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…

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!

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

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?

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

 

Progestin making you bloat?

One of the messages that I try to convey to my readers is that you MUST listen to your body. The other message – which is a mucher harder one to convey and certainly harder for my readers to follow through on – is to be your own advocate. Sometimes your physicians are not as educated about hormones and birth control options as they should be. But as a sufferer of endometriosis you know that birth control is the first line of defense for reducing period pain. In some cases, its used to abolish your period altogether so that by eliminating your cycle, you eliminate the pain that comes with it.

The first time I went on birth control was at the age of 14. Birth control in the late 90’s were not what they are today. I mean, for the most part it was just a bunch of hormone and a whole lotta side effects. I gained about 40 lbs and that is NOT the age you want to be feeling overweight. I stopped taking the pill out of self consciousness but eventually resumed the pill a year later simply because the pain was too unbearable. Nevertheless I have been on many forms of birth control for over 20 years. Some worked, others didnt, and sometimes they start out working but lose its efficacy over time.

After my second lap in March 2018 I was put on Visanne. Technically I was supposed to go on it before my surgery but I forgot (oops!). The idea with Visanne is that its a progestin-only oral pill, so the goal is to reduce the estrogen in your body and hence reduce the bleeding/pain and growth of endometrium (which is found in your uterus) and endometrial lesions (potentially outside of your uterine cavity). In addition, I was asked to take them continuously to abolish my cycle altogether. It didn’t work!!!! Not only did it NOT WORK but it made me feel bloated and gross and unattractive. Over the course of 6 months I was having constant endo-belly. I mean, everyday, all the time. I literally had to buy a whole new wardrobe to accommodate my wider midsection. Ladies this is not the way of life!! So I did what no patient should do… I stopped taking it and switched to the pack of old birth control pills I was taking (and loved!) before my surgery. I knew it was only a month before I was scheduled to see my new specialist so really, what could be the harm? Initially I think the results were psychosomatic but I instantly felt more human. Then, the physical symptoms followed. The bloating over the course of 1 month was dramatic. Well,.. at least it felt dramatic.

 

 

 

 

Once I was able to sit down with my new specialist (new because I moved across the country from Vancouver to Ottawa), we looked at the big picture. Not only was visanne not impacting my hormone cycle, but it was bloating me. Then you add in that I have ulcerative colitis and it paints a better picture of why my body may not be absorbing the pill format of the hormone. That’s when we brought in Mirena – a progestin-only IUD. Without going into details about the procedure or the discomfort, the fact of the matter is Mirena is doing what its supposed to do. Month over month my periods are lighter. I’ve heard it takes about 7-8 months before its completely unnoticeable but I’m not there yet. I still feel period cramping without the bleeding, but i’m only 4 months in. Moreover, the progestin in this format is isolated to my pelvic cavity which means it doesn’t have the opportunity to bind to progesterone receptors near or on my gut. I’ve had zero bloating (minus the occasional endo belly which I mitigate with my diet) for 3 months at least.

Remember. The goal is to listen to your body and challenge your doctor when you KNOW your quality of life is not optimal. Think outside the box. Read up on options and present them to your doctor. And above all, if you ever have any questions please message me. You can email me, or DM me on social media (@crampmystyleblog).

This is me today!

Our voices are much stronger when we shout together

Lately I have been able to channel my energy into my passion – an organization I am developing here in Ottawa, Canada – that allows me to put my advocacy into real action. While still in the early stages, the organization will turn into a pain center devoted to women with unresolved chronic pain, and will provide non-clinical means of mitigating pain in parallel to clinical treatments.  You can read more about it here at femade.ca (please be kind, it’s still early days!)

This is what gets me up in the morning, and what keeps me up at night. I am constantly doing research in medical journals to understand the gender-bias outcomes of pain treatment, and the gaps in medicine for diseases like fibromyalgia, a seemingly common disease. Having a science background and working in the healthcare field helps tremendously. And while the data is compelling, it’s not compassionate. So I decided, the best data I can acquire is through real people; real women suffering everyday.

