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.

Consult with Dr. Duke

I was super nervous about this consult.  Of course the 3 hour drive gave me plenty of time to think and worry as well.  What if my pain was still in my head?  I mean I had now had 3 surgeries with specialists, what if there is nothing more that can be done and I have to just suck it up and live this way? 

I ended up arriving almost an hour early as I had put my appt. in google calendar wrong. But the receptionist was super sweet and said they could probably get me in early.  She was wonderful and kind and I felt a bit more relaxed. 

The nurse brought me back after a few minutes of waiting and we went through my complicated history.  I kept apologizing for it being so complicated.  She reassured me that I didn't need to worry.  We discussed my concern for the endo of the appendix and she said don't worry he will fix you right up.  She also had endo so she totally understood! 

Dr. Duke came in and was also very kind. We clarified some things in my history and he was unhappy that the general surgeon I saw locally did not remove the appendix.  He said lets get surgery on the books but I also believe you also have some other pain generators that need addressed.  Interstitial Cystitis and Pelvic Floor Dysfunction. Dr. Dulemba had mentioned IC, and said I needed to find a uro/gyn after I had healed from surgery to confirm.  Of course doctors here didn't want to refer me.  So Dr. Duke pressed and examined and my bladder was painful, way more than I thought it would be, then he cathed me and numbed the bladder.....less pain.  He also checked for pelvic floor dysfunction, which I didn't ever really believe was an issue. But let me tell you when he pressed on the obturator muscles I nearly jumped off the tables and they went into serious spasms.  We also discussed the masses in the inguinal canals, in which my pain flares at the same time the appendix pain does.  He said he would have a fellowship trained general surgeon on standby for surgery and we would remove the endo from them as well.

So after I was dressed again we made a plan.  I would increase my Premarin, start taking valium vaginally for the PFD until I was healed from surgery then I would start pelvic floor physical therapy. As soon as surgery was approved through insurance I would have my appendix removed, inguinal canals addressed, he would hydro-distend my bladder and look with a scope to verify IC and do a treatment.  Even though I was just diagnosed with 2 other issues, I felt hope, I wasn't crazy.  It has been a long journey but I have not given up.

One of the questions he asked me after the pelvic exam took me a bit by surprise.  He asked if I had been raped or sexually assaulted before.  He was very kind and non judgmental in this question, it was true concern.  I paused for what seemed like an eternity, wanting to answer no, but knowing that I had to be honest. I said yes, yes I had been raped about 20 years ago. He went on to explain that women who have been raped or sexually assaulted have almost a 3 times great occurrence of pelvic floor dysfunction.  I never would have thought that something that happened that long ago would be still having an impact on me today.  It was an emotional appointment for me, but things made so much more sense now. It seems that women don't get treated for PFD after rape or assault for many reasons, shame, guilt or being told by doctors that the pain they experience during sex is not real its just PTSD from the experience, when in fact it is actually the muscles, a real and treatable pain generator.

Surgery is booked for August 3rd and is coming up fast. Of course I am having a horrible flare and it can't get here soon enough.  I feel I am in very good hands and am so happy that I only have to travel 3 hours away.  My husband will accompany me for this surgery. And best thing is NO BOWEL PREP!  He is one who has realized that there may actually be more harm than good by doing bowel preps before surgery. 

So if you are still having pain, despite seeing a specialist keep fighting, there are reasons for your pain you just need to find and treat them.  I am very hopeful that this is going to be my last surgery for a while!

All the insanity, Lack of Updates!

Well life got away from me and blogging just didn't happen. So here is a brief recap since my last post.

Surgery #2 with Dr. Dulemba also known as a second look surgery to break up newly formed adhesions was a success. Another wonderful experience at the hospital and with the addition of the scopolamine patch before surgery there was no vomiting. It was over an hour long as things were already stuck back together again.  By now it was obvious menopause had hit and I was started on .625 mg of Premarin.  I did not feel as well.  When I got home it took about 2 weeks of horrible hot flashes, body aches and just feeling horrible before my body adjusted to the Premarin.  It also made me super nauseated. I even ended up in the ER for fluids because of it. So I tried the patch, which the insurance will only cover the generic, which doesn't stick as well and so after almost 2 months of trying that  I gave up and went back to the Premarin, this time with increased dose and the nauseated feeling was much less. One of the biggest issues of the patches is no hot baths, and frankly I couldn't even shower without it coming off.  Such a pain!  So now I was on 1.25 mg and finally feeling more human. I had no idea how different surgical menopause was than natural menopause and it has been trying to say the least.

