An update... advice/reassurance needed please :-(

[MemmaJ]

I posted on here 7 months ago and had some really helpful responses, thank you!

I found the old thread lastnight and posted an update at the bottom, thinking it would resurrect the thread and bring it to the top again, but it doesn’t seem to have done that 🙈 So it looks like I need to post another new one, sorry!

This is the old thread, so you can see the the backstory:

healthunlocked.com/ovacome/...

So since then, I finally paid for a private CA125 blood test in December, which came back at 37 - so slightly higher than the first one...

Since my last post, I have also seen two different gynaecologists - both of whom were very dismissive of everything, and just want to tell me I must have endometriosis (and that that’s probably the cause of my pain/symptoms and the raised CA125).

I was supposed to have a Laparscopy next week to look for this (and look at everything), which I had waited a long time for as ‘non urgent’ - but of course it’s now been cancelled.

My symptoms are ongoing - still have all of the above, but some of them worsening by the month (like the fatigue, bloating, frequency of needing to pee etc).

One of the gynaecologists did order a repeat CA125 in February - which came back at 48. So it’s just steadily and slowly rising, but again, he wasn’t bothered. I keep being told it’s probably just ‘cycle ‘related’ or ‘something like ‘endometriosis’... surely if it was cycle related it wouldn’t have been raised every time I’ve had it 🙄. And I don’t know much about endometriosis, but I don’t know if it would cause the CA125 level to keep going up, I would think it would be more ‘stable’?

Particularly since I don’t really have any other symptoms of endometriosis? (My periods are regular, not particularly painful (no more painful than the rest of the month anyway..!), I’ve never had fertility issues (3 successful pregnancies, no problems conceiving or carrying pregnancies).

I also had another pelvic ultrasound a month or two again, and they reported what they thought was actually a hydrosalpinx... so now on 3 different ultrasounds, by 3 different people, the same ‘problem area’ has been reported as 3 different things..! 🤷‍♀️

I’m just so worried.... I agreed to this Laparscopy for peace of mind, to finally find out what the heck is going on and hopefully then just move on... and now with it being cancelled, I am not going to get that.

And I don’t know when I will now because I’m just going ‘back on the routine waiting list’ , whenever everything re-opens!

[TealSong]

Hi Memma J! I'm sorry to hear you're having this worry. I have a history of endometriosis, and a complex cyst was found on one of my ovaries early last year. CA125 was 68. It was 50/50 what the area of concern was within the cyst until I had surgery. It turned out to be endometrioid ovarian cancer from an endometrioma (very rare, I'm told). Since the surgery, my CA125 has been 67, 45, and now 49. At 32, with a history of endometriosis and premenopausal, my consultant isn't concerned. He's told me the reading can vary in premenopausal ladies from day to day even. If you feel your symptoms are worsening, chase your GP and gynaecologist for more input. It's important to listen to your body. I hope you get some help soon. Xx