Last month I revealed a pain survey and opened it up to women around the world to participate in sharing their pain journey. Within the first week I obtained 200 participants and the responses were both informative and emotional. New responses continue to flow in, and with every one it brings tears to my eyes. The message that I learned through all of this is that

our voices are much stronger when we shout together

Last week, I opened up a simple question on social media “When people ask you what the pain feels like, what do you say?”. 150 responses later, here are some of the ones that stood out (beware, some responses are graphic):

Endometriosis

  •  It’s like someone is taking a fork and scraping you from inside.
  • You know how you squeeze/wring water out of a sponge? It feels like someone is doing that to my abdomen…
  • Someone cutting my uterus out with a rusty spoon and no anaesthetic. All while holding my pelvis in a vice.

There’s a little man inside of me, and he’s angry. He wants to get out and he will stop at nothing to escape. Everyday he stabs and claws away, trying to dig himself out. But when Aunt Flow is nearing, and he can sense her presence from miles away, he calls his buddies and they use all of their strength clawing, scrapping, biting away.. they never succeed. But a week after Aunt Flo goes back to her castle, his buddies go back to their caves and he eases up a bit. But he never leaves, he never stops trying.
And don’t get me started on ovulation.. I say I feel as if I’m 10 mins away from giving birth to an elephant. And not a baby one either. A full grown elephant. The pressure in my butt and vageen, my LORD!

  • Tell them to grab their bottom lip and pull it over their head
  • Like your ovaries are being twisted and being attempted to be pulled out of your asshole

Fibromyalgia

Image may contain: one or more people and text

  • Try to imagine having bruises all over your body every single day.
  • Full on flu with body aches 24/7. Sensory issues that have made me curl into a ball, fingers in ears. Delayed responses due to brain fog.
  • it is like someone took my skin off, turned it inside out, beat it black and blue and then put it back on… the bruises are there, you just may not be able to see them…
  • Carrying 4 lead weights around 24/7 without ever being able to put them down or feel like you’ve been hit by a double-decker and bruised feeling/pain everywhere.
  • Like my muscles are being put through a meat grinder!

 I had a girlfriend who got the shingles. She said to me “I think I finally understand what you are going through, except mine will eventually stop and your pain is forever. It’s sad that even some of our best friends aren’t quite sure whether to believe us or not!

Chronic Pain (various illnesses)

  • Like someone took a baseball bat to the back of my head, then just for fun – shoved a lightning bolt through my skull. – Occipital Neuralgia
  • I tell people: let me light your leg on fire, the let me put a vice around your thighs and finally give me a cattle prod and shock you in the LB and tailbone – CRPS type II.
  • It feels like my body is at war with itself, like every part of my body is being crushed. Electrical sensations throughout my entire body and like my knees will give out any moment. –  Lupus
  • Jolts of electricity flowing through the limb while getting a 3rd degree burn after getting dosed in gasoline (think R2D2 when it got zapped crossed with any horror/ action movie where someone is going down in a ball of death inferno). Then, coat the limb in honey and lay it across an ant hill to let recover from the burn – complex regional pain syndrome (CRPS)
  • Imagine a pencil being bent to its extreme just before it breaks, now imagine that pencil is your ribs. Imagine the pain you’d feel – costochondritis
  • Imagine what it’d feel like to have your bones grinding together for the spine pain, and for the pain where the ligament meets bone I describe it as an intense stabbing pain. – Ankylosing Spondylitis

Have you ever rolled your ankle or stubbed your toe really hard and you see these white hot flashes in your eyes well that’s what my spine feels like all day long the second I get comfortable it happens again and then I get this tremendous jolt where I feel like electricity is screaming down my spine directly into my left leg the rest of the time that leg is stupid and does what it wants and parts of it you could stab with a fork and i won’t feel it at all. Also my anxiety feels like an elephant is sitting on my chest and i can’t breathe and then what is best described as a surge of feelings forcing my body to want to leap in every direction at once till it becomes so confused it stands completely still and prepares for impact. My spine is broken at T11 surgery is too risky and I had my coccyx removed because it was dislocating. I have terrible PTSD and anxiety from the car accidents that caused my life change and the chronic pain exacerbates it tremendously.

These stories are real, and there are many more out there like it. Each and every word above fuels my fire to make a change. Thank you to everyone who shared their stories with me. We will fight this fight together.

 

Endometriosis versus Erectile Dysfunction – the numbers are staggering

A lot of my posts are drafted for days while I gather stats, and mull over the most politically correct way to convey information without sounding too bias or uninformed. But every once in a while I get the motivation to write something off the cuff; something that comes from my innermost emotions and bubbles up into (what I think is) a profound piece.

