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
Sunday, 22 October 2017
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
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
Friday, 28 July 2017
writing my endostory
Recently, an endo blogger and advocate that I love and get so much strength and inspiration from, decided that she would start featuring endo sisters stories on her blog. Naturally I volunteered. I want as many people as possible to know that this disease exists and it fights hard to bring us down. I've been working on writing it all out since then. Its been a fairly interesting experience.
It was challenging to really think back and figure out where my endostory began. In the end I think I settled on 13. That is the first year that I remember having periods so painful and heavy that I would pass out and miss school on a regular basis. That is also the year that I was put on hormonal birth control for the first time. crazy to think about that now. I didn't give anything about it a second thought at the time.
fast forward about 8 and a half years and that is when my current endo story began. In that period of time I was on several different hormonal birth controls- always trying to find one that would last a long time. When I started having problems again I was using the nuva ring, and it had been working for nearly 3 years, my longest stint yet. But the pain was bad. Really bad. prevented me from doing so many things, including having sex with my partner, and that was very challenging for our relationship. My fight to get diagnosed took all of the energy that I had, but I was still also in nursing school, working and trying to have a life! I was still adamant at that time that no matter what was going on inside my body I was not going to let it take over. I've since given up that notion. I've found a new normal, and it just happens to be one thats days are filled with chronic and persistent bleeding, pain, fatigue and some days so many tears of grief for the life I feel I no longer get to have.
My endo story has evolved a lot. 2 surgeries. multiple medications. many months of bed bound medical leave. and now? a possible second diagnosis of another chronic pain and bleeding disease.
some days it feels never ending. and in some ways it is. There is no cure, and only a handful of treatments that help "most" women. I've already tried a couple of these. My options are becoming somewhat limited and that has made me reconsider a lot of things, lately.
anyone who knows me knows that I was born to be a mom. in every sense of the word. The thought of someday being pregnant and having the opportunity to experience that kind of love and closeness with a tiny human. My own tiny human too. The recent volunteering activity I have done has only made this feeling stronger. I am a mom. but there are lots of way to be a mom, and they don't all involve being pregnant yourself.
I am not ready to give up on that dream yet. I know I may have to at some point, but not yet. It is too much apart of who I am. And a hysterectomy is not a cure for endo. I could still live in pain, and also have the heaviness and grief of my longest and strongest dream disappearing. I'll make new dreams, no matter what my new diagnosis may be and no matter how that impacts my life and my choices. But it's still hard to let go of the dreams you've spent so many years making.
Some days the heaviness of even the contemplation of losing that part of myself feels too much to bear. I don't feel like i'm living at the moment. only surviving. and I only recently returned to the living after my last surgery. I'm ready for it!
thanks for reading friends,
with love,
Em
It was challenging to really think back and figure out where my endostory began. In the end I think I settled on 13. That is the first year that I remember having periods so painful and heavy that I would pass out and miss school on a regular basis. That is also the year that I was put on hormonal birth control for the first time. crazy to think about that now. I didn't give anything about it a second thought at the time.
fast forward about 8 and a half years and that is when my current endo story began. In that period of time I was on several different hormonal birth controls- always trying to find one that would last a long time. When I started having problems again I was using the nuva ring, and it had been working for nearly 3 years, my longest stint yet. But the pain was bad. Really bad. prevented me from doing so many things, including having sex with my partner, and that was very challenging for our relationship. My fight to get diagnosed took all of the energy that I had, but I was still also in nursing school, working and trying to have a life! I was still adamant at that time that no matter what was going on inside my body I was not going to let it take over. I've since given up that notion. I've found a new normal, and it just happens to be one thats days are filled with chronic and persistent bleeding, pain, fatigue and some days so many tears of grief for the life I feel I no longer get to have.
