Excision Surgery Part 2: I Know My Body

We all say it, right? I know my body. I know when something is wrong. I know that something is suspiciously right. When you are sick 99% of the time, you know how your body feels with every sway and every stumble, and every new stimulus. You know all the different kinds of pain: from dull aches to shooting pain; from a 6 to a 9 to a ‘hmm… Im not sure if that’s pain or discomfort”. You know!

On day 10 post surgery something was happening. While I knew that tremendous amount of work had been done to remove my rectosigmoid colon from my abdomen, and subsequently my left ovary from the colon, I still understood what healing felt like. I also knew what an accidental tear or an over-exertion would feel like. It feels like a spike in pain that – with rest and medication – would eventually start to get better over time. This is exactly the opposite of what I started to feel. If you can imagine, the top of your left pelvic bone… go in about an inch and a half, and then hook up a car battery charger right there and press on the gas. Yeah that’s what I was feeling. It was right where an incision had been made, with a dull ache of 6 all day, and shooting voltage at 8 or 9 every 15min or so. First step was to run this by the surgeon who recommended I go get a urine culture done to rule out infection. Done. But the pain persisted with no medications bringing relief. By this point, say day 14, I wasnt even concentrating on the surgical healing, I was 100% focused on this ‘problem’. When I reached out to others on social media I was relieved to hear that it was normal, but that nagging voice inside of me kept telling me this surely wasnt normal.

Finally, I broke and went to emerg. I was given the most high level care from the minute I walked in. OK maybe not the minute I walked in. Maybe the minute the doctor saw me and understood how much pain I was in. But it wasnt the doctor I remember – though he was nice too – but the nurse. She was so caring and understanding of my gynecological issues. She gave me a hot blanket to put around my back, and one to put right on the spot that hurt. And then a shot of hydromorphone to calm be down. I was in bliss for about 20min until the hydromorphone spiked my pain much like I experience with morphine (I believe it’s hyperalgia they call it). They didn’t restrict me from more hydromorphone but the next dose – should I need it – was prepped for half the amount.

Long story short, infection and complications were ruled out by more urine cultures, an ultrasound and blood work. We even ran CRP to see if there was undue inflammation that could point to GI issues, but that was ruled out as well. Home I went. As a patient, you kinda lose your steam after awhile. I lost my steam for about 2 days. I was just so paralyzed with pain, disappointed that the meds weren’t working, and exhausted. But, as usual, to my rescue my doc offered to see me just to assess what was going on. No judgement, no preconceived notions, just a lot of listening and suggesting. We tried the logic that it was nerve related. Either an aggravated nerve due to the innervation of nerves around the surgical site, OR a new nerve pathway sending protective signals despite the removal of the stimulus. This in essence is central sensitization and not uncommon with laparoscopic excision of endometriosis. Doc gave me two nerve blocks, warned me the pain may get worse before it gets better, and then chatted with me about the findings of the surgery.

No endometriosis is still worth excision surgery.

I write this because time and time again I have had women reach out to me in tears, saying their worst fears came true: that the surgeon was not able to find any endometriosis and they feel like failures. Only a doctor can make you feel like a failure by giving you the notion that the surgery – the lap – was a waste of time. But as medicine and science go, we usually can only rule out. We dont rule in. So by enduring biopsies and the exploration through laparoscopy this is still a major milestone in your journey.

When I sat down to go over the findings, I was shocked (and relieved) to hear that the pathology for the biopsies from the left side (the side stuck to the colon by adhesions) was negative for endo, as were the various unusual spots taken from my diaphragm. Let me repeat. There was no endometriosis on my diaphragm. I would have expected this to make me feel mad, or sad, or something… But it didn’t. Because my surgeon told me we did everything right, and that for any residual pain We can rule OUT endometriosis but that still lends the way for other professionals to start taking a stab at hypotheses. This is exactly what your surgeon should be saying to you. This is exactly what your team of specialists should be reassuring you of. It’s never over, until its over.

All in all a great day!

I just hit the 4 week milestone, and I am feeling very optimistic about my recovery. One thing we did happen to modify during that last visit was swapping out gabapentin for amitriptyline which has been causing dizziness as expected, but otherwise, I even baked some cookies last night :).

Listening to my body – part 2

It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and 3) I’ve taken the liberty of switching off of progestin-only Visanne (oral birth control) to a estrogen-progestin oral birth control called Minovral which seems to be keeping me on my cycle and has reduced my endo-belly.

