This lived-experience story is published in the writer’s own words. The term “PMOS” is preserved as submitted because EWA cannot safely assume what the writer intended.
This story, or the details advised, will not come as a surprise to many. At 20 years old after starting my periods young and believing the pain and severity of my bleeding to be normal, I finally saw a doctor who listened (partially). I was found to have PMOS - the only help I was given was told to lose weight and have kids. Side note: I’m 40 and have been unable to have children.
Fast forward 15 years, many burst cysts, bleeding for 80+ days, anemia, depression, anxiety, weight gain, and many many trips to the ED. Still the only answer I was given was lose weight and have kids. Husband is fed up, I go to a new doc who thinks this isn’t just PMOS so am referred to gynae. Was told, lose weight and have babies. Also sent to pain clinic as I have been living with this for so long I just now think all pain is associated with my uterus. Migraines out of hand, bleeding causing me to lose work. Referred back to gynae who now suggests Mirena. This works for the bleeding. But the pain is still there, migraines still killing. I am taking so many pain medications my body is becoming sick due to it. I stop taking everything, and instead let my body feel all the pain and work through the motions. This is draining body and soul. Use options like CBD etc. and that is where I am. 20+ years and I am exactly where I was that long ago. FYI my Mirena was meant to be removed/replaced 6 months ago and I’m still waiting on the hospital to have this done.
For those born with a uterus we have been failed by the system. I have been ignored, told it’s my fault, it’s in my head and this is by medical professionals. I gave up. I can’t deal with the stress and hassle of it all so childless and old (still have a wonderful husband by my side though) I am just waiting till the day I die for it to be over. Please know that I am not suicidal either, I just know this is my life and it is what it is.
I just hope that organisations like Endo Warriors Aotearoa will make life better for future generations.