36 with 6 months of abdominal pain

[ccwbrca]

Hi friends.

Seeking guidance. I started having bloating and epigastric pain which started almost overnight and has persisted the last 6 months. I've seen gi who did egd which showed some mild gastritis. I went for TVUS for annual screening as I'm Brca+ about 5 months ago which looked fine as did CA 125. I'm being told it's IBS which would be great but I just keep getting a nudge that this may be more...

Can y'all give me any input as to if this sounds like those of you with PPC or ovarian cancer?

-burning abdominal pain which worsens if on empty stomach

-also significant bloating and indigestion. I joke that stomach feels like it's eating itself at times even when I just ate something.

-some constipation

-often in mornings, stomach feels sore, if that makes sense.

-I can't seem to find pants that aren't restrictive even though I've lost some weight with trying to eat healthier.

-I feel urine output has diminished, if that's possible, but I try to go often hoping it will alleviate some pressure.

I'm Brca + and they did ultrasound 5 months ago which showed nothing. CT around same time looked find except calcifications around abdominal wall if I remember correctly which radiologist thought was "scar" from my mastectomy reconstruction flap.

I feel dismissed but can't seem to let go that something is wrong since I am so uncomfortable. I've never felt this way before in my life.

I'm at the point now where I just want to remove ovaries as I'm tired of worrying. Any thoughts?

Thank you thank you thank you.im scared.

[Tesla_7US]

CCWBRCA, Trust yourself. Something is definitely wrong. I had symptoms exactly like yours. My TVUS did NOT pick up OVCA! Neither did the endoscopy, colonoscopy, my oncologist from my breast cancer/mastectomy, the urologist or my GP!!! Go to a gynecological oncologist. They can track down the root cause. You might not EVER have elevated CA125, some patients never do. So, trust yourself and get a second and third opinion. FYI, I was repeatedly dismissed with "you have IBS, you have GERD, your stomach isn't emptying fast enough, you need to see a nutritionist" etc. I was blown off by the very people who should have been looking for the OVCA. Your very unpleasant gastric issues could be from ppc, ovca, colon cancer etc. See my profile for more details.

[85live4ever in reply to Tesla_7US]

Hi Tesla, I can related to everything you are saying. Mine was missed for 5 years. I kept being told IBS I feel its much easier to come up with IBS than to really find out whats going on.

You have given good advice take care Cindyxx

[lorraine71-Australia]

Hi, We know our bodies better then any one and if this is upsetting you so much go for a second opinion till you get answers. I can tell you my side effect when I was diagnosed with oc but we are all different, one is back ache I've had then most of my life , but the one that made me go and see my GP was the bolting and passing wind, I looked like I was pregnant hard at 69, she took one look and sent me with a letter to our local emergency hospital a sample was taken of the fluid and a 125 was taken by this time I had advanced 3 ovarian cancer. One other sign is frequent unerring I was getting up all through the night.

As you said all the test seem fine but you need to feel comfortable in the results do go for more opinions..best of luck Lorraine xx

[ccwbrca]

Thank you all. I will just keep pushing forward. Appreciate you more than you know.

[Caroles1]

Hi,

You have been given good advice from the ladies,please don't get fobbed off with the IBS diagnosis.You know your body and you know something isn't right,get tested now,it may be something or nothing,but fight until you get the right diagnosis and treatment.

Let us know how you get on,

Carole xx

[ccwbrca in reply to Caroles1]

Thanks. I'm just not exactly sure how to move forward. Do I beg for an MRI if they didn't see anything on CT 3 months ago? I know I could just schedule the BSO now and that will help but it will be weeks before that is scheduled electively, I imagine. Not sure best modality to look at ovaries/ppc? How were your cancers eventually discovered? Not really wanting to sit on it waiting for someone to see something in imaging.

[Caroles1]

My oc was flagged up by ascites,swollen stomach and extreme fatigue.I then had blood tests, CA125 being one of them and mine was high.

I then had an internal,with camera by my gynaecologist,followed by a ct scan then MRI scan,but I was lucky enough to have private treatment due to insurance.

Having said that I would take someone with you and be as forceable as you can be to get the tests done,since if it is something unforeseen it will all cost the NHS a lot less money if this established,either way it is a win,win situation.

Sometimes,who shouts loudest etc.its your body and you deserve the treatment to get it sorted to a satisfactory conclusion,

Lots of love and positive wishes,

Carole xx

[rppizio]

My story is the same, told it was my diet, IBS and because I had already had a partial Hysto there was no need for concern that it was a female problem... WRONG... after one of my tumors ruptured I demanded that a scan be done. Told my bladder issues were due to my age, really 54, her response is that is why they make depends products. Here is a more detailed breakdown : reflectionsofmyworld.com/sh...

[ccwbrca]

Well, I just went to ER in Florida because I'm feeling so uncomfortable. CT was fine, Which makes me feel like a crazy person. Thankful, don't get me wrong. Just not sure what this is....

[Lizchips]

Hi, my stomach was swollen but no pain, I did have to urinate frequently with little urine. I was extremely tired, didn't matter how much I slept. Would wake exhausted. I also dropped weight but my stomach got larger. I was misdiagnosed 6 times. Ca125 is only one test. There are others. My stomach still bothers me after I eat. But feels great on an empty stomach. Kind of opposite of you. Best wishes, Liz

[ccwbrca in reply to Lizchips]

How did it finally get appropriately diagnosed?