Who to Believe – Hemangiomas or is it something more?

Hello all! I am reluctant to post, yet I feel like I’m getting the run around and wanted a place to share. I’m 46 years old and for a few years have been dealing with unexplained upper right quadrant pain, sometimes radiating between my breasts and under my right rib. Had a colonoscopy in April but found I had diverticulosis (pretty common, I guess) but no polyps, which I have had in previous scopes.

All of the fun started at the beginning of this year when I had a few episodes of waking up out of a dead sleep (or during the day) of pain on the right side under my ribs…however it didn’t last very long, but always a dull ache off to my right side remains. I constantly feel full under my ribs as if I ate a huge meal, even if I haven’t eaten much. I know it’s not female anatomy related since all of the parts were taken out at the end of 2009 when I had a hysterectomy due to a ginormous endometrial cyst that had totally engulfed my right ovary, which led to a diagnosis of endometriosis.

So when my symptoms didn’t get any better I asked my GI doctor (urged him) to dig deeper. So he ordered an ultrasound of my abdomen, which was done in May mainly because I have a history of having multiple liver hemangiomas since roughly 2003. I was told by my prior doctor in 2010 that I really didn’t need to keep having them scanned since they were benign. So of course I listened and didn’t have them scanned every year.

The US found that not only are they still there (I have around 6 of them), but they have all grown in size, the largest being 8cm. The troubling part of all of this is that the radiologist that read the US found that between the scan done in 2008 and the one done last month shows that they appear to not have the characteristics of hemangiomas and that further testing should be done to determine their etiology. From what the US report tells me, they are all located in the left lobe and not on the right where my pain is located. Although that may not matter.

And because the US showed that my gallbladder was normal in size without any sludge or stones, the common bile duct was normal in size, the right kidney looked normal, etc. etc. they decided the next test was a Hida scan to test the muscle function of the gallbladder; and also an MRI with contrast to get a closer look at the lesions.

So far the preliminary report (shared with me by one of the nurses), although not final, apparently shows that they are hemangiomas and the gallbladder appears to be normal. Yet, I still feel like they are missing something due to the pain I have under my rib that also radiates from time to time down into my hip. The other troubling symptom that I can’t ignore is the on again off again itching of my neck, abdomen, arms, and hands…but no jaundice to report thankfully. There are times I literally want to rip my skin off! (I know I’m not dehydrated or have dry skin since I drink a LOT of water every day).

Just curious, does anyone know or have knowledge of/if hemangiomas generally occur in groups or normally not? Does having more of them negate the chances of this being cc or another type of cancer?

Maybe all of this is in my head?! But how can one radiologist read my US and come up with something different, when others over the years have always agreed? I’m baffled! And why is it so hard to get a medical professional to believe me when I tell them that I think something is wrong/not right with my body! I think a big part of the delay in diagnosis is due to the fact that I haven’t gone to the ER (yet). I know if I had gone, that I would have had a whole bunch of tests up front and not had to wait for them to check them off on their list one by one! Oh and not once have they suggested doing a liver panel blood test to check my levels!

Hopefully this post makes sense and its not a lot of mumbo jumbo. Would love to hear that I’m not the only one who wasn’t taken seriously when you just had a sense that something wasn’t right.

Trish

P.S. I used to be an extremely heavy drinker/smoker but have not smoked since 2000 and now only drink socially, not binge drinking like I used to in my 20’s/30’s.