post op bleeding at 3.5 post TAH, now large ovarian mass and high CA125

hi all (this is a cross post from the post op forums -- sorry for the overlap but i need some help right about now...)

this is a combined posting that tells the first part of my story and now what's happened two weeks later. if any of you have had an experience like this and can share...i'd really appreciate. i'm a little scared. ok i am a LOT scared.

i started experiencing spotting at the 3.5 month post-surgery mark. i had NO bleeding at all after surgery until NOW! i had a TAH on Jan 5, I still have my ovaries but unless there's some kind of tear on the vaginal cuff...there's no physical way blood could be coming out according to the ER (i'm waiting for monday so i can call my ob surgeon). and yet...they saw it, i see it...it's there.

its not a lot -- just a drop here and there. they did a CT with and without contrast and apparently i have "a TON" of ovarian cysts but because my regular GP ordered the scan, which had to be done at the ER (small university town) on friday...the results go back to the GP and the ER could not find out the results because i went past their registration and straight to radiation/xray as i was told.

anyone else sick as i am of the term "HIPPA?" i realize it protects us but why can i not demand my own freaking results??? i have to wait for monday for that too. i don't know what "ton" means and that was all i could get out of them after bursting into tears.

my uterus and cervix were both removed because i had early stage cervical cancer and endometriosis that literally kept me in bed for two weeks every month from pain (i tried EVERYTHING on the market and in other countries!!!). so i'd definitely be interested in knowing if (and if so, why) he left cervical tissue.

my worry is that i have a tear or something in the vaginal cuff and that some bleeding is coming through. i no longer have the endo pain -- without the cervix and uterus i no longer have pain with sex, pain with movement, pain with breathing...you get the idea. but now i'm getting a lot of ovarian pain (cysts came up two months ago too and they were probably there last month too but i didn't get an exam).

(fast forward to a few days ago, apx two weeks later)

i went to the ER the other day because all the sudden I had EXTREME pain around my right ovary. i FINALLY found out today my CT results(my doc was on vacation last week so i had to wait YET another week for the CT results and he sent me to the ER because of the pain). CT with and without contrast showed a complex ovarian mass with septations (sp?), suspected to be a tumor, that's over 6cm.

now suddenly I could get in to see an ob-oncologist tuesday at one of the busiest hospitals in the country in chicago, which is three hours away but that's where i had the hysterectomy. i have a high CA-125 (in the 900s) and so...that's probably why my hysterectomy surgeon was able to get me in REALLY quickly to an ob-oncologist. i can only imagine he's pretty worried he missed something and should have guided me to have the ovaries removed and/or removed the during surgery (i signed consent).

i just didn't want to go through menopause...now it seems that i get to go through that now. i'm scared because i also have rapid cycling bipolar disorder and i'm worried about becoming unstable when the hormones go nuts...i've had problems on and off hormonal treatments over the years. i also have stroke-like migraines (the aura's mimic a stroke but this has been evaluated extensively). now i'm also worried that the hormone switch could start these up again and i have been warned that these migraines *could* be a stroke one day. that's another reason why hormonal treatments for endo were dangerous.

so...am i going to need another surgery for real? that's what they are saying. should I be freaking out right now? how can this be happening? i JUST got to the point where i was feeling better from the surgery...now they are suggesting a laparotomy (sp?) to explore the area more fully. the TAH was done with a horizontal incision outside and vertical inside. now i sounds like i'm getting the vertical incision on the outside too...

i'm am frustrated beyond belief...

Gosh I am so sorry you are dealing with surgery again and all the delays in trying to proceed. I agree it's fortune to have an appointment with a gynie/onc sooner than 13 days and then there will be a wait up to another 2 weeks to get scheduled in their surgical routine.

It took me 2 weeks for an initial appointment and another 2 weeks for surgery. Although everyone was pushing me along as fast as they could, I was pretty miserable by the time I had my surgery. My family said to go to someone else but that would have actually delayed my surgery more and I had the best doc in the area for ovca. I wasn't going to change.

Hang in there, I can understand your frustration and the discomfort. It will be over soon.