Help

I was diagnoised with severe endremeterosis stage 4 in Feb 2007.  In August 2008 I had a total abdominal hesterectomy with removal of my ovaries and fallipean tubes.(BSO)
Since the operation I have been feeling unwell, nauseous, swollen abdomen, gas and indigestion, pressure on the base of my spine that extends down the back of my legs and makes walking very difficult and painful.  Then in December 2008 I noticed a large lump on my upper right thigh, My doctor sent me for an ultrasound scan who recommended an MRI which "incidently" found mulitple cysts in my pelvis.
My doctor sent me for an ultrasound of my pelvis.  The transvaginal ultrasound has now found that my ovaries are still present and have not been removed as stated by my gyno surgeon.  I have been feeling worse since my operation in August 2008.  I am very angry and concerned as I have a raised CA 125 of 54 but 10 days later it was 37

I had extreme endremeterosis with scar tissue and adhesions that was why I had the TAH+BSO.

Now I am concerned I may have ovarian cancer.  I have a cyst measuring 35mm on my right ovary with another mass adjacent to it and another mass seen anterioley to my ovaries,.

Please help?

[Annekathryn Goodman, M.D.]

Hi Mandy,

I wonder whether you have what is called "retained ovarian syndrome".  That is a syndrome where a tiny residual ovarian tissue regrows and makes painful cysts.

I would suggest the following for you:
- get a copy of the operative note from the TAH-BSO
-get a copy of the pathology report

I strongly encourage everyone to get copies of all your reports. It is helpful to read them yourself. And it is helpful to have copies of your records for when you see other doctors  For you, Mandy, reading through the reports will help you understand what your surgeon found and what was taken out. The pathology report will confirm that your ovaries were removed.

you should also have blood tests for ovarian hormones - estrogen, FSH, and LH. this will confirm if you have active ovarian tissue.

CA 125 can be mildly elevated with endometriosis.

best wishes

[Mandy252]

Hi Doc

I have been told by my doctor that I had a TAH+BSO that is what I consented for.  I have had two transvaginal scans.  One scan has reported that both my ovaries are still present, enlarged with folliciles in them. Both scans have reported that my right ovary contains a 35 mm cyst. Both scans have reported to another mass anteriorly to my ovaries/ovary.

I have requested to see my notes but the hospital has so far declined.  They want me to sign a declaration to state I will not be pursuing a claim against the surgeon before they release them to me.

This is clearly indicative to me that the surgeon has not carried out the operation with the removal of my ovaries.  As endremeterosis is controlled by hormones then the removal of my womb would not have completely cleared my severe endremeterosis as I had stage 4 with alot of adhesions.

What do I do next?

[Mandy252]

Hi its Mandy again

I've got hold of my pathology report and that states no definite ovarian tissue is noted in the block.  I have also got copies of the surgeon's operation notes and he is still stating he performed a TAH+BSO

I have had the hormone blood tests but still waiting for the results. My CA125 is now 113.  I am also waiting for an appointment for a CT Scan.

Can you please tell me what a ct scan shows up?  Does it show up my ovaries and any cancer that may be there?

I am now very worried and concerned. I can't sleep at night.

[Annekathryn Goodman, M.D.]

Hi Mandy,
it sounds like you are making progress on sorting things out. I would suggest getting a second opinion at another institution. The purpose is to sit with someone who is not being defensive and who can objectively read through t he reports and explain to you what was done and what the path reports mean.

A Ct scan is good at looking beyond the pelvic location and seeing the big picture of the abdomen. After removing the uterus (TAH = total abdominal hysterectomy), pelvic ultrasound are not as accurate at interpreting structures in the pelvis.

Ca 125 is a great indicator for activity of endometriosis. If the pathology report does not say anything about a malignancy, it is unlikely that that is what you are facing.

I hope you are able to meet with someone who can guide you through this
best wishes

[Mandy252]

I have now had my CT scan report  and it says...There are bilateral complex pelvic masses. The left one measures 6.3 x 3.3 x 3cms and the right 5.7 x 4.5 x 4.5cms. They seem to be in contact across the mid line inferiorly but superiorly they are seperated by the sigmoid colon which is thickwalled.
summary. there are bilateral complex presumed ovarian abnormalities with a stron suggestion of pelvic adhesions and no evidence of disease elsewhere
my hormones are within the normal range and my Oestradiol pmol/L result is 252

This would indicate to me that my ovaries are definitley present.  Therefore the consultant has not performed a TAH+BSO as stated in all his paperwork including the operative notes, consent and discharge letter.

Can you please explain it to me and what I should now do?

I am seeing another consultant at another institution and awaiting a date for a laparotomy.  I am now so frightened of having another operation.  How do I know they will do what they say they are going to do?  What if they hide what they take out?  Could I have Cancer?

Mandy