This morning while making some eggs I put on a TedTalk for some daily mojo. This morning it happened to be Ashley Judd’s Ted Talk: How online abuse of women has spiraled out of control.  It is a very candid tale of women who are being called such names as C–T, Bitch, and other slanderous titles on social media, with the depictions of abuse and rape mixed in. It wasn’t the most uplifting topic per se, but her delivery was so empowering. It got me thinking about a topic I tend to gravitate to in my brain but so often have to mute my feelings on the topic depending on my audience. That topic is how women have to deal with periods and period pain, yet if this was a male dominant problem we would have found the solution centuries ago.

The reality is this. Refute me if you’d like but I’ll smash it with stats.

About 5% of men (0.5 in every 10) experience erectile dysfunction at the age of 40, and the percentages go up with age. This mere but loud 0.5 in ten men were blessed with a drug called Viagra which showed promise in the early 1990s and was launched by Pfizer in 1998. Thereafter three other comparable PDE5 inhibitor drugs have come on the market to assist with erectile dysfunction. These drugs, in varying degrees cause headaches, nausea, flushing and potentially some vision problems. These in my opinion are low concerning side effects and you’d be hard pressed to get a day off work for any of them alone, let alone together. A simple google search will show you that the erectile dysfunction treatment market was $7 Billion in 2017 and is estimated to hit $7 Billion in 2023. Sadly these are the numbers in which pharmaceutical companies, therapeutic companies and CROs are invested in. One person alone will take one oral pill half an hour before sex, and it is recommended that they should not take more than one a day. That doesn’t preclude them from taking a single pill EVERY DAY! If you add up how many pills a man might take in his lifetime, thats a hot commodity and a booming market. But it can come to a pharma company’s detriment if the price of such a drug can be prohibitive to repeat orders. Thus, drum roll please…. Pfizer now offers a generic brand for only $20 (as compared to $63 USD  for the name brand).

Ladies I cannot tell you how much this makes me mad.

Women in Canada alone, which is a fairly accurate representation of the world, suffer from a number of diseases which cause infertility. In 2009-2010 the prevalence of infertility in Canada was 15% (ladies, thats 1.5 in every 10 women) and I’m sure the numbers go up with age, although not reported. Fertility, of all the women-centric issues, gains a lot of attention from the vantage point that women are meant to be child rearing. And if we can’t accomplish the one thing we should be good at (or rather, if we are willing to spend money to rectify this issue) it creates a very expensive market for IVF and various other hormonal therapies.

But let’s take fertility off the table for a second. What if I don’t want to have children? What if I can’t have children and don’t want children? What if I want children but have decided its too much for my body? Likewise, what if I’m not ready to start having children yet?

 Around 80% of women experience period pain at some stage in their lifetime. You can suffer from period pain from your early teens right up to the menopause. Most women experience some discomfort during menstruation, especially on the first day. But in 5% to 10% of women the pain is severe enough to disrupt their life. If your mother suffered period pains, you are more likely to suffer too. In 40% of women, period pain is accompanied by premenstrual symptoms, such as bloating, tender breasts, a swollen stomach, lack of concentration, mood swings, clumsiness and tiredness. – women’s health concern

Woah ladies. Let’s back up a second here. So, 80% of women (8 in 10 women) experience period pain at some point in their lives, 5%-10% (0.5-1 in every 10 women) have pain severe enough to disrupt their lives and 40% (4 in 10 women) have period pain accompanied with a number of symptoms that should be worth taking a day off work. Yet if we take a look at medications to treat painful periods (dysmenorrhea), we have a plethora of birth control pills that alter our moods, our weight, our cycles and prohibit us from getting pregnant should we choose. Other stats have reported even higher percentages of dysmenorrhea up to 20%. twenty percent of women!! (2 in every 10 women) – thats 4 times the amount of erectile dysfunctions!!

Within those stats above, we know that certain diseases such as PCOS, Adenomyosis and Endometriosis can dramatically affect a woman’s life and certainly throw a curve ball in pregnancy. PCOS affects 6-10% of women in Canada (0.6-1 in every 10 women); Adenomyosis has no stats on prevalence because the number of misdiagnoses confound these results but the numbers are upwards of 14-44% of women; endometriosis affects 10% of women (1 in every 10 women). And while some of these women may be counted twice in these stats, the reality is there are no medications for adenomyosis and endometriosis; nothing to treat the pain, nothing to solve the root of the cause, and absolutely no cure.