My endo story has evolved a lot. 2 surgeries. multiple medications. many months of bed bound medical leave. and now? a possible second diagnosis of another chronic pain and bleeding disease.
some days it feels never ending. and in some ways it is. There is no cure, and only a handful of treatments that help "most" women. I've already tried a couple of these. My options are becoming somewhat limited and that has made me reconsider a lot of things, lately.
anyone who knows me knows that I was born to be a mom. in every sense of the word. The thought of someday being pregnant and having the opportunity to experience that kind of love and closeness with a tiny human. My own tiny human too. The recent volunteering activity I have done has only made this feeling stronger. I am a mom. but there are lots of way to be a mom, and they don't all involve being pregnant yourself.
I am not ready to give up on that dream yet. I know I may have to at some point, but not yet. It is too much apart of who I am. And a hysterectomy is not a cure for endo. I could still live in pain, and also have the heaviness and grief of my longest and strongest dream disappearing. I'll make new dreams, no matter what my new diagnosis may be and no matter how that impacts my life and my choices. But it's still hard to let go of the dreams you've spent so many years making.
Some days the heaviness of even the contemplation of losing that part of myself feels too much to bear. I don't feel like i'm living at the moment. only surviving. and I only recently returned to the living after my last surgery. I'm ready for it!
thanks for reading friends,
with love,
Em
Tuesday, 11 July 2017
How far does it need to go before people will listen?
Disclaimer: this one might bring tears to your eyes, and not the happy kind. my cheeks are wet just writing about it, and i've been preparing myself to write this post for weeks.
I've recently been enrolled in a full pelvic pain and endometriosis support program through the womens hospital here. It includes physiotherapy, appointments with a Nurse, appointments with my specialist and appointments with a counsellor to help learn how to cope with the day to day of endo. And also to learn how to allow yourself to grieve the life you won't have. This illness does not let you forget about it, even for a few hours or days.
I've been relatively lucky, in endo terms, with the timeline of my diagnosis as well as the fact that there is a specialist in my city ( 3 actually) and they happen to run a clinic on the same campus as the hospital I work at. very accessible.
I've had 2 relatively minor surgeries with no major complications. And I have a doctor that is willing to fight as hard as I am to keep my life as normal as possible. And to keep all of my reproductive organs exactly where they belong for as long as it possible. After all, hysterectomy is not a cure for endometriosis and I cannot express how important it is to have a doctor that is willing to fight your fight with you.
Let me just say that my experiences are rare when it comes to endo treatment. They are not free from struggles, and I have faced my fair share of judgement and dismissal of my illness and pain. however I have a family that supports me, and a group of friends that never make me feel guilty for taking time to rest.
This is not the case for everyone. Many women living with endometriosis face judgement from many parts of their lives, as if having endo wasn't enough. Many women struggle to be diagnosed in under 10 years. Many women get recommended treatments that are not necessary, or are very painful, with many side effects, and little compassion for the emotional and physical stress that their bodies are constantly under.
And here comes the reason for this post. How many women need to take their own lives due to the physical and emotional pain of this illness before things are going to change? My endo sisters are some of the strongest, bravest, warrior women I have been lucky to know. My heart is with all of them, and their struggles, as I know theirs are with me. We have to fight together.
In recent months there have been several women who felt they had no option but to take their own life just to make the pain stop. Several out of a group of about 1600 women in an endometriosis support and awareness group I am in. So, how many more warriors do we need to lose in order for things to change?
Endometriosis can be an absolutely debilitating and hopeless disease. Treatment options that do exist bring with them some very challenging side effects, including more bleeding, nausea and vomiting, hormonal imbalance and frequent fluctuation, weight loss, weight gain, and the list goes on. And having endometriosis is a common link to several other painful and challenging pelvic disorders including adenomyosis ( endometrial tissue migrates and moves into the muscle wall of the uterus causing bleeding and increased pain), interstitial cystitis ( a chronic pain disorder of the bladder, with links to fibromyalgia and IBS, causing depression and decreased quality of life) PCOS ( poly-cystic ovarian syndrome - hormonal imbalances that cause cyst formation on the ovaries, bleeding, pain) and maybe the scariest of all- ovarian cancer. Because no, having endometriosis alone is not enough, apparently. Important to note that the above linked chronic illnesses also have very few treatment options, no cure, and generally poor outcomes.
