What ‘fighting for care’ really means

It has been a day. I mean it has really been a mind-boggling day. It started early this morning as my alarm clock went off and my body was in so much pain. More precisely, my lower back was broken and I was not going to be able to manage without my cane. As usual I set the heating pad on medium and laid flat on it for 10min before crawling desperately out of bed. I showered, praised the lord I didn’t have to wash my hair, made my coffee and then settled into work. Yes I work from home and this particular day I was able to to work from my couch.

At 9:30am my rheumatologist called to go over my symptoms as one theory is the entyvio/vedolizumab is causing the back pain. While there is one publication indicating as much, these patients had progressive arthritis which I seemingly do not have. Needless to say we kinda parted ways at this point. Before hanging up I let them know about my MRI of the lower back – ordered by a doctor out in Toronto who thinks I might have a compression – and she asked me about what else is going on with my health. We talked about the neuropathy symptoms and the MRI of the brain which ruled out MS. She said ‘it looks like a doctor referred you to a neurologist specifically to rule out MS and it has been, so you don’t have a queued consult anymore”. Reasonably so, I went into a tailspin because that was the one appointment I had been holding out for.

I immediately got on the phone with my GP and left a message about this supposed canceled (or completed) consult and that without a new neuropathy-specific referral we would never get to the bottom of this. My GP and I are generally on the same page about this so I was not worried he would push back.

While I was trying not to get heated, I was hammering away at work, listening to a patient story about ordering one of Invitae’s genetic tests and she said “genetics doesn’t have to be used as confirmatory it can also be used as exploratory”. Here I was, working nearly three years for one of the best diagnostic genetics companies in the WORLD, and I had not looked to see what I could utilize. I got online to Invitae.com and downloaded the requisition form for the Alnylam hTTR no-charge sponsor program which I felt was finally time to order. I emailed it to my GP and offered to do the leg work if he wouldn’t mind submitting it for me.

Hours later, anticipating my period and pushing back some oncoming muscle twitches, I decided to use one last tool in my box. I decided to text (yes this is his preferred method of contact) the doctor in Toronto who ordered me the last MRI (which is on Sunday!!!). I asked if it was possible to see a neurologist. Immediately he said YES. But what I had not realized was, he thought I was asking to see HIM. Sadly, with the pandemic and not being able to tolerate long car rides, I asked if he could refer me to a local neurologist. He said “it would take 1-3 years”, and that was that. Nearing the late afternoon I chalked the day up as a whirlwind and was hoping I’d have a callback or an email in my inbox by the morning.

Logging on to another work session, the hospital called me again. This time it wasn’t the automated appointment reminder and it wasn’t the rheumatologist. ‘Hi Ms Gandhi’ she began, “I am so sorry but we had to cancel your appointment for Feb 24th but Dr. M would like to instead see you over zoom on Jan 20th instead. I know it’s last minute”. … “That’s fine I,… sorry… what doctor is this for? I mean… what type of doctor?”. Confused was putting it lightly. “Oh this is for your neurologist”.

“I don’t have a neurologist” I said politely.

“Oh, sorry I missed that this is your first appointment with him. Is it still ok?”

Shocked and elated I of course said yes, got on my patient portal to confirm and sat in shock for about 10min. I called my GP back and spoke to a human (my favourite lovely human who always helps me out) and told her (the admin) what had happened. We agreed to put the genetic test and the pain meds on hold until we had some data to go on.

What a day.

The Shittery -volume 1

I haven’t written a post in so long, and honestly, I was afraid that with everything going on I would just be a wet blanket. The fact is I was going in circles trying to figure out how my gut health – something I have worked so hard on – could all go down the tubes after an excision surgery. And now, 11 months later, I’m more confused than I ever was because of the last three days. But let me back up.

