Ive just had a pelvic ultrasound and was told I have 6 ovarian cysts on the left. Is that a lot? Consultant said ovaries are stuck together and looks like endo. Had Ca125 elevated at 53. Having had thyroid cancer at 26 im worried about ovarian cancer now.
Waiting on MRI and gynae referrals. I've had 1 c section, conceived 3 kids really quickly so I'm surprised with endo diagnosis. Currently suffering sharp pains, dizziness and nausea. Any advice appreciated, starting to spiral 🥺
Hi,
Please don’t worry about the CA125. That’s a very normal level with Endo. Mine moves between 45 and 85. While I was waiting (forever!) for a Laparoscopy to diagnose Endo I asked the GP for a repeat CA125 blood test a few times because knowing it wasn’t going up gave me peace of mind.
Thanks for replying! Glad to hear it's normal. Just got a bit panicked when my ultrasound was marked as urgent and I was seen quickly. I'm probably now in for a longer wait for MRI/lap. Have you needed any ablations/excisions?
I haven’t had excision yet because when I had the Laparoscopy they found Stage 4 Endo so they took pictures and referred me on to a specialist Endo centre. I’ll need major excision surgery including hysterectomy and ovaries removed.
Wishing you all the best for your healing ❤️
I'm in this situation too. You sound so calm and matter-of-fact about it all. I'm in bits. How are you coping?
I’m quite relieved to be honest because I’ve had weird symptoms for years, knew something was very wrong and was worried it was something more sinister. After my raised CA125 I had health anxiety for a long time but repeat tests showing it wasn’t going up helped. I’ve wanted a hysterectomy for years because I can feel the weight of my uterus like a bowling ball (fibroids) but never thought they’d offer it! So weirdly I’m quite happy about it all. Scared too though.
Hi, I just commented below but it seems we have been through similar and I also developed severe health anxiety following the ca125 test. It’s nice to know I’m not the only one.
Yes we have! You’re “lucky” you had your laparoscopy within the year. I had to wait nearly 4 years between my CA125 first being raised and my diagnosis. I wish they would automatically offer MRI/Lap for unexplained raised CA125 instead of expecting us to accept it as “one of those things.” 🤨 Because the word Cancer is in the title of the test it’s incredibly hard to just accept you’re all fine isn’t it?
Oh my goodness! I would definitely have struggled waiting that long. I was so scared about the test I did my laparoscopy privately, however my lap was done my an oncologist, not a endo specialist so unfortunately nothing was removed there and then. I’m seeing a specialist next week to discuss further. They found deep nodules all around my peritoneum and uteralsacral ligaments, uterus and bladder.
From the posts on here I thought endo only caused raised ca125 when you have an endometrioma, however there wasn’t any sign of this during my lap. Did you have this?
I hope you are doing well now xx
I didn’t know about only Endometrioma causing CA125. Apparently I do have a small Endometrioma, yes, but I think my fibroids may also be raising it?
I’m doing ok now thanks. Nothing was removed during my lap either. I have an appt at a BSGE clinic in January to discuss surgery, but because the Endo is on my diaphragm, bladder and bowel I think it’ll need quite a few surgeons and I’ll be waiting a while.
I hope you’re doing ok too xx
It's the loss of my ovaries that scares me most.
hi, I second the comments on here. My ca125 has been fluctuating between 47-95 for a year. I had all the scans, ultrasound, CT etc and nothing was found. Eventually had a laparoscopy because I was so worried about the levels, they found stage 2/3 endometriosis.
Newly diagnosed 
newly diagnosed
Newly Diagnosed, Mirena?!
Newly diagnosed.
