Here is more of my groin pain saga, this is why it is so important that we keep fighting and keep advocating for ourselves! Yesterday I arrived at the hospital for a core biopsy of the swollen inguinal lymph node. The appointment was at 1pm and we drove 2.5 hours to get there. Got all set up for the biopsy but they wouldn't let my husband come in with me, I was so nervous and scared and not happy but complied. The ultrasound tech comes in and asks if I had any questions. I reminded her that they also need to look for endometriosis in the biopsy, my wonderful Doctor and I agreed it needed to be ruled out.
The radiologist comes in and says "I don't know why the other radiologist (who read the u/s last week) even signed off on this biopsy your report showed your node is large but normal." So I explained that it was causing me pain and there was the potential of endo in the lymph node that was causing the pain. She argued that it isn't possible. So I told her that my endo specialist told me that yes endo can be "in" the lymph nodes and I had the pathology report he sent me for proof if she wanted to see it. So she says, I still don't think you need a biopsy, they are not without risk. I said, I understand the risk, and I want to move forward with the biopsy. I am shaking with nerves and nauseous at this point, I don't do confrontation well. And at this point I am already feeling like a crazy person and its obvious the Radiologist views me as a crazy person too.
The Radiologist asks me where the pain is so I show her and she starts searching for the node, but instead she saw a mass but not the node, she hands the wand to the tech and says show me where you found this node. So the tech shows her the node, the radiologist then takes the wand back in silence and works it over for a while. OUCH!!! She then says, this is not a lymph node, I believe this is a hernia or an endometrioma, and proceeded to show the tech why this wasn't a node. Including the fact that the mass continued into my abdomen from the inguinal canal where they couldn't see it anymore on the u/s. At this point I am frustrated and near tears.
The radiologist then said, it makes no sense to do a biopsy, this is in no way a lymph node, but there is something there that needs to be addressed. So she asked if I had a CT scan done, I told her yes in Oct. when the pain started and nothing was found. She said I am sending you for another CT scan immediately and I will go over the first CT scan, not just the results but the scan imaging. At this point she has been on the phone with my doctor as well several times. So I get the CT scan done and we give her time to go through the scans. She calls me back to her office and shows me the scans. It is indeed an inguinal hernia and the mass is the inguinal canal filled with fat. Luckily its fat and not bowel. She then pulls up the scan from October and guess what, the hernia is there, just as prominent as on her scan yesterday. So at this point she is horrified that I had 2 ultrasound scans and 2 CT scans (one in November at the ER that she couldn't get access to quickly) in which the radiologist and techs did not see the hernia. And that the techs performing the ultrasounds both believed the mass was a lymph node when it wasn't even close to looking like one in her opinion. So she says, because there are other factors that could be causing pain as well and your history of endo I want you to have a full pelvic MRI including hips, if you are willing I will get you on the schedule today and I will personally go over the scans. I said yes and she called the MRI dept and said I have a patient and she WILL be seen today. So at 3:45 I went in for my MRI, which originally was going to be one hour, but she decided to do a full pelvic MRI with contrast and a full one without. So 2 hours in the MRI. I will hear back today hopefully from the radiologist on what she finds.
It was a hell of a day, but we are finally getting answers. I really had to stand my ground though, if I had agreed not to proceed with the biopsy, she wouldn't have looked and found that it wasn't even a lymph node. It horrifies me that 2 u/s techs thought it was a lymph node when it wasn't and that radiologists didn't question it. Also frustrating that the hernia surgeon I saw didn't go over the actual CT scan, he just read the report. Had he looked it over the scan he would have seen the hernia. Radiologists are relying too heavily on what the techs say and image and not looking well enough at the imaging themselves. They are leaving us vulnerable, in pain and feeling like crazy people!!! The radiologist felt there was no excuse for missing the hernia in the 2 previous CT scans because I was able to accurately pinpoint my pain.
Over 3 months of pain because the first radiologist didn't do his/her job followed by similar mistakes by subsequent radiologists and techs.
I am very grateful for the Radiologist I saw yesterday, even though we didn't see eye to eye in the beginning. After she realized that it was not a lymph node at all, she was extremely helpful and informative.
We know our bodies best and though it is frustrating and exhausting we need to keep fighting for proper care! Educate yourselves, find non biased scientific evidence to share with doctors and don't give up!
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