I was recently given 2 options for treatment, as we have pretty much exhausted every other possible medication, I could go on lupron injections ( which comes with a list of highly probable side effects longer than this post) or go off hormones completely for the first time in nearly 14 years and see what my body does on its own. I chose the latter option and have been off of hormones since May 27. This has brought with it a lot of ups and downs and side effects like crazy, but things are finally starting to normalize a bit. And the bleeding that I had for over a month when I stopped the hormones has finally stopped as well. But if this stops working, which my specialist thinks is likely after a certain time frame ( unknown timeline ) my options are not great. But I am not giving up, not done fighting, so fight with me. If not for endometriosis, for another invisible illness.
so, friends, please show empathy and compassion. for everyone, always, but especially those that might be suffering in silence because they have not ever found anyone willing to listen.
All my love to my endo sisters. we are warriors in the fullest sense of the word, we will not stop fighting this disease and we are not alone.
Thanks for reading.
💪💪💛💛😘
xo Em
I've recently been enrolled in a full pelvic pain and endometriosis support program through the womens hospital here. It includes physiotherapy, appointments with a Nurse, appointments with my specialist and appointments with a counsellor to help learn how to cope with the day to day of endo. And also to learn how to allow yourself to grieve the life you won't have. This illness does not let you forget about it, even for a few hours or days.
I've been relatively lucky, in endo terms, with the timeline of my diagnosis as well as the fact that there is a specialist in my city ( 3 actually) and they happen to run a clinic on the same campus as the hospital I work at. very accessible.
I've had 2 relatively minor surgeries with no major complications. And I have a doctor that is willing to fight as hard as I am to keep my life as normal as possible. And to keep all of my reproductive organs exactly where they belong for as long as it possible. After all, hysterectomy is not a cure for endometriosis and I cannot express how important it is to have a doctor that is willing to fight your fight with you.
Let me just say that my experiences are rare when it comes to endo treatment. They are not free from struggles, and I have faced my fair share of judgement and dismissal of my illness and pain. however I have a family that supports me, and a group of friends that never make me feel guilty for taking time to rest.
This is not the case for everyone. Many women living with endometriosis face judgement from many parts of their lives, as if having endo wasn't enough. Many women struggle to be diagnosed in under 10 years. Many women get recommended treatments that are not necessary, or are very painful, with many side effects, and little compassion for the emotional and physical stress that their bodies are constantly under.
And here comes the reason for this post. How many women need to take their own lives due to the physical and emotional pain of this illness before things are going to change? My endo sisters are some of the strongest, bravest, warrior women I have been lucky to know. My heart is with all of them, and their struggles, as I know theirs are with me. We have to fight together.
In recent months there have been several women who felt they had no option but to take their own life just to make the pain stop. Several out of a group of about 1600 women in an endometriosis support and awareness group I am in. So, how many more warriors do we need to lose in order for things to change?
Endometriosis can be an absolutely debilitating and hopeless disease. Treatment options that do exist bring with them some very challenging side effects, including more bleeding, nausea and vomiting, hormonal imbalance and frequent fluctuation, weight loss, weight gain, and the list goes on. And having endometriosis is a common link to several other painful and challenging pelvic disorders including adenomyosis ( endometrial tissue migrates and moves into the muscle wall of the uterus causing bleeding and increased pain), interstitial cystitis ( a chronic pain disorder of the bladder, with links to fibromyalgia and IBS, causing depression and decreased quality of life) PCOS ( poly-cystic ovarian syndrome - hormonal imbalances that cause cyst formation on the ovaries, bleeding, pain) and maybe the scariest of all- ovarian cancer. Because no, having endometriosis alone is not enough, apparently. Important to note that the above linked chronic illnesses also have very few treatment options, no cure, and generally poor outcomes.
