Hand hold please - complex ovarian cyst

[RamblingAlong]

Hello Mumsnetters,

This is my first post on Mumsnet, so apologies for any rogue formatting.

I'm just looking for a bit of a handhold and reassurance from anyone who's been through something similar.

A week ago I (28) had a transvaginal ultrasound to locate my mirena IUD - I'd gone to the GP to have it removed but she couldn't find the strings, so I was referred for this scan. I'd wanted the IUD out because I've been experiencing increasingly painful and frequent cramping (especially on one side) since having it in, and I was worried it wasn't agreeing with me or was in the wrong place, so I wanted to switch to the mini pill. The pain can be really bad and I'd noticed I'd been taking ibuprofen most days to cope. I have a history of heavy and painful periods, and while the IUD helped with the bleeding the cramping has been really bad.

The GP called me yesterday with my ultrasound results. The IUD is where it's supposed to be but they found a "complex ovarian cyst" measuring 7x4cm on my right ovary which they want to urgently investigate. I've been referred on the 2 week urgent pathway to gynaecology for more scans and I've had to arrange a CA125 blood test for my ovaries through my GP which I think is to detect cancer makers? I'm just in so much shock and so scared. I'm 28 and I haven't had children yet, but I desperately want to. DH and I were holding off trying for another 6 months to a year or so due to jobs and building up savings but I've been broody for ages and now I'm so terrified I've either got something really scary or my fertility is going to be affected in case it's bad endometriosis and/or I lose the ovary.

Sorry for rambling, I'm just feeling so anxious and keep alternating between crying and feeling numb. I was just feeling so excited about trying for a baby soon and now I've got this scary news instead to deal with. Any handholding or reassurance/stories of similar experiences would be really welcome, thank you 😥

Most complex ovarian cysts are benign. Ca125 is a test for tumour markers but it can be elevated from other gynae issues which are not cancer. If you do need one ovary removed you will still be able to get pregnant.

Hi @Slol - thanks for replying to me. That is comforting to know that the CA125 marker can be raised for other reasons. I think it's the waiting and not knowing what type of complex cyst it is which is making me anxious. I'm trying not to Google too much.

They will always do a CA125 test first to rule things out but I agree with what @Slol just said, it can be raised for other reasons. For example, they shouldn't do the test when you have your period.

CA125 is an inflammation marker and as Slol writes it can be elevated from other issues that are not cancer.

Endometriosis can raise it and I note you have a history of painful and heavy periods so that may ultimately be the root cause. I hope you receive some definitive answers soon.

I had Ovarian Cancer when I was 28. One ovary removed and I went on to have children via IVF (DH has fertility issues as well). As PPs have said, a complex cyst is not necessarily a malignant tumour, and while a CA125 can provide some useful info, it's mainly a tracker to see if your levels are rising over time, and it can become elevated for several reasons. The waiting and not knowing is the worst. Hang in there.