Tag: endometriosis pain

Not knowing IS the battle

It all starts with not knowing. I mean think about when you first got your period. Aside from maybe the moms who they themselves had/have endometriosis, did anyone sit you down and tell you what to expect if you have painful periods? Did anyone give you a hotline to call if your cycle is out of whack or your pain is debilitating? My guess is no.

And then somewhere down the road someone stuttered the words ‘pelvic pain’ or ‘endometriosis’ or perhaps even ‘adenomyosis’ and from then on your world turned into a never ending rabbit hole of internet searches to figure out if google could diagnose you with something. A doctor – 10 or more years later – decided to happenstance the diagnosis primary based on symptoms (something google did for you many years ago) and then you are left wondering how bad it is, where it is, if you’ll be able to have children. Oh but dont jump ahead too quickly. It’s time for birth control first. Cus, that’s what we all do, isn’t it? Take these pills once a day and dont ask questions. It’s just what you do. Did anyone explain to you the side effects of birth control or the roller coaster of finding the right one? I remember when I went on anti-anxiety medications I had the briefing: “it will take 6 weeks or so before you notice anything significant. The side effects may be scary so dont worry, if this one isn’t the right fit we can find something else”. So why didn’t I get that same briefing when I went on birth control? Nobody told me that in the 90s I would gain weight, lose my self esteem, go into a spiral of self loathing and anorexia. I would think those are pretty worthy things to warn a 14 year old about. But on I went. Through the quicksand of emotions.

Herein lies the epitome of gender bias in healthcare. Love that term. Gender bias in healthcare. Do you think if a man had irregular erections and it might mean he couldn’t produce sperm to provide his partner during conception that that shit wouldn’t be TALKED ABOUT??!?! I had irregular periods since I was 14, had cyclic pelvic pain that only narcotics would touch AND I wasnt able to conceive. The answer? You must go through 2 years of failed pregnancy before we can refer you to a fertility clinic who has no real expertise in endometriosis but may officially diagnose you with this upon surgery to then boldly let you know you’ll have trouble conceiving. FUCK ME! If I had known this at the age of 14, maybe I would have chosen a different life partner. One who wanted kids. One who had the same family morals as I did. One who would hold my hand through it all. But I didn’t. I chose a man who was meh about the idea and I was 19 when I met him so what did I care. If I had known that endometriosis might bring about difficulty in conceiving maybe I would have tried earlier. Had less stress about the whole process. Went about it with a more positive approach. But I didn’t cus I didn’t know cus nobody thought to tell me.

I had an ablation at the age of 29, got divorced, decided I WOULD NOT put my body through child rearing – a decision I did not take lightly and was only amplified once I met the man of my dreams who too did not want children at the age of 50. And so here I was swimming in the land of ‘neither here nor there’ until an excision needed to be done. I have never really expressed my utter annoyance with this first excision but did nobody think to tell me that ‘yes’ I have endometriosis on my diaphragm but ‘no’ we are not planning on taking it out? I mean, I didn’t know at that time that taking out any lesions within the thoracic cavity would be such an ordeal but you’d think the surgeon would have … I dunno… told me? So I went through the surgery. She was very proud of her work. Oh good. At least there was that. And then… next steps. Lupron or nothing. I mean.. pardon me? So that was that. I literally was stuck between a rock and a hard place. No referral to a thoracic, no referral to an excision specialist with thoracic experience. Nothing. So I did what any threatened bullheaded woman would do. I squeezed myself out from between the rock and the hard place, and found myself a doctor who would listen.

Ok so in the end, the surgery to remove the thoracic involvement was much less intensive than expected. We didn’t have any pathology from the previous surgery – other than images – to confirm what the first doctors saw was in fact diaphragm endo and pathology from this last surgery showed no endo in the thoracic cavity. That’s not to say I didn’t have endo. I had it on my ovaries, and I had extensive adhesions on the bowel. The surgery was a good idea and my surgeon was excellent at going through the steps we would take leading up to the surgery as well as next steps after the surgery (and I got better at asking those difficult questions). But I do hate that system of briefing the patient while they are high on morphine. I didn’t remember anything! I did get a very nice call from the surgeon a few days later and the conversation was lovely. BUT… what about recovery? How long will it take to lift something heavier than 15lbs? How long will it take for me to stop feeling lethargic? At what point should I tell myself to stop being ‘sick’ and start resuming normalcy? I know they say to listen to my body but what should I expect? What is normal? What are the signs? How do I know if something is going wrong? If something goes wrong who do I call? When can I start running again? When can I travel again (ok, pandemic aside)? When can I go dancing again?

These are the questions that circulate across facebook groups and Instagram posts. What’s normal? Has anyone else had difficulty peeing? How long after surgery can I go back to work? What’s the normal feeling after surgery? How long after the surgery will I know if it worked?

Why is there such a black hole of information when it comes to expectations of endometriosis? This should not be allowed. In fact, it should be illegal to have a patient endure hormonal therapy and blockers and injections and surgery and Lord knows what else is coming down the pipe, without giving clear concise expectations. Why wasnt I told upon starting Orilissa that some – not many but some – women experience suicidal thoughts? I mean, IS THAT NOT SOMETHING I SHOULD KNOW?????

Not knowing is what drives me the most crazy when it comes to this disease. It starts at the very beginning and you continue to drive down this winding path without a map. It’s infuriating. Anyone else with me on this?