I was recently given 2 options for treatment, as we have pretty much exhausted every other possible medication, I could go on lupron injections ( which comes with a list of highly probable side effects longer than this post) or go off hormones completely for the first time in nearly 14 years and see what my body does on its own. I chose the latter option and have been off of hormones since May 27. This has brought with it a lot of ups and downs and side effects like crazy, but things are finally starting to normalize a bit. And the bleeding that I had for over a month when I stopped the hormones has finally stopped as well. But if this stops working, which my specialist thinks is likely after a certain time frame ( unknown timeline ) my options are not great. But I am not giving up, not done fighting, so fight with me. If not for endometriosis, for another invisible illness.
so, friends, please show empathy and compassion. for everyone, always, but especially those that might be suffering in silence because they have not ever found anyone willing to listen.
All my love to my endo sisters. we are warriors in the fullest sense of the word, we will not stop fighting this disease and we are not alone.
Thanks for reading.
💪💪💛💛😘
xo Em
Saturday, 6 May 2017
6 months later....
March was Endometriosis awareness month. I had everything prepared to write a post about how things had been going ( fairly smoothly, with only a couple of minor bumps), and then I went skiing with my dad and fell, breaking my right ( dominant) wrist in both bones. That set back my typing a fair time. And the story has changed drastically since then.
So, Please consider this my Endometriosis Awareness Month Post.
Disclosure: some details are graphic for some people, please read to your own comfort. this post is not intended to cause discomfort but simply awareness and the spread of knowledge.
My last endo surgery was September 26, 2016. I'll remember that day forever, just as I'll remember the date of my first surgery ( June 3, 2013) and the date of my confirmed diagnosis ( June 4, 2013). It's less than 6 months later and this is the second time I've had long lasting ( >10 days) of heavy bleeding. In the simplest of terms, this also means that there is internal bleeding, inflammation and "bad tissue" growth occurring, and I'm not sure where. Endo fact: this tissue can grow ANYWHERE in the abdominal cavity, not only on reproductive organs. Based on my symptoms and times of pain I think I have some on my bladder, but only tests and surgery will confirm.
I was prepared to go through surgery again. The pain that leads up to it as well. But not this soon. And definitely not when I'd be doing everything right for my body ( whole30, no alcohol x2 months, back to everyday exercise, turmeric tea every morning for inflammation)...I was on a roll! and then I hit a road block. and I slammed right into it.
I've gone through the whole spectrum of emotions on this one since the beginning of April when the pain and bleeding started again. Denial didn't last long. Hard to deny it when you physically have blood coming out of your body and pain that causes you to crumble. Anger. That was easy. Hate for my own body came with this. Thoughts of relief including those of ripping out my entire reproductive system have passed through my mind more than once. I suppose I might always be at a stage of bargaining with this illness. Trying to get as much out of my own life and my reproductive life as possible. In Canada, it costs on average $4000-$5000 to freeze eggs. I've set up an account and am saving towards this. I refuse to be anything but cautious and proactive about my dreams, despite my endo. Then there were the depressed weeks. The bleeding had actually stopped, externally. But with endo, when there is external bleeding, there is going to be new "bad tissue" growth and bleeding internally than can persist and leave inflammation for weeks-months after any external symptoms. I stayed in bed most of the time. Ate poorly. Felt poorly. It sucked. and I wanted to make that cycle stop. So I went to stay with my parents for a few days and knew that my mum would force me to get outside for walks every day, eat good nutritious food, and just be around people. It was exactly what I needed to get to acceptance, where I'm at now. I'm resigned to the fact that endo is back in full strength, but I'm also comfortable with my own strength to take it on, and in my support network.
I guess since this is an awareness post I want my resounding message to be that chronic illness effects people in visible and invisible ways everyday. Often, people living with chronic pain display the least "visible symptoms" of persons in physical pain, due in part because this becomes their normal. Show love, always. We never know whats happening inside.
