Tag: diaphragmatic endometriosis

How They Diagnosed Me With Diaphragmatic Endometriosis

As I navigate this journey I realize that there are so many people out there who are trying to navigate the same waters. So, I wanted to take a step back and share how I was diagnosed with thoracic/diaphragmatic endometriosis in case there are others who need this right now.

I had an ablation in 2012 putting me at the age of 29. I was trying to conceive with my then husband – to no avail – for a few years so the doctor who ultimately did my ablation was a fertility doctor who back then also treated endometriosis. An ablation as you may well know is like trimming the hairs without plucking out the root, thereby leaving the disease in tact. I was told at the time that I would have 3 months (3 MONTHS!) of a window to conceive before the endo would proliferate again. (Sidebar: I divorced the SOB so no conception for me). The doc told me that I had stage 3 endometriosis but he brought it down to stage 1. Whatever.

As the story goes, the endometriosis grew back and I carried on normalizing my pain like so many of us do. The pain was always predominantly in my pelvic cavity which is where I also had severe period pains, so my body – for the better part of my life – was so attuned to tightening the muscles in that area when it was the time of the month, to protect me from caving. I suppose it became second nature for my body to operate this way, I stopped taking notice to the pain I was in, and just ‘carried on’. I was in Ottawa, Ontario (Canada) originally and decided to pack my bags and move to LA. Los Angeles was the best time of my life, and I met some of the most wonderful people, saw the most wonderful things, ate the most glorious meals, ran every day and loved life to the fullest. Was I still in pain? Yes, but I stopped caring, which tells you that the pain was (cyclic and) manageable; not yet chronic. When I was in LA for those two years I had probably 5 bouts of bronchitis due to the air quality. They say that stressors like this can bring about chronic pain. They say it can be multiple small attacks to the system or one large one (like a car accident, for instance) that can all of a sudden be the tipping point for a body. In any case, I didn’t think much of it until I was forced to move back to Canada once Trump came into power in 2016. January 2017 I was in the car driving to Vancouver, British Columbia to start my new job, care for my dying dog, live on my own in a gloomy city while doing a long distance relationship across the country. The stress began to pile up and perhaps that was my tipping point rather than the bronchitis; who knows? I was situated in early January and by March 2017 I was in dire pain. It did in fact happen that quickly. I went from not noticing the pain, to the pain being chronic and intense. It was the same as the pain I’d been feeling before, but in addition to the pelvic cavity it was also below my ribs. I didn’t know much about the locations that endometriosis could be found but based on my own intuition I supposed a gynaecologist would be the safest place to start.

I had what felt like sciatica on my left side, ovaries on fire on both sides, and the same dreadful pain all the way up to my ribs. This time, it wasn‘t cyclic, though the cycle made it worse.

Call it the right place at the right time. I went to a walk-in clinic to speak to a physician and explain that the best care I could receive would be through the BC Women’s Pelvic Pain clinic where the doctors there would understand endometriosis. It was a combination of prior history of endometriosis + this doctor not knowing much about endometriosis + the desire to help me. While I sat in his office, the doctor submitted a referral to the BC Women’s and an appointment to meet Dr. X a few WEEKS thereafter. It was magical.

This is the part I want to spend time on though.

Physician Assessment: When I met with Dr. X I described the pain in the precise locations which seemed to all be connected in her mind. She had me lay on a bed, and with one of her hands under my left butt cheek, she poked my butt with her finger in the exact location I had the ‘sciatica’. According to her, the ovary can be fused to the pelvic wall which is innervated with a lot of nerves and can then emulate ‘sciatica’. Cool. Onto the ribs….

So imagine your abdomen divided into 9 parts. Draw a large square from the base of your pubic bone up to your ribs. Closing that square, divide into three equal parts horizontally and three equal parts vertically. Now imagine that your circulator system (the free flowing fluids) has a natural flow clockwise. Confused yet? Ok I have drawn an image below to help explain.