Happy Saturday 🙂

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Excision Surgery Part 1: From The OR To My Bed

For those of you who are still on the edge of their seat waiting to hear about what’s been happening with my endo journey, here goes.

To recap, back in February I asked to see my Gyn because Orilissa was eliciting dark suicidal thoughts (not tendencies, thank goodness). At that time they told me to absolutely discontinue and not to worry about withdrawal effects. I had made it to 13 weeks anyways so in my mind I checked off that box. At the same time I finally gave the green light for surgery which prompted a lot of paperwork to sign for the OR and a visit with the Thoracic surgeon just to ensure he and I had a chance to pow-wow about the expectations. That went well with one minor little ahem. So I asked him about the heart/lung issues Ive been having and he clearly dismissed endo being the culprit which in turn opened up Pandora’s box – in a good way – that inevitably delayed my surgery but helped all parties involved get clarity on any ‘other’ factors influencing my thoracic cavity.

And then then pandemic hit.

I will say though that within DAYS I had 6 or 7 appointments booked – for September nevertheless – to examine my lung strength, my heart beat patterns, load on the system, etc. With Covid however, this meant the hospitals were shut down especially for those with breathing issues until they had the green light from Ford to reopen or to at least tread with caution. Back then, in March, they told me if the pandemic lifts by the summer feel free to call for an earlier appointment. Funny to think that was where the bar was set back then on this ever-looming pandemic. The months went by very quickly despite all the pain, and before you knew it August had arrived. I had a holter monitor booked for the end of August which went well. No abnormalities. (Spoiler alert: all the tests came back ‘unremarkable’). I had a breathing test that almost looked like I had asthma but was temporarily ruled out for the time being. More extensive tests will be done in the upcoming months. All in all, I was cleared for surgery (but, the cardiologist was not convinced my problems were due to endo and would see me in a few months).

By mid September, all the tests done, and the pain becoming very unbearable, I called the doc and asked if he could please push my surgery up from February. He (re)assured me he would do everything he could. And just like that, I got a call to confirm a surgery date of Oct 9th.

OK fast forward. I had a prep done a week before the surgery to check all my vitals and go through the pre-op procedures. They talked to me about all the possibilities like a catheter if the abdomen incisions need to be bigger, or a chest tube only if the thoracic involvement is greater than predicted. They went through the fasting process. Days leading up to the surgery were the worst, with the combination of trepidation, anxiety (*doc called to tell me the rise in COVID cases was causing some overnight surgeries to be canceled, so to hold tight), and lots of pain. The one other thing is that I was scheduled to have an Entyvio infusion (for my UC) the day before the surgery but because it could compromise my immune system they delayed it by two whole weeks!!!

The fam jam arrived the night before my surgery to settle me in. We had a great meal – no alcohol due to the fasting rules – and a good night’s sleep. In the morning Greg took me to the hospital and was only allowed to drop me off which I know was a game changer for him. It caused intense anxiety so I told mom to make sure he was calm while they waited for any updates. I was there for hours before the surgery but time really did go quickly. They asked me for a urine sample to check for any pregnancy. They make you wait a long time just to get in the room but then once on the stretcher they made me so comfortable with a blowup hot blanket and warm clothes, booties, and nurse with a lovely demeanour. We talked about what happens if someone is pregnant (I assured her I was NOT) and we laughed about some medical surprises. I was cool as a cucumber and I remember asking myself why I wasn’t nervous at all. I think the reality was I had had a surgery like this before so knew what to expect + I just knew I needed this so badly. They finally wheeled me outside the OR where I met my surgeon and his team, along with the anaesthesiology group. Within a few short minutes I was taken into the OR, laying me down on the bed, my arm out for the IV to be hooked up to the good stuff. They put an oxygen mask on my face like they do in the movies and then I was out.

Me and Dr. Singh prior to the surgery

As I was waking up from surgery, my brain was still very foggy but I knew where I was. Sort of. I knew I was in recovery. It was so quiet, maybe due to limited staff and patients impacted by Covid rules, but it was calming in a way. I didn’t know it at the time but the extent to which they had to involve the thoracic cavity was fairly limited so I was able to go home as soon as I was able to pee. When the nurse helped me up from the stretcher one of my incisions started to bleed. She cleaned me up and helped me to the bathroom, very very slowly. I sat there with running water on to help me pee. But I just couldn’t. I wasnt ready yet.

I went all the way back to my bed so I could relax a bit, wake up a bit and then tried again. Success! I was able to pee, call my fiancé and go home.

The first night I was pretty much completely out of it. I woke up from time to time as I wanted to shift my positioning but it hurt too much. The most comfortable position was slouching with pillows behind me. I was bloated and uncomfortable but I was happy. The medications they gave me at the hospital had not worn off yet so I was able to get a pretty good sleep despite everything.

My surgeon called me the next day just to check up on me and make sure he had an opportunity to go over the surgery while I was a bit more coherent. What he told me was that they went in through the belly button and examined the uterus first. They took one spot off the right pelvic side, and one spot from the left. The left ovary however, was fused by adhesions to my rectosigmoid colon which was fused to the abdominal wall. This was where they spend the majority of the time slowly removing the adhesions and then removing any new lesions that had formed underneath. They then reverted the cameras and went in where the liver is situated. They took a few spots from the right diaphragm but no endo was visible on the left, which was what the surgeon was expecting. A lot of theories went through my head after that, and I was just so thankful I went ahead with the surgery.

