Tag: endometriosis

My Story with Endometriosis

The chips are laid out, the cans of pop are open. Ashlee is scrolling on the tv to find something that jumps out at her. We will be settling in for hours; just as we like it. I love these weekends, and my 15 year old anxious self needs these weekends. But this particular weekend I’m on my period and I’m constantly squirming because I’m fearful of my pad shifting in the wrong direction. I know Ashlee won’t care if I leak through my pants but I care. I don’t want that today. Do I dare put in a tampon just to be done with the shifting, knowing it’s gonna hurt? No, it’s not worth it. I’ll change my pad in an hour anyways and see what the status is. Until then I will just make sure this blanket is heavy enough to push down on my cramps for the next few hours. Thankfully Ashlee has a heating pad for me and all the PMS’ing treats I could ask for.

Those were the blissful moments of my exhausting periods. But struggling through intense period pain and heavy bleeding often meant lack of focus in school, missing a few days from work, making excuses not to go anywhere or do anything because I was crippled in the fetal position. My periods were also sporadic: a few days on, stop, 11 days on again. I was barely managing. Being 15 was challenging at the best of times but I didn’t need this. One day during class, I went to the bathroom to change my pad. I was changing them every 20 minutes and I knew my teacher was on to me. I sat there, waiting for it all to just stop. But I eventually got up, walked back to class, and fainted. Mom came to get me from school and took me to the hospital. I didn’t know what they would be able to do for me, but I trusted mom would be my voice as she always is when I’m low (even to this day). I was given some fluids to bring me back to life along with pain meds. And while I waited for a doctor to come see me, the nurse by my side said “I bet labor will be a breeze for you”. As I was swiftly carted away for more tests, the doctor uttered the word ‘endometriosis’.

I was 15 at the time, and put on birth control to help with the pain and to regulate my cycle. 15 is not a good time to put a hormonally imbalanced child on birth control. I popped that first pill and continued to pop for another 12 years. And then I was suddenly 27 and wanting to have a child. I tried. I tried and I tried but we just could not get pregnant. At that point, about a year into the fertility journey, I spoke to my doctor. He assured me that after a few more months of failed pregnancies he could refer me to a fertility specialist. When I finally saw the specialist he did his routine tests, unblocked a tube with what he called ‘champagne’, and told me I had low egg count. But all of this together still did not add up to why I could not at least get pregnant. The next logical step was to explore endometriosis – the first time in 15 years I’d heard this word again – through surgery. At the age of 29 he was able to officially diagnose me with stage III endometriosis, and had ablated the lesions off my ovaries, bladder and colon. But ablation simply means shaving the disease down. I was given 3 months to conceive – which we did not – and then it all started growing back again.

For the next 6 years I dealt with menstrual pain that eventually turned into chronic pain. I was unable to do anything with success. I lived on my own at the time, after battling a divorce, and had moved across the country from Ottawa (to LA and then) to Vancouver. By the time I arrived in Vancouver the pain had ‘spread’ from my pelvic area to what felt like my ribs. A referral went into the BC Women’s Centre for Pelvic Pain and Endometriosis. It took a while to see a doctor there but I was eventually able to have a very thorough examination done and she requested I start with a progestin-only pill to see if it stopped some of the pain. More pills! And it didn’t work. I felt like I was unable to breath, constantly clutching my ribs. We agreed: Surgery. But this time she performed an excision surgery to remove the lesions from its root. This would hopefully get rid of the endometriosis or at least buy me several years. I woke up from that surgery and she told me she removed endometriosis from my ovary – with an ovarian suspension – my bladder, colon, and yes, my diaphragm. The recovery was intense, and after about a week she had to remove a string that was keeping my left ovary suspended in the air. And it bought me time. It bought me… a few months. And then something turned again. The periods were excruciating. The pain was intense. What happened? Surely one of the best surgeons in the world would perform a perfect surgery to remove my endometriosis. But that’s the thing with endometriosis. It is invisible as we say in the community. 