With this in mind, Dr. X gently tapped in each of these squares to better examine the painful parts as well as the muscle tension. In theory, the painful squares should be the ones coloured in above since the circulatory system would allow the endometriosis to spread in this clockwise fashion; the right diaphragm being afflicted before the left. Is this a theory? Sure is but it worked in my favor. I have included some citations below if you want to read more on this. Turns out my pain points followed this theory exactly. This was the very beginning of the notion that I had thoracic endometriosis with implication of the diaphragm being impacted.

Diagnosis: I did the rigamarole with pain meds and birth control but nothing worked and we quickly fast forwarded to surgery. In March 2018 I had a laparoscopic endometrial excision surgery by Dr. X where she stated I was at stage 3 but now down to stage 2. Again, whatever. The reason being was that she was able to excise the lesions throughout my pelvic cavity, colon, and bladder – with a left ovarian suspension – and was able to visualize AND cauterize the lesions on the diaphragm. I, like you, wonder why she didn’t excise them but that’s for another day. Ultimately, I had visual proof there was endometriosis on my diaphragm.

Removal: To add to the complications, Dr. X was not able to excise from the thoracic cavity so I was referred to Dr. S here in Ottawa (yes I moved back to Ottawa – for love, not for Dr. S), so that it could be treated and managed properly. Keeping in mind that the cauterization kept the endo at bay but didn’t remove it, the pain persisted over time and punctuated into a more robust surgery in Oct 2020. There, oddly enough, we didn’t see any endometriosis on the diaphragm which either means the suspicious spots previously cauterized were done very thoroughly or it wasnt endo. Without pathology we can never be sure. But, to add a silver lining to the story: whatever it was that was causing me RIGHT diaphragm pain is no longer there. Do I care if it was diaphragmatic endo or basically a bundle of pain caused by other factors? Not in the least.

Management: Throughout the course of management – as I intended to delay the surgery to allow Dr. S to be as productive as possible when the time for surgery arrived, and not to stir any trouble with the angry colon – we did a number of things. I was first on visanne which really bloated me. It didn’t, however, impact my cycle or the pain. One theory was that having ulcerative colitis may impact the absorption of oral medications through the gut. So, at that point I had the Mirena IUD inserted. Initially the IUD didn’t do much so we paired it with visanne to see if we could get a combo effect. Eventually I dropped the visanne, and after more than a year, also had the IUD removed as it was poking me inside. A few months leading up the removal of the IUD, I also explored Orilissa but sadly it was eliciting suicidal thoughts (not tendencies, just thoughts) so I stopped immediately. For several months leading up to the surgery I went back on standard birth control and skipped my periods.

Now following surgery I am still skipping my periods with birth control, and managing the central sensitization with amitriptyline. I also have a nerve block administered a few weeks after my surgery to mitigate this new nerve shooting I was experiencing. For now I will carry on this way, and slowly start strengthening my body. Until then, Im going to binge on Netflix :).

Questions and comments are always welcome!

by Categories: endometriosis journeyTags: , , , , , , , 3 Comments

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

by Categories: endometriosis journeyTags: , , , , , , , , Leave a comment

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.

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , Leave a comment

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?

—

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.

by Categories: endometriosis journeyTags: , , , , , , , , , , , , , , , 1 Comment

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.
by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , Leave a comment

My abdomen is not happy

Undiagnosed abdominal pain

I dont know how to begin this blog article other than to really start at the beginning of this journey. I thought for sure this wouldnt be worthy of an article as I just assumed this pain would go away through a fart, or a bowel movement, or maybe by way of antibiotics. But … I thought wrong. Now, 13 days later I think it might be worth sharing this journey for others who may have experienced (or are experiencing something similar).