In October of 2020 I had a 6 hour laparoscopic surgery to remove endometriosis and adhesions from the span of my ovaries to my lungs. Luckily the endometrial growth was minimal but extensive work was done on my bowels and left ovary to remove them both from the abdominal wall by way of adhesions. Within a day of my recovery I could feel the difference; the way I was able to expand my lungs, the way I could move and twist, the way I had more energy than before. I used very few hydromorphone pills and was able to walk and move around to the best of my abilities. The only hiccup I had was a fussy nerve along the side of my pelvic wall which we fixed with a nerve block. The goal from this point onward was to switch me off of Gabapentin (which I was on after my 2018 surgery for central sensitization) and try me on amitriptyline which my doctor has seen better results with. As for endometriosis and pain, I was to continue on birth control (oral contraceptive of combination hormone) on a continuous basis so to skip my periods, reduce the pain and potentially limit the estrogen that fuels the (re)growth of endometriosis. You can pause on that one if you’d like. I did.

About 4-5 weeks after my surgery, while still recovering slowly at home, I noticed I was having difficulty with bowel movements. Not only were things not moving well, but I wasn’t able to push anything out. So began the whirlwind trial and error of laxatives, stool softeners, fibre, enemas and suppositories. My GI reluctantly gave in to my request for more tests and much to my dismay everything kept showing up normal. On the contrary my symptoms were getting worse AND I was starting to have reduced mobility because of the laxatives. Around the 5 month mark I threw my hands in the air and stopped everything. I turned to my osteopath and my naturopath after realizing that both my GI and my endo specialist were not able to help (or… not optimistic in finding a solution). I have to give my surgeon credit, he took me off the amitriptyline because of its constipating effects and was more than happy to learn about SIBO (see next paragraph).

For those who are naysayers on the natural therapies you can skip this part but basically my osteopath could conclude I had a lazy bowel and my naturopath was able to conclude with a gold standard breath test that I did in fact have SIBO.

For those of you who prefer the more medical flavor, I had a defecography which showed ‘stasis {was} severe’ and a 1.3cm rectocele (a hernia that protrudes from the rectum into the vagina). Yay me! But none of this, in conjunction with some blood work was anything to cause alarm. I proceeded with the natural path so that I felt like I was doing something.

SIBO treatment is still ongoing at this point BUT in phase one – opening the biofilms – my flatulence decreased significantly after 5 weeks. Into the second phase – eradication of the bad bacteria – I started to regain complete mobility. COMPLETE MOBILITY! That was worth celebrating!! But I did not regain the ability to literally poop. So, I started taking a suppository every day and this was enough to poop out the most glorious poop. Once a day. Regular. Nicely shaped and sized. I mean this was something worth sharing LOL. Anyways… now we come full circle. See, aside from all the changes that were made to my body after the surgery the one thing that remained consistent was… the birth control pill. I don’t want to lose you here because at this point I am perplexed and fairly confident I will never know the right answer to any of this but …

A few days ago, around the 11 month mark of all this fecal chaos, I talked to my naturopath again about the PMS, boob swelling, cravings, and discharge – what feels like a period – minus the bleeding. She said sometimes the body’s own estrogen levels can combat the effects of the birth control pill. That same day I felt like I was bleeding but I wasn’t. I did what any insane person would do; I stopped the pill to just allow myself to have a period once and for all. That same day, I had the urge to poop and I was able to poop: 2 things I have not experienced in ELEVEL MONTHS!!!! What did I do? I texted my mom, my sister, my fiance…. I danced. The next day and the next day? same thing. Urgency and poop.

Is it the prostaglandins? Is it the naturally constipating effects of the pill? Is it the certain levels of hormone that are being maintained with the pill? I found this quote today which kinda sums it all up:

Studies have shown that oral contraceptives negatively impact gut flora, and estrogen metabolism. This can lead to weight loss resistance, increased risk of irritable bowel syndrome, depression and anxiety, and unresolved digestive issues.

Nutrition Rewired

In the end, this is an n of 3 days, and I have shifty data points to base all of this on. But all that to say, I thought back to why I was on birth control in the first place. Yes, of course to minimize the pain (dysmenorrhea) from my periods; no not as a method of birth control; but mostly because of the theory that it could prevent new or existing growth of endometrial lesions. I posted the question on social media today and there was a resounding NO IT DOESN’T PREVENT ENDO BECAUSE:

  • The theory only works on the retrograde menstruation theory.
  • Endometriosis fuels itself by producing its own estrogen.
  • Many individuals on birth control had growth of lesions between surgeries.
  • Menopausal and post menopausal individuals who inherently have lower estrogen levels maintain their existing endometriosis and may produce a new form of endometriosis by way of hormone replacement therapy (HRT).