I guess that first week was the most important, and I was so so lucky to have my family with me. Between Greg, my parents and my sister, I was able to rest as much as I needed to without having to get up. Mind you, it was important to be able to move around in those first few days to avoid any adhesions, to expand my lungs and mostly to be able to reduce the air trapped inside of me. That first day I remember I was depending on the hydromorphone to bring down the swelling and prevent me from feeling anything outrageous. But as the days went on I really didn’t need the strong medications. I was mostly switching between Tylenol and Advil (Advil to a lesser degree due to my UC). But by the third day I was walking around, holding on to my belly to protect it I think, and I’d sit for longer periods of time rather than lying down. My back was starting to hurt from only being able to lay in that one position all night. That’s when I brought out the body pillow. While the first few days it was great to use it to prop me up, the body pillow became my lifeline to prop my my knees for a few days and then from the first week onward the pillow allowed me to roll slightly on the left or the right while propping myself up with the pillow as I straddled it. Being able to move around a bit more in bed really helped to squeeze out that air, and give me that confidence that while yes I was sore, I wasn’t going to damage anything. The thing that bothered me the most was the itching from the tape. By day 4 I was taking Benadryl to stop the itching and to help me sleep because of the itching.

I hit a low. I had not given myself the chance to absorb the surgery before it happened, but mentally I worked though it a few days later.

This is something I want to spend some time on as I think we go into the surgery confident that this is what we need, and that no matter what, you’re going to be ok. These are all true statements, but the gravity of the surgery may not hit you until it’s over. As it did with me. It wasn’t depressing. It was more like pride. Joy. Exhilaration that the whole thing was over. I cried for a bit, in a state of bewilderment, and then it was over. That’s all I needed. But if you are going to be having an excision, know that this is a big decision and there is no right or wrong answer whether this is the appropriate next step for you.

By day 5 I was dying of itch, and kinda working my way though the pain. It wasn‘t bad enough to warrant narcotics but it was not going to be touched by Advil, so I ate candy and watched Emily in Paris lol. I also started taking restoralax by day 6, to help even out the see-saw between constipation and diarrhea.

After ten days my family left because I was mostly able to get out of bed, walk around and make tea for myself. It was sad to see them go but I continued to be utterly spoiled by Greg.

And then something weird started to happen.

To be continued…

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Appendicitis? That’s a new one

I always start off these articles proposing that perhaps blogging is dead. But for me this is truly therapeutic in putting my journey out in the open. Remember that not only do I have thoracic endometriosis but I also have ulcerative colitis, and as everything swells together it is extremely difficult to discern my diaphragm from my colon from my pancreas which tends to flair on its own accord.

On September 10th, a normal Thursday, I had another Entyvio infusion. I was a bit worried about this one, as the last month’s infusion sparked up a pancreatitis flair. A few days after my infusion – which sometimes causes this dull ache in my colon during the infusion itself – the dull ache starting morphing into a prominent ache. One in which it was telling me something was severely wrong. I then had one of the most painful bouts of diarrhea I have ever experienced. I was up at the cottage that weekend and all I wanted was to come back home, and crawl into my bed. So I did.

But the pain wasn’t stopping. In fact, the location was staying consistent (right below my ribs where they join) but growing in intensity. By Tuesday afternoon I was in agony. For many, many months starting before the pandemic, I vowed that it was not worth ever going to the hospital for pain because I’d much rather suffer in my own bed than endure hours of poking and prodding to end up empty handed and in tears. But right at that moment, 3pm on a random Tuesday, I succumbed to the hospital. I grabbed a hoodie and my purse, kissed my fiance and walked out the door. Call me a sucker, I sat in the waiting room hoping this would go by quickly. I will say in the face of positivity, the hospital was quite quiet, so things did move along at lightening speed. I was inside emerg within a few hours, and saw the doctor right after they put me in a room. The doctor came in to examine me, asked all the typical questions and then poked. When he poked at the location I described to you, I winced. When he poked at my ovaries; nothing. But when he poked at what he claimed to be my appendix I cried out loud. I didnt even know that spot was tender until he poked at it, but boy was it tender. He asked if he could do an internal to check my ovaries and then concluded he was ordering an ultrasound and some pain meds. I went and sat in a chair, waiting for pain meds. They were marching in with what I knew to be morphine so I stopped the nurse and asked her for a hydromorphone drip. She came back with a hydromorphone pill which I know doesn’t work. And it didnt. It just never does. But here we go.

I was asked to drink tons of water in preparation for the ultrasound and then was taken to the US room before my bladder was even full. Nonetheless the US tech began the process and spent a great deal of time around the right side of my abdomen. She then moved her way down to the pelvic area and asked if she could do an internal ultrasound. I felt like it must have been 45 min that she spent on me and was very thorough. When I went back to Emerg, the doctor who was seeing me had vanished. I was in more need of pain meds, and I sat there anxious and twitching to ask someone for more meds. Finally, I got up and asked a nurse. I explained once again that hydromorphone doesn’t work, I cant have morphine, so please give me a hydromorphone drip. Instead, they gave me a pink lady and told me to wait half an hour to see if it worked. IT DID NOT WORK!! I was all excited when – maybe half an hour after that – they took me to the IV table but it was because the US results yielded inconclusive results and they ordered a CT with contrast. No hydromorphone drip. I marched over to CT, and had my scan done. Once again, I sombrely marched back to emerg and sat my ass down waiting for more answers. I had blood work done, a urine sample done, an US and a CT by this point, and it seemed like everyone was on the appendicitis train.

