Diaphragmatic Endo?

[Becky_1990]

I've recently been diagnosed with endo affecting my diaphragm and wondered if anyone has had any positive outcome from treatment?

I've had pain in my right shoulder and chest at the same time as my period for the last 4 years. My periods are extremely light but the pain in my chest and shoulder is so intense it affects everything I do!

I had my 1st laparoscopy in June but haven't had any improvement with the pain 😭

Does anyone have any experience of diaphragmatic Endo treatment/symptoms they can share?

Does anybody experience symptoms at any other time in their cycle?

Any help would be great!

[YellowWarrior]

Hey, I’m interested to hear replies on this thread too, I’ve just been diagnosed with endo and part of it is on my diaphragm but my consultant said it’s too close to my heart to operate on so I don’t really know where that leaves me.

I’m hoping I can explore some options for it because now I know what’s causing my shoulder pain and shallow breaths I want it stopped!

Do you know if they were able to remove all the endo from your diaphragm?

[Becky_1990 in reply to YellowWarrior]

Just been to see the consultant and feel so fobbed off! They've basically said that they are not thoracic specialist so there's nothing they can do. She said that in 30 years she's never seen endometriosis affecting the shoulder?! Said a should go see a shoulder specialist. I'm so upset. I can't cope with this pain!

[sarahsarah123 in reply to Becky_1990]

Hey, just to say- Endo on the diaphragm irritates the phrenic nerve which refers pain to the shoulder- endo is almost certain not to be in your actual shoulder, so a shoulder specialist won't help. You definitely need to be being treated at a BSGE endo centre, not just by any old gynaecologists! They should then be able to at least consider how best to treat your diaphragm endo. Unfortunately, treatment options in the UK on the NHS are not great, but ideally you want combined surgery with a specialist endo surgeon and a hepatobiliary or general and/or thoracic surgeon to address it. If the endo is on both sides of your diaphragm you’d need a VATs prodcedure (where they deflate your lung) to treat it properly. However, that is major surgery and in the UK they are generally unwilling to do that unless you’ve had a lung collapse. Sorry to bombard you with info- feel free to ask anything else. I also highly recommend the facebook group extrapelvicnotrare- they can help you find treatment!

[sarahsarah123 in reply to sarahsarah123]

sorry, dunno why the formatting went into italics there!

[Becky_1990 in reply to sarahsarah123]

I've read so much about it and all my symptoms seem to suggest that it's the endo that's causing all this pain! The consultant was horrible, she didn't suggest anything helpful, said that there was nothing they could do to get rid of it other than contraception. I sat in my car and cried after the appointment 😭 I was really hoping to get some help and treatment!

[sarahsarah123 in reply to Becky_1990]

Yeah, most doctors sadly have no clue. Like I said, if I was you I'd go back to my GP and insist on being referred to your local BSGE centre (google the nearest one)- they have to refer you for cases with diaphragm Endo. Good luck!

[Becky_1990 in reply to sarahsarah123]

Thanks! the consultant wasn't very helpful. She seemed to think the pain could be a shoulder injury (I've never injured my shoulder) even though I explained that I only get the extreme pain when I'm on my period and the pain is similar to the gas pain you get after a laparoscopy but worse! Anyway I've made an appointment with my GP so I'll just have to see what they say...