Tag: endometriosis treatment

Central Sensitization from Endometriosis

There is a process that happens in the body overtime when a threat is persistent. Ideally, something causing a threat to the body would be temporary, and the body is equipped to send pain signals and therefore protect the body from whatever is causing the pain. Think about how quickly your brain tells you to remove your hand from a hot element. That is a perfect example of a short lasting threat, and a quick neural response from the brain to your hand. But what if that threat doesn’t go away? How does your brain make up for the long lasting stimulus in order to protect you?

Think about endometriosis. You have foreign lesions growing within the body, that cause pain and relay this pain to the brain. In some cases – say over several years of menstrual cramps – your body gets used to the same intensity of pain over and over again, such that your body stops reacting to it (or rather, becomes tolerant of it). Whatever doesn’t kill you will make you stronger, right? But in some cases, the pain signal occurring over and over again can send a different message to your brain; one that says this is a very dangerous threat and we need to up our anti. This in turn worsens the pain. Research has shown that as these signals remain turned on, the pain system remains wound up. In parallel when the body detects a threat it recruits what are known as inflammatory factors, biological elements that physically create inflammation as a protective barrier from the threat. This can be seen as the cause of the pain but is yet another way the body is protecting itself. Taking anti-inflammatory medications usually will cause more pain as the swelling decreases and the pain becomes more prevalent. A bit of a catch 22, I know.

We as patients should be offered excision surgery from an expert surgeon as a first line of defence. It truly is the only way to officially diagnose, and thoroughly remove the disease, aka the threat. So why is it that pain can persist long after the threat has been removed, and in many cases, in areas that were never affected by the disease? There are two things at play here. Areas that are diseased may press on nerves to cause referred pain signals to different parts of the body. A great example is when abdominal endometriosis causes right shoulder tip pain. This is how other parts of the body can seem like they are affected but are simply a byproduct of the pain pathways. The persistent pain though, is a mechanism that is worth spending some time on as it may never get corrected without the right attention to it. This process – persistent pain long after the threat has been removed – is part of a mechanism called Central Sensitization.

Ongoing nociceptor activation generates an afferent bombardment of noxious information into the dorsal horn of the spinal cord. This process, in turn, induces structural and functional changes throughout the spinal cord and more rostral structures, which ultimately lead to central sensitization and evoked exaggerated repossess to peripheral stimuli.

In order to continue to protect you from endometriosis for all these years, the brain and the spinal cord have built more adrenaline sensors to detect threatening circumstances. Adrenaline production is often a sign that the body is in danger. And through persistence, more of the neurons in the brain started paying more attention to the threat. So now you have more neurons paying attention, and more sensors listening and reacting to the pain. What this means is that pain message from the stimulus to the brain have overreacted because they are overly sensitive to this chronic disease, and now the protective mechanisms from the brain to the stimulus are now overcharged. As a double whammy, your muscles have also learned over the years – as a product of these pain signals – to remain turned on or clenched in order to again, protect you from the pain. All of those changes that the body has made in order to keep you safe are now numb (or dumb) to the fact that the threat has been removed during surgery and continue to do what they have done for years.

Remember we talked about referred pain as well. The inflammation and the visceral pain also lead to muscle tightening in these referred areas, one of which is the pelvic floor. Through persistence of ongoing clenching of the pelvis, the pelvic floor continues this hyperactivity even after the endometriosis is removed and could result in pelvic floor dysfunction.

Going into the weeds a little bit for those of you who are science crazy: the mechanism I talk about above with the pelvic floor is the perfect environments to generate or activate what are called myoafascial trigger points (MTrPs). These trigger points can generate all over the body but are commonly found on the pelvic floor where they may refer pain to other sensitive areas such as the the vagina, urethra, and all the way up to the lower back. We now know that MTrPs are common in those with endometriosis and interstitial cystitis among other gynecological, genitourinary and gastrointestinal conditions. While still very understudied, more research is showing that these MTrPs exacerbate the pain inherent to these conditions making the pain that much worse.

Ok lets come back out of the weeds. So you have just had your excision surgery and within a few short weeks you start feeling certain kinds of tension and pain; some you had before and others seem to be a reaction to the surgery but you know the endo and adhesions are gone. With the right doctor, you should be cognizant of this pain and willing to work on a few different therapeutic mechanisms to see if you can reverse them.