Thank you for reading <3
Em
So, Please consider this my Endometriosis Awareness Month Post.
Disclosure: some details are graphic for some people, please read to your own comfort. this post is not intended to cause discomfort but simply awareness and the spread of knowledge.
My last endo surgery was September 26, 2016. I'll remember that day forever, just as I'll remember the date of my first surgery ( June 3, 2013) and the date of my confirmed diagnosis ( June 4, 2013). It's less than 6 months later and this is the second time I've had long lasting ( >10 days) of heavy bleeding. In the simplest of terms, this also means that there is internal bleeding, inflammation and "bad tissue" growth occurring, and I'm not sure where. Endo fact: this tissue can grow ANYWHERE in the abdominal cavity, not only on reproductive organs. Based on my symptoms and times of pain I think I have some on my bladder, but only tests and surgery will confirm.
I was prepared to go through surgery again. The pain that leads up to it as well. But not this soon. And definitely not when I'd be doing everything right for my body ( whole30, no alcohol x2 months, back to everyday exercise, turmeric tea every morning for inflammation)...I was on a roll! and then I hit a road block. and I slammed right into it.
I've gone through the whole spectrum of emotions on this one since the beginning of April when the pain and bleeding started again. Denial didn't last long. Hard to deny it when you physically have blood coming out of your body and pain that causes you to crumble. Anger. That was easy. Hate for my own body came with this. Thoughts of relief including those of ripping out my entire reproductive system have passed through my mind more than once. I suppose I might always be at a stage of bargaining with this illness. Trying to get as much out of my own life and my reproductive life as possible. In Canada, it costs on average $4000-$5000 to freeze eggs. I've set up an account and am saving towards this. I refuse to be anything but cautious and proactive about my dreams, despite my endo. Then there were the depressed weeks. The bleeding had actually stopped, externally. But with endo, when there is external bleeding, there is going to be new "bad tissue" growth and bleeding internally than can persist and leave inflammation for weeks-months after any external symptoms. I stayed in bed most of the time. Ate poorly. Felt poorly. It sucked. and I wanted to make that cycle stop. So I went to stay with my parents for a few days and knew that my mum would force me to get outside for walks every day, eat good nutritious food, and just be around people. It was exactly what I needed to get to acceptance, where I'm at now. I'm resigned to the fact that endo is back in full strength, but I'm also comfortable with my own strength to take it on, and in my support network.
I guess since this is an awareness post I want my resounding message to be that chronic illness effects people in visible and invisible ways everyday. Often, people living with chronic pain display the least "visible symptoms" of persons in physical pain, due in part because this becomes their normal. Show love, always. We never know whats happening inside.
Thank you for reading <3
Em
Monday, 10 October 2016
life post surgery. it's pretty fricking sweet. but also a little bittersweet.
So surgery was about a week ago. well, not quite. It was Monday at 3:45pm, and now it's Friday evening.
Going under anaesthetic pre surgery is one of the most brilliant feelings. Often the preceding hours/days/months are filled with some amount of fear and anxiety, but when you get asked to start counting back from 10, and you only remember barely reaching 8, and then it's all gone: the pain, the fear, the stress, the depression, the anxiety about what could go wrong. It's blissful. I don't really know how else to describe it. You're left there, lying on a very stiff table, covered by warming blankets, and surrounded by nurses and doctors who are smiling at you, and even, sometimes, holding your hand until you drift off.
The experience of this surgery was like night and day compared to the last one that I had to help with my endometriosis. Maybe because I'm actually a full fledged nurse now. Or maybe because I was so much more honest about my fears with my nurses and doctors. And more likely than anything it was because I finally found a doctor who listened to me, and felt WITH me. I think I'll remember her exact words during our first appointment exactly. She trusted me. She knew my body. She believed me. And she wasn't going to let me continue to live the half life that I had been living for months. When I started to cry during the appointment, her Resident looked surprise, but even before I could catch my breath to explain, she told her that the tears were not of sadness, or because something had gone wrong, but tears of relief. Tears of being listened to. Taken seriously. Understood when I explained that at the moment I was barely living. She just knew. She got me.