Then I started having episodes that felt like appendicitis. Was in the ER twice for it. In April they admitted me to the hospital sure it was appendicitis. Scans of course showed nothing but the pain, nausea and vomiting didn't subside.  After 3 days in the hospital the general surgeon agreed to open me up. I wanted her to remove my appendix, I was convinced it was my appendix and Dr. Dulemba even felt it was the culprit and regretted not removing it.  When she got in there she released a couple of adhesions not even on the same side as the pain and burned (WTF??) a spot she felt might be endo and then left my appendix stating it looked fine to her.   I ended up with a blood clot from all the IV pain meds in my arm and that vein is now ruined.  Things seemed to settle for a bit, but then it started all over again. The general surgeon said you are still healing its healing pain call me in October if you are still in pain.....I wanted them to at least do a colonoscopy.  So for a while I just continued the pain cycle, every couple of weeks I would have 3-5 days of appendicitis like flares.

This eventually got old, this was not healing pain or additional adhesion pain, in addition to this my burning groin pain was happening at the same time.  So I reached out to another Endometriosis specialist, one who was added to the list on Nancy's Nook after my surgery with Dr. Dulemba otherwise I may have gone to him to begin with. Dr. Adam Duke was only 3 hours away in Post Falls Idaho.

So I called and made an appt. for the end of June.  I will write a separate post about my initial consult. 

Also in March my 15 yr old daughter had surgery with Dr. Dulemba as well, her endo was severe, he said it was one of the worst cases he has seen for somebody her age, she also has polycystic ovaries and adenomyosis.  Such a horrible diagnosis for such a young girl. She had excision, which ended up being almost total peritoneal excision, a presacral neurectomy for the adenomyosis and ovarian drilling.  Her endo receptors were equal estrogen and progesterone.  Her second look surgery her ovary was stuck to the side wall.  She is feeling better, but with not a lot of option besides hysterectomy for adenomyosis she is stuck living with some pain.  She of course hates the pain and heavy bleeding and wishes she could just have a hysterectomy.  Its a tough decision for sure.

Surgery #1 with Dr. Dulemba, oopherectomy, adhesion release and endo excision.

My first surgery with Dr. Dulemba was 2/23/18 at Medical City in Denton TX.

I had to be at the hospital to check in for surgery at 6 am.  It was again, pouring rain and an intense lighting storm. We thought we were going to get struck on the way from the car to the hospital.

Check in went fast and they brought me back to get ready for surgery.  I was definitely a bundle of nerves.  Got into my snazzy gown and the wonderful OR prep nurse got the IV in the first try (they have issues with my veins usually).  I got scrubbed, prepped and shaved. The anesthesiology team came in and we discussed my nausea after surgery. They would make sure I had zofran after surgery.  We went over everything, signed paperwork etc. They were also very nice. Several others were in and out with paperwork, checking my vitals, checking my blood sugar. Dr. Dulemba came in and talked with us.  He was very reassuring.  They put the happy juice in my IV and I don't remember anything else until I woke up.

The first thing I remember feeling is the catheter, I really don't like them. And being wheeled out of recover into my room, I wasn't really awake yet.

Then I feebly yelled, I am going to be sick. Thankfully they got me a container in time, but that is not fun right after surgery. They got me zofran.  I had some pain, it wasn't horrible though.  I was really out of it and once I stopped puking and pushed my morphine button a few times I was out.  I remember briefly talking to my mom, who said my surgery was about 3 hours and that she would come back later and let me rest.  Once I had a good sleep I woke up, feeling quite amazing.  I texted my mom saying I am feeling perky.  I am sure the morphine pump had something to do with that ;)  But really I felt great. 