One line of treatment is through myofascial release, working directly with those myofascial trigger points through gentle massage, deep pressure massage, stretching, and breathing techniques to focus on subtle but important movements of the body. This may seem familiar to any of you seeing a pelvic floor therapist or an osteopathic doctor. Simply being attuned to how your pelvic floor moves with your ribs and your breath can make a drastic difference in calming the nerves. And giving your body the opportunity to be calm also gives it the opportunity to start replacing those highly sensitive sensors with more normal (low sensitivity; high threshold) sensors.

The second line of treatment is with injection therapy, using either wet or dry needles directly into the muscle to force them to relax. Additionally, your specialist may use the same technique using a local anesthetic to further blunt the ability to transmit pain through this neural pathway. This technique is usually only done when the pain can be localized to a nerve or pathway rather than dispersed general pain.

The third line of treatments is though neuromodulators which can also be used to dampen the pain signals associated with central sensitization. Gabapentin and Amitriptyline are two of the more common pharmaceuticals being used for this purpose.

Hopefully through one or a combination of treatments your body will allow you to get to a point where the body will act appropriately to new and threatening stimuli and will eventually register that the previous stimuli has been removed. Just remember that it took years for your body to get to this point, so patience is critical. If you have any questions as you follow me through my central sensitization reversal journey please reach out!

References:

Understanding Pain, Live well again (rights reserved. No Link available)

New Developments in the pharmacotherapy of neuropathic chronic pelvic pain

Pharmacological Modulation of the pain-related brain activity during normal and central sensitization states in humans

Related Chronic pelvic pain and endometriosis to signs of sensitization and myofascial pain and dysfunction

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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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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?

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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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To Lupron or not to Lupron

A big decision whether to begin Lupron injections

Im not sure why I thought I would be able to go to sleep tonight without writing this blog. So much has happened today and while in part this is to help others struggling through this big decision, this is also here to help me disseminate all the information that was thrown at me.

Back in March I went through a Laporoscopic excision surgery with Dr. X at the BC Women’s Pain and Endometriosis center here in Vancouver. She was able to remove endometriosis from my colon, bladder, ribs and cauterize what she could find on my diaphragm, leaving the implants within my diaphragm intact. During the surgery she also did an ovarian suspension on my left ovary and cleaned out my left tube. Before and after surgery I was instructed to try Visanne to both reduce the endometrial pain through skipping my periods, but to also thin my lining with progestin (estrogen depletion).

Three months post surgery I was rendered helpless in pain from upper abdominal pain. Since I have ulcerative colitis which is a relatively new diagnosis, my village of doctors first had to rule out digestive issues. My CRP levels were good, Calprotectin levels normal, a small blip of liver enzymes and pancreatic enzymes which resumed to normal, and clear CT/Xray/MRcp ruled out digestive problems. The more we ruled out UC the more we pointed toward Endo. I called to make a follow up appointment with my endo specialist and it took 2 months before I could see her. Today was the big day…

**

IMG_0436Leading up the appointment I was starting to get wrist/joint pain to the extreme measure. I have had to take three breaks in writing this post already because of it. I wear a gimpy brace to ensure I dont move them around too much. My left ovary is on fire. My lungs, exacerbated by the fires on the west, are struggling to fill. And my leg pain is coming back much like before the surgery – the kind that feels like sciatica. I am on limited NSAIDs due to the intestinal bleeding that naproxen can cause in UC patients – the one drug that does help my endo pain – and I am on a single dose of tramacet since it knocks me right out so I am reduced to taking this at night only.

**

At my appointment Dr. X reviewed my surgery results, the scans from the last two months, and asked me about my pain. She told me that the wrist and joint pain could be from estrogen depletion as a result of the Visanne. Since my endo pain in my lower parts is cyclic and I have break through bleeding the visanne is not working. Her suggestion was (quite quickly I might add) to put me on three months of LUPRON DEPOT to determine whether the pain is in fact endo. This drug would deplete my estrogen completely and put me into chemical menopause. If it works we know it is endo and we can either stay on Lupron or she can refer me to a doctor who can excise the diaphragmatic endo. But to commit to VATS right away is both dangerous and not smart. She left me to look at a brochure while she conducted an ultrasound on another patient, came back to ask if things seemed reasonable as a course of action and spent some time going over how this would work: I would order the medication and have it sent to her office, for an injection to be administered once a month for three months. In addition, to counter the side effects she would also prescribe an estrogen patch twice a week, and some biologic to take orally everyday. These additional medications are called ‘add backs’ because they add back what Lupron will deplete from my body.

