endo on the diaphragm since 3 years. It was first presented as pain on my right side of the chest. Later on I developed shortness of breath and irritative cough.. Next I went to chest doctor who diagnosed a pleural fluid. It was weird presentation. 4 months later I got pneumothorax and I was only diagnosed after thoracic surgery due to collapsed lung. Since then I am on Gnrh analougue to stop ovulation and bleeding... It is not an easy diagnosis of diaphragmatic endo. Simply doctors will not think of it due to rarety. But be sure that pain is not the only symptom. It should be cough, short breath.

[Melon365 in reply to Endomy]

Is the Gnrh helping you? I am being recommended it but I really don't want to take it because I suffered so badly when I took other hormones.

[Endomy in reply to Melon365]

Yes it worked pretty good with me. To be honest I have no options. I am 36 ys old now. My options are hormones vs oophrectomy+ hysterectomy .. I am not brave enough to pick the second option as I do not have any children of my own... I hope you can tolerate it well like me..

[Melon365 in reply to Endomy]

Thank you. I am 25 with no kids but I think I am more scared of being this unwell for ever than having a hysterectomy. Thank you for sharing x

[Stacey85 in reply to Endomy]

Who would diagnose endo on the diaphragm? Can it be a specialist gynaecologist or do you have to see a respiratory specialist? xx

[Cma89]

Thank you all for your responses. I will mention it to my GP but ultimately I just have to wait til my excision surgery to find out.