Diaphragmatic endometriosis

[Pinkbear27]

Hi All, had a laparoscopy and excision this week and was diagnosed with diaphragmatic endometriosis as well as pelvic endo. Diaphragmatic endo is apparently very rare, out of curiosity does any one else have experience with this? Thank you x

[Endo93]

I also have it on my diaphragm. Had excision surgery for pelvic endo but my diaphragm was not touched

[plotments]

Hi hope your not feeling too bad after lap

My consultant thinks my endo is on my diaphragm now as well

currently waiting for hysterectomy and removal of bowel endo not sure what will happen over diaphragm.

More people are being diagnosed with it now I just think the consultants are more aware of it

What treatment options have they suggested to you?

Take care

[3caramel7]

It is very hard to find any proper stats. And even when they find it, its a very specialised skill in terms of removal. Unfortunately both the attitude and treatments to Endometriosis hasnt changed in decades according to the womens All parliamentary group.

Try suggesting Endometriosis to a Respiratory Consultant: Yes good old tumbleweed or to a Dentist yep tumbleweed again😯🤣🙄

[Dapperfly]

Can I ask if you experienced any symptoms related specifically to the diaphragmatic endo?

I’m currently on Zoladex, which I have had massive relief with (even with the menopause symptoms) but I am get pains at the bottom of my rib cage (right side) and it shoots up into my shoulder. This worsened with Tibolone and am now due hysterectomy

[sjh_1980]

I was diagnosed with it 4 years ago but have only had endo treated in other areas. Waiting for treatment on diaphragm area as symptoms have gotten a lot worse there. It is not as rare as we are made to think!

[Endomy]

Yes I do have that. I was diagnosed in 2017. I was taking Gnrh anologues for 3.5 years. All went fine. Symptoms were few over past years. You can ignore mild shoulder or upper back pain. I got only one lung collapse in 2017 at time of initial diagnosis. Since that everything was stable. Unfortunately, I got flare up 2 months ago, after 3.5 years of initial diagnosis. I was fortunate enough not to get another lung collapse. I got upper abdominal pain and ascites. I am going now for another surgery. Diaphragmatic endometriosis is quite silent with many patients and diagnosed accidently and not symptomatic; unless it causes lung collapse. I advise you to monitor your symptoms. Ask for follow up CT?MRI to assess your chest condition. If you get at any time shortness of breath, do not hesitate: Go to A&E. Otherwise, it is something we can cope with. Lots of patients do have that, without even Knowing. I hope you will be one of those silent diaphragmatic endo sufferers. My advice is just to take your symptoms seriously anytime you feel short of breath. Again this won't happen to most of the patients. Wishing you all the best.

[JoJoJokey]

Think I've got it there. Severe pain lower right rib cage with years of back pain thay comes and goes with my menstrual cycle. MRI didn't show it but gynae thinks I should have (3rd) laparoscopy to see, especially as having bowel pains also linked to menstrual cycle 🙈