Complicated, right? Well I have one more week until I speak with my gynaecologist but Im thinking this might be an excuse to do my own little case study off the pill (I’m secretly jumping for joy right now).

Thanks for tuning in to my shittery:)

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. 

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.

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.

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

Cannabis for chronic pelvic pain

I wanted to do a post about medical marijuana as I think this is such an important topic. The legalization of these products has opened the eyes of individuals who would not normally smoke a joint – let’s say – to explore the effects of cannabis on pain, as these products are becoming more accepted and easier to obtain. Likewise, those skilled users are sharing their experiences more and more on social media. I am not one of those people. In fact the thought of smoking a joint doesn’t jive with me and never has. The handful of times I’ve smoked a joint in my life I’ve laughed my head off, been paranoid about leaving my house, and have consumed more chocolate than I thought possible. Each time I have woken up in the morning feeling rough. But I got to a point recently where it was either opioids or nothing.

Our cannabis journey began nearly two years ago when Greg was talking to his cousin about having trouble staying asleep. She told us her husband found tinctures at an Indian reserve down the street that he now relies on for good sleep. We went there on the way home and picked up two bottles; one labeled ‘sleep’ (mostly comprised of THC) and one labeled ‘pain’ (mostly CBD). Gotta say, we stopped taking them after a while because we ended up titrating 5 drops worth and still felt nothing. No high, no sleep inducement, nothing. And that’s when it ended.

And then – two years later – I got to a point in my health journey where NOTHING was helping my pain. Morphine makes my pain worse, hydromorphone mostly only works in injection form, I am limited to NSAIDS due to ulcerative colitis, and nothing else even touches it. Tramadol became my go to, and then I decided I really didn’t want my go-to to be an addictive opioid (a drug chemically formulated in a lab and resembles that of codeine). That’s when I decided it was time to pick this ol’ cannabis thing back up again.

I have a few really good friends in the industry who were able to give me the push I needed to get started. And the scientist in me made sure I was doing this in a fairly comparative and repeatable way. With that I made some notes of what the goal was:

  • I needed something that would take away my pain in those moments where I would normally reach for tramadol
  • I needed something that would not make me too high as anxiety and insomnia are not in the cards
  • I needed something that wouldn’t hinder me during the work hours. That meant if I needed to take something for pain during the day (like I do with Naproxen) it cannot make me high, cloudy or stupid. Likewise if I take something at night, it cannot carry through to the morning when I need to work.

Phase 1: Research

My research told me that there were two things I needed to be aware of: 1) the CBD and THC content, as well as 2) the strain (Indica vs Sativa). Studies were showing that those with pain experienced psychoactive and pain alleviating effects from THC, but high pain alleviating affects with CBD (and only a slight high). Anecdotal evidence was also stating that indica was a more calming strain that helped with sleep, whereas sativa tended to bring about more active highs. So with that in mind I decided to start with Indica and low doses of THC and CBD.

Phase 2: Medium THC, Indica

Edibles (2.5mg THC, 0mg CBD: I started with something tasty and low dose: a peppermint chocolate with a total of 10mg THC from the Indica strain. Each square contained 2.5mg of THC. I ate the chocolate before bed, and within 45min I could start to feel … loosy goosy, a bit tingly but mostly zen, and tired. If I managed to get myself into a sleep position within those 45min I learned it would put me into a deep slumber – one that made me feel very rested in the morning! I will say, this was the best sleep of my life. I was asked “does it put you in such a deep sleep you wont wake up to someone screaming” and my answer is it is no different than regular sleep but it provides you with more instances of deep sleep. Your sleep style however, doesn’t all of a sudden go from light sleeper to ‘nothing wakes you up’ sleeper. It’s still you in there 🙂 Evidence of deep sleep and more REM sleep was noted on a fit bit which correlated perfectly to the quality of sleep felt in the morning. And then just my luck, the store I was buying from discontinued the THC Indica chocolates. This scared me a bit but it provided the perfect opportunity to move on.