Endometriosis comes with a tagline: It takes 20 years and 10 doctors to be diagnosed with endometriosis. 

Pardon me, what other disease comes with staggering stats attached to it like that?!? That’s insane.

For most women who suffer from pain and are not ready to conceive, the remedy is birth control as mentioned above. This is intended to help regulate the cycle and to reduce the symptoms, but as many writers have shown recently, the bleeding from birth control is not your period nor should it be deemed normal. Furthermore, if conception is not on the cards, surgery tends to be the gold standard for diagnosis and for treatment although NOTHING cures either of these diseases.

In 1985 a drug by the name of Lupron was released into the market for prostate cancer. Ladies… prostate cancer. We don’t have a prostate. The mechanism of action is to shut off the production of sex hormones and thus the drug was repurposed in 2001 for treatment of endometriosis. Again, similar but different than the birth control pill, the treatment is hormone based and is intended to shut down the hormones that seemingly have a play in exacerbating endometrial growths. While some women have found reprieve in this drug, many more have not. We always caution women to think about their own bodies and make informed decisions about their healthcare with their loved ones and their practitioner. If Lupron seems like the best drug for you, do it girl! The reality however, is that Lupron comes with a price; literally and figuratively. Unlike the blue pill our male counterparts can take to float their boat (if you will) with few side effects, our three injections (injections! not pills by the bedside) reportedly may cause…

these…

  • hot flashes, excessive sweats
  • gastrointestinal problems, nausea, vomiting
  • decreased libido
  • muscle or joint pain
  • weakness
  • breast tenderness/pain and/or vaginitis (infection or inflammation of the vagina)
  • emotional changes such as feeling depressed
  • headache/migraine
  • upset sleep
  • nervousness/rapid heart beat
  • edema (swelling, water retention)
  • weight gain or loss
  • skin reaction at the injection site such as itching, redness, burning, and/or swelling
  • acne
  • menstrual cramps (dysmenorrhea)

and these…

Side effects reported after the drug was available for sale
(postmarketing) include:
● convulsion
● liver problems, including serious liver injury
● serious allergic reaction (anaphylaxis and anaphylactoid)
● inflammation of the lung (interstitial lung disease)
● pituitary apoplexy; symptoms include sudden headache,
vomiting, visual changes, problem with eye muscle movement
(ophthalmoplegia), altered mental status, and sometimes
cardiovascular collapse

Ladies, holy fuck! convulsions? Liver problems? come on?!? hey if this is working for you and the side effects are minimal, power to you girl. But this is not acceptable and NO MAN WOULD ACCEPT THIS.  Lupron’s oral counterpart, Orilissa, seems to be gaining more traction by endo warriors and has way less side effects apparent. But the price tag on these medications is thousands of dollars with a full stop on how many we can have, and how long it will actually work.

The last time I went to see my doctor I had a Mirena IUD put in and this elicited all kinds of depression. I was depressed. My vagina was depressed. And forever will I feel like an android is living way up where no man has been before. Literally, I feel like the little android arms are hanging on to my cervix for dear life so not to plummet to its death through my birthing canal. It sucks, and everyone keeps telling me I’m going to love it. I am not even using it for birth control I’m using it to stop my periods and try to prevent the endo lesions on my diaphragm from poking a fucking hole in my lung. That’s a real thing! I was told it would take up to 9 months before the android would start to prove itself worthy and I was cautioned that the process would cause cramping and light bleeding. What I didn’t know was that I would have chunks of endometrial tissue excreted from my lining and out my vagina. I also had not appreciated that many women before me experienced this ’tissue issue’ with or without an IUD but with the common denominator being endo or adeno. I was not worried, I chalked it up as part of the game. Can you imagine a man being ok with chunks of tissue falling out of his dick? And thinking ‘well it’s all part of the game’ (*shrug*)??? Hell no! How did this become a new norm???

So we come full circle under the banner of what we as society have deemed acceptable for women and what men seem to take for granted. And somehow, both Ashley Judd and I focused on vaginas. I knew we were meant to be friends. LOL.