We didn’t know any of this at the time but as I got in to see one of the leading specialists in Ottawa upon my move back to the city, adhesions were forming on the surgical sites. Without being able to see it, or go back in without causing more harm, we had to navigate our way through the pain using a variety of medications. I was first put on oral progestin which in theory should have reduced the estrogen fuelling the disease. It didn’t work. I then had the Mirena IUD inserted into my uterus to see whether localized progestin would be more productive. The little arm on the IUD began poking into my side so not only did it NOT work, but it was causing an irritating pain in my side, literally. Finally, I was put on Orilissa, a GnRH antagonist which is supposed to slow the production of sex hormones which could also be feeding the endometriosis. I hate the thought of these drugs but I wasn’t ready for another surgery and this was just to buy me some time while potentially giving me some relief. Sadly, not even the fine print warned me about the suicidal thoughts that a small percentage of people experience with this medication. I have never been suicidal before, nor was I about to act on any of these thoughts, but they were dark! I mean, dark! I stopped the medication immediately and then we were full swing surgery mode. And… then the pandemic hit and surgeries – especially gynaecological ones – were put on the back burner. I waited 8 long and grueling months until I finally said I can’t do this anymore. What felt like endometriosis on my diaphragm was dreadfully hard to manage at this point. I received my surgery date for October 9, 2020. When I woke up from that surgery I had pain and discomfort like you would not believe. Luckily I was able to go home the same night so I could endure a morphine-hazed sleep in the comfort of my own bed, next to my fiance.

My first walk to the mailbox after my surgery

Two days later the surgeon called to let me know that while we are still waiting on pathology (which most came back negative, thank goodness), there were some – but not a lot of – unusual spots on my diaphragm, a cyst on my right ovary, and he had to spend hours removing my bowel and left ovary from my abdominal wall which were fused by adhesions. To be fair the state of the endometriosis was not nearly as bad as I had anticipated but the overall state of my insides were scary. Maybe not scary to a surgeon who does this day in and day out, but scary for me. That level of messed-up-ness could not be seen on any scans, could not be helped with any amount of pain meds, and was literally something I second guessed for months and months. Now, all I can do is hope that with the determination I have to keep moving, I can prevent as many adhesions as I can. With the diet changes and the yoga, and the vitamins and the epsom salt baths and the meditation and the … hopes and dreams of living a normal life again…maybe I can buy myself a few more years until I need another surgery again. Who knows? It’s invisible after all. 

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Why I chose not to have children

When I was a naive young adult I longed to be a mother. I longed to love a child – or children – like my mother did for us. She put her whole life into her kids, and she was happy doing it. She was the movie-esque perfect mother who did everything for her kids. I knew I could do that for my own children, and I knew I was destined for it. Apart from the fact that we had just gotten married in 2010, I wanted to start having children as soon as possible. Society was telling me it was the logical next step, and my age was appropriate to responsibility take care of a child. We both had good jobs, this baby would have tremendously loving grandparents, and we had a beautiful home to raise them in with a backyard full of mature trees and cuddly dogs.

Painful periods were always just that; a monthly process of pushing through bloody underwear, dirty sheets, fainting spells and outrageous pain. But it was just that. Painful periods never crept into any other box in my life. It never insinuated surgery or infertility. The discussions with my doctor were always around birth control until we were ready to have kids. Until WE were ready to have kids. Not when my body was ready to have kids.

We tried getting pregnant very early on in our marriage. The first few months of negative pregnancy tests were chalked up as residual birth control. The next few months were chalked up to wrong timing of intercourse during the month. The next couple of months were chalked up to stress; the stress of it all. But as a year went by, and no sign of pregnancy I started worrying. I finally spoke to my family doctor about it, and he assured me that with more time he would be able to refer me to a fertility doctor. With begging and pleading, that time came. I saw a doctor at the Ottawa Fertility Clinic – a very reputable man with a lovely bedside manner. He did the usual blood work, and then some of the more rigorous tests. I showed to have a blocked fallopian tube which he fixed with the champagne method. I still remember the agony of that test. He also concluded that I had a very low egg count. But none of this would truly explain the infertility. The fact was with all roads pointing to endometriosis, I was in need of a surgery to officially diagnose me. His little test in a cup concluded he was of no threat to this process, this really was on me. My first surgery – an ablation – gave a positive finding for stage 3 endometriosis.