So now it's 4 days later. Strangely enough, waking up from surgery with that pain was easier than the pain I experienced for months prior. Seems crazy. To have the pain of having your body cut into in 4 different places be less than the pain of your illness. But it was. And I worked so hard to stay awake right away after surgery because I was afraid that if I let myself sleep again right away that pain relief would all go away. I talked to my doctor. I talked to my nurse. I talked to myself or anyone around just to stay awake. But it wasn't hard.
Everything felt easy after meeting my doctor post op. She smiled this huge, beautiful smile at me, and explained that they were able to remove all of my "bad" tissue for now. It came out cleanly. I would likely have pain relief for a few years, at least, And my "baby makers" were clean. Totally. Completely. Beautiful Organs. I even got to see pictures. Like I said, she just got me, and knew what was important to me, and what scared me most.
So I'm getting back to "energizer bunny" status as my family calls it. I just call it getting back to me. I love the things I do again, I feel inspired to cook, craft, jog, hike, etc etc. I don't really know how to accurately describe that feeling of relief you get from all of a sudden being pain free. I feel like my life just renewed itself.
So I know I should be staying positive. And 98% of the time I am. But the rest of me know that endo can and likely will regrow, if not in the same place as before, it will find somewhere else to call home. But I don't care.
I love every moment of every day I have right now that is free from pain and constant stress about what might be happening inside my body that I don't see or really understand.
But until then, I'll raise a glass ( preferably of some really fricking awesome champagne) to my family, my friends, my doctors, my nurses, and selfishly, myself. I got through this one. This second surgery in what might be a lifetime of minor surgeries. But this is done, for now. And I'm relaxed, and happy.
Love to you all.
Going under anaesthetic pre surgery is one of the most brilliant feelings. Often the preceding hours/days/months are filled with some amount of fear and anxiety, but when you get asked to start counting back from 10, and you only remember barely reaching 8, and then it's all gone: the pain, the fear, the stress, the depression, the anxiety about what could go wrong. It's blissful. I don't really know how else to describe it. You're left there, lying on a very stiff table, covered by warming blankets, and surrounded by nurses and doctors who are smiling at you, and even, sometimes, holding your hand until you drift off.
The experience of this surgery was like night and day compared to the last one that I had to help with my endometriosis. Maybe because I'm actually a full fledged nurse now. Or maybe because I was so much more honest about my fears with my nurses and doctors. And more likely than anything it was because I finally found a doctor who listened to me, and felt WITH me. I think I'll remember her exact words during our first appointment exactly. She trusted me. She knew my body. She believed me. And she wasn't going to let me continue to live the half life that I had been living for months. When I started to cry during the appointment, her Resident looked surprise, but even before I could catch my breath to explain, she told her that the tears were not of sadness, or because something had gone wrong, but tears of relief. Tears of being listened to. Taken seriously. Understood when I explained that at the moment I was barely living. She just knew. She got me.
So now it's 4 days later. Strangely enough, waking up from surgery with that pain was easier than the pain I experienced for months prior. Seems crazy. To have the pain of having your body cut into in 4 different places be less than the pain of your illness. But it was. And I worked so hard to stay awake right away after surgery because I was afraid that if I let myself sleep again right away that pain relief would all go away. I talked to my doctor. I talked to my nurse. I talked to myself or anyone around just to stay awake. But it wasn't hard.
Everything felt easy after meeting my doctor post op. She smiled this huge, beautiful smile at me, and explained that they were able to remove all of my "bad" tissue for now. It came out cleanly. I would likely have pain relief for a few years, at least, And my "baby makers" were clean. Totally. Completely. Beautiful Organs. I even got to see pictures. Like I said, she just got me, and knew what was important to me, and what scared me most.
