Friday 23 August 2019

An open letter about endometriosis and hysterectomy.

Several months ago I came to a significant and final decision.
Honestly its been on my mind every day for the last 3 years. its been a fear of mine for since I received my diagnosis in 2013.
I understand that hysterectomy is not a cure for endometriosis, however it will help control my worst symptoms- frequent and heavy bleeding 3 weeks of every month. Below is my letter of request for this treatment.



To whom it may concern, 

An open letter about endometriosis and hysterectomy. 

I’d like to start by introducing myself. My name is Emilie I am 28 years old. I am a daughter and a sister. I am a Registered Nurse. I love to cook, garden, read, swim. I love to dance around the house. I love to spend time with my friends. I love to go for seawall walks. I love to volunteer. I love life and all the wonders it brings with it. I love to travel. 

I am a spoonie. Over the past 6 years I have been diagnosed with endometriosis, fibromyalgia and interstitial cystitis. Pain, fatigue and severe dysmenorrhea rule my life. 

It’s hard to think, maybe, that someone who is under 30, single, and who has not yet had the chance to start a family, is ready to make the decision to have a hysterectomy. It was hard for me to think, it is hard for me to think. But just as I’m sitting here writing this letter I can literally feel the blood and the clots the size of golf balls pouring out from my uterus. This is nothing new. I lost count, a long time ago, of the number of days where I’ve had to stay home because of heavy bleeding and pain. 

I am 28 years old and most of my underwear and pyjamas have blood stains on them. I wear pads that feel like diapers and the bleeding is still too much. I sleep with a towel underneath me, and I often set alarms for several different times of night so that I can get up and change my pad. All of this in an effort to minimize the damage that this bleeding is doing.

This is what my life looks like for 3 weeks of every month. 

When I go to bed each night I evaluate my pain. I evaluate which part of my body hurts the most. My pelvis almost always wins. And then I medicate, some pharmaceuticals, mostly cannabis, vitamins and supplements. And I get out my heating pad, and my ice packs, my essential oils, and my positioning pillows. I do the same when I am woken up by the severity of my pain each “morning”. The truth is that I barely sleep at all, night or day. I have been dealing with pain like this, in some capacity, for the last 16 years. My days, months and years have been altered significantly because of my endometriosis and severe dysmenorrhea.

I bore my pain silently for a while. You get so used to hiding your hurt that it becomes really hard to admit how much you’re feeling. People use the phrase “picking themselves up off the floor” to signify a lot of things. It’s always a bit subjective. In my case, I have literally been picked up off the floor by my parents, my siblings, my friends and close family friends and paramedics. It’s a horrible feeling. All of it. The pain and nausea and desperation that you feel. The anxiety and anguish I feel every single time I start to bleed again. The inability to leave the house for more than 30 minutes at a time.

It’s taken away my energy, it’s taken away my ability to live alone, it has slowly stolen pieces of me as I try to tread water and stay afloat. My life has faded away to the point that now I don’t have a life. Not one of any quality anyways. I have lost jobs, opportunities, friendships, relationships. And I’ve watched it all happen, furiously trying every treatment available to me, but still the pieces keep breaking off- my work, my volunteering, my time with family and friends, my time for fun. And now I have this pinhole sized life.

Nothing about this decision is easy. Anyone who knows me well knows that I was born to be a mother. I wanted to have my own babies since I was a baby and that makes this a particularly hard choice for me. I am not expecting a miracle by doing this. I understand very well that a hysterectomy will not cure my endometriosis. It may very well not take away all of pain. But it will stop the bleeding. And it will give me a chance. 

I’m saying goodbye to my longest standing dream. I’ve already said goodbye to other dreams I’ve had. And the only reason that I’ve made it is because my life, my quality of life, cannot be exchanged for a biological baby that I may not even be able to have to begin with. In the state that I am in, barely able to take care of myself on a day-to-day basis, there is no way that I could be the mother that I want to be. So I am choosing myself. I am choosing to put my energy back into my own life. And I am confident that none of this is going to stop me from being a mother, even if the path is a little different than how I imagined it.