He and I split. Not for fertility reasons; reasons much more dramatic than that I suppose. But I went ahead with that ablation because I earned it. I was given three months of hope to get pregnant – something I knew secretly that I was not going to endeavour – but it also gave me three months of pain-free periods; a luxury at the time. Unbeknownst to me, the endometriosis would grow back silently.

In that time, I sold my house, left my job for a new one in Los Angeles, packed my bags and started a new life. I was blissfully happy and in turn, when I least expected it, I fell in love. Hard. And then my endometriosis came back behind the scenes. When Greg and I first started dating we had all the difficult discussions, including the ones about babies. In those years, feeling the endometriosis growing back, and still feeling the shock of negative pregnancy tests for almost a year and a half, it was an easy discussion: He would prefer not to have any more children at his age, and I would prefer not to put that kind of stress on my body. What I didn’t know at the time was that my endometriosis was going to fight back hard. A year into our relationship – as I just set foot back into Canada and in a new job in Vancouver (all alone) – my endometriosis came to life. No longer was I looking at pelvic pain during my periods, I was facing chronic pain, worsened by periods, and growth all the way up to my diaphragm. My body was telling me something. It was warning me that this was going to be an ongoing uphill battle. While excision surgery removed the endometriosis I was in need of another surgery two years later. And yet again, while I am being told that proper surgery will potentially remove the endometriosis for good, I made my decision.

I made my decision when I met the man of my dreams. I made my decision when I was diagnosed with severe ulcerative colitis in 2017. I made my decision when I had an ovarian suspension during my 2018 surgery. I made my decision when I was in chronic debilitating pain (for two years) that a lesser man would have left me for. I made my decision when I took Orilissa. I made my decision when we closed the cottage early as the cold weather put me into a flare. I made my decision as I lay on the OR table in 2020; being told the next surgery could very likely be a hysterectomy.

I made the decision that my body was not well enough to carry a baby. And I made the decision that having a perfect life – without a baby – was more important to me than struggling to get pregnant. I have been told by very close people in my life that I should adopt. And to that I say “for those of you who have been able to conceive – be it that you loved being pregnant or you hated it – you will never long for the ability to have a biological child. I do not need a child in my life; I long for the ability to carry a child in my belly. But it would be a risk to both me and the baby”.

So I chose not to have a child.

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The Chair Technique

I was able to hold it together for so long, with the endometriosis pain running my life, and the new diagnosis of an immune disease changing my life forever. I could hold it together while I was alone in Vancouver, but then I moved. I moved a day late because of a pancreatitis flare that held me up in Vancouver for an extra day in the hospital, but I managed – with the seamless help of my mother – to get all of my belongings into some duffle bags and onto the plane. I had a hard time settling in at first, but I was excited for a new chapter in my life: back in Ottawa, living with my boyfriend.

The settling in part was easy enough to do in the condo, but I wasnt settling in with my new bill of ‘health’. We were two entities struggling to survive in the same body and I just felt emotionally and mentally unwell all the time. So I decided to seek therapy. Just a sounding board for those times when I feel real deep emotions that would scare my family if I uttered them out loud. Just for those times when I wanted to say ‘this fucking sucks’ without being a wet blanket to those around me.

The first session was really hard. The therapist was so sweet and understanding. She did a lot of active listening which I was attuned to from my days of counceling, and while I knew what her ‘tricks’ were, I fell into them because I just needed to talk. I went through a lot of kleenex that day. Before the session ended she suggested that next week we do the chair exercise. I was apprehensive but eager.

