Endo flare and nerves

[Mysterywomen]

So had left ovary & tube removal plus endo surrounding theses organs removed in Sept. My 2nd period since surgery and I was rushed to A&E as I was in agony/screaming out loud type pain. Turns out endo still in pelvic near surgery area has flared up and has inflamed my nerves on my thigh. Doctors spent 3 days trying to figure out why massive amounts of oral & ivf morphine were not working. In the end saw Endo consultant who did my surgery and he told me that there is still some endo in there, stuck to bowel & nerves, a big mass like a fist!! It would be tricky surgery to remove. Also advised on different pain killers for nerve pain. On progesterone pill now as I don’t want another period as I know I will be in more pain and back in A&E next month.

Has any one else had endo flares and nerve problems/pain after surgery??

[claudia_91 Moderator Endometriosis UK]

Hi Mysterywomen

I'm sorry to hear about all the pain you've been experiencing so soon after your surgery. It sounds like you've been having a really tough time. Unfortunately, it is common to continue experiencing endo flares and to feel nerve pain after surgery. Endometriosis is a really complex condition to treat, and our bodies have often been dealing with the pain for such a long time that they forget how to behave normally! Whilst surgery can treat endo, it very sadly isn't a cure for us 😢

However, on the positive side, there are options available to manage the pain. You can read the information on the Endometriosis UK website about treating pain here: endometriosis-uk.org/pain-r...

It would also be worth contacting your endometriosis centre (if you are being treated at one?) and asking for a referral to a pain management specialist. The type of nerve pain that you have described is complex and requires specialist advice. I hope that the progesterone does provide you some relief as you won't be getting your periods; it really helped to reduce my 'pain days' by 50%.

Please remember that you are not alone, the community is here to support you

😊

[Mysterywomen in reply to claudia_91]

Thank you so much for the advise claudia_91, this community has been amazing and somewhere to share how frustrated I’m feeling.