This has been going on since I was 13 years old and my breaking point was a long time ago. I have had 3 surgeries to remove endometriosis in the last 6 years. The last one included removing my right ovary and performing a pre sacral neurectomy. I have been on countless hormone treatments, including spending a year in medically induced menopause. I have seen pelvic floor physiotherapists. I have seen acupuncturists. I have seen massage therapists. I have had trigger point injections. I have had nerve blocks. There are quite literally no other options for me to try to regain some of my life. If all of the above is not enough to convince you that I deserve to have this treatment, this choice, this final option, then likely nothing will. But I am convinced. I am sad, but I am firm in my decision, I know it is the right one for me. 

I’m not going to lie and pretend that I’m OK right now, because I’m not. But I know that I will be. Since making this decision a few months ago, there is been an ounce of relief in my body. I have begun to rediscover hope for my own future, hope that I had lost for a long time before.

Thank you for reading my story. 

Sincerely,

Emilie Durocher



Friday 8 June 2018

10 days until surgery number 3

It still feels surreal. I got the call on Monday morning. I was so excited I did a little happy dance before getting ready for that mornings appointment with my endo specialist. I felt lighter in my body and in my mind; lighter in a way that I had not felt for a very very long time. The pain was still there, and still is, but now there is an end in sight. My appointment went well- we reviewed the plan for my surgery and discussed my current range of symptoms....skip ahead if you don't want to read about the details. At the moment, I have a variety of symptoms that are a constant: pain ( in my lower back and legs from nerve compression, a deep ache and heaviness in my pelvis, pain throughout my body from fibromyalgia- joint pain, muscle pain, headaches-, pain in my bones from medication side effects, exhaustion that doesn't go away no matter how much I sleep, insomnia, oh and my ever persistent nausea. There was also the memory loss and brain fog. The symptoms that were not as constant could come and go at any time, some were predictable, like the intense and sudden pain that comes when I have a bowel movement, others less so. These included: bouts of nausea and vomiting that lasts a couple of days, the passing out that happens following days of vomiting or brought on from a particularly bad pain day, vaginal bleeding ( yep, thats right, even though I've spent the last 10 months in menopause my body has continued to have periods of bleeding), rectal bleeding ( this was a relatively new one, and caused by a tear in my bowel), finger/hand/arm/leg twitches and spasms, the sharp pains that came and went intermittently due to endometriosis lesions and adhesions.

The appointment was quick and easy, my doctor and I exchanged a hug and she told me its going to get better. The clinic nurse who I have become well acquainted to stopped by to say hello and give me a hug as well. I really can't ask for a better team of people to have on my side. There have been challenges for sure, but I really trust my dr, and I trust that she knows, understands and cares about what is important to me. This surgery will be new and different for me; there will be excision of endometriosis lesions same as before, but I will also be having my right ovary and fallopian tube removed, and the nerve that sends pain signals from my uterus to my brain will be severed. We suspect endo to be found on my bladder and bowel, on my appendix, on my right ovary ( my dr suspects it may be attached to my bowel) and around my uterus and rectum.

It was the anniversary of my diagnosis this week. 5 years and a few days ago I woke up in post op recovery and was told by my OBGYN ( not my current endo specialist) that she had found endometriosis. She told me she removed it ( ablation) and that I was going to be fine. That was it. I didn't hear another word about endometriosis from any dr until my 4 week followup. In that time I had done plenty of my own research- thank you to nursing for incredible access to databases! I had a list of questions and she couldn't answer most of them. I am so grateful to now be under the care of specialists who really know endometriosis.