Dr. Dulemba has a very specific routine for his patients. Everyone stays the night. Pain control is big. Catheter stays in until morning.  Rest is important.  I also had the on-que pain pump which is crazy but amazing.  My room was amazing, single room, very very quiet and spacious.  My nurses were also amazing. They checked me at midnight and 4 am. And were quick to respond if I used the call button.  I did have an issue with the catheter not wanting to drain, but they moved the hose around and it started draining again.

Oh, you probably want to know what he found.  Severe adhesions, when he first went in he couldn't even identify any anatomy they were so bad.  The mass in question that was in debate about what it was???  It was a mass of endo around my round ligament where it goes into the inguinal canal. There was clearly no hernia. My round ligaments also had adhesions and were stuck to the ovaries and bowels which were also stuck to my vaginal cuff. There was a spot on my sigmoid colon and the right pelvic wall that he also removed that looked like endo. Ovaries were both removed, there was no saving them they had been completely taken over by adhesions.  Dr. Dulemba was horrified at what all was going on and that nobody had believed how much pain I had to be in with all that going on.

Yes! I felt vindicated, yet again. I was not crazy, it was not all in my head!

The next morning they took me off the morphine pump and removed the catheter. I got to eat actual food. I must say the hospitals food could use some improvement, but it wasn't horrible.  I was able to get up and go to the bathroom and do some walking. Dr. Dulemba came in early afternoon to visit with me and discharge me.  He is an amazing surgeon.  I was definitely feeling so much better already!  He felt that Dr. Arrington had done a great job with my first surgery and that the endo removed was new not missed.

The on-que pain pump stayed in until Sunday, surgery was Friday.  Then I had to removed the tubing through the small hole just above my pubic bone. That was a weird experience, but I managed to do it without freaking out too bad ;) 

Sunday evening I was feeling good enough to have lunch with my cousin Pete and his wife Nikki who live nearby. 

My followup was on Tuesday morning and my second look surgery was scheduled for Wednesday.  I will write another post about that soon.

Travel Adventures; The loss of my ovaries; Pre-Op

February 21st and 22nd 2018

My mom and I set out late in the evening of the 21st for TX. There are no nice flights out of Montana and it seemed it was butt crack of dawn or middle of the night.  We chose late which later we learned would be a mistake.

When we arrived at midnight at DFW in TX, it was threatening to be freezing rain or snow and people were freaking out.  By the time we got our bags and took the bus to the rental car station we learned that all the budget employees went home in fear of the storm.  But that we could go wait in the very long Avis line, who had 1 customer service rep.....It was late, we were exhausted and hungry.  After nearly 2 hours of waiting in line we were finally given a car. 

In the dark and pouring rain that was on the verge of freezing we made our way to the hotel. We had trouble figuring out the car headlights, the GPS decided to have us avoid tolls and it was an utter disaster. But we finally got there.  Since I would be having to do liquid diet and bowel prep that day we decided to run for a bite to eat. But the only thing we could find nearby open at 3 am was a Jack in the Box in a sketch location....We finally got to bed about 4 am and had to be up for a 9 am Pre-Op Appointment.  We were exhausted.

The next morning it is pouring rain and we couldn't figure out how to get to the front entrance of the office building so we climbed the steep back steps up the hillside. So we get to the pre-op appointment and find I was supposed to have had a full bladder for u/s.  Nobody told me and but the very nice radiologist just worked with it.  On the U/S she clearly noted that both sides of my pelvis were not moving, along with the center as well. Looked like things were all glued together, she showed me on u/s. She would push on my belly while looking with the u/s wand and it was quite visible.  My left ovary was nearly impossible to find but she finally found it. What a relief I thought to myself, I at least had some adhesions I thought, it wouldn't be a wasted trip if nothing else was wrong.  At the same time I wondered why no other radiologists or doctors had thought to check for adhesions which were clearly visible on U/S.

Then it was into Dr. Dulemba's office where we met him to go over everything.  Our visit lasted almost 4 hours. We went over all the details of my issues, treatment plan and everything endo related.  It was so reassuring to know I was in good hands.  My mom was re assured as well.  Dr. Dulemba is very personable, has a sense of humor with some sarcasm but very very knowledgeable about endometriosis and he isn't afraid to go against other doctors who's interest lies in drug companies or failing treatments.