Keeping with the same theme, I decided to do a gummy with the same dose and strain of THC. 2.5mg per gummy, 45min before bed. However, it provided a buzz within 15min, very similar in nature but a bit stronger than the peppermint chocolate. It was promising BUT one big component to developing a good product is reliability and repeatability. This product unfortunately flopped on me the second and third and fourth time around. The tingly buzz varied each time, always affecting me around 15min in, but did nothing for my sleep. I don’t have a reason for this, but I wasn’t really needing or wanting to try it again.

Phase 3: Medium CBD, Indica

Topicals and Edibles (12.5mg CBD, 0.2mg THC): So let’s parallel this with the CBD. On the first round of purchases I bought a topical CBD cream. Social media goes wild for CBD topicals and creams for the purpose of pelvic pain. As healing pains started to emerge post-operatively, I decided to buy a legal CBD cream. I didn’t know what I was supposed to feel, but I didn’t think I was feeling anything. I’ve tried it several times since I have purchased it and I find my mind wanting it to work but physically there are no real signs that it is doing anything for me. I was frustrated to say the least, as this journey began for the purposed of pain relief. I decided, along with the THC gummies, I would buy some high dose CBD gummies to up the anti a bit. We are talking 50mg (or rather 12.5mg CBD per gummy), which did a whole lot of nothing. I have never felt it, and I don’t know that I ever will.

At this point, I was able to feel zero with the topical and edible CBD products, I got a good reliable buzz and tremendous sleep on the 2.5mg THC Indica chocolate which they discontinued, and I got a higher but unreliable – mediocre sleep – result from the 2.5mg THC Indica gummy. Where do you go from here?

Phase 4: Blend

Edible (2.5mg THC): I was a bit stuck by this point, so I took a gamble and bought a 2.5mg THC blend dark chocolate. The blends freaked me out a bit because all I could picture was my naked self running around the house in a stupor. But at this point, I was in safe hands, in the comfort of my own home AND I kept reminding myself this is safer than morphine. The dark chocolate was very yummy (and on sale I might add) with a good buzz and a good sleep but not quite as good as the Indica. You could just tell in the morning you didn’t get all the good deep sleep and REM sleep as with the Indica pure. So where do you go from here? You call a friend.

Phase 5: CBD drops and disposable vapes

Phase 5 is something a bit more courageous and I didn’t think I would get here, but here we are. I called a friend to ask what I do next. She proposed that I try CBD drops that melt under the tongue. Sure, safe enough and easy to do. They reminded me of the tincture I used two years ago with little to no effect but I was willing to try something a bit more vetted this time. As for THC I was stuck without the product I liked so I asked her how I obtain THC Indica – not by edibles but not by smoking – so that I have something I can trust. She recommended trying a vape. Oh god a vape. I didn’t want to be one of those cool kids. But the one she showed me was this discrete little pen-like tool that comes ready to use, has ~50 pulls you can take from it, and you can control how much you want or need. I did some comparisons and went with a strain called Pink Kush. Mostly because of the name, and because it had a good concentration of THC; a good bang for my buck. This little hand held device is very sleek, very discrete and even easy enough for the likes of this green lady to use.

Disposable vape (THC, Indica): One night, as I could feel pain encroaching, I took out the pen and asked Greg if he could ‘see’ anything while I was pulling. All of a sudden I felt it give, and a light lit up at the opposite end. The little battery on the end was being charged (or warmed up) by my pulling. I didn’t feel anything or see smoke when I exhaled but I did the second time around. I did two pulls that night and almost within 10min I felt buzzed. This truly was like smoking it. There was no denying I had just smoked some weed LOL. But I did love the control it provided. I deemed to only use this for those nights I would have reached for a tramadol or a hydromorphone. Ultimately though, with it being the strain I like, and being more comfortable with it, I had ended up using it more often than I expected and I really like it. But there are some things you really need to be aware of here. Cannabis and Tramadol CANNOT MIX! They are lethal. So you have to make a decision which one you are going to take. I accidentally (yes I am admitting it), took both and felt like my heart was going to explore. I was sweating and anxious and this did not subside for hours!!! Secondly, the more consistently I was using it, the more I was feeling residual effects in the morning AND it was starting to affect my moods. It took me a few days to realize that the vape was actually making me depressed in a subtle but substantial way. While I didn’t expect this, it was reasonable to accept that it too would have unwanted side effects. I reserve this product for the really tough times, and for weekend nights when I know I am going to get those extra hours of sleep.