It's hard to think about the fact that despite having been diagnosed 5 years ago, my quality of life has only worsened and I've required more surgeries and extreme treatments ( menopause at 27 hasn't been easy). I really truly believe that this is due to how long it took for me to get diagnosed ( 10 years) and the fact that it is an under researched and under funded disease. Despite my OBGYN not knowing much about the disease, I am forever grateful to her for finding it. I am grateful to her for listening to me when I told her something is really wrong, for continuing to search for an answer until we got one. I don't even want to begin to imagine what my life would be like now if I still didn't know.

If someone you know has symptoms of endometriosis- please listen to them. Do not disregard the pain and other symptoms because it might be uncomfortable to talk about. 1 in 10 women has endometriosis. If you know 10 women, you know endo.

Thank you for reading friends,

xo Emilie

Wednesday 4 April 2018

My nearly 15 year journey with endometriosis.

If I’m being honest endo and I have been together since I was 13. That is the first time I have distinct memories of the pain, nausea, heavy heavy bleeding and passing out. I remember being so sick each time my period came, every 14-20 days, and stayed around for 10-12. I would miss school, soccer, volunteering. I would stay home, huddled around a hot water bottle. I definitely didn’t think that this could be normal. I booked an appointment with my doctor and went in with my mum. We both explained how sick I had been. We pleaded with her for a solution. It came, and I was willing to try anything, so began my relationship with hormonal birth control. 

It helped, with many symptoms ( frequency and heaviness of bleeding) but it brought with it new challenges including acne, weight gain, constant nausea and for a while really bad insomnia. Still, the relief these pills provided was worth dealing with all of that, so I did. Until that pill stopped helping, but then there was another pill, and another, and another. By the time I was 23 and finally having laparoscopic surgery to check for endometriosis I had been on 8 different hormonal pills, and the nuva ring. everything has stopped working. 

Diagnosis didn’t come easily, or quickly. Over the years I had various times when I would push a new doctor to do a different test, believe me that there was something wrong. It wasn’t until I was 21 though that I began pushing and actively seeking treatment and answers for what I felt just could not be normal. I was willing to see any specialist, have any test, do anything to figure out why it felt like there were knives stabbing into my pelvis and twisting my organs around. why I was having heavy bleeding, hot flashes, nausea, a bowel that acted up in different ways what seemed like hour to hour. Oh, then there was also the full on fatigue that knocked me down completely, no amount of rest, sleep, yoga, relaxing baths or meditation could cure.  I had a colonoscopy. An endoscopy. Both revealed nothing out of the ordinary, so I was told I had IBS. I was instructed to do an elimination diet and find my triggers. I did that, and my stomach and bowel health improved a bit. No more GI follow up given. No further exploration into my other more unsettling symptoms. I was still having longer than normal periods ( 14-18 days) and horrible pain with them. Bleeding would occur randomly, not following any kind of cycle. I started having pain with sex so bad I was in tears. I stopped having sex altogether. I felt awful 100% of the time, so I pushed harder with my doctor this time and finally received a referral to see a gynecologist. It was going to be a 6 month wait.


Fast forward to my appointment with the gynecologist, I was so excited, I’d been waiting a long time for this and I had hope that she would have some answers and that she could find some way to help me. All through fall, winter and spring I continued to push and advocate for myself. She ordered every test that was minimally invasive. A full and thorough STI panel. All kinds of blood work- I was anaemic and had moderately low hemoglobin. I was put on iron pills. No change. A colposcopy with a cervical biopsy. A cystoscopy. A hysteroscopy. None of these tests revealed anything abnojrmal except for an overly sensitive cervix that bled following a sneeze as far as I could tell. Tests kept coming back negative, but I was not willing to give up. When my gynecologist finally suggested we could do a laparoscopy to explore what was going on, I think I cried and hugged her awkwardly. 

I remember feeling scared at this point, wondering what could be going on inside me that they needed to perform surgery just to diagnose. My nursing knowledge helping to calm my fears and also wreak havoc in my swirling thoughts at night. I remember preparing for the day by re-reading notes from my surgical rotation, setting up my rooms and medications for when I returned home, ensuring there was lots of easy to digest food readily available, and lots of books and movies on hand. Preparing for the worst, trying to expect the best and just running through my nursing steps systematically....I didn’t really know what else to do.

