An open letter about endometriosis and hysterectomy.

Several months ago I came to a significant and final decision.

Honestly its been on my mind every day for the last 3 years. its been a fear of mine for since I received my diagnosis in 2013.

I understand that hysterectomy is not a cure for endometriosis, however it will help control my worst symptoms- frequent and heavy bleeding 3 weeks of every month. Below is my letter of request for this treatment.

To whom it may concern, 

An open letter about endometriosis and hysterectomy. 

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for reading my story. 

Sincerely,

Emilie Durocher