Remembering that I arrived at the hospital at 4pm and now it was approaching midnight, I was out of energy, starving, cranky and in so much pain I was beginning to get numb. With every last ounce of energy I had, I begged nicely for a drip. Through the IV, they gave me some Toradol. Ugh. I gave up trying at this point. I sat there, for what seemed like forever, in a pain haze, and waited. After some indiscriminate time had passed, a nurse came to check up on me, along with a new doctor. He asked me to follow him to his computer. He told me that I did have some ovarian cysts (what else is new???) but that all the scans came back negative. I appeared to have a perfectly happy appendix. Moreover, he could not determine what could be causing my pain. So, I politely asked him what the chances were that it was endometriosis and he said plainly “I wouldn’t know”. As a gift for coming in, he told me they would be swabbing me for covid due to my abdominal pain being one of the symptoms, and that I would need to self isolate. Fuck me!

I cried hard that night. I cried until my body was completely void of all feelings. I cried as I left the hospital, as I paid for my parking, as I hopped into the car and drove 25min back home. I cried as my car sat idle in the garage. And then I stopped crying. I wiped my tears, I went inside the house, and I slept.

The next morning, I was angry. I was angry at the negative test results. I was angry that I was still in pain. But mostly, I was angry that “I wouldn’t know” was an acceptable answer to an emergency doctor who should have given me more than half a second to understand my endometriosis. I was mad. And yet, there was nothing I could do about it.

I have spent the last week building myself back up from that. Reassuring myself that I know I have endometriosis and that I will have answers during my surgery (mixed with, OMG what if the pain really isn’t from endometriosis). I have walked away from negativity as best I can in preparation for my surgery. But I assure you, when I am a bit stronger, I will be fighting the system a lot harder!

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How I described pain as endometrial lesions spread throughout my body

I got up to pee in the middle of the night, the whole world dark around me. I sat there, relishing in the mere moment where my mind and body were disillusioned by the fact that I was half asleep and too withdrawn to feel the pain. But as my body started waking up I could feel simple sensations coming to life. The bladder twitches, the thoracic ache, the speeding of my breath. Before I could allow these sensations to come into full life, I dragged myself back to bed. In those moments though, I thought about how I came to a place where pain was sewn into every part of my life. I remembered then, what it was like at 14, when I started my period. What it was like after my first surgery. What it was like leading up to my second surgery crippled in pain throughout my entire abdomen. These milestones – good and bad – were equally as eventful as the previous, and taught me a lot about this disaster of a disease called endometriosis.

When I was 14, naive to a disease, and naive that a process that half the population endures once a month could be wrought with such debilitation, I had my periods like every other girl. After a few months of simple periods, my body started coming into full force, with the first day of each period causing sharp pains throughout my pelvic region. An area of my body that was once asleep was now a part of me that I was so aware of yet forbidden to talk about. Sincerely there was no compassion for the pain I was enduring – at first once a month and the slowly the days of bleeding outnumbered the days I wasn’t bleeding and in pain on the bathroom floor – because nobody could relate. My periods lasted days. The pain: a consistent pressure across my entire pelvic area, and sharp pains as the clots made their way out of my body. My vulva felt swollen and my cervix felt wide open, allowing such volumes of blood to escape. The outside of my vagina was tender and chafing from the pads I’d force myself to wear until they were so damp and needed to be changed. After I was put on birth control, my cycles were regulated and bleeding was happily once a month, but the symptoms remained the same. For years. 15 years!

After my first laparoscopic surgery to remove Stage II endometriosis in hopes of a happy fertility story, I felt clean. Thats the word I would describe it to this day. Clean. I felt pure, and healthy and unafraid of my period. I wore tampons for the first time in my life without needing to remove it due to discomfort. I was blissfully unaware that this happiness had an expiration date. After three months I could start to feel the pain: Aching in my back. Diarrhea during my periods. Fatigue, heavy bleeding, crushing pain on the first day. Three months was what I gained, and then everything went back to normal. This was the detriment of ablation surgery. Literally, cutting the grass without pulling out the roots allowed all the pre-existing lesions to continue to work their demonic magic.

What turned out to be a happy infertility story – a divorce and a fresh start – led me to ignore the symptoms over the next 6 years. Symptoms like shakes and sweats when pooping, blood clots the size of marbles, knots in my left butt cheek that felt like sciatica, and mind numbing pain every now and then up near my ribs. My medical history would prove that such disconnected symptoms usually meant nothing would be found therefore not worth the effort to explore. Until it was too late. My whole life was being turned upside down because of the pain: I would keel over in pain while running (same pain as when I was 14 but worse stabbing), run to the washroom while eating (same pain as when I was 14 but more urgent), be paralyzed in cold sweats and pain while entertaining clients (something that I never had before. It was my body’s way of shutting down to protect me from the absurdly intense pain coursing through my body), and staying home to work on days where I could barely move my body. My body felt heavy, and sick. It felt immobile, stiff, and often breaking down. As a response, I would shut down.