So I'm getting back to "energizer bunny" status as my family calls it. I just call it getting back to me. I love the things I do again, I feel inspired to cook, craft, jog, hike, etc etc. I don't really know how to accurately describe that feeling of relief you get from all of a sudden being pain free. I feel like my life just renewed itself.
So I know I should be staying positive. And 98% of the time I am. But the rest of me know that endo can and likely will regrow, if not in the same place as before, it will find somewhere else to call home. But I don't care.
I love every moment of every day I have right now that is free from pain and constant stress about what might be happening inside my body that I don't see or really understand.
But until then, I'll raise a glass ( preferably of some really fricking awesome champagne) to my family, my friends, my doctors, my nurses, and selfishly, myself. I got through this one. This second surgery in what might be a lifetime of minor surgeries. But this is done, for now. And I'm relaxed, and happy.
Love to you all.
Saturday, 17 September 2016
radio silence period over. real periods only here.
So it's been a while since I last wrote anything. Over 2 months actually. There are a lot of reasons for this, but really it's been such a difficult summer, mentally and physically, and I really didn't know how to talk about it. Even writing this now I feel the tears welling up in my eyes. It's not all bad though. There is some happiness in those tears. Anger too. Frustration. Exhaustion, both mentally and physically. But today, I want to focus on the happy.
Surgery! It might seem like a silly thing to be happy about, but believe me, I am. I actually cried from relief when my new endo specialist told me that she was going to operate, and that it would be soon. I had this appointment on September 5th, and my surgery is September 26th. Like my doctor said, soon! There was a resident working with her when I had my appointment, and she is fairly new in that department, so we talked a lot. It was great. I think I scared her a little when I began to cry, but my doctor just laughed happily and looked at her resident and said "She's not crying because I said or did something wrong, she is crying from relief". It was perfectly explained. And so wonderful to have a medical professional get it. So, happy happy over here.
Scared maybe a little too. It's an easy surgery. I'll be done in less than an hour. Can go home a few hours later. Recovery in less than 10 days. Laparoscopic surgery is great. I'll have 4-5 small incisions ( adding to the ones I had last time, i'll be at a count of 8 small ( 1 inch) scars on my abdomen.) Scars are an interesting thing. I used to hate mine, both from my first endo surgery and from my back surgery. I felt they represented weakness. Failure on the part of my body. I realized recently that they represent strength, experience, suffering and powering through. I wear them proudly now. Just as I feel I am learning how to wear this disease. With happiness? definitely not. But pride is there. Writing this blog and talking about it more openly has been huge for me.
Just a warning that this part might get a little graphic and detailed for those that are not medical professionals. Endo is a lot of things. There are studies to suggest that the 4 stages of endometriosis and their varying effects on your life and overall health can be directly compared to the 4 stages of cancer. I'm at stage 2.
I take about 30 pills everyday. Not all of them are prescription, but some are. Of the ones that are prescription drugs, all have the same 2 annoying side effects. Weight gain and acne. Well great. As if I wasn't already feeling self conscious in different ways about my body, the 2 most visible things are negatively impacted as well. Thanks. I also have to do weekly b12 injections. Those, coupled with my 2xday iron pills, and drinking lots of water and eating healthy, ensure that I stay relatively healthy and stable despite my daily blood loss.
That's the other recent fun thing. I have been bleeding continuously since August 20th. And with endo, any external bleeding means there is some internal bleeding as well, which is what the spread of endo is. Also great. I mean, who doesn't love month long periods? Oh and the crazy hormones are fun too.
Moving past what is currently happening, I'm trying to look ahead and focus on the surgery. Like I said earlier, it's laparoscopic surgery, so just a few small incisions. Basically they will go in and cut out any damaged or "bad" tissue that they can, and on areas like my bladder, bowel and ovaries, they will burn and scrape off as much as they can. In the areas they can cut out, the chance of regrowth is about 10%. In the areas they burn off it is about 70%, and then of course there is the likelihood of growth on any other reproductive organs, as well as further spread into my abdominal organs. But the last time I had this surgery I had just over 2 years of relief. And right now, the thought of even one day of relief is amazing, I can't even say how much 2 years of relief would mean.
