Hi everyone, I'm 22 years old and was diagnosed with Endometriosis about two weeks ago after surgery.
After almost 10 years of symptoms of excruciating pain and chronic symptoms I finally have a name for what's been making me so ill.
For years I've seen countless doctors, almost all downplayed my pain and illness. I was told I was depressed and anxious, sent for therapy, told the pain was imagined, told to eat more fruit, told to 'get a hobby'. Finally I had surgery that removed endometriosis tissue and treated the organ adhesions they found.
about a year ago my symptoms got worse and some new symptoms showed up. I started seeing lights and seeing things like coloured blobs and objects moving, I've also lost consciousness and had weird things happen like spasms and jerking limbs. After battling through tests for a year, I've finally seen a neurologist who thinks I have either epilepsy or an atypical migraine variant. I'm still waiting for a diagnosis for that one.
I just look back at the last 10 years and feel so angry. I feel like I lost my childhood to this disease, I missed school and was bedridden and sickly. I've been made to feel weak and small and like my pain didn't matter. Now I finally have recognition and a cause, I'm facing a lifetime of an illness that has no cure. I also feel like these neurological problems stem from endometriosis, my body has just been pushed to exhaustion from years of pain and untreated illness.
Being really sick for the past year has slowly impacted my life. My friends have all but disappeared, losing interest in me after I cancelled too many times. I've lost two jobs, my degree is suffering so I'm now having to study part time to catch up, and my personal projects (I'm a writer and performer) have just dried up, all the contacts and accomplishments I've made disappeared after being out of the scene for too many months.
Now I have a name, endometriosis, I'm suppose to feel happy? Facing a life of two untreatable chronic conditions is awful. My fertility is at great risk. The pain can be terrible, my brain is failing me, my memory is gone, my brain just gets taken over by these 'episodes' and I have an attack or a seizure. My body is slow and tired and in pain, I feel like I've just lost control. My family is happy, they think after surgery I'm cured. But I know thats not the case, there is no cure, there is just management.
I'm honestly not depressed, I think I'm just going through the natural grief process that must come with these kind of diseases, I feel like I'm grieving for a life I won't have and making sense of it. Being sick is difficult and its isolating.
How does everyone here cope with having a chronic illness and being in pain? Maybe you could share your own story?
Thanks for reading everyone xx