Radiologists, are they failing women?

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!

Swollen Inguinal Lymph Node UPDATE

Yesterday I drove 2.5 hours to see my old doctor, well actually she is a FNP, but is super awesome.  I started the morning out with bloodwork.  She tested for everything, seriously....when the lab tech printed the labels they just kept printing and printing and printing.  Everything from HIV to Thyroid and Cholesterol.  Then later in the morning I had my u/s.  I was irritated with the tech, I know they aren't supposed to give info on what they see but she said, well yeah, I guess its swollen, but it looks normal to me.  Something about it being flat. But of course didn't give me dimensions, so I was worried maybe the lymph node had gone down and we didn't really find the cause of my pain.  Not that I didn't wish my lymph node was getting better, but my pain was not, so it would have left us scrambling for more answers.  I was super nervous about my appointment with the FNP.  I love her to death, but have been blown off so many times by other docs now I guess you could say I have PTSD over it.  When I got to the appointment she went over the U/S results. It was still huge although had changed a tiny bit. But it is still 1 cm on the short axis and 4.2 cm in length, yes that is centimeters not millimeters. She said to me I just couldn't fathom that it was actually that big on the first u/s, and when it came back that big again I knew we needed to take action. Looking on the tape measure, trying to wrap her head around how big it is.  She said I need to speak with the surgeons and left the room immediately. I could hear her across the hall, frustrated because both surgeons were not available and left a stern message with the receptionist for them to call her back asap.  After a while she came back in to tell me she hadn't got through to the surgeons but talked to another doctor about what was going on.  He concurred that the node needed removed in his opinion, that although it had a normal shape, the size was way too abnormal to leave any longer.  So now we wait to hear back from surgeons.....I will be happy to have some answers, but we have ruled out a lot of the more common and less dangerous reasons for a lymph node to be that size and the possibility of cancer is freaking scary. I woke up just sick to my stomache with worry this morning at 5 am.  I worry about cancer, I worry how we will deal with another surgery, who will help with the kids, if hubby can take more time off work and of course the cost. Here is an image to give you an idea on the size of the lymph node, so 8mm shorter than the size of the lime only flatter and narrow, and is located deep in my groin. No wonder it freaking hurts when I bend my leg and squash that area. She is out of the office today and told me that she would get back to me on Monday with more information.

4 Months Post Op ~ The Good The Bad The Ugly

Well today it has been 4 months since I had surgery.  I know its been a while since I posted, I am just

trying to deal with life. So here are some updates so far.

The GOOD~ In some ways I feel so much pain relief, I don't have any of the uterus pain which was intense and I don't seem to have any endo pain either. YAY! No more worries about bleeding to death during my period. Sex life has been great, no more pain their either.  Orgasms are different with the uterus and cervix gone but are still amazing.  So with a highly trained surgeon there is hope for having pain relief from adenomyosis and endometriosis. Bladder symptoms are gone, no more feeling like I am getting a UTI but not actually having one. No more feeling like I am being stabbed to death during my period or like somebody is dissecting me using a blunt utensil.

The BAD~ A couple of UTI's during recovery. Still lots of abdominal swelling.  Still lots of exhaustion, though nothing like before surgery.  Ovaries have not been happy, beginning to wish I had them taken as well. PCOS is bad as ever, I had to pluck my mustache for the first time ever. And my nightly hotflashes are getting worse.  I don't think the ovarian drilling helped, or not for long.

The UGLY~ Developed right groin pain at 6 weeks post op. Followed up with normal GYN, he thought there was nothing wrong, but reluctantly sent me for a CT Scan.  CT Scan showed nothing.  Endo surgeon said just wait it out and see if it goes away.  Exercise has been impossible and it's frustrating that I am having so much pain. Numerous doctors appointments where it was suggested I had an inguinal hernia, first couple were wait it out some more. U/S was ordered but showed nothing (or so I was told by the regular doc). Finally I was able to get a referral to a hernia surgeon. In the visit to the hernia surgeon he had his nurse call the u/s radiologist right away because they must have got the measurements wrong. I assumed maybe this mean he saw something the u/s tech did not and there was indeed evidence of a hernia.  Nope, I had a super swollen inguinal lymph node.  This was noted on the u/s but said it appeared normal. The hernia surgeon said the dimensions given were way to big for a lymph node.  A 2nd radiologist confirmed the size to be correct, and so the surgeon then said, is it multiple nodes stuck together?  Nope just one node the radiologist confirmed.  Concerned look on the surgeons face.  So then we launch into questions and exam, he does not feel any hernia at all and since the CT Scan and U/S showed nothing he felt that there was no hernia and that the lymph node was causing the pressure and pain on the inguinal nerves.  He said contact him in 9-12 months if it wasn't better.  Ummmm so what just happened???? So now I move on to another mystery pain.  Because of the location in the crack of my leg it is super painful, and I have now had it for about 2.5 months, waiting, resting, yoga, pushing through exercise, nothing is working.  Then of course my regular doc is just now on maternity leave.  I can't deal with training up a new doc on what is going on so I make an appointment with my old doc who is 3 hours away. You all know what I am talking about here, 15 appointments spent educating the new doc on all the issues, verifying shit that is already in your file, getting questioned on diagnosis's etc.. I want to say to doctors "Did you read my fucking file????" Winter road driving will suck, but at least I have less explaining I have to do for her.  I think my family wishes I would just shut up and deal with the pain.  It sucks to have a taste at a life without pain only to find something else wrong. Many women experience this though and so I know I am not alone. I am also not crazy!  Family history of cancer has me totally freaked about about cancer, either in the node itself of that it is swollen as result of ovary issues or something else. My husband told me I needed to quit researching and googling things.  But honestly if I hadn't taken my health into my own hands and done my own research, I would never have found a great surgeon and I would still be full of Endo, facing kidney failure in both kidneys and have an Evil Uterus. Looks like I will need a biopsy of the node at the very least. Maybe I am over reacting. But I did spend about 28 years trying to tell docs about my painful periods before finally getting justification and proof that the pain was not all in my head.  I am also still getting supper swollen, still in elastic waist pants etc... I am ready for my life back.