The Beginning…

On Monday July 2, the holiday given to us Canadians for Canada day, I woke up utterly exhausted. I had nursed perhaps all of one beer the day before, so it wasnt the alcohol. I chalked it up to too much sun. But selfishly I knew there was something else going on as I started crying at the littlest of things. I didnt know how to explain what I was feeling… just ‘off’. As the day progressed I started feeling this dull pain in my abdomen – below and between my ribs, above my stomach. It got worse and worse, to the point where I was keeling over screaming in agony. This resulted in my first hospital visit of many. To the ER we went, where I saw a doctor who ordered blood work, and came back an hour later to discharge me with ‘we dont see anything abnormal. It could be your UC flaring up because your biologics may need to be administered in shorter intervals’.

Day 2 (Tuesday July 3)

By the time I was discharged it was midnight on Monday, and there was not much sleep to be had that night. In the following morning, I was preparing myself to fly back from Ottawa to Vancouver (where I currently call home). I was partly excited because I was scheduled for my next Entyvio infusion the next day and I had high hopes that perhaps the Emerg doctor was right, and the infusion would fix it all. The pain continued to escalate throughout the day, and just as I called my Uber to take me to the airport I started to get really nauseous. I made it to the airport… but there was no way I could get on that flight. I was distressed. Nauseous. Sweating. In agony. So I quickly got on the phone and called the Innomar Clinic to see if I could instead have my Entyvio infusion administered in Ottawa ASAP. They were so compassionate and understanding. Somehow they were able to get me in for first thing the next morning, so I crawled back to my apartment in Ottawa and crawled under the sheets hoping for tomorrow.

Day 3 (Wednesday July 4)

The morning arrived, with no shortage of pain, and off to the clinic

IMG_0106

I went. The nurses at the clinic were just so warm and friendly. I knew this was going to be the ticket to my good health again. After the infusion I felt rather tired, much like I had felt after the first few loading doses (this was dose 5!!) so I waited and waited for the Entyvio to melt away this pain.

Just melt it into an oblivion like it never happened. A blip in the road. Yeah that didnt happen. A whole day went by, no relief of symptoms, and just plain fatigue. I was knocked out for the better part of the day.

Day 4 (Thursday July 5)

Thursday morning at the crack of dawn, my boyfriend was already scheduled to fly from Ottawa to Vancouver to visit me, so I was smart enough to reschedule my flight to be with him. He was going to see me after all, so I should probably be there :). We got on the plane; things were feeling ok. I managed to read some of my book, have a latte to warm me up, I may have snuck in a 10min snooze in there somewhere. But by the third hour I was in agony. That dull abdo pain was back. No nausea thank goodness though I could have dealt with some fatigue at that point to knock me out for awhile.

Once we landed, I think the air pressure did make things feel a bit better to be honest, but only marginally. I was happy to be on the ground, in the city with all my specialists. When I landed however, I had a VM from my GI saying my calprotectin levels appeared to be normal, and she was headed off on vacation for 2 weeks, but to be sure to go to the ER if the pain persisted. Persisted it did! Off to Emerg we went again. This time I had more blood work, a ECG, and a CT scan done almost right away. They took be upstairs to become an inpatient which was great news because it makes it easier to order and expedite any additional tests. I was told that my lipases were high – which means pancreas issues. But my liver enzymes and CRP were low, so that was good. I was ordered more saline drip and I just rested as best I could. The fecal occult test showed positive for some blood but nothing alarming.

In the middle of the night the Resident Doctor who I had met briefly in conjunction with the ER doctor on call woke me up to tell me that the blood work and the CT scan both indicated pancreatitis. No idea what caused it yet, but that in the morning there would be additional tests to see where to go from here. So I slept.

Day 4 – the day it all went downhill (Friday July 6)

In the morning, around 8:30am, the doctors were on rotation, visiting all the floors. I was in a random room on the TB floor due to shortage of beds, but surprisingly they made it to me quite early. This was the day I met Dr. *Kid. Dr. Kid, the resident doctor and another female doctor walked in, with Dr. Kid leading the pack. He told me that the blood work and the CT scan both came back negative… (wait, didnt I just get told 8 hours ago that… oh nevermind, what do I know?!?). He said based on this information he was discharging me. I asked him why they would be so keen to let me go when I still had dyer pain, to which he responded “what were your expectations coming in here?” … lets just say I let that one go or else Dr. Kid would be walking out without an eye.

