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. 

Excision Surgery Part 2: I Know My Body

We all say it, right? I know my body. I know when something is wrong. I know that something is suspiciously right. When you are sick 99% of the time, you know how your body feels with every sway and every stumble, and every new stimulus. You know all the different kinds of pain: from dull aches to shooting pain; from a 6 to a 9 to a ‘hmm… Im not sure if that’s pain or discomfort”. You know!

On day 10 post surgery something was happening. While I knew that tremendous amount of work had been done to remove my rectosigmoid colon from my abdomen, and subsequently my left ovary from the colon, I still understood what healing felt like. I also knew what an accidental tear or an over-exertion would feel like. It feels like a spike in pain that – with rest and medication – would eventually start to get better over time. This is exactly the opposite of what I started to feel. If you can imagine, the top of your left pelvic bone… go in about an inch and a half, and then hook up a car battery charger right there and press on the gas. Yeah that’s what I was feeling. It was right where an incision had been made, with a dull ache of 6 all day, and shooting voltage at 8 or 9 every 15min or so. First step was to run this by the surgeon who recommended I go get a urine culture done to rule out infection. Done. But the pain persisted with no medications bringing relief. By this point, say day 14, I wasnt even concentrating on the surgical healing, I was 100% focused on this ‘problem’. When I reached out to others on social media I was relieved to hear that it was normal, but that nagging voice inside of me kept telling me this surely wasnt normal.

Finally, I broke and went to emerg. I was given the most high level care from the minute I walked in. OK maybe not the minute I walked in. Maybe the minute the doctor saw me and understood how much pain I was in. But it wasnt the doctor I remember – though he was nice too – but the nurse. She was so caring and understanding of my gynecological issues. She gave me a hot blanket to put around my back, and one to put right on the spot that hurt. And then a shot of hydromorphone to calm be down. I was in bliss for about 20min until the hydromorphone spiked my pain much like I experience with morphine (I believe it’s hyperalgia they call it). They didn’t restrict me from more hydromorphone but the next dose – should I need it – was prepped for half the amount.

Long story short, infection and complications were ruled out by more urine cultures, an ultrasound and blood work. We even ran CRP to see if there was undue inflammation that could point to GI issues, but that was ruled out as well. Home I went. As a patient, you kinda lose your steam after awhile. I lost my steam for about 2 days. I was just so paralyzed with pain, disappointed that the meds weren’t working, and exhausted. But, as usual, to my rescue my doc offered to see me just to assess what was going on. No judgement, no preconceived notions, just a lot of listening and suggesting. We tried the logic that it was nerve related. Either an aggravated nerve due to the innervation of nerves around the surgical site, OR a new nerve pathway sending protective signals despite the removal of the stimulus. This in essence is central sensitization and not uncommon with laparoscopic excision of endometriosis. Doc gave me two nerve blocks, warned me the pain may get worse before it gets better, and then chatted with me about the findings of the surgery.

No endometriosis is still worth excision surgery.

I write this because time and time again I have had women reach out to me in tears, saying their worst fears came true: that the surgeon was not able to find any endometriosis and they feel like failures. Only a doctor can make you feel like a failure by giving you the notion that the surgery – the lap – was a waste of time. But as medicine and science go, we usually can only rule out. We dont rule in. So by enduring biopsies and the exploration through laparoscopy this is still a major milestone in your journey.

When I sat down to go over the findings, I was shocked (and relieved) to hear that the pathology for the biopsies from the left side (the side stuck to the colon by adhesions) was negative for endo, as were the various unusual spots taken from my diaphragm. Let me repeat. There was no endometriosis on my diaphragm. I would have expected this to make me feel mad, or sad, or something… But it didn’t. Because my surgeon told me we did everything right, and that for any residual pain We can rule OUT endometriosis but that still lends the way for other professionals to start taking a stab at hypotheses. This is exactly what your surgeon should be saying to you. This is exactly what your team of specialists should be reassuring you of. It’s never over, until its over.

All in all a great day!

I just hit the 4 week milestone, and I am feeling very optimistic about my recovery. One thing we did happen to modify during that last visit was swapping out gabapentin for amitriptyline which has been causing dizziness as expected, but otherwise, I even baked some cookies last night :).

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…