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Before you know it I was signing up for the medication and promising to come back in a month for the follow up. I asked her politely if I could get the referral to Dr. Sony Singh – the doctor she recommended I ultimately see for the VATS – as I am moving to Ottawa where he is located. Unfortunately the response was more of a ‘when the time comes we can call him’ rather than a ‘sure lets see if he can take over’. So it seems I walked away with the commitment to use Lupron as a diagnostic to rule in the endo and move forward with one of two options in three months from now.

When I got home, I thought, ‘How in hell did this happen so quickly? I have already read up on how nasty this drug is. Maybe there is an upside??’ Sadly out of nearly 40 messages compiled in response to my pleas 2 were positive/neutral outcomes while the other 38 were HELL NO!

While I am still (kind of) weighing out the pros and cons I am determined to get a second and third opinion from other endo specialists. Thank you to all of you who shared your stories with me over the last 12 hours; they have helped my clarity and to regain my strength. For those of you who have suffered long and hard from this medication – due to the lack of options that are available for endometriosis – I will help to fight this fight for you. #endowarriors til the end!

http://www.hormonesmatter.com/lupron-poor-diagnostic-endometriosis/

 

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What does my child have to do with this?

Why so many of us dont want to talk about Endometriosis

I really hesitated in writing this article for fear that there might be backlash. But I have discovered recently that the more I am honest with my posts, the more people are speaking out. So with the risk of making some of you angry, the trade off is to make more of you feel less alone.

When I finally reached out on social media I found that nobody – with the exception of a few powerful endosisters who have found their way – were not keen on commenting on posts or making themselves obvious sufferers of the disease. This corroborates the sentiment of several endometriosis R&D companies who say they feel lack of support from endometriosis patients as we dont stand up and fight for the cause. Instead, we as patients evidently become quite defensive about new drugs and gimmicky solutions that ‘may’ help our pain or furthermore, ‘cure’ our endometriosis. But it cant be because of periods. For Christ Sake the IBD community is VERY vocal and you cant get us to shut up about poop talk. What sets us apart?

When I was 14 I was loosely diagnosed with a disease called endometriosis – a disease which would cause ‘heavy and painful periods’. I was an anomaly as I later found out, because here are the lame stats that go along with the disease:

The average diagnosis takes about eight to 10 years. During that time, women typically go through seven to 10 doctors. Yet, endometriosis is quite common. An estimated one in 10 women have endometriosis. That’s an estimated 176 million women worldwide. – Danielle d’Entremont, CBC radio interview 

No other disease that I know of comes with a statistic of failure to diagnose, unheard cries for help, and years of life altering pain; permanent damage to the body and the ego. While I continued the journey of “heavy and painful periods” from my teens into my 20s, I came to realize why women dont like to speak out about this disease, despite the 1 in 10. In order to explain, I will use my own story.

I was 27 years old, married, with a house and two dogs – a good life. My husband at the time was a chef, and I was home alone most of the time. What I wanted more in life, unknowing of its challenges, was a baby. I wanted to be pregnant, I wanted to raise this child and I wanted what every woman was supposed to want – a family. We tried, and tried, … and tried. Looking back I should have bought pregnancy tests in bulk. Failed month after month made me skeptical of why this could be happening. We werent old, we didnt do drugs, we werent sick. I spoke with my family doctor who told me that it could be a number of things preventing me from getting pregnant but that the only way I could get proper care was to have 2 years of failed pregnancy as a trigger to refer me to a fertility doctor. I did what any woman would do – I lied. While it had only been shy of a year since we had started trying to get pregnant I told the doctor it had been well over two years. That was that, papers were signed and I waited to see the specialist. The first appointment with the fertility doctor was on my own (as most things were back then but thats a whole other story). We looked at blood work, habits, body weight, etc. The second visit was with my husband, then a follow up to let him know his swimmers were in good condition. He was off the hook. Which meant more focus on me. An internal untrasound revealed that I had very low egg count, and one blocked Fallopian tube. If any of you haven’t had the ‘champagne’ before, its a procure where they stick a needle along the inside of your Fallopian tube and push through it a bubbly fluid that should leak through the other end if the tube is functioning. Mine… was blocked. How do they unblock it you ask? They push the fluid through at a higher rate and hope it dislodges whatever the f%&k is blocking it. I cried like a child! Despite this quick fix, months went by without getting pregnant and the doctor finally pulled the trigger on doing a laporascopic surgery to determine and remove the endometriosis. In this case they book the OR for 1 full hour so that if any endometrial tissue is there, they remove it at the same time since they are already inside me. When I woke up from surgery the doctor told me I had stage 2 endometriosis and that he removed tissue from my ovaries but he didnt feel comfortable removing the tissue from my bladder. Note, the surgery was an excision surgery, not an ablation which didnt exist at the time.