 

Divorce and Chronic Illness

During the last year I have battled with my health, and as a result have battled with loving myself. When I look in the mirror I see scars from surgeries, cellulite from poor lymphatic systems, bloated belly from something Ive eaten or just a mere buildup of poop. I see swelling and tension. I see the person I used to be with a few extra layers of stress. But part of what will make me a better Endowarrior, a better advocate for other endo warriors and ultimately a person who loves herself again, is addressing topics that Ive been harbouring for years. That buildup of stress is partly due to these psychological issues. So Im breaking them down, one by one.

***

When I was in highschool I met a boy, and he became my highschool sweetheart. Our naive child selves were blissfully in love for 8 years and then decided to get married. We held hands. We cuddled. We loved one another in every way. For 8 years we never argued (*red flag) and we came by very little stress. So when the stress hit, we didn’t know how to handle it. First, I wanted to start having babies. Lucky for him – and I say that because anyone who is married to a chef knows the chef is married to their work – we failed at getting pregnant for about a year before I went to the GP and got a referral to a fertility clinic. When the clinic asked for both of us to come in for examination I was ready, waiting in line. He, not so much. Taking time off work was the most challenging thing (in his mind) and he wasn’t all that interested in what the doctor had to say. But this was important to me, and reluctantly he came along. Results showed that he was perfectly fine to which he said ‘thank God its not on me”. Yeah,.. that happened. Let me just say it didn’t bode well with the doctor either. My results on the other hand showed a clear indication that I had endometriosis and thus an ablation surgery – the most robust surgery at the time – was to be scheduled for several months down the road.

In the meantime, my husband was accepted to be on Top Chef Canada – a reality TV series that took him away from home for 5 weeks, and delivered him back to me as a PTSD Zombie. In the past I was able to overlook his flaws, particularly those related to putting his work before me, drinking every night, and sometimes not even showing up until the wee hours of the morning. We were still young and I was able to keep making excuses for him. But once the PTSD kicked – a syndrome I read a lot about when someone is in a high intensity reality tv show like this, closed off from the world for an extended period of time, prided on winning – I was determined to get him help because it was only exacerbating these flaws. The drinking was endless. The working was like a drug. And his moods were manic. I was able to get him to see a doctor who evidently put him on a series of mood altering drugs; some of which helped and others made him an insomniac. That’s when he started coming home late, accompanied by another young lady. Unbeknownst to me, a large community of people were privy of this relationship and I was only speculating from the inside out. What fuelled my fire was my determination to have a child and start a family all the while he was galavanting around town with this other woman.

Over the course of 8 months, we struggled to find a balance of work-life and to gather tools to make us stronger as a couple – at least until the airing of the show and then perhaps the resolution of the show would give us peace. During March of 2012 the show started to air. My rockstar of a husband was kicking butt, and he was getting a bit more life into him. The anxiety and depression were still deep rooted, and I could support that as best I could, but we were challenged with having a baby which was increased by his absences yet again. A month before my surgery, and in the crux of the show airing, I woke up one morning and knew… I just knew I had had a miscarriage. In hindsight I could have, and perhaps should have, done a pregnancy test but in the depths of hollowness, that was much too logical. I felt empty. I felt lost. I felt, dehumanized. I was covered in bloody sheets. I called my husband, who didn’t seem to believe me, and didn’t rush home to be by my side. When all was said and done, he challenged me as to why I would lie about such a thing and was furious I hadn’t done a pregnancy test. This wasn’t the man I married. This Zombie – a hollow shell of the man I once loved – was challenging me on something my body knew to be true. If you have had a miscarriage, you know that immediate feeling of loss.

I was swallowed whole by the endeavour and honestly that was the straw that broke the camel’s back for me. There was only so much I could bounce back from – including the new revelation that this new girlfriend of his frequented our house during the week (late) nights when I was fast asleep and sometimes even slept over. While presumed, infidelity was not something I would tolerate but I could have worked through it if I was given the chance. Over a period of a month he continually refused to go to therapy; the last approach was when he said “You won’t want to go to therapy, you won’t want to hear what a bitch you are”. Again, I could have dealt with all of this, given the chance. But when the miscarriage was challenged I was left with nothing more to fight for.