Let’s start off with my endo visit exactly a week ago. For the sake of public scrutiny I will avoid mentioning names of my doctors. Let’s call my Endo specialist ‘Dr. E’ for now. Skipping ahead past the routine questions, Dr. E had a resident doctor come assess me first. To be fair, I took a cancelation endoscopy for an hour after this appointment so the doctors were rushing on my accord. The resident was interested in my birth control path, and agreed that putting myself on some form of birth control was the right idea, and certainly if Minovral had helped me in the past it was a good option. She also reiterated that I would use it to skip my periods as I had been, to reduce the ‘cycle’, and eliminate the bleeding which in turn should reduce new endometrial growth. This is key to the understanding of how the disease works. However, where we disagreed is her plan to attack the pain. She was comfortable assessing whether the birth control itself would reduce the pain and then we could address next steps in two weeks. My thinking was that birth control hadn’t worked in the past, Visanne certainly didn’t work, so going back to birth control as the line of defence was practically moving backwards. She called in Dr. E to help with the issue. I wasn’t being irate, I was being rational and she appreciated this. Meeting Dr. E was like meeting a celebrity. He has a fantastic reputation in the community and has overcome tremendous feats for women suffering from endometriosis that I was admittedly somewhat star struck when he walked into the room. Mom helped me gain my composure to address the pain question and this prompted him to get me to lie on the table and see where the pain is located.

Upon inspection I was able to show him that my lower left side, right around where my stitch for the ovarian suspension was, always hurts. Always. Every examination Ive had since my excision in March has resulted in me wincing in pain every time a doctor pokes in that general area. This was a red flag for Dr. E. He then asked me where my upper pain resided so I showed him the right side under my rib (which one could say is my right side of my diaphragm). Practically, this would align with the diaphragmatic endometrial lesions that were cauterize during my excision. Scientifically however, lesions on the diaphragm (so I learned) do not express pain on the diaphragm but refer pain to the right shoulder. This is where we paused for scientific clarity.

In Dr. E’s opinion, one should be pain free 6 months to a year after a thorough excision like the one I had. While the cauterizing did not effectively remove the endo on my diaphragm it should have – along with skipping my periods – significantly halted any growth or spreading of those implants. Dr. E also mentioned that doing surgery on a patient is usually refrained from IF the patient has NOT had this time frame (at minimum) of no pain, as it may point to other explanations of pain rather than it being a direct cause of the implants. Yikes. We agreed that we would order some scans to physically examine the state of the implants (for preparation of any future surgery) but that our primary goal (kind of what I was gunning for in the first place) was to address the pain.

Here is where my life turned upside down. Dr. E told me that there is a Neuroscientist who believes the body can learn to address pain in a constant fashion, even when the body doesn’t meet protection. For more information on this concept, Dr. Lorimer Moseley has created this fabulous video called “Tame the Beast”. (This link will open the video in a new window). Under this concept, Dr. E has administered a pain blocker to many women like myself who are feeling pain in an area that is perfectly healed and not in danger. With my eagerness, Dr. E’s Resident administered two long needles into my nerves associated with this over-firing of pain. It was such a weird feeling. Ugh! I was told that if it is the problem, I should get a rise in pain initially and then the pain should go away within 24 hours, for 4-6 weeks! Note that the pain did go up after the injections but only if I really pressed on the nerves. The pain went away 100% after the first 24 hours and I can happily report there has been no pain for ONE WHOLE WEEK!!!! With regards to the upper pain, the theory is this could also stem from the same problem but given its complex location I would need to be given a neuromodulator (similar overall function of the pain blocker). BUT we decided to hold off as this area is still under scrutiny by my GI.

Perfect Segway…

After this appointment to which I was numb from emotion, I quickly drove over to the hospital down the street for my endoscope. So, this was ordered by my GI (Lets call him Dr. G) to reexamine my pancreas and get to the bottom of this recurring acute pancreatitis. In some ways this would also help to rule out the theory of endometriosis on my pancreas but the rest was up in the air.

When I was about to be sedated the GI (Call him Dr C), asked me if the episodes of pancreatitis ever happened before I started on entyvio. The answer was no. He then told me that a recent publication (2018) showed 4 cases – two adult and two paediatric – of pancreatitis linked to Entyvio (Vedolizumab) and he suspects this may be the case with me. The endoscope was quick and dirty. When I started to come out of the fog, Dr, C waited behind to explain to me that the endoscope looked fine: no inflammation on my pancreas, no scarring, no signs of damage. This substantiated his theory that it could be from my medication and that if my infusion frequency has been moved to every 4 weeks this could exacerbate the pancreatitis. On this front, I have left it to Dr. C to let Dr. G know, and contact me for next steps. The challenge there will be having to take me off a medication that is working for my Colitis and figuring out which other medication will work.

Stay tuned for part 3.