Somewhere between my room and the nurse’s desk Dr. Kid decided to extend my stay for one more night to keep an eye on me, however, my saline drip expired somewhere around 2pm, which was administered as the fasted bolus I have ever experienced and my IV had to be changed because it burst the vein. Great. Needless to say neither I or the nurses knew the plan but I knew I had to ween myself off the Morphine cus those would be unavailable soon too. The pain persisted and so did my anger. I struggled to understand why he wouldnt send me to a gyno or a GI (I asked BTW and his response was ‘im an internal medicine doc, there isnt anything they know that I wouldnt know’… yeah).

For some reason I was unable to have a bowel movement since I arrived at the hospital which was a nice change for me, as opposed to the diarrhea I was having at home. But I was expected to give a stool sample so I asked Greg to get me a soy latte for some assistance. A few hours later I had a tiny one, and it was like green mucousy sludge. So gross.

*Hiding Dr. Kid’s real name for his own protection.

Day 5 (Saturday July 7)

I had managed to stay in the hospital for 2 full nights which was unexpected to me. I knew my fate was coming to an end though. Luckily my BF was in the room by the time Dr. Kid showed up, alone. His tone changed significantly knowing that my body guard was there in the room with me. He told me that there was a slight elevation of my liver enzymes yesterday but it had since come back down, as well as my lipases. So with that information he was discharging me. Oh, and he said he would give me a courtesy handful of hydromorphone to help me manage for a few days.

The hospital, despite me being a UC patient, was giving me a regular diet so half the items were unworthy of my colon (*eye rolling*). When we got home, for the fun of it really, we decided to go on a soup-based diet to see if it would effect the pain. This is one thing that is recommended for pancreatitis. It did! Well,… let me preface that. The Bone-broth and broth based soup diet didnt spike the pain like solid foods did, so I continued with this. No solid foods, no alcohol or caffeine. Just a ton of bone broth. We even cut regular soups with the bone broth for added health benefits.

No bowel movement this day. Seems the morphine was making me constipated despite their lack of effect on the pain itself.

Day 6 (Sunday July 8 – aka my birthday)

I woke that morning to a beautiful bouquet of flowers and a hilarious birthday card. In light of it being my birthday I said ‘mind over matter’ and decided today was MY day. symptom wise, I was still feeling a lot of pain, and I continued with the soup diet. I added banana for potassium, and also started taking Vitamin D and Calcium just to make sure I didnt pass out from malnutrition.

Day 7 (Monday July 9)

Same as the day before. I dont think there was anything different in terms of pain, but I started to notice that my bowels were super gurgly and any bowel movement I had was dark green and loose like bile.

Day 8 (Tuesday July 10)

Something crazy happened that day. In the morning, Dr. Kid called me to ask me how I was doing. As soon as I told him I wasnt feeling any better, his arrogance sort of melted away. He thought for sure he would be right about this one. Again, his response was that none of the dots were connecting and hopefully I could manage on my own at home. To which I replied “yes I have a few other doctors interested in my case so I think thats my next step”. … I caution you…. never say this to a doctor you like. Only to the ones you want to knock down a few pegs. A few hours later Dr. Kid called me back and asked if I could come to his office the next day for a full blood work up. I was game.

That same day I was put in touch with a doctor in the US who is friends with my boss. This doctor has seen it all, and done it all. With him, he spent dedicated time over the phone to understand my full history. In a matter of minutes he told me ‘you need to make sure the doctors are listening to you. Without taking your whole history into account they wont find the problem”. He told me I deserved to be heard, and concluded that his guess would be my diaphragmatic endo was now spreading to my liver and other organs OR adhesions affecting my stomach and bowels. This call changed my life in an instant.

