WeAreEndo.org - The Social Support Network for People Living with Endometriosis

Melissa

I am soo sorry for all you have been through! Hopefully this time will be the last time you have to have surgery and you will have pain free days ahead.

I am actually supposed to hear from someone tomorrow about scheduling surgery at the CEC. Let me know how things go when you can!

14 months ago

Nancy

thanks- i am so sick of my lifestyle- or should i say lack of life!lol!  I go to the dr for pre op tomorrow am.  I will keep you posted...:)

14 months ago

Endopeg

Hi Nancy,

I understand,  I am "working", only becasue I have a flexible job, where I can work from my bed.  I don't have much energy left in the evenings due to pain and fatigue.  I do sometimes (ok, quite often) feel I have no life.  But I do have a daughter and she is incredible! I am grateful for her. I also have a loving and understanding husband.  I am beginning to create more of an on-line social life.  At home, I am doing more gardening, when I am able, and otherwise, it's me and the heating pad.  I do enjoy reading, and watching movies.  I try to do as much as I can with whatever my limitations are on a given day.  If I get up and can tell I feel good enough to go out, I try not to waste it.  I go!  If I can't, I try to accept it. I try to do things I can do at home, here I can take breaks.  Epsom salt baths are nice.  Aromatherapy lifts my mood...  I haven't been to the CEC, but I have heard that the Endo. Treatment Centers are the only option for severe endo.  I have even heard that we should all start going out of the country.  I haave a dr. video on that, and I will post it.

I had a LASH procedure (laparoscopic removal of uterus and 1 ovary) in 2004, then a complete with removal of other ovary and cervix in 2006.  My current Dr. performed the surgery in 2006 as a laparotomy because by doing a rectal exam he could feel that I had very deep endometriosis in the pelvic floor. It had been growing deeper and deeper the whole time, while doctors were slowly removing my female organs a bit at a time.  Now I know a pelvic exam is not complete without a rectal.  The doctor I had at the time didn't do a rectal, and he would not have known how to treat deeply-invasive pelvic floor endo. anyway.  Unfortunately, the endometriosis was so widespread and far out of the normal parameters, it seems to be "too late" to restore me to "normal".  I know from a recent lap that I do not have any more live endo., but I had widespread adhesions.  I have so much nerve-damamge and damage to lymph system, only time will tell if I will continue to improve.....My nerves have to heal.

Please tell us how it went in Atlanta?

Peggy

13 months ago

Nancy

Wow Peggy, you are going thru it like me!  I am sorry to hear of all your pain.  I had surgery almost a month ago & thought I would be out of pain by now.  it is getting SLOWLY better and I am trying to get off of the pain patch &pills.  (not fun)  On top of all this my randma died and we just moved.  I can only do a little at a time or I start feeling worse.  Like you, I think the endo is deep for me.  I have just been so depressed....not really wanting to do anything..blah!

13 months ago

Endopeg

Hey Nancy,

I know it's not "fun" to feel "blah". I do not like it either. Sometimes feeling "blah" is really being tired because of all we have been through! Plus, if you think about it, why would we not be a bit depressed? Our situation deserves sympathy, even from ourselves to ourselves...Easier said than done, but it does take a while to feel better...My surgery was July 8th. I saw my doctor and he expects I may feel bad for another month or so....{eople's bodies just don't always bounce back the way we expect them to.   I am on meds and using a TENS, and using my warm-heat wrap and everything I can think of. One day at a time, we will make it through!

Take care Nancy, and let me know how you are doing.

12 months ago