Later that week when I insisted on accompanying him at the bar to keep tabs on his new relationship, and I drove us home late at night, he finally admitted that he didn’t want to have children. This to me was one less thing I now had to deal with. But the guilt set in. Here I was, scheduled to have a fairly invasive surgery for the purposes of fertility, and yet our journey to get pregnant had come to a permanent halt. What was I to do? I spoke to friends and family. I even spoke to my GP. It culminated into the idea that having three months – the estimated window of time I had to get pregnant following the ablation – of no period pain was worth the surgery altogether. My surgeon may have begged to differ but my body longed for a positive sensation after all of this.

During the surgery the surgeon found endometriosis on my ovaries (intrapelvic) and outside my uterus (extrapelvic) on my bladder and parts of my colon. These lesions were all cauterized with the exception of the those around the bladder as the surgeon didn’t feel comfortable in that area. I awoke from surgery struggling to comprehend how bad the endometriosis was. I wasn’t even aware endometriosis could infiltrate other organs. I thought it was purely a reproductive organ issue. I was struggling to comprehend how severe this had gotten and became immediately thankful that I had gone through with the surgery. Information back then was still truly lacking, and ablation was our best option, but with all I knew that day I was feeling accomplished.

My parents stayed with me for a few days, then my husband gleefully took over my care. I asked him why he was being so caring and he said, with a sheepish (and what I thought, selfish) voice “I like being needed”. But as the days went on and I began to gain mobility, needing him less meant things were going back to how they were before the surgery. He was at the surgery in body, but not in spirit, and nothing that I endured was impacting him whatsoever. It was only a matter of weeks before I packed my bags and left. There was nothing left to salvage. Maybe it was the endometriosis that gave me more clarity. Maybe it was the miscarriage. But I could no longer put myself responsible for his mood, his actions, his behaviours. I needed a fresh start, along with my clean uterus.

***

I moved away a few years later to a suburb of Los Angeles, taking my post-separation dog with me and started a new life. I admittedly still had a lot of endometriosis pain but it was primarily with my periods and I could mitigate the pain through Advil or basic low grade medications. Two years later Charlie (the dog) and I continued on our journey to Vancouver, residing back in Canada but still far away from my past life. It just so happened that when I wasn’t looking, I fell deeply madly in love again. My heart had had time to heal, and this man crept into my life when I least expected it. Only problem was he was in Ottawa; literally the other side of the country and where all my skeletons lay. Moving to Vancouver actually acted as some sort of a trigger for me, because two months in my body erupted with pain. I mean, earth shattering, overwhelming, everywhere pain. To this day I’m not sure how I got so lucky to be referred and accepted into BC Women’s so quickly but a specialist there was able to discern through therapy and pain pathways that over the course of 5 years the ablated endometriosis has continued to grow and spread all the way up to my diaphragm. A year later, living with this tremendously debilitating pain, I had surgery to excise (finally, to pluck everything out from the root) all of the endometriosis, but unfortunately the lesions on my diaphragm – while confirmed – were still in tact given the nature of their location. Only a thoracic surgeon can help navigate a surgery like that and it’s much more complicated. These are all things I learned after the surgery. 8 months later, I was rushed to the hospital and diagnosed with severe ulcerative colitis. I had no idea I even had it, but this episode brought it out of hiding and my life turned upside down.

My man at the hospital biding time while I heal.

From early 2017 to late 2018 my man traveled constantly to be by my side. Every surgery, every test, every missed holiday that kept me from flying home. He passed the baton back and forth with my parents. Eventually the stress of being in Vancouver alone, caring for a dog that ended up passing away before my move, it was time to be in closer proximity to my support network. I moved back to Ottawa and into my boyfriend’s abode to start our life together. While the skeletons are still here in the city, we conquer them together. While I stare at the mirror trying to remember who I am he reminds me that he loves me. And while we have chosen not to try to conceive, he provides for me in more ways than I can describe. So, as I write this I get a little bit of my life back, and hopefully shine light on the fact that my divorce was a great thing after all.