CBD drops (25-50ml, Indica): Next – not the same night – I tried the CBD drops. I took 25ml (I think) from the dropper and put it under my tongue to let it dissolve. It’s hard to explain this one. So I asked around to several different people to find out what CBD should feel like. And mostly people described it as loosening or releasing. Just a bit of tension release. Yup, that’s exactly what it feels like. There is no high, and there are no real ‘things’ that happen other than roughly 30min in you feel just a bit better. The tension around where the pain was is just a little less noticeable. I asked people why they take THC with it, and I can attest to the fact that the THC buzz is just de-stressing. So combining the less tension with the buzz makes for a pleasant and long sleep. Again, this is if you are using the right strain. I have NOT tried CBD with THC from the Sativa strain so I cannot comment on that. Mostly because I want to use this product in the evenings and weekend, and absolutely NOT when Im working. I don’t need something to keep me awake if it’s mixed with an active high.

Phase 6: THC Sativa

Edibles (2.5mg THC, 0mg CBD): To round out my little experiment we ‘accidentally’ purchased the peppermint 2.5mg Sativa chocolates as I misread and thought they were Indica. Nevertheless I wanted to keep them for a rainy day. One day, on a Saturday, feeling bloated and in pain, I decided to take one of the chocolates. BAHAHAH ok this was fun, to say the least. It gave me a great high, a fun high, and I could have cleaned the whole house at that point. I have tried taking it before bed and since it is calming still (though your mind is racing your body feels calm) it isn’t the greatest for sleep. If you happen to wake up in the middle of the night you won’t really be able to fall back asleep because of your mind. Maybe that’s just me. As for the pain, I think I was just distracted which was fine.

Literature:

OK nerd alert, here comes the scientific discoveries.

One article looked at the use of medical marijuana for the use of diminishing pain in patients with fibromyalgia. People with fibromyalgia have several types of pain so this was interesting to learn about.

As for cannabis, its major cannabinoid is Tetrahydrocannabinol (THC)…that produces a variety of effects including altered cognition and motor function, analgesia, and psychotropic effects (eg. drug high). Another key component of cannabis is cannabidiol (CBD) that, while nonintoxicating, does affect mood and cognition.”

This study concluded that overall, the pain threshold for these patients was heightened by the strains with high THC content. Conversely, the CBD content had no such effect on these patients which is counter to what I’ve heard and read. Of course, logically I wanted to find a study using cannabis for chronic pain in pelvic pain disorders such as endometriosis. Sadly, the one study I found was utter shit, starting with their definition of endometriosis (*eye roll*).

The best study I found was very informative. In an assessment of cannabis use, selection methods and results in those suffering from chronic pain, they compared men vs women, experienced vs novice users, and recreational users vs medical marijuana users. The findings showed that for the use of chronic pain, across the board users were selecting products with High THC;High CBD OR Low THC;High CBD. This tells you that for chronic pain the CBD component was most sought after (unlike what we read in the fibromyalgia study). And while both groups sought after CBD, it was only the recreational users who tended to also choose High THC whereas the novice users were comfortable with the low THC content. Those who had only used ‘medical marijuana’ chose to use vapes and edibles versus those who were used to using recreational marijuana and often chose smoking versus any other method.

The only conclusion I could draw from all of these finds is that we are inching our way towards products with evidence of medical benefits – ones that can scientifically be reliable and reproducible – so that even non-users have more tools in their toolbox for chronic pain. This is a cautionary tale as just like my experience with opioids is different from yours, so too will our experiences be with cannabis. Listen to your body, make sure you feel comfortable and safe, and try to get out of your comfort zone just enough to try some things you may benefit from. And most of all, please let me know if you have any questions.

❤ Crampmystyleblog

Resources:

Cannabis Use Preferences and Decision-making Among a Cross-sectional Cohort of Medical Cannabis Patients with Chronic Pain

An experimental randomized study on the analgesic effects of pharmaceutical-grade cannabis in chronic pain patients with fibromyalgia

Disease-modifying effects of natural Δ9-tetrahydrocannabinol in endometriosis-associated pain

Primary vs Secondary Dysmenorrhea

We have this notion – or perhaps a false hope – that excision surgery is going to miraculously take away all the pain and suffering leading up to this day. And, while excision is the gold standard of diagnosing and treating endometriosis, it is always good to be prepared for lingering AND new symptoms that appear after the body has settled post-surgery. I am going to do a much more thorough post on central sensitization as I think it is such a huge component of recovery and realization. More on that later. But for now, I wanted to discuss something very important in terms of listening to your body and accepting that it is unique.

