Anxious wait

Hi there

I'm currenty anxiously awaiting an appointment from an urgent access referral made by my GP. Have been suffering from persistent and worsening pelvic pain for over a year now. Combination of symptoms include painful bloating, sharp stabbing pelvic pain, heavy periods, spotting at various stages throughout my cycle and a marked change in my bowel habits over the last 6 months - so much so that it has become a bit of a standing joke in our family how often I have to poo!

Symptoms got so bad at work one day this last summer that I walked to urgent care at my local hospital and ended up being admitted. Had scan the next morning which showed a 46x36x44mm endometriotic cyst on left ovary. Was discharged and given a follow up ultrasound appointment for three months later.

2nd scan at end of last month showed cyst had got bigger 52x52x39mm but was now "mixed echo return". Then saw a gynaecologist who said nothing to worry about despite me describing my symptoms. She said they would scan again in another 3 months.

Next day a letter arrived with a blood sample bag and form asking me to have CA125 done urgently so I went to my GP this Monday to ask why I had been sent the blood request. She took blood sample there and then and said she would be in touch. She called me on Wednesday to say my results were high - 213 - and that she has now referred me via urgent access pathway and I should be seen within 14 days.

I am out of my mind with worry. Can't concentrate, finding work very hard (I'm self employed and work from home so can't really just take time off).

I know CA125 levels can rise becasue of ovarian cysts but I also know that a cyst plus raised CA125 can be a indication of ovarian cancer.

Anyone else with similar stories and any advice on helping to keep my mind healthy while I wait for news of this next appointment and what is likely to happen at the appointment?

Thank you xx

  • hi there I know how you're feeling as I'm going through the same I went to the doctors was referred for urgent scan then had blood tests they kept me in and did a ct scan. They told me that it was a large ovarian cyst and that I would need surgery and my ca125 is higher than it should be. I went home and they called me to come and speak to the consultant who told me that they didn't know if cancerous or not until surgery. After that they called me again have now had biopsies done and they requested a colonoscopy ( all clear ) but I'm still waiting to hear back about surgery. I've had a letter through to see my consultant in 3 weeks time it just frustrates me as it's a waiting game. 

  • Thanks for you reply, while I wish no one had to go through this, it is a comfort to know there are other people in the same boat! I had sort of guessed that they may well remove the cyst or at least do biopsy so I'm expecting this, but right now I just want that letter to arrive with the appointment! I hope you get news soon too x