People obviously don't understand this disease. Even less so, the "treatment options"... I ended up having a hysterectomy because I had endo growing all over the outside of my uterus. However, everyone around me seems to think that means I'm cured. Anyone else have this experience? What do you say/how do you handle it?
it's an autoimmune disease. Surgery is to help with the symptoms. As long as you're producing hormones )ovaries) you still have the cause. :(
I just completed my fourth surgery. Yes i had a hysterectomy and it didnt help. I have a specialist in Atlanta I see. If ypu need any info please feel free to contact me.
This is the most underestimated disease. Nobody understands. My work tells me its all in my head. I honestly feel like i should be on disability and in a wheelchair on morphine all day... they prolly consider it a headache lol. No cure.. not even a hysterectomy will cure this crap
Sorry people are annoying. I had a laparoscopy in 2013 and those close to me knew that the pain would come back, so they have been supportive. I've kept quiet as long as I could about my pain, but now it's affecting my everyday life again I have had to mention it to others why I can't attend or host some events, why I'm late, why I look like I'm in pain, etc.
All I hear is: your surgery didn't help?, maybe it's something else or go to another doctor; they must have a drug to treat this; just try lupron, iud, etc I would try it if it was me; blah blah blah... They mean well, but it's annoying.
It depends who it is, but I just say yeah I have a few appointments to see what else can be done. I keep it vague so they dont follow up. And then change the subject. When it's extremely annoying I have said enough let's talk about something good I'm sick of my pain and change the subject. If the person insists, I have asked them for their medical degree or brought up their own health issue they don't want advice on. Then they finally get the hint.