I sit here 6 weeks post op, wondering why this menstrual period – minus the bleeding since I ‘skip my periods’ – is so mentally and physically exhausting. One of the main symptoms that you know all too well is the menstrual pain (dysmenorrhea). Dysmenorrhea as a blanket term refers to the excruciating pelvic pain accompanied by menstruation – aka period cramps. We all know it. It’s one of the first signs we as #endowarriors experienced in those early years to foreshadow the inevitable diagnosis of endometriosis. So why then, after an extensive excision of endometrial lesions and adhesions I am yet again experiencing dysmenorrhea?

I did some research as I always do, and discovered that dysmenorrhea has been classified as primary and secondary dysmenorrhea. Puzzled how I never knew this before, I continued to read.

According to ACOG (and many other citations) “Primary Dysmenorrhea is defined as painful menstruation in the absence of pelvic pathology”. Or put another way,

Primary Dysmenorrhea is defined as cramping pain in the lower abdomen occurring just before or during menstruation, in the absence of other diseases such as endometriosis.

Dr. Andrew Coco, Lancaster General Hospital

Women who present with primary dysmenorrhea also express sharp, intermittent spasms typically in the suprapubic area, with pain radiating down their lower back and legs. We know that during menstruation, the shedding of the endometrial lining releases prostaglandins – more specifically PGF2-alpha. “PGF2a stimulates myometrial contractions, ischemia and sensitization of nerve endings” according to Coco. In turn, women with primary dysmenorrhea have higher levels of this PGF2a in their menstrual fluid. The research I have read all claim that women with primary dysmenorrhea experience significant relief with the use of NSAIDS which inhibit prostaglandin production and release. For those who do not experience relief – like so many of us – clinically this raises the question whether the patient has secondary dysmenorrhea – menstrual cramping in the presence of pathology.

As we know from personal experience, if secondary dysmenorrhea is speculated, a hierarchy of tests are done to determine if the patient should have a laparoscopic procedure done to diagnose the patient and excise the endometrial tissue. The most common cause of secondary dysmenorrhea is endometriosis. Other causes of secondary dysmenorrhea include (in no order, adopted from ACOG):

  • congenital obstruction mullerian malformations
  • cervical stenosis
  • ovarian cysts
  • uterine polyps
  • uterine leiomyomata
  • adenomyosis
  • pelvic inflammatory disease
  • pelvic adhesions
Figure 1 was taken from Dysmenorrhea and Endometriosis in the Adolescent, ACOG

Figure 1 above shows the fairly simplistic outline on how to discern primary vs secondary dysmenorrhea. Note that in the chain of events leading to a conclusion of endometriosis, birth control pills are often prescribed to mitigate symptoms of pain and cramping while discovery is still happening. Birth control works in a different way than NSAIDS. First, the birth control is used to reduce the menstruation – or rather the volume of fluid being released during menstruation. Second, it suppresses ovulation if the patient is skipping the 7 day sugar pills and continuing straight through. However, birth control should NOT be used as a bandaid and should be part of a much larger discussion.

So back to my pondering. If then, the endometriosis. or the pathology classifying secondary dysmenorrhea is removed, can one then resume primary dysmenorrhea? Say, at the age of 14, before endometrial lesions formed and I was having primary dysmenorrhea (big assumption here) does one resume primary dysmenorrhea post excision? Im still looking to find out as this would clinically mean I would respond to NSAIDS and I would continue to have ‘bad periods’ even in the absence of pathology like endometriosis. Big questions! Leave your comments – I love reading them!

References:

https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2018/12/dysmenorrhea-and-endometriosis-in-the-adolescent

https://www.aafp.org/afp/1999/0801/p489.html

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 🙂

How They Diagnosed Me With Diaphragmatic Endometriosis

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

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

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

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

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

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

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

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

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

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

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

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

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

Questions and comments are always welcome!