Day 9 (Wednesday July 11)

I hadnt slept much that night; partly due to pain and partly thinking about the things the other doctor had told me to consider. Needless to say, while I was kind of excited to see what Dr. Kid had to say to me today I wasnt overly ambitious that he was going to investigate anything further. With my GI still on holiday and my Endo specialist not involved yet, Dr. Kid brought me in to do a breathing test, to feel my belly, and then went through my symptoms again. No real change. No real interest. But for his own ego he decided to do two things: order a full blood workup and prescribe me Panto to see if this was acid involved.

I went to get the blood work done, and left the cortisol test for the next morning as I was scheduled for my MRI the next morning.

Day 10 (Thursday July 12)

I was scheduled to have this MRI last week but when I missed my flight in Ottawa I called to reschedule. This MRI was booked months ago to confirm or rule out my PSC from back in November when they say ‘possible signs of positive PSC’. In light of recent events they also looked at my pancreas (I think). I fasted for 6 hours leading up to the test, and then upon arrival was asked to drink pineapple juice. Something about pineapple juice plumping up the bile ducts. After the MRI was done I think I was in pain from the breathing exercises so we rushed over to complete my cortisol blood work and then went home. I crashed. Hard.

Staying on the soup diet, my stool was still regular but dark green. I also started getting nauseous.

Day 11 (Friday July 13 aka the end of Dr. Kid)

On Friday morning I knew there was going to be 1 of 2 things happening. Either Dr. Kid was going to call me and tell me there was something terribly wrong OR he was going to call me and tell me I was an idiot and nothing was wrong. The result was somewhere in the middle. He called in the late afternoon, just before the weekend, to let me know that my blood work looked good but he didnt have the MRI results yet. I take a pause because this is where us spoonies differ from the rest of the world.

The rest of the world: Oh my goodness Im so glad your blood work is fine. I can breathe now.

Spoonies: Im still in pain….

So thats how Friday sort of ended, with me utterly frustrated, and those around me feeling a bit more relieved. Needless to say, the pain persisted, and the weekend was coming (ie I didnt have to try to fit in work during the day and was free to sleep).

I also decided that if Dr. Kid was insistent it wasnt anything concerning my organs, I was gonna go back to eating solid foods. the soup diet was fun and all, but making me rather light headed. I had gluten free dairy free mac and cheese!!

Day 12 and 13 (Saturday July 14 and Sunday July 15)

The last two days I have been sleeping a lot! In fact yesterday morning I woke up at 9am, went back to sleep at 10:30am and slept until 4pm. I napped for six hours!!! Today has been better insofar as sleeping goes. I have had much more stamina but the pain has been pretty consistent. I just didnt want to waste the day. Mind over matter I guess.

On Friday I decided the Panto wasnt working so I stopped taking it (upon guidance from Dr. Kid of course). The drug is known to change your gut microbiome and I could tell it was making my bowel movements more of a clay color – no longer the bile green – and terribly hard. Ive also been having 3-4 bowel movements a day the last two days though they are of good texture (LOL!).

IMG_0144

The current plan is to see if either/both my GI or/and my Endo specialist can assist me into looking at what could be causing this pain. In an ideal world they will refer me to someone who can handle my complicated story – possibly someone who knows how to deal with thoracic endo!

I promise to keep you apprised as I learn more. For now, Im off to enjoy the rest of this Sunday.

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , 1 Comment

A period after 8 months

Inducing a menstrual period with Visanne

Here is a new one ladies – so I had my follow up with the Endo surgeon several (like 9) weeks after my excision surgery. She surprised me with an internal ultrasound (yay me!!) to see if the spots she worked on were healing well. The ovarian suspension looked great, but when she did the two finger test my uterus cried out like a beast! She told me that while the surgery was successful, the endometrium was still much too thick. Typically to be in good condition – ie pain free – post excision the endometrium needs to be 1-2cm thick and mine is currently 6-7cm. In order to get the endometrium thinned out, I need to reduce the estrogen levels in my body and thus switch back on to Visanne. Note that I asked her very clearly about the bone density loss findings in many new studies and her response was simply that “we only know about long term damage, so for now we know there wont be any short term side effect”. I shrug in submission. I mean what can one actually say to that!?!

