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.

4 weeks post op, a review of my recovery so far

Recovery for me has had its ups and downs.  I will be 4 weeks post op tomorrow 10/3/17. 

5 dpo (days post op) I kept feeling like I wasn't able to fully urinate, my bladder seemed painful, but it didn't feel like a UTI.  I sent my surgeons office an email at 7 dpo asking if I needed to be worried or if it was just post op pain.  They felt that it was best to get check for a UTI. So off to my general doctor I went.  My husband took me to the appointment because I was still on pain meds and not able to drive yet.  My leucocytes and white blood cells came back high but no bacteria yet, but she felt with my history of UTI's and kidney infections it was best to treat with Cipro antibiotics.  They sent the sample to see if anything else ended up growing.  By that evening I was having excruciating back pain, just like a kidney infection, I tried to let the Cipro do its job and held off until the next morning when I decided an ER trip was necessary. They did a cathed urine sample to check for sure on infection but it was negative. My leucocytes and white blood cell count was still high though. The doc suggested it was sepsis, kidney infection and that my surgeon probably damaged my ureters when excising the endo....I was totally freaking out!  I doubted seriously that the ureters were damaged, this is why I went to see a specialist, but the ER doc was convinced it was that, and was irritated I hadn't seen a surgeon here.  After a CT scan to rule out that damage, the doc came back in, said everything is fine, keep up with your pain meds and go home.....What??????????  What about the sepsis,white blood cells and leucocytes, he evaded answering the question except to say my fever wasn't high enough....So then why even mention sepsis?  Anyhow I headed home kept up on the antibiotics and did lots of resting. Then I got my CT scan report....I had fluid at my cervical cuff, and the diagnostics said it was a likely postoperative seroma but the scan didn't show signs of abscess. The doc didn't even mention this, and it could have been the reason for the bladder issues and elevated white blood cell count.  I emailed the surgeon and he confirmed that it was normal for how many days post op I was and that it would likely go away on its own. Just to watch for fever.

I also during the 1 week mark added crazy breast tenderness to the mix, which lasted a few days.  I think it was about the time I would normally have had a cycle.  But I have never had them be so tender, like I needed to have absolutely nothing touching them, clothing was extremely painful.

At about 12 dpo I started feeling so much better, my pain was almost gone and I was able to start weaning off pain meds.  All the pain I had before surgery was gone. Things were looking up.  Then that next week I started to have bladder spasms, like crazy!  I couldn't sleep through them and was out of pain meds.  I called my local GYN pretty sure it was surgery related and thought maybe it was best to get seen.  Took them 2 days to call back.  By then I had starting taking uristat which seemed to have helped.  When the nurse called, she said, that the Dr. had just had time to go through my surgery notes and pathology, wow you really had a lot done and a lot of issues didn't you, that surgeon found a lot.  Ummm yes, this is what I keep trying to tell you all.  So now apparently they will take me seriously. She said that the bladder spasms were normal after that much surgery and to keep taking the uristat and to call if it didn't subside in a few days.  It did thankfully subside, although I notice if I am too active it will still spasm a bit.

I continued to be a little better each day, I still feel like I have a sex drive, which I was worried about. I am not cleared for sex until at least 8wpo (weeks post op).  But I feel desire for my husband which is reassuring.

I have not had any bleeding except right after surgery.  I had some pink discharge at about 21 dpo but suspect that is from dissolving stitches and/or from doing too much.

26 dpo I have had some crazy ovary pain starting in the evening, and mostly on my left side.  I also have had an insanely itchy scalp (which is a premenopause symptom). I fear my ovaries are angry and I don't know when they will get to working again.  They didn't work well before and the drilling was a last ditch effort to have me keep them as long as I can, I am only 38 and don't want to lose them and start HRT (hormone replacement therapy).

During this recovery I still have a very swollen belly which is definitely worse towards evening.  I am obeying my doctors orders about not lifting over 10 lbs, except once when I forgot and picked up my cat....I am trying not to bend and am not pushing, pulling or twisting.  As I feel better though it is hard to remind myself I am not allowed to do these things.  Putting on socks and shoes is a nightmare, lol. Bending is not comfortable for my swollen belly and we are now not warm enough for flip flops and dresses anymore.

