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
Friday 8 June 2018
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.
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.
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
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
Subscribe to:
Posts (Atom)