Endometriosis on diaphragm

[ckhane]

Hello everyone!

I hope that up are all doing well! I was wondering if anyone has any experience with endometriosis on their diaphragm. I’m sorry about the long post it containable some background information. I recently had my first laparoscopic surgery in which I was diagnosed with stage 4 endometriosis and had most of the endometriosis and adhesions removed as well as two large endometriomas. During the surgery they found multiple spots (upwards of 10) of endometriosis on my diaphragm. I’m having a hard time figuring out if I should have another surgery to get the endometriosis removed or try to suppress it with hormones and live with being short of breath and occasional stabbing pain. If anyone has experience with this I would greatly appreciate knowing what you decided to do and how you decided. Thank you so much I hope that you all have a wonderful day!

[AkiBoo]

Hi,

I am in a similar sitiation. I was told endometriosis on diaphram and liver were unable to remove on my first surgery. I have stage 4 and two mass of endmetrioms removed with a lot on my pelvis.

I had second surgery hoping these will be removed but they didn't touch them. I was told too much of risk. While talking with a junior dr before surgery it sounded possible to use diatherm to burn out instead of excision but this was not done either.

Where is your consultant? Are they likely to remove emdo?

I travelled far to be seen by a one of the best endometriosis centre but still they are not keen to handle diaphramic and liver endo.

[ckhane in reply to AkiBoo]

Hi! I’m sorry that you’re having trouble finding someone who is willing to do surgery. My doctor told me that I had three options 1) to take a hormonal birth control to suppress the endometriosis and stop it from spreading and getting thicker while possibly suppressing the symptoms. 2) get an MRI of my lungs done in which it should show any nodules of endometriosis within the lungs; however. This has the possibility of showing nodules within the lungs that are harmless and not related or show nothing while there is something within the lungs. Then based off of the MRI results decide what steps should be taken. 3) Have it surgically removed as sarahsarah123 describes however this does have the possibility of potentially going into the lungs and also the possibility of the surgery leaving you with feeling breathless for the rest of your life. The doctor said that he would not recommend the MRI as it has the potential to rush people into surgery because of possible false results and said the way way to proceed is based off of symptoms. Right now I’m not sure what I am going to do as if I have another surgery this year it would be hard for anyone to help me as l the people who could help me took time off for my laparoscopic surgery this year.

[AkiBoo in reply to ckhane]

I see.

So I have bern brushed off by my consultant.

She thinks when I hit menopause, my symptom will get better.

As I am 48 it is very possible I will have menopause.

I am on Mirena coil and I was taking Cerazett, progesterone only pill. I have had an overy removed so I am hoping endometriosis does not progress too much.

I was able to exercise and yes, get a lot of pain but I was sort of leading normal life so maybe for now, I might need to see how this surgery I just had recover me...

[sarahsarah123]

Hey, sorry you are going through this It is possible for endometriosis to be surgically removed from the diaphragm- either via resection of the affected area or by excision, depending on the lesions. Some diaphragm endo is also only visible from the thoracic side, meaning you'd need to have Video-assisted Thoracosopic surgery where they deflate your lung and go in from from the top side. As such, you can't be sure it's all removed without having VATs, but that's a big, scary procedure. They do this surgery routinely at the Centre for Endometriosis in Georgia, USA, and I think in one place in Brazil. Unfortunately in the UK the provision of this type of care is awful- they usually just brush it under the carpet and try to treat with hormones. However, to my knowledge there is some evidence that hormones are less effective for thoracic endo, e.g. for associated nerve pain and breathlessness, and obviously hormones don't cure endo anyway. Not sure if I'm allowed to say this on here but I recommend you find the facebook group called 'extrapelvic not rare endo support and education group' to find other women going through this and chat about trying to get treatment in the UK.

[ckhane in reply to sarahsarah123]

Thank you for the advice I truly appreciate it 😊

[BeachSheller]

Hi, I know this is a little late, but I just had my first lap procedure done and it sounds like you have almost the exact same diagnosis. I had two large endometriomas (which is what led to the lap in the first place) as well as lesions on my diaphragm, colon and other places outside of my pelvic area. It turned a 1 hour procedure into a 4 hour procedure.

I’m also short of breath. I’m still fresh in the recovery dept, so I’m not sure if it’s from the procedure itself or if there is still endo lingering in the thoracic region. I know doc plans to try and treat with progesterone for now.