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
Friday 10 November 2017
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
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
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
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