As I walked into the office that next week I noticed there was a chair facing the couch that I sit on. The chair was not for the therapist. She let me get comfortable, asked me how I was feeling and then said: “Ok, so I want you to sit there, as you are. Imagine your illness(es) are sitting in the chair in front of you” – wow. I think I started crying right then and there. What a powerful image. She continued “If you could say anything to your illnesses what would you say?”.

“Why are you here?”

“I’m so tired, I just need you to give me a damn break”

“I don’t know how to live with you. I just need some space. I need to feel my body as it used to be without you taking over every inch of it”.

As the moments progressed I got deeper and deeper with my emotions. I got real. I got angry and sad, and every other emotional color of the rainbow. I was exhausted by the end of it. But it wasn’t over. “Now, I want you to physically get up and sit in the other chair”. I did.

She continued with a slow calm voice. “I want you to pretend you are now your illness”. What would you say to YOU?” (**crying as I’m typing here, sorry. This brings up so many emotions).

“It’s not my fault.”

“I’m trying to co-exist with you.”

“I didn’t choose you either but here we are.”

Hearing those compassionate words come out of my mouth, role playing as what I always refer to as the teenager endometriosis and the toddler brother ulcerative colitis I was all of a sudden out of words. I felt sorrow. Sorrow for the diseases that are trying to just ‘be’. How could I feel so deeply for something I – just a few moments ago – loathed completely?

She let me sit there, swallowing all of my words. Digesting the emotions and making them real. She finally said “next time when you look into the mirror, imagine that both of you are in there, co-existing in the same body. Look at yourself with admiration, not anger. Look at yourself as a new you, with entities that need to love one another, not hate one another.”

I took that with me, and still to this day try to remind myself of the chair technique. I wanted to share this with you as its not something only a psychiatrist can perform. You can do this too. Be aware of your words and the emotions. be aware of the way your body changes shape after you’ve finished the conversation. And then, remind yourself that your body is something to love, not loath.

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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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Appendicitis? That’s a new one

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

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

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

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

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

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

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

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

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How I described pain as endometrial lesions spread throughout my body

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

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

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

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

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

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

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

crampmystyle18@gmail.com

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The math doesn’t add up

I don’t know if anyone reads blogs anymore; certainly with Instagram and Twitter taking the main stage for social media. But, to me this is the only place I can fully capture the emotions that I endure throughout these new stages of my journey. I’m struggling with the words though because things are not adding up. Right when I think I have found an ounce of hope, something else throws me off.

When Visanne didnt work the next step was to insert the Mirena IUD. When it was inserted last March (nearly 11 months ago now), I was told that the intent was to normalize my hormones, remove a ‘cycle’ and stop the bleeding. No more ups and downs of hormones, no more intense crashes of hormone and therefore no stage for endometriosis to play on. According to Mayo clinic:

The device is a T-shaped plastic frame that’s inserted into the uterus, where it releases a type of the hormone progestin. To prevent pregnancy, Mirena: Thickens mucus in the cervix to stop sperm from reaching or fertilizing an egg. Thins the lining of the uterus and partially suppresses ovulation.”

Aside from the horrible emotional and physical setbacks I’ve experienced with my IUD, moving ahead it certainly did appear to drastically decrease (almost stop) the bleeding but I have always felt a cycle in place. So maybe it was kind of working? One thing was for sure though. The Gabapentin was NOT working. It was absolutely not doing anything for the pain (though it did seem to help with the leg spasms at night). Everything came to a head in December when Dr. Singh called and I felt like I had run out of tools. The list of treatments that I had exhausted well outrun the list of options I had yet to try. And then there it was. A plan A and a plan B. I’ll give to Singh that he never laid it out quite so plainly but this is how my brain interpreted it. Plan A: go on Orilissa for 3-6 months to determine if estrogen, and thereby the endometriosis, was impacting the pain. Plan B: VATS. It was the first time in the last three years that I’ve felt secure about Orilissa and despite the public bashing I proceed to do with Lupron I was ok to take the plunge with Orilissa. The first week was hell. The second week was hell-er and it induced a period. Weeks 3 and 4 are a blur but I an safely say the profound effects of Orilissa snuck up on me when I one day woke up on my left side – something that was impossible to do when I was in chronic pain before Orilissa – and had an a-ha moment that something was different. 4 nights of this in a row and I could safely chalk it up to Orilissa.

