Back pain

[Charlilou]

Hi ladies,

I had raised CA125 Suspected OC but clear ultrasound scan now gynae suspects endometriosis but I can’t believe this. My symptoms are brown discharge with some bleeding in between periods and painful at intimacy

I’m having pain most days in my tummy, bloated constantly and today my back pain is excruciating . Do these symptoms resonate with any of you? I’m quite worried.

[N-A-58]

I don’t want to worry you but my mum has a raised ca125 of 163 and 3 clear ultrasounds and a clear ct scan. She had stage 3A ovarian cancer. They can only diagnose OC via surgery so keep pushing.

[Charlilou in reply to N-A-58]

Thanks for replying it’s good to know I’m not going crazy

[Charlilou in reply to N-A-58]

I’m sorry to hear about your mum I do hope she is getting better. I hope you don’t mind me asking, how did your mum finally get a diagnosis?

[N-A-58 in reply to Charlilou]

Thank you. She was diagnosed only via laparoscopic surgery. They then went and did full debulking surgery two weeks later for full staging done. It’s been a rough road and she is in remission now. Long may it continue.

I hope you get some answers and soon. Take care.

[Coconut2020]

I would ask for a mri and a ct scan asap

[Charlilou in reply to Coconut2020]

Thanks I’ll keep pushing

[SusanVolluccihank]

Please push. I have clear cell ovarian cancer comes of the time from endometriosis. They didn’t suspect it either with scans. Insist on surgery

[Numi]

Hi. I had 2 ultrasounds which came back clear, and a gynae consultant decided I must have a bowel problem. The bowel consultant felt my tum and straight away felt hard nodules, and referred me back to gynae. I had a CA125 test which came back at 149, but a biopsy done using ultrasound was clear, but a CT scan and a second biopsy gave me my OC diagnosis, which surgery confirmed as 3C. Have you had a CT scan? If not, do push for one, and another CA125 test, and if necessary, a second opinion from another consultant.

[Charlilou in reply to Numi]

I have had blood tests ca125 of 86 and a cpd of 14.4 . I’ve been given an ultrasound and a trans vagina all clear but it was done by a trainee and overseen. I have been given the combined pill as the gynaecologist told me it must be endometriosis. I have rang the doctors and told them my symptoms have changed. All I get is your scan is clear so I’m not worried off my GP. I have a blood test end of May to check the ca125 and gynaecologist telephone appointment in June. How can I get them to diagnose me?

[Numi in reply to Charlilou]

It is often hard to get GPs to take the symptoms of OC seriously as many have little experience of it. The first GP - a woman locum - I saw told me I couldn't possibly have anything gynae wrong as I was too old!!!! I was getting period type pain despite having gone through menopause. It took 2 further GPs, 3 consultants (2 gynae), and several months to get my diagnosis. Who knows, but it may not have got to Stage 3 and be incurable if the first GP had known anything about OC. Insist on a repeat CA125 test - it's the work of minutes for a nurse to take the test and a lab to examine it - but do bear in mind that it's not a reliable marker for all women with OC, though for me it is. Also, ask to speak to another GP and if necessary, explain that ultrasound isn't always the best scan for OC. If you have any family history of OC, or breast cancer, then you could use that as leverage. Please insist on a referral to a consultant. It's not right that we have to fight so hard to be listened to, but it's often the only way. Wishing you all the best. xx

[Iside]

Yes, I had the spotting, I.e.brown blood!! Having gone thru the menopause, I went to the docs & eventually confirmed after Laparoscopy with OC stage 3. Am in treatment but never had pain, just period pains occasionally. Insist on Laparoscopy it gives a def.,diagnosis. Buone fortuna X

[antifer1234]

Please, please insist on further investigation.

Ct and mri straightaway.

Push hard don’t be like me and pretend it will go away.

For your mental health you need to know one way or the other.

Good luck Anthea

[Differentforgirls]

I felt well before diagnosis ( apart from weeing often & not feeling hungry) but an ultrasound showed something wasn’t right so had an MRI - within a week after that I had surgery.

Diagnosed with 3b high grade serous OC Feb 2018). Surgeon said there was scarring from endometriosis ( which I hadn’t ever been diagnosed with ). I have since read endometriosis can slightly raise your risk of getting OC.

Hope you get an MRI or CT scan soon. Hopefully you will be ok but you need confirmation to help your mind.

Please let us know how you get on.

Take good care xx

[Differentforgirls in reply to Differentforgirls]

PS I had back pain too which is why I read your post xx