Laparoscopy, elevated ca125 anyone with endo?

[JS135]

26yo
after a year of ca125 fluctuations (50-90), lower left pelvic pain and painful menstruation, I have been given a date for a laparoscopy.

im so nervous about the lap and what it might find. My gynae has suggested possible adhesions/endo, but is going to take peritoneal biopsies as my ca125 remains elevated.

I have previously had clear ultrasound scans (TV) and a normal CT scan.

has anyone else had elevated ca125, clear scans and was later diagnosed with endometriosis during lap?

TV scans and CT scans do not always detect endometriosis if it is there. I've had more internal scans than I care to mention and NONE of them detected the endometriosis that was present in my uterine cavity. I had laparoscopic type surgery and it was only this that confirmed endometriosis.

When is your lap op taking place?. You need to insist that you are given an appointment a week or so post op to discuss the findings of this op even if it is by phone. Ensure this is noted down on your notes. It is poor practice for staff to go into very detailed explanations when you are in the recovery room so make sure this does not happen to you.

Hi thank you for replying.

Can I ask if your symptoms were very bad? Mines are quite mild, painful period on first and second day only, large clots and lower left tugging sensation throughout the rest of the cycle.

have you ever had your ca125 tested? I’m only really getting the lap because my levels are raised and no other explanation has been found for it yet.

I will have a post op discussion with the surgeon the following week, it’s already set up thankfully, I do have experiences where I have had findings reported back to me whilst recovering, completely forgot everything they said lol

edit: forgot to mention it is taking place October 8th, so I have a slight wait

My symptoms were cyclical with very painful periods with clots and heavy bleeding alongside pelvic pain, rectal pain and pain at tops of legs. My stomach also hurt on occasion.

Blood tests were done but cannot recall if CA125 was tested for at that time. CA125 in as inflammation marker and inflammation can also occur with endo.

Good luck with your surgery October 8th.

Look up nancys nook on Facebook? You might find info there

Hi, just an update for anyone in a similar situation. After having ca125 fluctuating between 50-90 for a year and clear scans, I had my diagnostic laparoscopy and stage 2/3 endometriosis was found with adhesions in surrounding uterus, bladder, bowel and peritoneum. I am still awaiting biopsies but this could take 4 weeks

JS135

They only performed a diagnostic lap op?!. Did the surgeon not do any excision surgery?. You will certainly need more surgery of this type (laparoscopic).

Have you had your follow up discussion with the surgeon?.

I would want to know why a diagnostic lap was performed.

The exploratory laparoscopy was to take biopsies due to my ca125 and to see if there was anything untoward. The endometriosis was a surprise and there was quite a lot of implants to be dealt with at the time. The gynae has said that removal would require a more major surgery and if I am not having symptoms at present, it would be fine to slow growth by stopping periods. She has referred me to a endometriosis specialist and future treatments will be discussed with them. It’s likely I will need surgery in future unfortunately

How do they propose stopping periods?. It looks like this gynae has done all she can to her ability.

I see also that you have been referred to an endometriosis specialist; is this person at one of the BGSE centres?. Their website is here Find BSGE Accredited Endometriosis Centres in the UK

Adhesions once formed can only be removed surgically; drug treatment will not touch those.

i think the plan is for now to take back to back pills, they have prescribed microgynon 30 for 3 months and then we will regroup and see how it’s working. I also have a follow up a month from now to discuss all my options once my biopsies come back.

thank you for the info ! Yeah im pretty sure the specialist is BSGE accredited thankfully.

The goal for now is to stop any further growth in the meantime by taking the pill I am very new to all this so trying to understand everything still. I have been quite lucky given the extent of the endo that I have few symptoms aside from painful periods, so I’m hoping that the pill will help with this too.