Worried ....What tests give you the diagnosis ?

[Zoooeeey]

I am at Gynecology appointment today and worried I will have to wait again for absolute certainty that my complex cyst isn’t cancerous. Sorry long post...

I have been in good health for 10 years following a full hysterectomy but leaving 1 ovary. Last year I started with back pain and pain when lying on my side. I joined the gym as I thought I was getting old.. (42) but the pain continued. When to drs in October as pain worsening and moved into groin and constipation. More pain killers. Several uti infections. Paid for private ultra sound and found complex cyst in November.. said can’t tell if it’s endometrioma or complex.

In meantime dr has refused blood test as she said I will get a false positive and to wait. I have had blood +++ in my urine each time I have thought I had kidney infection but they have said not proven uti and I have been really ill and sent to a and e with suspected torsion of bowel or appendicitis but then sent home with painkillers and a referral to urology for the amount of blood in my urine. I have lost a stone in weight since Christmas.

I really need advice as to what tests to ask for as I am really worried they are missing something. Thank you for any ideas ❤️

[Kryssy]

Hi. You sound extremely worried and you need answers quickly. You are going to the best place today. Try not to panic and ask as many questions as you can. There's nothing wrong in asking, "Have I got cancer". You probably won't get a definitive answer but at least the doc will know that you are concerned. I would demand a CA125 blood test and scan. It is your body and your life. But, also be aware that any kind of infection will give you a reading on the blood test. Don't be fobbed off but don't lose your temper either. That doesn't work. Ask for a PET scan too. They are very expensive and I don't know if they are the norm in UK. They are here in France but a CT scan will show what's going on too.

At the end of the day your GP could have been right all along and you have nothing to fear and I sincerely hope that's true. Please let us know how it all goes. Good luck.

Love kryssy xx

[Zoooeeey in reply to Kryssy]

Thank you so much xxx

[January-2016-UK]

In my case it was a CA-125 value of 1250 which very strongly pointed to ovarian cancer but it took a biopsy of the tumour to ascertain what type.

Have you had th CA-125 test yet? A CT-scan can be more useful than an ultrasound scan.

You could ask your gynaecologist what reasons he / she has for being so sure cancer is not the reason for your problems. I hope it’s not but in which case there does have to be a cause for your symptoms.

All the best!

[Zoooeeey]

Thank you it has given me the confidence to ask some questions today xx

[Rikashea]

Hi, hope everything went well for you today. If i were you i would ask your gynae to refer you for a CT Scan. Blood tests are great but if they're not sure what's wrong, they won't know what to ask to be tested for in the blood samples. CT scans will give them better indication.

Good Luck

[Zoooeeey]

Had a non conclusive appointment as my consultant was ill😡they are sending me for an mri and referring me on to another consultant as I also suffer from endometriosis.

[Hidden]

Well that was disappointing but hopefully the mri will only show if there is endometriosis and hugs sent your way

[Sue1962]

My history and my story are different, but we can ALL relate to wondering whether we have cancer. Personally, after some post-menopausal bleeding episodes, I opted for a total hysterectomy. I started with a single ovary removal, after discovering a cyst (based on the size, we joked that I had an ovary on my cyst). About a year later, the bleeding returned. I said "get rid of all of it". Since I was already going through menopause, I had no concerns about hot flashes etc. I was more concerned about ridding myself of as many cancer-receptive organs as possible. Now about 6 mos out, I am thrilled with my choice. Yes, I have episodes when I can't shed enough clothes or find enough fans, and yes it's true my sex drive is basically non-existent. But I can live with all that. I couldn't have lived with cancer. Decisions are very personal. Everyone has to make their own. I wish you well.