Dear Libby,
Thank you for your long post, it is so true that we often read someone's post and get a cold shiver because it so closely resembles our own story. One thing that is important Libby, don't compare your pain with others, because it is obvious that the pain you experience DOES impact on your everyday life, or you wouldn't have started searching for answers firstly via doctors and then via the internet under your own initiative. If pain makes you stop and think.. ouch! OR if it makes you feel tired and worn out, depressed, frustrated or angry and so many other feelings, then your pain is SERIOUS for you!
I sense a tone of familiarity to your story, and although I am not a doctor, after all I have been through, all the questions I have asked & had answered, all that I have researched and read here on the board... I feel like I should have a Medical Degree of some kind! LOL
What I am saying is while I am NOT in the medical field, as a fellow adhesions sufferer, I have a suspicion that endo could still be an underlying factor in your pain, in your most recent post you described very close to how I was feeling before my hystorectomy, and it wasn't until they removed my ovaries that they discovered endometriosis.... it was HIDDEN IN the scar tissue and under it and covered my ovaries. That is why I "feel" as though it could still be possible for you to have it.
Because I have endo, I have given my 4 daughters a 75% chance of having this horrible disease too..... and THAT makes me angry! My 16 year old is already displaying all the classic symptoms I had at her age and so our family doctor has put her on birth control pills, and she misses the sugar pill days, to stop her from having a period at all. This works to slow down the spread of endo and reduces the pain a "flare up" (or bleeding) can cause. Perhaps this is something you could investigate further via your doctor......
I am so glad that you found us, and I hope I get to "chat" with you in my chat room someday.
Love & gentle hugs,