Anyways…. so I took my prescription to the pharmacy, ate a Visanne pill the next day and BOOM, I started my period. And I mean, like really heavy. TMI Alert: we are talking blood clots all the way, and period pain! But the reality is, I dont have nearly as much pain as what I had pre-surgery AND the only spot that really hurts is on my diaphragm where she wasnt able to remove the endo completely.

The OTHER fun side effect I wish I knew more about is that – just like for the last 20 years with endo – I am having a lot of period poops. My science brain is thinking, “I guess I can rule out that the poops were from endo being on my colon”. So thats something I guess. I have also read that estrogen changes can induce diarrhea (sorry this is by far one of my most gruesome posts).

And there you have it. Not much else to say other than I thought I had missed having my periods but I really dont!

by Categories: endometriosis journeyTags: , , , , , , , Leave a comment

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!

 

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , Leave a comment

Skipping my period – the journey

Skipping Menstrual Periods Because of Endometrial Pain

After seeing an Endometriosis specialist in July, it was clear that my pain pathway was undeniable, and that the endometriosis was in fact back with a vengeance. Not only is my endo on both tubes, but the left tube is so sticky that is affecting my left sciatic nerve. This helps to explain the painful friction start to feel after only 10min of walking. Poking on my sciatic nerve through my butt cheek made me wince so hard, and in fact was a confirmatory moment in the re-diagnosis. Moreover, the endo IS on my diaphragm! This was the main reason I sought out to be treated at the clinic – to confirm I wasnt insane and to get some help with pain management.

I cried a lot before my appointment because I was worried I would not be taken seriously due to the fact that I am not trying to have a baby. I didnt want to be dismissed, and I certainly did not want the only option to be Lupron or other strong medications that would give me more side effects. But to my surprise the appointment was amazing. The doctor was very knowledgeable and looked into explaining all of the pain symptoms I am experiencing by triggering several places along the pain pathway. This helped us indicate which areas on the abdomen we problematic, how high up the endo is, and how severe the uterus is being affected.

The first step in treatment is to take my birth control continuously for three months to see if this reduces the pain by eliminating my periods. I was warned that spotting might occur, and pain may accompany, but that it would likely be due to the endometrium thinning out (which exposes the veins). The first few weeks went ok. By my calculations I was effectively able to skip one menstrual period without any hiccups. But about three weeks in I started bleeding; slow at first and then became clear that is was a period and not spotting. I went back and calculating when I was supposed to have my period just to make sure I wasnt just screwing up the math, but I confirmed this was not when I was supposed to bleed. The bleeding persisted – at full capacity – for two straight weeks, with tons of abdominal and diaphragmatic pain, and absurd facial acne. I was bed ridden for two whole days, and for the first time in my life, threw up because of the pain severity. (Throwing up in restaurant bathrooms is the worst!). And I was unable to clear my skin with any store-bought or natural products.

Finally a break… for 4 days, with a significant reduction in the acne, but the bleeding has continued again. I called the clinic nurse and she said I could either stop the pill for a few days to let my body bleed it out but this might create a lot of pain. OR I could wait a few more days and call back to switch to a stronger pill. On one hand I dont want to stop the pill because that might erase the 1.5 months I just put in. On the other hand I am already on a strong pill so what will more hormone do to me? Yes, I want the pain and bleeding to go away but sue me,… I also dont want to grow a beard. Is that so wrong?

I have chosen to continue on the pill and will call the nurse in 3 more days. Still bleeding, still in pain, the acne is back, but cant bring myself to stop now.

by Categories: endometriosis journeyTags: , , , , , , , , , Leave a comment