Surgery day finally came, and I arrived at my specified time, checked in with the nurse, and was given a stiff hospital gown to change into, removing all of the clothing underneath. I walked out of the change room and took my seat among all of the others that were in the day surgery department of the hospital. I felt vulnerable, sitting there, with just a thin hospital gown on, terrified at what they might or might not find during surgery. The nurse came over and started my IV, we chatted, and I immediately regretted it when I told her I was a nursing student. I want to be treated like everybody else, with kid gloves on, and everything explained step by step. I was moved to a bed and told my doc would come to see me before they took me into the OR. She did, along with the resident that was going to be observing and assisting, as well as the urologist that was there to do the cystoscopy. She marked my abdomen with sharpie in the 4 places they were going to insert the laparoscopic tools needed. Next came the anesthetist, my favourite person by far, as I knew he would be the person putting me under and giving me my first break from pain in too many years. He helped bring my stretcher into the OR, waited until I had moved onto the surgical table, and then started preparing and explaining everything he needed to do. I remember being asked if I wanted to be put out before they positioned me for surgery, or if I wanted to be awake. A flashing memory of the awkward and uncomfortable naked position I had witnessed a patient in during my surgical observation days and quickly answered that I wanted to be totally out, not aware at all of the moment when my body would be exposed to an OR full of people. Kept repeating to myself that seeing nakedness of my patients didn’t phase me at all, this was just the same. I remember my breathing quickening a bit as everything went on around me, and then, a mask over my face, being told to count back from 100 and not even making it to 97. 

I don’t think I will every forget the look on my doctors face when I woke up in recovery and she came over to tell me that she found Endometriosis, an incurable inflammatory disease that was spreading through my pelvis. I remember crying, in part for fear of what this disease was going to do to me, and in part for joy at finally having an answer, and having all of my symptoms and worries validated. She referred me on to a specialist with a 6-8 month wait list, and in the mean time I read anything and everything I could about Endometriosis. When I finally did see my specialist she put me on Visanne, a progesterone based hormone treatment. I bled like crazy and started gaining weight right away. My pain was bad, I was exhausted, nauseated most of the time and still gaining weight. Because I was not requiring surgery immediately when I saw my specialist ( my diagnostic surgery had used ablation and cautery- not ideal, which I did not know at the time- and it had reduced some of my pain external to when I was bleeding) as soon as she put me on Visanne- a medication that I was told worked well for most of her patients- I was dropped from her patient list. Fast forward a year and a half and my family doctor, gynecologist and I had been switching my meds every few months and doing what we could to keep endo under control. I was slowly learning more about this disease, spending hours pouring over research articles and any material I could get my hands ton at the Hospital Library. Endometriosis was beginning to halt my life again though. Missing work, volunteering, starting to get isolated because I was scared of how much pain I was in, and scared nobody would believe me. Trying to stay afloat when I was bleeding almost constantly and could point out the exact spots where I could feel tiny knives stabbing and twisting their way around my pelvis. 

I got back on the wait-list to see the same specialist as I had before. It was going to be a 6-8 month wait. I had to go on disability, I was too sick to work, with vomiting, passing out and falling over from the pain becoming normal in my life once again. But it felt stronger this time. Everything aggravated it and even things that worked before to calm it or myself down were failing. I hid away for the most part; lived in pyjamas and yoga pants, drank smoothies everyday to keep myself going, went from my bed to the couch to the patio chairs outside and back again. I was in full blown survival mode. 

