I have deep infiltrating endo adhering my bowel and I think it’s the no 1 reason I am struggling to heal my fissure. My hormones are just so over the place and it’s so hard to control my GI symptoms.
I’m curious if there are many other people in here with the same issue and if it’s common…
It’s sort of all in the title, but for context I have stage 4 deep infiltrating endo and one of my long standing symptoms before surgery was extremely heavy bleeding.
My gynaecologist put in a mirena during surgery (last May), and I’ve been on Slinda about four months now. Even with this I still get what I would describe as a light period - spotting and then one to three days of more average bleeding.
In the past my doctor put me on zoladex shots which seemed a bit more effective, but I felt absolutely insane so I won’t go back on them again.
At this point it just feels ridiculous. Has anyone else had breakthrough bleeding this hard to control? How long did it take to find something that stopped the bleeding entirely?
Hi all,
I have deep infiltrating endo and quite bad POTs. I’ve been diagnosed with both in the last year after having truly awful fatigue and other symptoms that have made it impossible for me to work.
I’m wondering if others have the same combo, and if you also notice POTs symptoms flaring when endo hits? I am on double birth control (pill and mirena) to stop bleeding, but whenever I get breakthrough bleeding my POTs symptoms go off and I’m just absolutely knocked out. Just got hit by a truck bed bound levels of awful.
I also get endo pain (particularly leg and pelvic pain) occurring alongside the regular POTs dizziness.
I am trying to get reviewed for ME/CFS which I know is a super common comorbidity with these two - but curious what others experiences are???
I’ve asked doctors but all they can really tell me is the combo of conditions is really common and they don’t totally understand why.