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In the months leading up to the surgery, I will admit to the public for the first time ever, I had left my husband and knew I wasnt trying to get pregnant anymore but decided to go ahead with the surgery in silence in hopes it would give me a few years of pain-free life. During my consult with the surgeon I asked him what was to follow. He said the surgery would give me a 3 month window to get pregnant and then it would all start growing back again. I delicately asked if he would continue to care for me even if I gave up on trying to conceive, and his answer was,… No. In his practice, the only concern was conception; not endometriosis management. I went along in silence for 5 more years, with steady pain, hoping that was the last of my endo, until I couldnt anymore. The endo came back last Summer with full force and I cried with mercy to thousands of women who would listen to my story online. I needed to find an answer to a fairly aggressive endometriosis growth rate (bladder, colon, ribs and diaphragm) from those who had been through the snakes and ladders of various drugs and surgeries.

Over the last year I have shared my story and I have met some of the most wonderful women who suffer (and have suffered) in silence either 1) over their infertility or 2) their struggle to get a diagnosis because they have no desire to get pregnant. In both cases, women feel ashamed of their bodies, their lives, their inability to DO or WANT the one thing we as women are supposed to do – bear children. On one hand we fear the shame of telling our families and friends that our bodies are too sick to bear children. On the other hand, we feel scared and threatened that we will be judged for not wanting to provide a life to this world. In both cases, we lose. And when there is a loss, it is too hard to talk about it. This is why, we women with endometriosis (PCOS, adenomyosis and several other women-only diseases) suffer together – in silence.

There is no treatment, there is no cure, there is no screening method and there are very few specialists who know how to treat us. My goal, as a writer and an endowarrior, is to help bring awareness to the disease so that women who have daily pain and anguish can soon be recognised as strong, courageous, and fearless.

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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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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

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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!).

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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

My body is attacking itself

Having multiple autoimmune diseases

I was born a fantastically healthy baby, with no jaundice, asthma, or abnormalities that would see me through to adulthood. Until I was 14 and the much raved about menstrual periods started.  I was overjoyed by the fact that I was part of the club that I didnt bother mentioning to anyone else the pain and flow that accompanied mine. At the age of 14, I was sent to the hospital with period pain and was pre-diagnosed by a brilliant doctor, a disease called Endometriosis. At the time we didnt know much about it but several years later the industry learned that it was an autoimmune disease. Up until recently it was believed that endometriosis was endometrial tissue that escaped back inside the body – outside the uterus – onto organs. But now, we have learned that endometriosis is endometrial- LIKE tissue that forms on organs out of bloody nowhere, and acts like your endometrium – blood, pain and all. WTF!

Starting around my 25th birthday I started having very rare, intense pain in my upper abdomen. It would strike out of nowhere, often accompanied with alcohol, and would send me to the hospital. The pain was followed by throwing up, blacking out, and waking up with a doctor telling me I drank to much and sent me home. This happened about once a year for 4 years. Doctors came up with everything from alcoholism to anxiety to phantom pains. Nah…. didnt add up.

Just shy of 2018 I was diagnosed with severe ulcerative colitis. Ok this one threw me. I mean I had no idea and apparently I have had it for years. I just assumed the diarrhea and wrenching pain was from my endo. Ive since been treated with Entyvio and so far so good. Well,… until last week.

Right after Canada day – no alcohol in site – my upper abdominal pain kicked back in. I had remnants of it when they tried to give me a 5-asa back in November. And it kind of feels like my diaphragmatic endo. But its not. I assure you. This pain has lasted 9 days and counting.

At first they thought it was pancreatitis but they ruled that out with a CT Scan. They are still exploring PSC which they think they found back in November. That should be ruled out on Thursday with an MRcp. And its not my gallbladder which was taken out back in 2007 which later was hypothesized was due to endo and not gallstones.

Which organ is next? Why is my body attacking itself? What is the cause and are they all linked? IS there one cure to fix it all?

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