During the treatment planning he pulled out the u/s report to go over it. We had already discussed removing ovaries as they seemed to be a source of pain for me, I did not take this decision lightly and we talked about it a lot.  I was secretly hoping that he would find another cause for the pain for my ovaries and that I could keep them. Because facing surgical menopause with PCOS and Endometriosis was scary stuff.  He said, from what we can see on the ultrasound you egg supply is gone and your ovaries are atrophying, you are already headed into or are in menopause.  I wanted to burst out into tears, seriously.  I couldn't believe it.  Yes I was considering having them removed, but finding out they were dying and dead was somehow completely horrifying.  The realization of menopause seemed horrifying at the age of 38. 

Why???? Why were they dead??? I had been having some hotflashes and mood swings the past few months but nothing I thought was menopause. Although my mom looked at me and said "this makes perfect sense for how you have been feeling." Dr. Dulemba's personal thought is that when you take the tubes and leave the ovaries (my hysterectomy and tube removal was about 6 months ago) they are part of the ovary and share a blood supply. He feels that taking just the tubes can contribute to the ovarian failure when that blood supply is cut off.  Like I said, he thinks outside the box. I feel like surgeons always encourage taking the tubes as that is where they believe much of ovarian cancer begins. But I was never told there was a risk to it during my first surgery. Here is an article on that https://academic.oup.com/humrep/article/18/10/2175/622722.  So it was decided the ovaries would be removed.

I got my prescription for my pain meds and we headed to the hospital to get all registered.  This is where we made a big mistake. We thought it was just going to be a little blood work and then we would go eat.  Nope lots of paperwork, bloodwork, and surgical counseling.  By the time I got done with it all both Mom and I were exhausted, hungry and emotional. Fluctuating between tears and hanger (hungry anger). It didn't help it was still pouring rain and cold! We had skipped breakfast to catch a little more sleep not realizing how long our day was going to be.  Well I was on liquid diet, but my support system was hungry.  The hospital staff was amazing and kind though and we appreciated their smiling faces. Ryann with the surgical counseling was super sweet and helpful.

So we ran to walmart to get my prescription filled and got some food for Mom and my other bowel prep medicine. Then went back to the hotel and crashed! Awake long enough to do the bowel prep, YUCK, and have a video chat with my sweet kids and husband. I had to report to the hospital for surgery at 6 am.  Thankfully the hotel was quiet and the beds were super soft and comfy and despite nerves for surgery I actually slept. 

What causes pain and stumps doctors? Endometriosis.

You all tired of my saga yet?  I know some family and friends are, but I am going to share anyhow.

I am backtracking with these posts a bit. This is from the Middle of February.

After nobody could decide what my inguinal growth was or wasn't. I scheduled a telephone consult with Dr. Dulemba.  Because what causes pain and stumps doctors? Endometriosis. 

The consult went great. He always know just what to say and what questions to ask.  I had also had some bowel issues again and other thing like my painful ovaries that I was mostly set to ignore but he included them in the mix. 

We mulled over whether my groin pain could be a hernia, or endo or both. He concluded it would be best to take care of the gyn problems since we knew they existed instead of jumping into hernia surgery that may not even be a hernia.  He felt there was a likely chance that I also had adhesions. That 3-6 post op months is when they tend to really start causing drama.  We talked about the possibility of removing my ovaries, since I felt that they were a huge source of pain still.

I said to him "I am beginning to feel like this is all in my head again."  He reassured me it was not in my head and that he would do what he could to help figure out what the pain exactly was.

So the next morning I emailed his scheduler. He had an opening for surgery the next week.  I was shocked as I was sure I would have to wait longer, and if I didn't take the appointment I would have to wait another month for the next opening.  After some crazy logistical calculations and discussions we decided to take that surgery date.  I have to say that my husband is the most wonderful person!  He never questioned it once, or was upset to have to have kids for 10 days or attempt to work from home.  He just wanted me to feel better. 

My mom was able to take the time to go down and help me through surgery. I am extremely grateful for her help.

Now this is not like planning a normal surgery, in your hometown, where you get to come home after your surgery to your own house. I would be flying from MT to TX and back again 9 days later, after 2 surgeries.  SCARY STUFF!