So yes, emotions are mixed, and running rampant. Like I said, hormones are fun. I can't tell you how many times I have cried at stupid things on the internet or in movies lately. And I'm really not a movie crier. Ever.
But today I choose to focus on the happy. I've even started making plans of activities, parties, travel! for after surgery. I almost feel as if life begins again in a couple of weeks. And I couldn't be more ready.
Surgery! It might seem like a silly thing to be happy about, but believe me, I am. I actually cried from relief when my new endo specialist told me that she was going to operate, and that it would be soon. I had this appointment on September 5th, and my surgery is September 26th. Like my doctor said, soon! There was a resident working with her when I had my appointment, and she is fairly new in that department, so we talked a lot. It was great. I think I scared her a little when I began to cry, but my doctor just laughed happily and looked at her resident and said "She's not crying because I said or did something wrong, she is crying from relief". It was perfectly explained. And so wonderful to have a medical professional get it. So, happy happy over here.
Scared maybe a little too. It's an easy surgery. I'll be done in less than an hour. Can go home a few hours later. Recovery in less than 10 days. Laparoscopic surgery is great. I'll have 4-5 small incisions ( adding to the ones I had last time, i'll be at a count of 8 small ( 1 inch) scars on my abdomen.) Scars are an interesting thing. I used to hate mine, both from my first endo surgery and from my back surgery. I felt they represented weakness. Failure on the part of my body. I realized recently that they represent strength, experience, suffering and powering through. I wear them proudly now. Just as I feel I am learning how to wear this disease. With happiness? definitely not. But pride is there. Writing this blog and talking about it more openly has been huge for me.
Just a warning that this part might get a little graphic and detailed for those that are not medical professionals. Endo is a lot of things. There are studies to suggest that the 4 stages of endometriosis and their varying effects on your life and overall health can be directly compared to the 4 stages of cancer. I'm at stage 2.
I take about 30 pills everyday. Not all of them are prescription, but some are. Of the ones that are prescription drugs, all have the same 2 annoying side effects. Weight gain and acne. Well great. As if I wasn't already feeling self conscious in different ways about my body, the 2 most visible things are negatively impacted as well. Thanks. I also have to do weekly b12 injections. Those, coupled with my 2xday iron pills, and drinking lots of water and eating healthy, ensure that I stay relatively healthy and stable despite my daily blood loss.
That's the other recent fun thing. I have been bleeding continuously since August 20th. And with endo, any external bleeding means there is some internal bleeding as well, which is what the spread of endo is. Also great. I mean, who doesn't love month long periods? Oh and the crazy hormones are fun too.
Moving past what is currently happening, I'm trying to look ahead and focus on the surgery. Like I said earlier, it's laparoscopic surgery, so just a few small incisions. Basically they will go in and cut out any damaged or "bad" tissue that they can, and on areas like my bladder, bowel and ovaries, they will burn and scrape off as much as they can. In the areas they can cut out, the chance of regrowth is about 10%. In the areas they burn off it is about 70%, and then of course there is the likelihood of growth on any other reproductive organs, as well as further spread into my abdominal organs. But the last time I had this surgery I had just over 2 years of relief. And right now, the thought of even one day of relief is amazing, I can't even say how much 2 years of relief would mean.
So yes, emotions are mixed, and running rampant. Like I said, hormones are fun. I can't tell you how many times I have cried at stupid things on the internet or in movies lately. And I'm really not a movie crier. Ever.
But today I choose to focus on the happy. I've even started making plans of activities, parties, travel! for after surgery. I almost feel as if life begins again in a couple of weeks. And I couldn't be more ready.
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