This is me and I am 1 in 10.
This is the side all Endometriosis warriors battle with behind closed doors. 1 in 10 people who are assigned female at birth are currently screaming with pain on bathroom floors, bleeding (shockingly) heavily during periods, so fatigued they cannot function in their jobs, full of brain fog from an inflamed system that is trying to function with this invasive disease that behaves like a cancer as it multiplies inside us, avoiding sex because the pain it causes is too much, fertility problems, miscarriages and suffering blinding pain when trying to do something as normal as going to the toilet. I mean, any one of those symptoms on it’s own should be reason to put your hand up and demand a cure!
It has taken over 20 years for me to have this diagnosed. Doctor’s did not have the right information. Research was non existent into what is essentially a female only condition, ‘get pregnant’ has often been touted as a ‘cure’. Periods were something that weren’t to be talked about, heaven forbid, ‘investigated’.
My own symptoms were masked for years by contraceptives, meanwhile the disease was progressing, doing it’s work fusing my ovaries to my bowels, filling up my insides with legions and adhesions. Then when I tried to come off the pill, it wasn't long before getting a ride in an ambulance quickly lost it’s novelty factor. Miscarriage, fertility problems, passing out and smashing my head off a tiled wall from pain surging through my body, it hasn’t been fun. But I've kept going like so many others.
Not only that, I note my white privilege. It has been found that Black patients have an even harder time being heard and reaching a diagnosis (half as likely to be diagnosed as white women). They are also less likely to be believed due to bias on not just gender but race too. It’s time we found a better way for all Endometriosis sufferers and health care needs to seriously be levelled here to prevent unnecessary suffering.
The long and daunting process we go through to obtain a diagnosis (which can currently only be done through surgery) blood tests, ultrasounds, internal ultrasounds, probes, laparoscopy’s, injections, hormone therapies, we’ve been there, we’ve tried it and still there is NO CURE for this debilitating disease.
So here's me, scared, bloodshot eyes from crying to myself while alone for hours waiting to be summoned for surgery, the totally out of it oxygen smiles when I woke up afterwards to reassure the family I made it through the operation, sending selfies to my young daughter who wasn’t allowed to come visit due to covid restrictions (knowing that one day this could be her). Sitting alone in a ward for days hooked up to the ‘good drugs’ while my body would jolt awake every time I closed my eyes as it began to process the trauma of having all it’s reproductive organs removed in an instant.
The peppermint tea, oh god the only thing that would stop those searing stabbing gas pains from being inflated during the surgery!
So far, for me, all this has been worth it even while knowing this might not be the end of my Endo story.
This past year has been so hard at points but also so restorative as I worked with my body to recover from a full radical hysterectomy and excision surgery to remove as much Endometriosis from my body as they could find. Surgical menopause has me on replacement hormones (HRT) at 42 years old which is about 10 years earlier than my friends and peers. Not being able to see or hug any of them during my recovery was so isolating, but that is the world we've been living in during Covid.
It has been a traumatic process, invasive, painful and scary, but one thing I have found throughout is that the strength from those who live with this disease (and other chronic illnesses) is completely overwhelming. They are the kindest, strongest, most inspiring people I have ever come across. I found others who went through their surgeries on the same day as me, we've shared our recovery stories together, all of us completely unique in our experiences both good and bad.
Getting up day after day to function in a society that doesn’t fit, still loving, still caring, still wanting to make and create and to lead fulfilling lives.
These are who I’ll be thinking about this International Women’s Day. Endo warriors! You are not alone!