Pelvic Pain Support Network
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Worried over pelvic pain

Hi, I'm new to this & had some worrying results today. Have suffered with pelvic pain for some time, went to the docs beginning of the year, CA125 test done, slightly elevated over the norm. MRI & 2 ultrasounds later was told had ovarian cysts, fibroids & Endometriosis. Went for a CA125 again yesterday and doc rung today wanting to see me (Panic set in) went to see her & CA125 now very high, possibility of Ovarian Cancer but could be due to benign conditions. Being referred within the week to be seen by consultant. My pelvic pain has been particularly bad just recently along with other symptoms. If anyone could give me some positive advice, would appreciate it, as it's hard not to think the worst

2 Replies

Hi MarieK123, I've had elevated CA125 due to benign condition and also suspected PID - though didn't have PID at all. I've had breast cancer and had my ovaries removed after pain, abnormal ultrasound, increased CA125, cysts, etc. After removal of the ovaries and Fallopian tubes the pathology showed I had perfectly healthy organs and the poor gynaecologist was so unhappy for me. I was fine - I knew I wanted the procedure the reduce my likelihood of recurrence after breast cancer and the issues I had with ovarian cysts, but I am 51 and had already been through medical menopause once before. My advice to you is do your best to stay calm and centred. Wait on clinical findings, don't rush into anything, don't panic (easy to say, I know). I'm really happy your getting everything checked and have a consultant whose concerned to find out what's going on. The CA125 is notoriously inaccurate as you already know. Benign conditions and many other factors can elevate the levels and you have cysts, endo etc, so there's reasons it could be going up apart from anything nastier. Spare yourself the worry, confide your fears to those nearest and dearest to you and get support. In Australia the cancer council provides a free telephone line to people who need advice - it is staffed by qualified nurses who are also qualified counsellors. I wonder if there is a service like this near you. Perhaps you can check with your local doctor or call the cancer organisation in your country. The people you will speak to are very knowledgable and kind and will help you navigate this time in your life regardless of the fact that you don't have a cancer diagnosis. I am wishing you well. Please let us know how you are. Remember you are the most important person and any kind of diagnosis or disease doesn't change who you are. And you don't have to go through this period of uncertainty alone... May you be well and happy.

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Thank you for such positive advice, you have made me cry! Feeling emotional at the moment and just want to find out exactly what's causing my symptoms, I am trying to stay calm but my head is racing with all sorts if terrible things, which I'm keeping at bay, hopefully I will know very soon as within the next couple if weeks. I will let you know, and best wishes to you, after all you have gone through and to be so positive is amazing so will try take a leaf out of your book :)


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