When my appointment date finally rolled around I couldn’t


 sleep I was so excited. The anticipation of having someone believe you and treat you seriously pulsed through my body all night, questions racing through my head even though I had been preparing my list for weeks. I totally forgot about the part of the appointment that would include very painful internal exams, right up until the moment that I sat down in one of the chairs next to the Drs desk to begin discussing my symptoms. The time for the exam loomed over me while I methodically reviewed all of my symptoms and documents ( 20 pages filled out pre-appointment). She was kind, and eager to learn, listening carefully to how I described my pain, and then focusing a good amount of time on how I was actually doing. I appreciated that, appreciated that I got more time by speaking with her first, time to tell my story. Then it was time. Pants and underwear off, scratchy exam table paper underneath me and I was extremely conscious of the thin sheet that covered me and the small pool of blood that was already collecting on the paper. I already wanted it to be over and it hadn’t even started. The ultrasound machine beside me hummed and clicked to life, my eyes now focused solely on the long wand of the internal ultrasound wand, stabbing pains in my pelvis seeming to flare up at the thought. In comes my dr, the specialist I had been waiting so long to see. She smiled at me warmly, put her hand on my arm and said they would get through this part as quickly as possible, that she knew it could be very painful. As she used the wand to pain map the inside of my pelvis, making notations on a large pelvic diagram, HUGE X’s for the areas where her wand touched sending my whole body into convulsions from the pain. But she kept her word, and the horribly painful part was over quite quickly. I was told I could get dressed and that they would be back in a few minutes to talk about options. When my Dr came back into the room with her resident I was sitting in her desk-side chair nervously. She presented me with 2 options, and honestly I don’t remember what the 1st one was. Because then she said they could do excision surgery, and that it was generally very effective- she had high hopes of it significantly improving my pain and returning my quality of life. I began to cry a little, and the resident looked horrified, I tried explaining that I wasn’t sad, but we all know how that goes- talking and crying. To my surprise, my Dr looked at me, and saw the expression on her residents face- she quickly cleared things up: I wasn’t crying because I was sad, I was crying because I had been in pain for so long, symptoms getting so bad, that I was crying from relief that she could help me. I felt like she got me. 

The surgery went very well, she removed several deep lesions and cleared some scar tissue. I can still almost remember the feeling of waking up after the operation, in less pain than before I had gone in. A strange and euphoric feeling. 

It’s been close to 2 years now, all symptoms returning eventually, the heavy bleeding the only constant throughout the whole thing. Then came lupron and menopause. Its been 8 months, and I bled through half of it. I’m coming off now, preparing for next steps, better treatments,  more surgery. The 8 months on lupron have been some of the  hardest I’ve ever been through. Bleeding, pain, worsening pain, new pain. New diagnosis of fibromyalgia ( suspected had for 3+ years). Back pain. More bleeding. New HRT, different HRT, hot flashes, nausea, memory loss. Depression and Anxiety. Hair loss. Weight gain. New diagnosis of Interstitial Cystitis. MRI. Confirmation of slipped disc and nerve compression. More doctors. More surgery needed. 

It’s a weird feeling, looking back now, I’ve had endometriosis for more than half of my life. For nearly 15 years, endo has effected and, knowingly or not, it has controlled so many parts of My life. 


I’ve been in survival mode the whole time. No relief. I don’t remember what no pain feels like. I’m scared I’ll never feel it again. 

Wednesday 10 January 2018

10 days in to January and I'm already exhausted

exhausted, angry, sad, defeated, hopeless, sick.

I woke up on January 1st after a very disturbed and restless pain filled night. Woke up might be a bit of a lie, I hadn't really slept to begin with. The only thing I had energy to do was take my medication, and walk upstairs at my aunt and uncles house to boil the kettle for a hot water bottle. My parents took one look at me and knew right away that I was hurting a lot and just trying to stay standing long enough to try to make myself more comfortable. I returned to bed immediately and stayed there for the next 5 hours trying to rest and save any "spoons" ( more on that later) I had left for our big family dinner that night. I managed to be there, heavily medicated, but happy to be in the company of so many people that I love. small victories.

