I just want to share my story with you about my fight with endo so far. I remember exactly my first painful period, it happened already when I was 16 years old. Everyone around me said that it couldn't be that bad and I'm just overreacting a normal period everyone is suffering from. There were some days when I couldn't go to school, there were some when I fainted, vomited, and had diarrhea. I started to use contraceptives, and my pain went away for a while. Then it started again, they just changed the pill to another one, it went away, and it went on like this for many years. I already suspected that I had endo in my early twenties, I shared it with my doctors as well, but they ignored it.
This year has been especially difficult. I had such painful periods that I seriously thought I was going to die. It went on for 2 days with this horrible pain, and nothing helped. Finally I found a gynecologist who diagnosed me and then sent me to the hospital under social security (I am currently living in Spain). My diagnosis was about to be finally done after 13 years, but then COVID-19 happened. All my appointments were postponed (without new date). I had an MR and a visit with an endo specialist left. Depressive symptoms also came out, being alone in the quarantine with my pain without help (not to mention I was writing my PhD in the meantime). Pain got so bad that after the hard first days many symptoms persisted even for 2 weeks. I defended my PhD (of course organized for non-period day), and my husband told me to try CBD. I didn't trust anything anymore, even tramadol didn't help...But CBD did, and I was so happy for a moment!
Appointments were reorganized, they finally did my MR, then I had one with the endo specialist. He told me I had the worst of the worst. Stage 4 endo (only 1% of all endo patients have this), which is basically almost everywhere. I have a lot of tissue infiltrated in my vagina, between my colon and vagina and even in my colon - this caused the worst symptoms during my periods. They said most probably my bladder is also infected. This was at the beginning of September, they told me that the surgery is urgent now. My surgery will be on next Monday (Nov 16), and I'm terrified. They will cut out a part of my colon, and if it's a long and posterior cut, they will have to put a temporary ileostoma. They will open my vagina and who knows what else. It will be a 5-6 hours long surgery and even if it will be successful and without further complications, I have to stay at the hospital for at least a week. My husband cannot visit me because of COVID...I know it's a good thing that I'm finally diagnosed and on my way to get better, but I'm also very angry at everyone who told me everything was fine during 13 years. It shouldn't be this bad, it could be even an easy operation...
My next surgery will definitely be a hysterectomy: I just cannot wait for it to come back until menopause. And as it is very aggressive, it will come back, the question is how fast and where.
Thanks for everyone who read it, I hope everyone is doing well and remember that we are all extremely strong! We do successful and functional lives despite of this cloud hanging over us all the time.