I did the unthinkable: I shared my success story on social media. Others who are taking Orilissa chimed in with their stories too and several women DM’ed me about their fears about trying the drug. “Its not for everyone” I told them, while secretly encouraging them to take the plunge. And then… my worst fear. I got a period. I bleeding period. A ‘run to the bathroom with diarrhea’ period. A ‘holy hell my uterus’ period. And on top of that – that, being something I havent experienced in nearly two years – my diaphragm came back. My shoulder tip pain came back. My fatigue came back. My mood swings came back.

One step forward and two steps back.

Some things are just not adding up. Mirena was intended to thin my lining and help reduce my cycle, bleeding and pain. Orilissa was intended to block estrogen and therefore reduce potential spreading and growth of new endo lesions. Together, I should be a pretty pain free, bleed free spot. So why, why 11 and 2 months in am I dealing with the most all-over-body excruciating pain I’ve had in years? The math isnt adding up.

I’m here. I’m showing up consistently. But its starting to get harder and harder to hide the anger. My therapist wants me to work through the anger. She says it impacts the way I deal with the pain and blocks the ability to face it head on. But the reality is that the anger pushes away the depression. Cus depression is a slippery slope. Once I get on that slide I may not be able to find a ladder. So tell me, how does one cope with all these let downs?

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I told them ‘morphine makes me worse’

Some would say I have been dealt a shitty hand in health. And those who know me would likely tell you I have a fairly positive predisposition no matter what gets thrown at me. There is not much by way of my medical journey that gets me mad. Upset, yes, but mad… not that often. I only get truly mad when a doctor or a nurse challenges me about my own body because what I tell them is counter to what the science dictates. And when I have to prove to someone that I am right by demonstrating through pain, it just makes me madder.

Let me back up. Back in 2007 I had my first laparoscopic surgery. It was to remove gallstones that we knew had been there for quite a few years and some would argue that I was too young to be having as much pain as I said I had. Those details don’t matter. What matters is that during my recovery I was administered demerol, an opioid that was quite routine for post operative pain. The rest of the story is anecdotal as I went under respiratory arrest and apparently was starting to go blue. The next thing I remember, 4 nurses and a doctor were huddled around me while I feverishly tried to crawl my way out of bed. That was the first and last time I was ever given demerol. For years I wore a medic-alert bracelet in case of any emergency where a pain medication would be given while I was incapacitated. The next two surgeries I had for endometriosis removal was (2012; 2018) under the care of my mother who ensured that post-op I wasn’t given anything stronger than a tic tac. So you can imagine how fun recovery was for both of those.

But 5 years later, circa summer 2018 my life was flipped upside down. I have been in and out of various hospitals over the last year, with many incidences of morphine administration. As many patients who suffer chronic illness know all too well, morphine tends to be the standard protocol for anyone presenting with advanced pain in emerg. What they dont tell you is that morphine may be administered without your consent. In July 2018 I was accompanied to the hospital by my boyfriend who had never taken me to emerg before. They gave me morphine and I was writhing in extreme pain. This was the first of my morphine journey. When they tried to give me a second dose of morphine my boyfriend refused on my behalf, having seen what the first dose already put me through. Later that weekend, he and I scratched our heads trying to understand why I had the reaction to morphine. There seemed to be nothing out there talking about exacerbated pain with opioid administration. Much to my chagrin, I was back in emerg exactly a month later, this time via an ambulance, half out of my wits and in no condition to explain the reaction I get to morphine. Different hospital, different day, same outcome. Writhing in pain, cramped up in fetal position, in sweats. I was in the hospital for 10 straight days, with my mother who had flown across Canada to be with me, and hooked to a drip of hydromorphone the whole time. By the time I had some energy revived in me, I was puzzled why the hydromorphone was sitting just fine, yet its sister ‘morphine’ nearly killed me twice. And lest we forget Demerol which literally nearly killed me.  I had no more fight left in me that week but something told me this wouldn’t be the last of my encounter with morphine.