Fast forward to today, January 10th, and not much has changed. I've spent the bulk of each day in bed/on the sofa resting and trying to get my pain to a low enough level for some sleep. I've been nauseated to the point of barely managing to drink my smoothie throughout the day. The pain has been horrible, and I feel like I've been in a medicated haze most of the time. I'm currently taking 20+ pills a day, about half of which are prescription meds. In the last year I've accumulated more prescriptions than either of my parents have accumulated in their lifetimes. oh, and now I have 3 chronic illnesses, just to put a nice big cherry on top of the challenging and frustrating start to this year.

I suppose having the diagnosis really only changes things for the better, I can actively start getting treatment for this new diagnosis, instead of simply treating the pain with high doses of narcotics and not really knowing what the cause was. Although before Monday I could still pretend that it was a simple issue, something with a timeline and a cure, not yet another disease that will live with me for the rest of my life.

Interstitial Cystitis. I'm still getting used to how those words sound. Also called painful bladder syndrome. Widespread inflammation and in some cases ulcerations to the bladder walls that cause severe pain and pressure, as well as urgency and frequency issues. Its unknown what causes it. There are medical treatments, and some procedures ( bladder dilation, botox injections) as well as lifestyle changes ( no coffee, spicy foods, acidic foods) that can help with symptoms. But there is no cure.

I am living with endometriosis, fibromyalgia and interstitial cystitis, if you can call it living. More accurate would be surviving.

There is still a lot of processing happening in my mind. Right now the overwhelming feeling is anger and hopelessness. I don't understand why this is the hand I've been dealt, and, for now anyways, it feels insurmountable. It feels like returning to work is so far out of my grasp, as is anything resembling my former life. I don't know how to stop feeling that way, so, for now, I'm just going to let myself be upset about this, but only until it doesn't serve me any longer. Before January 1st my head was in a better place, I had dreams and plans for 2018. They're all still there, just put away in a safe place until I'm ready for them again. I hope I don't have to wait too long.

A note about my "spoons" comment earlier....this is something called spoon theory, developed by someone who lives with chronic illness as a way of explaining what its like to feel tired all the time, and to have to constantly make choices and compromises of what you can take on each day, depending on the number of spoons that you wake up with. A link here for a more detailed explanation: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Thank you for the love and support, friends, and as always, thanks for reading <3

xo Em


Friday 10 November 2017

tomorrow will be better, but tomorrow never comes

I shared a secret with someone tonight. It was hard to admit, to share, to say out loud. I don't know if there is anything else I have kept to myself like this. It's my greatest fear, my deepest worry, and the thing that is most often the cause of tears that I shed. Want to know what it is? I bet you can guess, I wouldn't be surprised at all. It's the H word, all capitals, too real and yet not real yet at all. My greatest fear for the last 3 months is that even after putting my 27 year old body through menopause and back that I am still going to need a hysterectomy. and with that fear comes the fear of losing so many of my dreams.


Most days I try and manage to stay positive, picture a future where the med does work, and I get to keep  ( at least for the time being) all of my organs in their proper place. and I do picture it. but its not easy, picturing a life day after day that you feel you should actually be preparing yourself to live differently. Different isn't necessarily bad, I know I'm not without options no matter what organs live in my body or not, but giving up on dreams is. It's bad, it's hard, it's sad, angering, full on ugly cry inducing, and frankly, the whole situation sucks. Yes, I know I sound like a bratty kid saying that, however I feel strongly that for all of the pain, both physical and mental, that I have had for the last 3 months ( not to mention the 14 years of pain due to endometriosis) earns me a freebie on that front.


Now here is the part of the blog post where I should talk about turning it all around, taking charge of my health, focusing on making new dreams instead of on the ones that I have to put away. While that is all true, and all of those are things that I do on a daily basis, I don't want to diminish the fear or the feelings of anxiety, sadness, anger and depression that accompany me everywhere.
Honestly I don't want to worry about not leaving this post on a positive note for the sake of the readers. I love and appreciated every single person that takes the time to read, but I won't change my story to make things happier, better or more comfortable for someone.


