It took about 10 years to get a proper diagnosis and treatment of my disease. That’s because it is not taken seriously enough. It’s been around since Ancient Egypt and affects 1 in 10 women. There are records of women (and even a few men) having this life-eating disease for thousands of years, and yet because it is a ‘women’s disease’- it doesn’t warrant too much investment.
I find it interesting in hindsight how the lack of seriousness and attention Endometriosis and Adenomyosis are given has made me think I was crazy. I thought I was just over-sensitive, or just deeply flawed and needed to just ‘suck it up’ and be quiet about the intense pain I was in. At first it was just during my period. I thought it was ‘normal’ to faint, to scream, cry and writhe through the night, to feel like a a man with steel toe boots was kicking my womb and back repeatedly for 2 days with 3 days of burning afterward, like a forest fire had just ravaged my insides. After pregnancy and lactation with my daughter was over, things got much worse. This is where the suspected adenomyosis kicked in, and the endo spread. Those few days extended into 3-5 more days of pain during ovulation, then 2-3 more days leading up to my period, then I had about 1 pain-free week a month. During my period I passed huge amounts of blood and clots, I could not leave the house for 2 days a month. Many times I was writhe in pain worse than childbirth and consider calling an ambulance but held back because I thought I was being ‘too dramatic’. Later I found out, many people go to emergency for much less.
My mantra to myself was always ‘I am fine’, ‘I am fine’, ‘I am fine’. Lies I told myself to get through that maybe helped in the short term but became harmful in the long term.
I was a yoga instructor for goodness sake. I thought ‘I know my body. I can handle this. I can breathe through it… calm thoughts. Affirmations: ‘I embrace my feminine nature’ ‘My womb is a sacred space of light and wellness’. Visualise the color blue. White light. The ocean.’ I drank raspberry leaf tea every day. Ate a low-glycemic-vegan-gluten free diet for a year, got regular massages, took a shit ton of supplements, castor oil packs, meditation, shamanic healing, therapy, homeopathy, naturopaths, did all the natural stuff- you name it, I did it. And I did it with commitment and faith for 7 years.
But that bull shit only goes so far.
I know, it’s not bull shit. I work in the holistic field, and i know a lot of this stuff works for a lot of things. But I had a severe, structural disease, that this stuff was like a drop of water on a forest fire. So, while I am an advocate for holistic health, and know about the miracle stories, I am also keenly aware of its limitations. I am not one of the miracle stories.
I basically feel like an idiot for having unrealisitc beliefs and ideals about natural medicine. For believing a lot of false information from holistic health prophets. From not being taken seriously enough by them or by mainstream medicine. For having too much pride to admit I needed mainstream medicine, and that surgery and birth control pills are the things I needed to give me my life back. And to admit that I am flawed. My womb is flawed. Mental health is fragile. NATURE IS NOT PERFECT. Evolution has had only half as much time to perfect our reproductive organs as it has the rest of them. And for women, this complex system will take a long time to adapt and figure out how to keep the human race going. One would think that would warrant a further investment on the part of medicine. But I digress…
Back to my story…
Eventually my organs became so contorted and stuck together that I could not urinate or go to the bathroom without intense cramping and shooting pain, could not have intercourse without pain, could not even sit or walk or carry groceries anymore without pain. My relationship with my daughter and husband suffered, because I could not be my best self. My mental health was suffering. I could no longer do my favourite activities, one of which is bellydancing. I pushed through it sometimes, because I loved it so much. But at one point, I realised I had to stop, and finally take my body’s troubles seriously.
I was seeing my family doctor for ovarian cysts, which she was monitoring. She suspected endometriosis, but did not refer me to a specialist until it got really bad. I didn’t really like to complain about all I was going though. She offered me birth control pills, but I refused because the holistic health community I was a part of would unleash typical fear-mongering of all things unnatural and tell me it was a bad idea. Luckily, my family doctor referred me to an endo excision specialist (currently excision surgery is the most effective treatment, however, not a cure). He also referred me to a pelvic physiotherapist- who was amazing! I was finally in good hands, compassionate hands. I had success from the physio and the surgery. Stage 4 endometriosis and suspected adenomyosis were found. I was put on a medication to suppress my periods. My body didn’t handle it well, so I went on a low dose birth control pill. I am now well enough to actually LIVE my life and tell my story from a perspective outside of constant pain.
Basically, for 10 years, my pain and anguish was minimised, normalised, thought to be all in my head. Part of this is lack of information, lack of understanding and society’s perception of women. Part of this stems from women and the christian concept ‘original sin’. Women are meant to suffer. This belief pervades our culture and also the religion my family was brought up in, and therefore I internalised the message that
And we make it ok by saying “I am fine”.
To ourselves, to others. So much that we believe it when it just isn’t so.
This is what I want to abolish. The message that patriarchy has given us- that we must suffer because we are women.
This messages has pervaded so much of the fabric of our lives that it has become completely normal. Invisible. Unnamed.
Welcome to my blog. It will be a compilation of personal experience, observations and questions relating to feminine embodiment- what does it mean to be embodied? What is the Sacred Feminine and how does it apply to me? What does my womb have to do with it? How does the experience of childbirth, motherhood, and pelvic/reproductive disease change my experience of being a woman in this world? What about sexual assault and trauma? My perspectives come from awareness of the interplay of mind, body, emotions, spirit, cosmos, society, oppression and The Great Mystery.
Thanks for reading!