I’ll be honest, the struggles with the hospital system was enough to deter me going back to emerg time and time again. I have endured several bouts of pancreatitis in the comfort of my own home just to avoid the rigamarole of the hospital waiting rooms, puzzled looks on doctor’s faces, blood test after blood test, and empty promises.  I reserve the hospital for times in which I cannot breathe, Im puking and pooping at the same time, or none of the opioids I have in my medicine cabinet are working. The latter is what happened this week. My endometriosis sitting on my diaphragm decided to flare. No rhyme or reason, just something that happened. On Saturday afternoon I called it. Time to go to emerg. Long story short I was not given any pain meds because my boyfriend lovingly contested the morphine they wanted to give me. Instead I was sent home with oral hydromorphone (which by the way does nothing for me. Only the drip has an effect). Anyways, the doctor was nice enough to ask me to come back in Sunday morning and skip the line so I could get a redo on my blood work. The theory was that perhaps pancreatic enzymes would show a pancreatitis flare over time. When we went back in the blood work didn’t show anything but this time, after no reprieve from the hydromorphone I gave in to the morphine. My boyfriend warned me, so its not like he agreed with my decision here. Nonetheless I was given 1mg (one fricken child sized dose) of morphine and my body was in agony. I barely could breathe, I was clenching on to my abdomen like my insides were about to fall out. You should have seen the looks on all their faces. This was exactly what we told me, but I think they needed to see it for themselves. I’ll say this. I still don’t think they believed me because they offered me a second dose which I refused before they could even get the question out of their mouths. Instead they gave me a drip of hydromorphone which unfortunately exacerbated the effects of the morphine. The damage had been done.

Me after a morphine-induced breakdown. Look how swollen my left eye is.

I came home and cried myself to sleep in a ‘drunken’ haze from the morphine-induced pain. This morning, as things always look different in the day, I started to think long and hard about my reaction to opioids. I remembered that once in Vancouver, alone, I took some tylenol 3s I had on hand for my endometriosis pain and it too caused this same reaction. There is no way I am the only one who has this reaction. The more I started asking around, the more I was starting to get some head nods in my direction from other patients who have the same response. Today its being coined as Opioid-Induced Hyperplasia. I could tie it up in a nice bow there, as this will undoubtably solve a lot of the mystery for some of you. If you’re content with this theory, I am so glad I could help. For me unfortunately this still doesn’t solve my problem. You see part of the theory behind opioid-induced hyperplasia is that your body becomes sensitive (not tolerant) to opioids because of overuse or over expose to opioids. This doesn’t fit the bill for me. Certainly when I was 20-something recovering from my gallbladder being removed I had never touched an opioid before in my life. And in between 2007 and 2018 I had not taken any opioids like they describe in the link above. They do say there may be a genetic component but sheesh, if you look at my background, I am the only person in my family with endometriosis (I’m talking ONLY) and I’m the only one person in my family with Ulcerative Colitis or any form of IBD. So if I were to hedge a bet I’d say genetics is not the answer here.

To avoid going down a rabbit hole of chemical compounds to prove the similarities and differences between opioids, lets just say the science doesn’t make sense. Demerol and morphine should not be eliciting similar hyperalgesia/hyperplasia and it would be assumed that hydromorphone would show similar outcomes as hydromorphone is converted into morphine during metabolism. My hope, however, is to spread the word about this and hopefully meet others who have experienced similar reactions.

References:

A comprehensive review of opioid-induced hyperalgesia

Opioid-Induced Hyperalgesia: An Emerging Treatment Challenge

 

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