The whole point of this post was for me to try to express a deep rooted fear and source of stress in my life. I'm not going to lie and say that there is any part of this that is pleasant. The opposite instead really. Each small stride I make towards improvement seems to be followed by an even larger push backwards. How can I help but expect the same of lupron?


I know I will make new dreams, find ways to live a full life despite my limitations, and I even think I may be pain free one day. But that is not the case today. Might be tomorrow, but in my experience, the "better tomorrow" doesn't exist for me yet. Maybe one day. But today I am scared. and I am sad. and tomorrow I will be too.




Thank you for reading friends.

xo Emilie

Sunday 22 October 2017

fibromyalgia. well, at least it has a name.

Let me just start off by saying I wasn't surprised at this diagnosis, not even a little bit. I had been expecting it, researching everything I could on it, for days that turned into weeks that quickly turned into months as I continued to be grossly bedfast, dealing with pain in my pelvis, back, and then quickly worsening and spreading to my entire body, bleeding, nausea, vomiting, passing out, and those were some of the good days- the days that didn't involve trips to the dr or to ER to try to figure out what my body was fighting so fervently.

Endo was the obvious answer, although it didn't necessarily explain all of the symptoms, but a plan to try to tame the monster that is my uterus seemed like the best way forward in an otherwise very muddy patch. welcome lupron, and menopause and still feeling endo pain because of all of the scar tissue and cysts and endometriosis lesions. like small blisters, open and bleeding all over the inside of a womens pelvis, her bladder, her bowels.

Now my hot flashes are mostly under control, the night sweats diminished,  but the insomnia ever present- making normal thoughts and tasks nearly impossible to accomplish because my brain feels like jello. The brain fog of having not 1 but now 2 chronic illnesses that cause fatigue can be completely crippling as well. I feel like I can hardly form complex thoughts, let alone retain them for any period of time, or be trusted with judgement calls. I am on so many different medications I wouldn't trust my brain anywhere right now.

I guess it's time that I actually talk about my diagnosis. My new diagnosis. It feels both like something has been lifted off of my chest and that there is something new pushing it down harder than before. Lots of people say that having the diagnosis helps so much. I would tend to agree, but only about 75%. There is still that feeling of the mountain doubling in size, or the cartoon piano falling on your head just to knock you out again. Sure, I have a treatment plan now, but yesterday, I only had one chronic illness. I only had one thing that I would fairly certainly battle for the rest of my life. Yesterday, there was still a chance that this was all something different, something easy to fix, something curable, something that wouldn't make my life another degree more challenging, something that wouldn't continue to keep me from the job I love or from seeing friends. So yeah, having a diagnosis can be great, but it can also feel like the hardest thing in the world.

and with fibro, I really feel like I'm walking into a brick wall, that, no matter what direction I turn, it always finds me and I always end up injured, in pain and wondering how the hell I got there. That's pretty much how I feel constantly these days....how did I get here?...how is it possible that 4 months ago I was working 12 hour shifts and volunteering in between....and now if I manage to shower or make it out of the house I'm happy with my accomplishments for the day. Honestly. even if I get out of bed and manage to make myself a smoothie. It's crazy how things change. Things you never thought would be taken away from you, but in a way that they are still so visible, almost like they are within your reach. but they're just far enough away, or now they require the help of another person to accomplish. Good thing I'm not independent minded or stubborn at all.

Since my doctors appointment on wednesday I have been trying to look outside at the beautifully coloured red, orange and yellow leaves- and i've been trying to remind myself that nothing is permanent, even an incurable illness, in a weird way. Because how horrible I feel everyday right now is not going to be forever.  Some days I believe it more than others.

I don't really know what else to write. This post has been sitting on my laptop, partially finished, for days. The thoughts are pretty jumbled, but I think thats akin to what is going on in my brain right now.

