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
Friday 28 July 2017
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
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