Looking for advice

[BB721]

Hello. I don’t have a diagnosis as of yet, but I thought someone here might be able to let me know if I’m on the right track with the tests that are being done for me over the next couple of weeks. I am 40 years old.

A month ago, I woke up with extreme urinary urgency, some back and pelvic soreness and pain. I also started having gas and constipation. It was very sudden. It was bad for about a week and then all these symptoms have come and gone to varying degrees except for the constipation-that has stayed. I don’t really have the urgency anymore at all. I’ve had 3 negative UTI and pregnancy tests. Every urinalysis, including my at home tests, show microscopic blood. My last period came a couple days earlier than normal and was shorter than normal. I’ve had a transabdominal and transvaginal ultrasound and was told it was clear and no cysts were found as well. I’ve been to the gynecologist who did a pelvic exam and culture, which were fine. I then went to the urologist who ordered a pelvic and abdominal CT and then after I get the results of that (it’s next week) I’ll have a cystoscopy. My GP ruled out any issues with my ovaries bc the ultrasound showed nothing and my gyno looked at the results and also said she didn’t think this was gyn related. I know enough to know they can’t say that for sure.

Will the CT be enough to determine if I have ovarian cancer? Is it common to miss it on ultrasound? Is blood in the urine a normal symptom? Does blood in urine only occur with metastatis and if so, would an ultrasound have picked at least something up? Does this sound like the best next step? Thank you.

[MrsN1976]

My mom had oc so I get routine tv ultrasounds to take a peek at the ovaries for screening. That said, I’m not an expert. My doctor has high confidence that these give good looks at the ovaries in most cases. Best wishes to you.

[BB721 in reply to MrsN1976]

Thank you so much.

[N-A-58]

My mum has stage 3A ovarian cancer and a 3 ultrasounds and a ct missed it.

Have you had a ca125 blood test yet?

[BB721 in reply to N-A-58]

Thank you for your response. I asked my GP for the ca125, but she said she’d rather either refer to urology or go straight to the CT before any blood. I opted to see urology first.

[BB721 in reply to N-A-58]

I am very sorry your mom is going through this.

[BB721 in reply to N-A-58]

Can I ask you how they eventuallyFound it? How did all those scans miss it? I’m still struggling to find what is going on with me.

[N-A-58 in reply to BB721]

They said because she was 60 they would remove ovaries and Fallopian tubes just in case and found it then. Hope you get some answers soon.

[BB721 in reply to N-A-58]

Wow. I’m so sorry

[Harp-1]

My sister has ova stage three...even met to omentum...us did not show anything

[BB721 in reply to Harp-1]

Thank you. I’m sorry about your sister.

[Natsmb]

In my experience with my eventual ovarian cancer diagnosis, blood tests did not reveal cancer. I don't recall if they did a CA 125 but I do not think so. The challenging part of diagnosing OC is the cancer damaged tissue remains contained inside the ovarian body or the ovarian organ that it started in quite effectively until the sheer volume of the cancer cells/tumor, cause a breach through that tissue so that the cancer can invade the rest of the body. Even a ca-125, which tests for proteins and protein levels generally only produced at those levels due to tissue damage with damaged cells, will remain located within the tissue the tumor is located in and may not spread to the rest of the body in concentrations that would alert the average doctor. Not to say that you should not get one because it definitely would be another step. But if you were to take it too soon and the fact that the CA 125 levels showed no dramatic elevations might work against you as a false negative. So go ahead and get further testing and scans and as long as they let you. However, when my condition with ovarian cancer eventually manifested itself, (a 14 cm tumor that finally grew through its contained tissue in my left ovary), I asked my doctor if he would have been able to identify that much earlier had I gotten a CT scan and he said absolutely.

I think there is a very good chance that a CT scan will reveal any anomalies going on.

I'll pray for you that you are able to get to the bottom of this and SOON!

[BB721 in reply to Natsmb]

Thank you so much. I understand what you are saying about the test. Thanks for explaining that. I’m sorry you’ve had to deal with this awful disease and I hope you are okay. Thank you for taking the time to help someone else.

[Dichad]

In my experience cancer wasn't diagnosed until a biopsy after hysterectomy although CT scan showed a mass on the ovaries and MRI showed it was suspicious. That said it was only stage 2 when diagnosed and like you sought help when the symptoms came on suddenly so you are definitely doing the right thing. I hope you get good results soon.

[BB721 in reply to Dichad]

I wrote back to you but didn’t put it as a reply. Thank you for sharing your story and for the wellwishes. All the best to you.

[BB721]

I hope you are doing okay. It looks like I’m on the right track with a CT. Thank you so much for helping me.

[Sddb]

Have they ruled out interstitial cystitis? Hope you get to feeling better!

[BB721 in reply to Sddb]

Thank you! No, that absolutely hasn’t been ruled out. I had a very brief visit with a no so great urologist who gave me a 5 second exam and ordered the CT based on the hematuria in my urine sample. She completely dismissed my pain symptoms and said the two were unrelated. I know that’s not true. Last night I was awakened by stabbing pains several times under my left rib in the front (that was a new one for me) and AFTER I urinate now, there’s discomfort and some burning. I think she thinks it’s probably a stone, but either way I’m making sure I switch urologists if this ends up being urological.

[Sddb in reply to BB721]

Sounds awful! Good luck. My mom has interstitial cystitis and it took a long time to get diagnosed. Similar symptoms to yours.

[BB721 in reply to Sddb]

Thank you so much.

[Leniko]

Did they run a CA125 blood test?

[BB721 in reply to Leniko]

No.

[BB721]

Just an update. I had an abdominal and pelvic CT with and without contrast and it was negative. Also CA125 was 6.