I was blessed with a diagnosis, you see, so when I heard about an endometriosis pain clinic near me, I walked to a nearby walk-in clinic and asked for a referral. A pre-existing diagnosis is hard to argue with. And when a walk-in doctor has no advise for you, he will gladly write you a referral. Months later, I received the call that the pain clinic would see me. A doctor, an aggressive but smart doctor, was able to determine that my endometriosis was sadly all over my body. Through an assessment of pain pathways she could reveal without further examination that another surgery was imminent. And so, another surgery – an excision – revealed that Stage III endometriosis was on my ovaries (I had an ovarian suspension done) which was causing sciatica-like pain. I had lesions on my bladder, colon (probably contributing to the diarrhea), ribs, liver, and diaphragm (causing the abdominal pain). Unfortunately she was unable to remove lesions on the diaphragm due to her own limitations. Not even three months later, the abdominal pain began to ruin my life. I would end up in the emergency department to find reprieve with narcotics. And while I continued to warn them that morphine always made me worse, the morphine was shot through my system and I would clutch onto my abdomen as though I’d been shot. Several times, I would have traded being shot over this.

The doctors say I am a stage II again, but with so much time passing and nothing preventing the disease from spreading I’d be surprised if I didn’t have stage III I do not have any endometriomas or deep infiltrating lesions throughout my organs. I do not have anything that can be seen through imaging. I respond oddly to progesterone, and I reacted unfairly to Orilissa. Nothing about my personal disease screams ‘agony’ or ‘intrusive’. Instead I suffer in silence every single day to avoid sounding like a broken record while my insides continue to fail me. What does it feel like today? The pain: urgent diarrhea while Im ‘on my period’ even though I am on continuous birth control, a dull ache in my pelvic area, sharp pains in my ovaries, the sciatica-like pain, aching hips, a constant bruising feeling along the base of my ribs mostly in the centre and left side (contrary to the disease being mostly on the right side), a bruised feeling straight to my back, a tightening around the ribs like someone is tightening a belt around me, intense fatigue, night sweats, and nausea. I feel like a sick 90 year old in a 37 year old’s body. And for now, while Covid continues to delay my surgery this is how life will remain for the foreseeable future.

Please reach out if you have any questions about the disease, the stages or treatments.

crampmystyle18@gmail.com

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Is it rare or medium rare?

Back in 2012 when I had my first surgery to diagnose and treat endometriosis, my surgeon was able to ablate the lesions from my Fallopian tubes, but he was not comfortable working with the lesions on my bladder. For five years these implants continued to grow and spread, until my recent surgery in 2018 where endometriosis was excised from my bladder, colon, and ribs. Sadly, there were implants on my diaphragm that my surgeon did not feel comfortable removing as she was not trained in working with the thoracic cavity. In these cases of thoracic endometriosis, only a handful of doctors in the world are skilled enough to work side by side with a thoracic surgeon to carefully ablate the implants using a technique called VATS (video assisted thoracoscopic surgery). Thus, after waiting and suffering 5 years between surgeries to remove the endometriosis (for a total of 20 years) there were still residual implants left inside my body that I knew was going to spread eventually.

A few months after my surgery I went into the hospital with excruciating abdominal pain. Upon admitting me into the ER my blood work revealed elevated lipases at 2000. A repeat blood work showed the same spike and so I was admitted as an in patient to continue doing more tests. That story ended quite quickly as is the beast of the medical system: two doctors claimed I had pancreatitis but the more senior doctor disagreed and sent me home. I suffered – and continue to suffer – 2 whole months with this chronic debilitating pain. It so turned out that after around 7 weeks I started to exhibit symptoms of a colitis flare and was going to pull through at home until I had these weird heart pains which were new for me and fairly frightening to say the least. Skipping ahead to when I got to the ER, my lipases were at 4000 and this alarming number enticed the doctors to admit me once again, even though this wasn’t what I came into the hospital for. Back on the pancreatitis train we went, proceeding with blood work, a chest X-ray, fecal testing, two endoscopes and the list goes on. While my lipases continued to bob all over the place during my 7 day stay at the hospital, my colitis symptoms subsided and the mystery continued. This visit brought on the interest of the general medicine doctors and the gastroenterologists who ruled out acute pancreatitis (I don’t drink and I don’t have a gallbladder to form gallstones: the two main causes of acute pancreatitis). They failed to fully rule out autoimmune pancreatitis as my IGg4 levels were normal (as is the case with type 2, not type 1). They also failed to rule out EPI – exocrine pancreatic insufficiency – a disease in which your pancreas lacks the fundamental enzymes to break down foods into basic nutrients and thus your body does not absorb nutrients from foods you eat.

Along the way I had suggested that since none of the scans showed any abnormalities in the pancreas, any blocks or any stones, that perhaps this could be endometriosis on the pancreas, making it angry, and causing it to spike in lipases. The theory was not thrown out. In fact, the two teams of doctors thought it best to bring in the Gynaecological team for a consult to see how plausible this could be. First came the residents who stated this was an interesting theory although the endometriosis on organs such as the pancreas and liver were too rare. I begged the question “is it more rare to have it on my organs or on my diaphragm?” – needless to say the answer was not provided. The second step was to ask the attending doctor what he thought about this theory. Instead of having a voice he played the politically correct card and deferred to my endometriosis specialist who unbeknownst to me is the head of gynaecology at the hospital. Here is what she said:

I have never seen endometriosis on the pancreas in all my years of practice and I strongly believe this cannot be the case. She would be written up in a case study. I have told the patient that she should be on Lupron to use as a diagnostic tool to determine whether the pain she is having is in fact associated with endometriosis. I now, however, think that we should hold off on lupron as it could confound any other finding for this cause of pain, and so we will back out of this case until the other departments have run up against a wall,… and then we can bring lupron back on the table.