27 dpo,I can say now that all of the original pain (except for the ovary pain) is gone.  I feel so much better, I didn't even realize how bad I was feeling before surgery.  I still tire very very easily, and I have to remind myself that though my tiny external incisions are just now almost healed the worst was on the inside and it is still very much healing.  My bowel issues (mostly diarrhea) are completely gone, my acid reflux is gone, my back pain is gone, my inner thigh pain is gone and my RLS (restless leg syndrome) is much less.  I thought the RLS was completely gone but the cipro seemed to aggravate it.  A lot of meds and foods aggravate it for me. But the every day RLS is gone, which I had no idea might be endo related.

The kids sometimes forget that now that I am home and not in bed a lot that I still need help.  But they are good kids and with some reminding they get things done.

My husband has been amazing, I can't even begin to describe how much he has been there for me, how much he worries for me, how much he helps me and how much he loves me! I am very lucky to have him in my life.

Pathology Results from Hysterectomy and Endo Excision

I got my pathology results back a few weeks ago and wanted to share some of the findings.

The uterus did not come back with a positive adenomyosis diagnosis, which can be missed unless they sample the entire endometrium. The pathology did say the the myometrium was slightly trabeculated and from what I have read this can be indication of adeno. Results showed benign endometrial polyps (a relief they were benign because unlike fibroids they can be malignant)  and a proliferative endometrium. Although I do not fully understand the proliferative endometrium results on the pathology as it is a phase in the menstrual cycle.  A normal endometrium in the proliferative stage is 2-3mm thick, mine was 5mm thick.  My uterus was indeed enlarged, normal weight is about 60 grams and mine was 148, with enlarged dimensions as well.  A lot of doctors recommend hysterectomy when the uterus is larger than 100 grams in weight, which I am not sure how this would be accurately measured prior to hysterectomy.

Even without a clear adenomyosis diagnosis, I do not regret the hysterectomy.  Polyps were reason enough to have it done as they reoccur/multiply and come along with a chance for cancer. Pain was located there, along with crazy heavy, bleeding cramping and clots. I was done having children and felt no need to try and keep it.

Info on Endometrial Polys http://www.cmdrc.com/menstrual-disorders-fibroids/endometrial-polyps/

The endometriosis was confirmed by pathology in all samples taken.  I can't tell you how gratifying this was, to finally have a reason for the my pain. I want to take the results and slap the doctors who didn't believe my pain with them!!!!  If you have endo or other pelvic issues you know how frustrating it is to find a doctor to take you seriously and not just think you are a drug seeking crazy person!

Endo was in the left peritoneum, over the left ureter, plaque and infiltrating with some adhesions to the ureter. This tracked down into the left pelvic cul de sac at the lateral aspect of the rectum. Right side peritoneum, right pelvic cul de sac endometriosis, right mesosalpinx endometriosis and an infiltrative mass in the perirectal fat on the right side which was confirmed to contain endo.

The Mesosalpinx endo I believe is why I felt like I always had right ovary pain, especially during my period. I always assumed this was just due to the PCOS. I had countless docs note my right ovary tenderness in my chart, always saying we will just keep an eye on it.

It will be interesting to see how my ovaries do after all of this and if they can give me a few years without HRT.

The endo that tracked to my rectum and the perirectal mass explained my digestive symptoms, and pain during defecation especially right before my period. 

The ureter endo explains why I always thought I was getting a bladder infection right before my period.  Often with blood in my urine. Doctors would find no bacteria, see blood and treat me for a UTI regardless.  I can't say how many years I had this happen before I figured out for myself that the symptoms like a UTI went along with my menstrual cycle and that is was not an infection needing treated.  But since no doc wanted to listen that it was menstrual related, I chalked it up to "periods" and just knew to have uristat on hand for the pain.

Oddly the surgeon didn't note the ovarian cysts or ovarian drilling in his reports, but we clearly saw him do it on the video of the surgery.

TLH Surgery with Endo Excision, Surgery Day and 1 DPO

I am now 4 days post op.  I want to get a good post about surgery while its still fresh in my mind but I am also pretty tired and sore.

10:15 was check in time for the hospital.  I had been up early, because who can sleep in on the day of surgery... 2nd enema was done.  Nerves were crazy town.

When we got to the hospital, it was crazy town, there was a fire about 2 miles away, evacuations were ordered and houses were already burned, this included some doctors houses.  Thankfully my surgeon was not affected and we were still a go.