Thanks for reading,

xoxo
Emilie

Tuesday 29 August 2017

the journey to menopause, and back again

I woke up this morning and rolled over to see sunshine streaming through the window, beginning to warm my feet in their position at the end of the bed. It was peaceful and simple, and I smiled for just a second, because that is how long it took for me to feel the pain, and with it came flooding the thousands of thoughts of anxiety, fear, anger, sadness. I've come to learn that those thoughts are part and parcel of everyday life with endometriosis. and thats ok, as long as the other physical symptoms can be managed. I remember saying to someone recently that it would all be ok and quite possible to manage if all of the symptoms didn't happen in conjunction with one another. But when there is bleeding, pain, bloating, nausea, vomiting, fatigue and general malaise together almost all the time, well that just becomes too much and our brains tend to shut down as a coping mechanism. I can't tell you how much my brain feels like a sieve lately.

This morning was a bit different though. It held with it a hope of new treatments, plans, and general optimism. Today was a day when I finally got to see my specialist. And it was a good appointment. My mum came with me. I don't think i'll ever get tired of that. The sheer demonstration of support that this action shows is huge, let alone the actual love and support that comes with it.

So when my dr came into the room we chatted for a few minutes. She sat down at the computer and edged her chair right up close to the desk and close to mine, so our knees were touching, and so she could take my hand when she felt I was scared. and I'm terrified. but she gets it. and I am so thankful for that. When she asked me to go to the bathroom to empty my bladder so they could do a good transvaginal ultrasound I heard her and my mum talking as I left the room. My doctor was the first to say " the way she is right now is not okay, and I am going to make it my personal goal to get her back to a good functional level. This doesn't have to be her life and I'm here to help." I almost cried on the spot hearing her say that to my mum. Having her acknowledge it at all is a huge victory.

As lovely as hearing that was, it unfortunately didn't take away any of the discomfort of the actual procedure, or the fact that my doctor was finally saying it was time to do lupron injections, as there wasn't really anything else to try.

This means 1 injection a month for at least 6 months, possibly longer if it is successful, but that comes with a lot of risks too. I think I mentioned in an earlier post that this medication comes with a long long list of side effects, but often those side effects are manageable by add-backs ( a term used to explain the addition of controlled hormone quantities once lupron is in full effect) lupron effects the pituitary gland suppressing all female reproductive hormones and sending the body into a state that imitates menopause. this is reversible when the medication is stopped. so it is a bit of a wait and see time right now. and a waiting game to see which of the symptoms of menopause I will experience on this med. So far night sweats and hot flashes are here. There is no part of this that is pleasant or ok.

I never imagined that the week of my 27th birthday would also coincide with my commencing menopause, or at least my first time going through it. there is a small risk with this medication that I will never reverse my menopause and that is terrifying. there is also the risk that it could work incredible well, making the conversation of a hysterectomy that much more real and possible. I would do just about anything now though to feel better, to return to living. There have been so many times in this week that I have erupted into a stream of uncontrollable tears because sometimes it just feels like too much. Other times I feel lucky and hopeful about the care and love I have. The reality lies somewhere in between, because the reality still involves random outbursts of tears. this is never the life I imagined for myself, but I will continue to push and fight to keep as much of the light I want and dream for alive.

Last week I found an article written by an endo sister that really perfectly summed up what it feels like to have this experience before being ready for it. I shared this article with my family and a few friends to help them understand. the response was incredible, so I'll share it here too as I still think she says it better than I do.

https://www.buzzfeed.com/lucypasharobinson/menopause-at-25?utm_term=.se4Rxm1DO#.pn48R1BzQ

Granted I am a couple of years older than this girl, but the feelings are similar. I feel that she expressed a lot of things that I don't even know how to yet, I'm still working on processing.

Thank you friends for reading and for your continued support. Please send any extra good vibes you have my way, hoping to return to work next week and need all the strength I can muster for that.

xo

Emilie