That, my friends, was the last time I heard from my endometriosis specialist aka my quarterback. I was livid. I was exhausted. I felt denied and betrayed all at once. The other piece of this story is that she refused to refer me to THE ONE AND ONLY doctor in Canada who is qualified to remove endo using VATS until I performed the lupron diagnostic. She never came back onto the case, and I fired her. Because, I can!

Today I continue to suffer from the abdominal pain, in the comfort of my own home, and have a few extra tests booked as the doctors are curious and excited to determine what is going on with my body. I cannot say I was denied proper care because the doctors at the Vancouver General Hospital have always gone above and beyond. What I can say is that while endometriosis on my pancreas may sound like a hilarious and rare probability, I have since been in touch with a handful of endo sisters who have either suspected or confirmed endometriosis on their pancreas and/or liver. So again, I ask you, is it really that rare, or is it medium rare?

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Endometriosis is a disease that effects 1 in every 10 women. Some say it is genetic; others attribute the disease to early life trauma, and in some cases we hear cockamamie theories such as “women bring this upon themselves by having sex too early”. Women at the age of 14+ begin seeing a gynaecologist for yearly Pap smears. These doctors are specialized in the reproductive system but so few of them understand endometriosis. There are highly specialized endometriosis surgeons who have spent a great deal of time understanding how this disease spreads and furthermore how to eradicate the endometriomas from organs and spaces outside the womb. These surgeons, albeit experts in the field, may or may not be able to work with certain organs such as the bladder, the colon and in some cases even the diaphragm. Even worse, a very small number of endometriosis surgeons are trained in excision surgery; they continue to perform ablation surgeries that simply cauterize the lesions. The point is there are very few resources dedicated to better understanding this disease, and very few professionals who are specialized in the field of treating endometriosis.

If you are looking for proper care for your endometriosis please ask the questions you need to, to determine which piece of the puzzle your doctor is able to take care of. If your gynaecologist does not know how to treat endometriosis make sure they refer you to an endometriosis specialist. If a surgeon wants to perform surgery to treat the endometriosis make sure they are conducting an excision surgery – this is the only type of surgery that will remove the lesions and give your body a fighting chance.

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Dont tell me what to do

Working on you, when you are ready

I refuse to be called a millennial and in the grand scheme of things I dont think Im that stubborn. But I have noticed a trend in my life: that I can only do things when I am ready. For instance, when I was 12 years old my father brought home a copy of The Wealthy Barber. To this day this book continues to be recognized for its illustrated wisdom of teaching thousands of people how to save and invest their money. Dad had just started to learn about this at a greater scale and thought it would be fun to teach me how to grow my money at a young age. Surely if I had listened and followed back then I would be fairly wealthy. But it was the LAST thing on earth I wanted to be learning or practicing. We continue to laugh about this today as Dad makes every attempt to teach my younger cousins and now my nephew – any last ditched effort to get the young ones to invest. At the age of 35 I would commend myself for how money smart I am, but only because NOW I have an interest.

Over the last month I have been in a dark place. My diaphragmatic endo took over my life, putting me into the hospital three times in one month. I have been nothing shy of spoiled with love by my social media family as well as my real family and friends. Each one has taken a vested interest in finding me comfort but up til now, I wasnt really ready to think about how to reset my life. I was more focused on being angry. I have slept more in the last month than I did in my teenage years. My boyfriend and my mother have taken turns flying across the country to take care of me. And while little victories (healthy blood work, no diagnosis of something fatal, etc) make them exceedingly happy all I can think about is the pain and how angry it is making me. One afternoon mom suggested – after reading some rather basic endometriosis blog articles – that I should incorporate deep breathing exercises into my daily routine. What did I do? I tore her a new one. “I dont need you to read blogs I already read 20 years ago, telling me to do things I already know. I need you to find me a specialist”. She knew I was angry. She rested my head in her lap and let me cry and cry and cry. I knew yelling at her wasnt fair. And while everything she said was correct, I wasnt ready.

The remedy for my sanity was to fly back home for a while. I live in Vancouver but Ottawa is where my soul is. I had a flight booked already, so nothing in the world was going to stop me from getting on that plane. For two weeks, while I was at home I took some much needed time to listen to my body, listen to my surroundings, and start to take in cues. The first thing I did was breathe. Yes, exactly what mom had told me to do, but this time I was ready. Lets be honest, breathing doesnt really help when you have diaphragmatic endo because it hurts like hell. So instead, I do breathing exercises  1) to understand my limitations and 2) to build the muscles around my diaphragm SO THAT if and when I get a collapsed lung I will be in the best shape that I can be. Its not much, and again, it doesnt create miracles, but its something. On the daily I try to do 5 long, deep breathes, roughly twice a day.

In addition to my deep breathing, I am also finally ready to make some other positive changes.

