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!

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…

How I described pain as endometrial lesions spread throughout my body

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relishing in the mere moment where my mind and body were disillusioned by the fact that I was half asleep and too withdrawn to feel the pain.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

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

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

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

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

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

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

crampmystyle18@gmail.com

The math doesn’t add up

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

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

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

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

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

One step forward and two steps back.

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

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

Endometriosis versus Erectile Dysfunction – the numbers are staggering

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

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

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

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

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

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

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

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

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

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

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

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

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

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

these…

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

and these…

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

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

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

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