In pre-op they got me into a gown, pregnancy test done and IV in. Everyone was sweet and helpful. Dr. Arrington came in and gave us a run down of how things would go. And time expected.

Not too long after I handed over my glasses to my husband, and said goodbye as they wheeled me away.  I was scared.  Into the O.R. I went.  Although they gave me something to relax, when they tried to put the mask on me I had a bit of a panic and felt as thought I was suffocating.  They gently held the mask just off my face until I dozed off, not rushing me or making me feel stupid.

Coming to in the Recovery Area. My first thoughts upon waking up were thank God I am alive. Then the pain, bladder, pelvic, everything. Burning, stinging, aching.  They had trouble getting my pain under control so I spend a bit longer in recovery than some. My husband was freaking out a bit when I didn't come out when I was supposed to.  They did thankfully remove the catheter right away. I hate cath pain.....

Finally I was wheeled to my recovery room, I don't remember much of this.  Since my pain had been pretty bad I had the option to stay the night at the hospital, which I took.  I had quite a bit of nauseousness to work through.  Hubby showed my photos from the surgery, including endo that he had found and a para rectal mass.  I was relieved...this definitely wasn't all in my head. We won't know for sure about the adenomyosis until pathology comes back. I was also really struggling with oxygen, since I have sleep apnea and pain meds make it worse.  I had to have oxygen and my cpap at the same time.

About 8 pm I was finally able to keep some food down and take some better pain pills.  I was also able to get up and urinate on my own.  Secretly this was a big fear, that I would have to have a catheter put back in. I had a little bleeding but nothing scary. My husband was so sweet, he refused to leave me for the night until I was sound asleep.  That night went pretty well, the nurses were great about keeping things low key for nightly checks.

The next morning I had my husband bring me a bagel sandwich and chai tea, I was definitely in better spirits.  Dr. Arrington came in and went over everything again with me now that I was awake and would remember.  He said that my ovaries were covered in cysts.  This is very typical for PCOS, but doctors had never noticed and/or said anything about them at any previous appointments. He drained all the cysts and did ovarian drilling hoping to give my ovaries a jump start.  He felt the surgery went well and that he had removed all the endo.  It was over both ureters, sprinkled on my left side CDS (cul de sac) as well as having the right side para rectal mass (possible endometrioma) and some on the right side.

I was discharged around lunchtime.  Since I wasn't up to road tripping home yet, we headed over to the guest house where we were staying. They tried to take me over in a wheel chair, but the bumps were too bad so I ended up just walking.  It felt good to rest without interruption.

My husband was so awesome and supportive through this whole process.  I love him so much!

Here are some of the photos, we got a video of the whole surgery too.

Right Endo

 

Left Endo over Ureter

Uterus

Left Cul de sac endo

Right Para Rectal Mass

Endo

My Pre-Op Appointment

My mom drove me down to Ogden the day before pre-op. We were able to get a room at the Annie Taylor Dee Guest House on the hospitals campus. It is amazing, and I will be staying here until I am cleared to leave after surgery. I was thankful for my mom's company, it helped keep my mind off of my nerves. When we arrived at Dr. Arringtons office, all the staff was sweet and helpful. We caught a glimpse of Dr. Arrington in the hallway being goofy. That right there gave me a sigh of relief. He was not a cranky unfriendly guy. While I realize that not all great surgeons have great bedside manner I was relieved he did. I was a huge bundle of nerves. His nurse brought me back and went through all of my history making sure they had not missed anything. She asked me if I had right shoulder pain, uhh yeah, but what does that have to do with anything? Apparently it can go along with Endometriosis on the diaphragm. I have had shoulder pain off and on for years with no explanation. After we were done talking to the nurse, Dr. Arrington came in to visit for a bit before I got ready for a pelvic exam. The pelvic exam was painful, and most of the pain was contained to the uterus. He felt that if I had Endo it wasn't severe. I got changed and we went into his office to go over surgery details. I feel confident he will do his best to make sure there is no Endo and that the Hysterectomy goes well. Because of my previous chest pain he put in an order for a pre-op ekg.   They will have photos and videos available for us after surgery which is cool.
The next day I got registered with the hospital and got my EKG done. Everyone at the hospital has been super nice and helpful. My mom flew out and I am just enjoying peace and quiet this weekend.
My husband will fly in Monday morning and then yikes Surgery Tuesday!