  1. Eating greener – Note that with my Ulcerative Colitis I started out on a low residue diet for nearly 4 months and then started to bring in root veggies which are healthy and low in fiber. I maintained this diet for another 4 months which has brought me to a very stable state (ie no sign of inflammation or irritation in my colon alongside Entyvio infusions). My body is finally ready to take the next step. On the advice of a social media friend I am slowly starting to bring healthier food back into my diet. She provided me with a suggestion to start with a handful of leafy greens per day, and wait a full 24 hours to see if it sits well. Mission accomplished! Now I am incorporating a handful of leafy greens into every meal. Once I am confident that this will not cause I flare, I am going to start replacing some rice with Bulgar, and then start to slowing bring in new veggies; keeping a diary along the way.
  2. Being liable (Myfitnesspal) – Ok so I am horrible for apps. I utterly detest the apps that require me to input my meals simply because they need the data, and I get nothing in return other than some simple graphs. But I also admit I have never understood calories except for the brief year in highschool when I was gaining weight from the pill and decided to starve myself. That was a good lesson on how not to obtain calories. But in all seriousness while I am trying to reduce pain, stay healthy and be whoever it is I am supposed to be, I am basing it on no metrics whatsoever. I decided to download myfitness pal. Yup, I definitely have to input my meals but it tells me when I am eating something good or bad, it gives me goals to achieve and shows me how much impact a little walk can make. If nothing else, it is making me very aware.
  3. Forgiving –  I am learning to forgive people for telling me how they think I should live my life. I am forgiving people for not taking me seriously before. I am forgiving the world for giving me two autoimmune diseases. I am forgiving my body for being flawed. I am forgiving my soul for taking times to cry. I am forgiving my dog for passing away when I needed her the most. I am forgiving my colon for being sensitive. I am forgiving my body for being too strong; and at times for being too weak. I am forgiving people who love me the wrong way. I am forgiving the medical industry for not pouring more money into endometriosis research. I am forgiving healthier people for thinking there is a diet that will cure ulcerative colitis. I am forgiving.
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A pendulum between two diseases

Between Ulcerative Colitis and Endometriosis

Where did I leave off?

Oh yes. So I kept you hanging with the MRI results, and still no word from either doctor.

On Monday morning I called to make an appointment with both my GI and my endo specialist. My GI had just returned from holidays and I was kind of expecting to hear back from her about all that had happened while she was away – and the pile of files she must have obtained from the various tests I had done – but instead they booked me in to see her later this week. My endo specialist doesnt have an opening until the end of August!!!

Monday and Tuesday were much like all the other days. Even keel pain, and some flickering of something down below (near my ovaries). The biggest thing though was intense (INTENSE!!!) exhaustion. I could barely stay awake. Monday I woke up at 7:30, did some work, and then fell asleep from 10am to 4pm in the evening. Tuesday, a similar pattern (shhh… dont tell my boss).

Wednesday was starting out to be like the others, but my boyfriend was sadly due to fly back to Ottawa, and mom was flying in shortly after to take over the ‘sicko’ shift. I coaxed myself to get up and do some things in the house; some real work, some chores, etc. Greg walked out the door, I had this shooting pain in my pelvic area, went pee, and… started bleeding. Spotting only, but then my ovaries were on fire. Great! Arent I freed from this burden by taking my Visanne every day? As the hours progressed before mom showed up, the bleeding remained a slow dribble but the intensity of the pain got worse, and with it so did the abdominal pain. This was quite the lose lose situation. Mom showed up finally and we somehow mustered up the strength to gab for hours until I called mercy and had to go to sleep. A restless sleep at that.

A pendulum between two diseases

Thursday morning (today) I prepared for my appointment with the GI. Here is what we concluded:

  • the pancreas and liver, and their associated markers, all look normal
  • my colon is happy as can be; no word of ‘remission’ yet but my CRP, Calprotectin and all other markers indicate that my colon is not inflamed, and that without diarrhea and bleeding the entyvio appears to be working.
  • so this further supports the notion that this could be endo, which is out of my GI’s expertise and hands.
  • Oh, and I still have what they consider early stage ‘possible’ PSC which calls for a colonoscopy and an MRI once a year to check on any emergence of odd cells or inflammation.
  • As a last effort on her behalf I am to take Dexilant for two weeks to address whether this is acid based (ie an ulcer or something related). If the drug works we see if there is time for a scope and if the drug doesnt work it further supports that its not a colon issue and more an endo issue.

 

The one good thing out of this is that I am able to try Neproxin for my pain, which was my saving grace before my excision surgery. The downside to this is the drug is advil-based so it may cause bleeding and diarrhea. So I am to monitor this very carefully and see what happens. Again, I will keep you posted.

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The Tango Between Two Diseases

Symptoms from Endometriosis and Ulcerative Colitis

I feel like my endo and my UC have been doing the tango, competing for first prize. On days when my UC  tends to be on the quiet side, my endo craves to steal the scene and do a few painful twirls on my diaphragm. Then they swap back and forth – never a dull moment! For those of you who have both diseases and potentially have diaphramatic or thoracic endo pain, you know that the localized pain is very similar in location and intensity to your UC pain. Lets see if I can explain with an image…

female pain points v2

The image above is a great depiction of the internal female body, and the areas that are most affected by the two diseases. I have tried to do a mock up of where my pain areas are (pink = endometriosis; orange = ulcerative colitis). As you can see the areas that I feel endo pain are very similar to the areas I feel UC pain. For instance, I have endometriosis on my ovaries (not shown here) and adhesions on my left ovary which impacts my left sciatic nerve. However, after my entyvio infusions or during extreme UC flare up, I feel intense joint pain in both my left and right hips. While my diaphragmatic endo pain appears to be quite higher up than the upper colon pain these areas truly are close together when you are trying to discern one from the other.  And lastly, pain in abdomen and areas neighboring the abdomen caused referred pain up to the right shoulder.

Note: I also dont have a gallbladder so this is why there are complications between my liver and my colon, and why I take bile salts when I remember to.