Sidenote: There has been a great deal of focus on the effects of reality tv series, and how the high intensity environment can elicit depression. In the year my husband was on Top Chef Canada, several of the contestants were shortly divorced or had moved away for sanity. My research has shown this is not isolated to cooking shows but any reality show where the contestant is trying to ‘win’ and is disconnected from friends and family for a period of time. The loss of sense of reality plays into the need for winning. If you have a loved one who has gone through this and is suffering in silence, please talk to your doctor on their behalf. With the right care, hopefully the effects can be reversed.

https://www.marieclaire.com.au/reality-tv-mental-health

https://www.cnn.com/2019/03/29/opinions/reality-stars-and-social-media-opinion-intl/index.html

Real emotions are hard to ignore

It has taken me a few days to feel ready to write this blog. Mostly because, I think I was (and am) scared of describing the intense emotions I have been feeling over the last few weeks. Let me set the stage.

In my last visit with Dr. S, he mentioned that the Visanne should have worked for me to eradicate my cycle, and given that it wasn’t there may be something related to my IBD that wasn’t allowing me to fully absorb the pill format. We decided together that 1) since the progestin bodes well with me overall and 2) I can bypass the gut with an IUD, we would try the Mirena.

A few days leading up to my implantation, I broke out in a rash with (of course) an unknown cause. I couldn’t pinpoint any new food or drug or lotion that could have caused it, and the Antihistamines weren’t working for the itching and swelling. My GP gave me 18 days worth of Prednisone which has worked well for me in the past.

So I walk into Dr. S’s office a few days later, with Prednisone circulating in my body and my immune system pretty much at an all time low. But I was dead set on getting the IUD and was strong enough to endure it. My man was with me and we were ready. I feel for my man, as he kept seeing the longest instruments being plugged in and out of my vagina, each one with a weird sensation that he could feel through the crushing of my hand in his.

First was the duck bill which all of us ladies are familiar with. Ok no big deal. Then came a tong with a gritty material to clean the inside surface of the vagina. Then a stick to measure how long the IUD string needed to be. Then came the …(*pausing the catch my breath)… long-ass needle that poked me deep into the cervix in three different locations, each one just as bad as the other. This here is the point of my whole post, because while I was prepared that this would hurt, I am not sure I was prepared for the feeling of a needle deep within my cervix, pricking holes into me. The feeling was unlike anything I had experienced before and my immediate sensation overall was violation. I use this term very delicately as I don’t want you for a second to think that my doctor did anything to elicit this emotion. In fact, for days after we talked about how gentle and caring and understanding she was throughout the whole process. But when someone is poked like that in their cervix, a place where so much pain is harbored every day through endometriosis but felt through muscle and nerves and compression, it is so … odd.. to feel a sensation provoked by something going inside of you. Truthfully the implantation of the IUD into my cervix was not an issue. Maybe because the worst was already over, or maybe because the local anaesthetic had already kicked in.

That day I bled a lot. I bled the next day. And then by the third day I could feel my body sinking into a state of real depression. I was in the depths of despair. My heart was racing, I was waking up several times a night anxious about the most ridiculous things, and unable to complete any task just from the exhaustion of the depression. For several days after the procedure I was a mess. I hot, numb, mess.

At first I thought it was the prednisone triggering the anxiety but the pharmacist I spoke to, as well as my doctor, didn’t think I would have reacted this way when prednisone sat well with me a year ago. Later I thought maybe it was the gloomy weather but contrary to the victims of seasonal affective disorder (SADs) this depression was close to suicidal. Again, I don’t speak light of these terms but part of what freaked me out was how severe and swallowing and paralyzing this depression was. I sat for days wondering how to get out of this. Luckily I was wanting to get out of this, and that was the silver lining – that I persisted to combat the depression before it swallowed me whole. I reminded my BF that the state of my mood had nothing to do with him, it was all internal and I apologized profusely for being so useless.

I had a lot of time to think about depression as a whole. How so many people fall victim to depression due to a number of stimuli – emotional, physical, or otherwise. And so many of them do not have the understanding or the support system like I have, that will lift them up off the ground when they are in their darkest. I thought a lot about hormones and how they play a big part in depression/mood. I thought about IUDs and the invasiveness of them. I thought about the trauma we put ourselves through for the hope of a better, healthier life.

While all of this felt so heavy, a cloud lifted several days later. I don’t know why. I don’t know if anything actually changed, but by the 6th day I felt a little lighter. And the next day even lighter. Out of all of this I just wanted to share my story as I am unsure whether it would resonate with anyone else, but Im putting it out there.