Surgery Details and Update with Dr. Duke

Surgery was 8/2/18.  Hubby and I drove over the night before surgery. No bowel prep made it nice!

We arrived at the hospital at 7 am.  Paperwork filled out. Then they brought me back to prep me for surgery.  Vein finding did not go well, 2 different nurses tried in my hands....nope. So they called in for reinforcements and did it in the underneath side of my arm, which is supposed to be more painful but was not at all for me.

I was so thankful for my husbands support.  I was certainly a ball of nerves.

Dr. Duke came in and visited and so did the Anesthesiologist, who was very nice as well.  Everyone at the hospital seemed nice.

They gave me the versed and wheeled me back, I remember getting scooted over on the table and them giving me the mask to hold and that was it.

Waking up was a different story, pain, horrific pain. I remember the recovery nurse saying no I can't give you more pain medicine you will fall asleep.

This is where things went down hill for my experience.  I felt very rushed by the recovery room nurse, she would say I don't want to rush you and then immediately be like should be get you dressed and up. Are you fucking kidding????  Finally I was like fine and she helped me sit up and get into my dress (because pants are a no go after surgery for me).  She said we need to get you to the next recovery section. Surgery was supposed to be outpatient, unless I wasn't doing well then I could stay or so I though.  So I get in the wheelchair and she wheels me into where my husband is waiting next to this recliner thing.  I had to get up out of the wheelchair, this was excruciating, and lift myself into this recliner which was too tall ( imagine a short person trying to sit down on an oversized recliner when every core muscle is screaming in pain), I had to use too many abdominal muscles to scoot back into it and then it only reclined so far. My pain was a 10 for sure, I was dying and I have a damn high pain tolerance. They gave me a percocet. Yeah that wasn't cutting it, they kept asking me about discharge. I was like I can't even get my pain under control.   So they said, maybe if you pee it will help. So I went pee, yeah that didn't help and while in the bathroom I missed Dr. Duke who stopped by before heading to the clinic.  The nurse says to me we don't want to rush you, but we have done all we can for you here.  So I asked about a bed, because there was no way I could get back in the chair, they said well we can, but you are out of time here, there is no medical reason for you to stay and your insurance might not pay for it.  So I sat, in the wheelchair, in pain...debating. The percocet got it down to maybe a 5 when I wasn't moving a muscle and I got some broth and jello down.  They kept saying we are not rushing you but.....I had to make a decision, fight for a bed or go back to the hotel for the night.  Out of sheer frustration I decided to hell with it and we got discharged.  Talk about pain.  My pain was nowhere under control, but what option did I have.  The next morning as we were leaving town, as I was just desperate to get home by that point, Dr. Duke calls, he had planned on admitting me for the night due to my endo on the bowel that was addressed and my pain.... apparently nobody got that memo.  My husband did record what Dr. Duke told him went on during surgery thankfully so I at least had that.

It took me several days to even be close to be able to say pain was under control.  I don't think it benefits women to push them out of the hospital so fast after such a major surgery.  So what did I have done?  Appendectomy, hydrodistension and bladder scope, work on the inguinal canals to check for endo in the inguinal canals, endo on my bladder, endo on my small bowel, endo over my inguinal canal, endo on my left pelvic sidewall, obliterated pouch of douglas, adhesions, endo wrapped around my right ureter, I am probably missing something.  No full bowel resection was needed but my bowel had quite a bit of endo and is stitched up.  Oh and IC was confirmed.  No wonder I hurt like hell!!!! How on gods green earth does this extensive of surgery become a day thing and get you evicted before pain is under control.  Now I do not believe that this made Dr. Duke happy and at Post Op I will have some suggestions for him. Because despite being a great surgeon if women feel like they have to do more battle for pain management after surgery they might not choose him.  I know after my hysterectomy with Dr. Arrington my pain was too bad and they kept me overnight even though it was supposed to be outpatient surgery.  And my pain was hard to get under control then. I have to say Dr. Dulemba does the best job of pain control after surgery, he has a set routine for every woman and that is how it goes, no nurse makes the decision.

I am now 5 days post op and feeling more human, still on pain meds and exhaustion sets in easily.  My pain that was in the appendix area and prompted surgery is gone.  I can't wait to see what pathology has to say about that.

I do not regret this surgery one bit, I do however wish doctors took after surgery care just as seriously.  I know a big portion is insurance, I get that.  But if I am doubled over in pain ( I couldn't stand up straight until 3 days after surgery) that is medical reason in my opinion to be held in the hospital.  I never expected my pain to get to a 0 before being discharged, I realize that is unrealistic, but we were nowhere close to what would have been acceptable and I felt judged or made to feel the pain wasn't that bad when I tried to say otherwise.

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!

My History ~ PCOS, Adenomyosis and Endometriosis

This will be long, but for those suffering like I did you will understand.

I have had PCOS that I am aware of for about 15 years, diagnosed about 10 years ago. My mom and 2 sister also have it. How about those statistics for you! Getting pregnant wasn't easy, pregnancies were complicated but I do have 3 beautiful children.  I suffer from ovarian cysts, hair loss, facial hair growth, skin tags, insulin resistance,and weight gain to name a few.  I have spent years researching and trying to learn more about this medical condition.  I have always had horrible periods which I chalked up to normal...I mean isn't that what we are all told?  I would bleed profusely with large clots and horrible cramping for 7-10 days and cycles would be around 40 days, sometimes skipping a cycle or two.  In my earlier years I was put on birth control to "help", but I struggled with ones that didn't cause breakthrough bleeding or other horrid side affects.