I was able to get a medical rate through Delta for the airfare which helped and the hotel had a hospital discount.  This was still not going to be cheap, but at least the surgeon took my insurance.

Over the week waiting for surgery, I felt immense guilt. Guilt that after one surgery that was supposed to fix me up, I was still in pain, still unable to be a good mom and wife, and costing our family more money. I was terrified he wouldn't find anything wrong. Yep, after all those years of being told it was all in my head and to lose weight, it still stuck with me. Even after an official diagnosis. I was terrified of being a hypochondriac.  Or that my pain wasn't really that bad.

This says a lot about what its like. https://www.buzzfeed.com/laraparker/what-its-like-to-get-diagnosed-with-a-chronic-illness?

It just keeps getting weirder, the "is it a hernia" saga

Its been a bit since my last post, I have been processing everything which has taken a totally different direction than hernia.

So the radiologist finally got the MRI results read. No visible hernia, or hip issues, or anything else for that matter, it gave me a clean bill of heath. ARE YOU F"ING KIDDING ME!!!!

So this is when I decided, hmmm what is the one thing that stumps doctors, doesn't show up on scans, and has cause pain in my life.  ENDOMETRIOSIS

The radiologist was of the opinion she would be able to see endo on the MRI, well from my experience and many other women that isn't really reliable.  So I went back to my calendar of symptoms and sure enough it is certainly cyclic.  And by the calendar it is progressively getting worse. 

At this point my wonderful NP says she has no idea what to do.  But I did. It was time to call in a specialist.  So I made an appt. for a phone consult with Dr. Dulemba down in TX.

After speaking with him, he feels we need to address the potential GYN side of things before just pursuing a hernia that may or may not exist.  He felt that there could be adhesions, agreed that maybe my ovaries needed to go and considered the possibility of inguinal endo.  I told him I felt like a crazy person about all this. He reassured me that my pain was real and he would see what he could do to help.

So the next day I emailed his scheduler, I was expecting months out. But he had an opening the next week, which happens to be this week as I write this.  So began the crazy logistics of flying to TX from MT. Thankfully my mom can fly down with me and my husband will be staying with the kids. I will have surgery Friday the 23rd and then a 2nd look surgery the next Wednesday to check for adhesions forming and address them before they get worse. 

I am so nervous.  Nervous to yet again meet another new doc, although I have had 2 phone consults with him and really like him.  Nervous about what he will find (and yes in the back of my mind I fear he will open me up and find absolutely nothing) and what will be done. 

As for the ovaries if you remember they are polycystic, and while removing them doesn't cure PCOS it can help with the pain. Buuuuut there is a trade off. Surgical Menopause.  I have been doing a lot of research on it and frankly it scares the hell out of me.  Some women do ok, some do not. HRT of some flavor will be required, but PCOS since it is endocrine, adds a whole other aspect of treatment and often makes it hard to find a good dose of HRT.  So then I doubt myself, maybe I should just live with the pain. But that is silly too. I am certain my right ovary will go for sure, it has always caused me the most pain. Then if I leave the left will I just end up having surgery on it later, one more surgery.....Part of me hopes he will get in there and it will be other causes for the pain in the ovary area, not the ovaries themselves and I will get to keep them.  Have I mentioned I hate these kind of decisions?

So my mom and I fly out tomorrow (Wed). My pre-op and u/s are Thursday and first surgery Friday.  I get to spend all Thursday doing liquid diet and bowel prep. Fun times!

Last night it was confirmed that I really need to get this taken care of.  While making dinner I started to get horrible burning/shooting/tearing LRQ pain. By bedtime it included my right midsection, under my right ribcage and my right should. The pain was so horrific I almost considered going to the ER.  Then I remembered they have me labeled as a crazy pain med seeker and won't do anything for me, so I toughed it out. I also had LLQ pain as well but it was nothing like the right side. I thought I was going to die. And it totally felt endo related to me, but then I have never had adhesions so I don't know what that is like.  But people describe it as burning/tearing so it sounds about right.

I am thankful for the support of my family during all this craziness. My mom for dropping everything and making the trip with me and my husband for taking care of everything at home and supporting every medical decision I make without batting an eye.