Some good news though!

  1. Today I had my very first firm, intact, pain free poop in 3 months!A shout out to the ‘Ulcerative Colitis’ facebook group who confirmed that it IS possible to start feeling and seeing results after only two loading doses of Entyvio. I was worried at first because after both first and second loading doses I was feeling abdominal pain that eventually subsides; with the last loading dose causing extreme joint pain. When my UC joint pain subsided I was unfortunately left with sciatic pain from my endo,… but whose counting really?!? *insert eye roll here*.
  2. I am on schedule for my excision surgery on March 12th with one of the best doctors in the industry. It will be a long and drastic procedure that will aim to remove endo from the typical places as well as up near my diaphragm. The only thing that could stop the surgery from happening is if I have a flare up but Im doing everything in my power to prevent that from happening! I am so excited!
  3. I need a third positive thing…oh.. i know! I just added eggplant in my diet!

 

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Skipping my periods… the journey continued

Skipping Menstrual Periods Because of Endometrial Pain

Has anyone else tried to explain to the world that pain meds (narcotics) actually cause you more pain? I have a strong understanding of medications and the mechanisms by which they take action, but I cant seem to wrap my head around this one.

When I had my gall bladder taken out years ago I was suddenly woken up by a dose of reversal drugs to drain me from the morphine dose they gave me in recovery. I had gone into respiratory arrest and the theory was that they had given me too large of a dose. But with my mom being a nurse and a mom, sitting beside my bed watching me stop breathing, that was the end of any morphine for the rest of my life. A few years later I had my first endo surgery – a lap that cauterized the endometrial tissue from as many areas as could be reached using a scope. The recovery was a lot like the gall bladder recovery with no hard narcotics and a few doses of Tylenol extra strength.

Along the way I noticed my body reacting to other kinds of drugs such as causing drowsiness from non-drowsy allergy meds, or an adult dose of nausea medication making me more nauseous. Yes, there are people like me in the world who are ultra sensitive to medication dosing and therefore we have to be very careful when taking particular drugs. I figured with my understanding of genetics and metabolism, I chalked this up to something I just have to have a heightened awareness of.

A few months ago when my endo pain flared up again, I went to the hospital for the abdominal pain and was sent home the same night. A week later the pain came back and I said ‘screw this, something is wrong!’. You can read my full post on this adventure but in a nutshell the first doctor listened to me and my body. I was in great care. But as the shift changed and the new doctor took over, I urged her to listen to me about my sensitivities to narcotics. She argued with me, talked down to me, and syringed a dose of something brutally strong in my IV. Before you could count to 10 I was in agony! Pure agony. I was already delirious and had no strength left to argue with what she was going to do to me. Luckily/Unluckily I didnt have to deal with her for too long as she was on a mission to discharge me…hopped up on drugs.

As you know I am going through this endo journey with the first step being skipping my periods for 3 months. It has not been smooth sailing. In fact, last week I was in so much pain I had to go above and beyond the naproxen, and dip into my store of T3. About 30min later I was struggling to breathe. My abdominal pain – the one where it feels like my ribs are in a vice – was getting tighter and tighter. No position was working. I finally dragged myself to the bathroom floor to lay my sweaty body on the cold tile floor. It was like I had been winded and the air was struggling to get in or out. With one eye open I grabbed by phone to text my boyfriend. He called me right away and told me I should call 911. Call me cynical but I was not ready to endure hours at the hospital for another doctor to tell me these drugs are invented to help me, not hurt me. No way. I was in no mood to explain anything to anyone.

Instead he called my friend who just so happens to be a ND. She ran up to my apartment with her husband, also an ND, and dragged me to the couch so they could take my vitals. My blood pressure was super low, but I was getting enough oxygen. They told me to wrap a sweater around my ribs so that I didnt have to hold on so tightly. The rest of the night consisted of tea and breathing exercise while we waited for the drugs to pass. Once the pain has subsided I fell asleep, hard, for the rest of the night.

All that to say, dont let anybody tell you what your body can and cannot take. There are reasons behind our pain, and this to me was a sign that I need to think of ways to cope with the pain outside the realm of these strong medications. Especially if they are going to make the pain worse. You and I both know our life with endo is about educating people who should know about what we are going through, and part of that journey is explaining things about our bodies that they need to consider when treating us. Dont keep quiet. This is your body.

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Creating a new ‘normal’

Changing Lifestyle Habits Due to Auto-Immune Disease

I asked my mom the other day ‘do you still believe everything happens for a reason?”. She hesitated as the question came out of the blue. I asked again, ‘do you think my endo is happening for a reason?’ and like every optimistic mother would say she replied “I think its a blip. I hurdle.”. I savoured those words for as long as I could and as soon as I had a good day I went out and tried to be as normal as possible. It lasted three whole hours. I had a beer, a burger, all the things I shouldnt. I lived it up.

But as luck would have it the diarrhea kicked in and the pain was endless. I walked home as quickly as I could. Yes I should not have had the beer or the burger but I wanted to be my old self. And thats when I realized, nobody can predict if this is a blip. This is the new me and I need to create a new norm. No more trying to be my old body with my old habits. This cant be a binge and purge life. I need to set new standards and new boundaries. And thats ok. Because the pendulum wont swing so far from good days to bad days. Maybe that way, when I have good days and I try to go back to the ‘good days’ me it wont be so far off from the ‘bad days’ me.

Utterly frustrated and trying to be optimistic.

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