After I was finished having children, my husband had a vasectomy and I chose to get rid of the birth control.  I did not want something in my system that was just masking my symptoms and giving me other side affects.  This decision wasn't easy though because my PCOS really started to kick my butt, gaining a ton of weight, and become even more insulin resistant. I tried to eat healthy and exercise, but didn't see the scale move much.  I knew I was healthier but the weight just wouldn't budge, I carried it right around my mid section, often looking pregnant.

During the summer of 2016 I joined Beachbody and started drinking shakeology and really started watching my portions.  I was able to lose about 15 pounds after a few months.  I divorced Mtn. Dew, still haven't touched it since July 11 2016, and don't drink much soda at all, just water.  Things were going better, so well in fact I decided to start coaching with Beachbody. I still had to work super hard to even see a little change but at least I felt I was holding ground.  January rolled around and I had gained some weight back, I wasn't perfect over the holidays so I threw myself into eating right and working out harder.  By February I had gained almost all of the weight I had previously lost back, I looked pregnant.  I was devastated, and couldn't figure out what was wrong. I couldn't find anyone to join my fitness group and programs, because who would want to do it if I was throwing myself into it and not seeing any progress.  I will say I do love beachbody and shakeology and haven't given up coaching yet, but I have to take care of me right now.

My periods started getting even more painful, and crampy and clotty.  I was starting to have pelvic pain when I wasn't on my period.  Exercising was excruciatingly painful.  I pretty much fell off the wagon at this point, frustrated and confused.  In April about a week before my period I started feeling like I was getting a UTI.  I normally have this feeling 1-2 days before my period and have for many years. I would go to the doc, they would test, say there was no infection but prescribe antibiotics anyhow. But this was the worst and earliest it had been so I went to the doc.  Of course there was no infection so she sent me me for an ultrasound.  They found a cyst on my right ovary, so they determined it was the cause of my bladder pain.  Since then I have had it off and on, for much longer time periods and at a 2nd u/s they determined the cyst was gone.

So back and forth with the doctor and a referral to a GYN, who was certainly not an advocate for my health.  I did however learn that my first u/s had shown an enlarged uterus and thickened endometrial lining, something the doctor never shared with me.  The GYN did an in office u/s and found my uterus was the size of somebody who is 12 weeks pregnant and the lining was thickened to 20 mm and globular in appearance.  She mentioned Adenomyosis or Cancer.  She took 3 uterine biopsies right there in the office that day, and sent me home to wait.  After waiting almost 10 days the results were normal, she wanted me to take 10 mg of progesterone a day to try and thin the lining, she originally wanted me on birth control or an iud and I refused both.  She would not be addressing any other pain or concerns at that time, and by this time it was July.  I was so confused!

Now I have been down this diagnosis road before with the PCOS and knew that I needed to start researching on my own.  I first joined Adenomyosis Support on facebook and the support and information was just what I needed.  I also joined the Nancy's Nook endometriosis discussion facebook group.   I decided to switch GYN's and demand a hysterectomy (only cure for adenomyosis) which of course anybody with recommendations were weeks out, my get to know you appt. would be August 23rd.  During the 6-7 weeks of waiting my symptoms increased exponentially even though the Provera was supposed to help, I did skip my cycle the end of July but things just keep getting worse. My pain was daily and debilitating.

The beginning of August I felt like I was getting the wind knocked out of me and had chest pain. I went to the ER thinking I was having a heart attack. But they couldn't find anything wrong with me except mildly elevated pancreas levels. I was sent home with just a few pain meds feeling like a crazy person.  I personally think now my pain was giving me panic attacks.  But I also learned endometriosis can be found in the chest cavity.

At this point I knew that I needed some serious intervention, I had been reading about the Nook Docs who are specialists in endometriosis excision surgery. Adenomyosis is kind of like endometriosis only located on the inside walls of the uterus instead of outside. Many women found that along with their Adenomyosis they also had endometriosis.  There are something like 100 surgeons on this list world wide.  And most of them are out of network for insurance.  But I was done messing around with docs just wanting to mask my symptoms or make me think I was a crazy person. I called nearly every Specialist on the west coast.  I was able to get an appt. with one in Portland or an appt. with one in Utah. After talking with their offices I decided that Utah was my best bet, as the surgeon took the time to respond to me personally.

My husband agreed that we needed to find the best surgeon to fix me up regardless of cost.  And we wanted somebody to do the hysterectomy that knew what to look for and how to excise it properly if endometriosis was indeed found.  I also found out that endometriosis runs in my family.  So I put down a down payment and scheduled a surgery date of Sept. 5th.  EndoWest in Ogden UT with Dr. Arrington.  So far they have been great and I finally don't feel like a crazy person.  My pre-op consult is the 30th.  I will be driving 7 hours to get there. Thankfully the hospital has a guest house that is very inexpensive to stay at. My husband will fly down right before surgery to be with me and drive me home.

This is my journey, and I hope an inspiration for you to be strong and educated about pelvic pain and take control of your own treatment.

Christine