Hi everyone. I'm 28 and have been suffering with pelvic/lower back pain since around the time I had my daughter (10 years ago) and the pain just got progressively worse and then began to affect my sex life.
Initially I was told I was hyper mobile and that the weight of carrying a child had damaged my back muscles. I then started having bowel problems and was later 'diagnosed' with IBS (they gave me pills for IBS symptoms and sent me on my way.
Then I started having horrific periods that lasted for months and were really heavy and painful and then the pain became an almost constant state. I went to my local clinic who advised that it was a standard side effect of the copper coil but did examinations and an ultrasound which showed nothing and again I was sent home with no answers.
Over the years in my mind I knew something wasnt right and was terrified I'd be left infertile because of it but because I was fobbed off so many times I questioned myself and wondered if I was being a hypochondriac or imagining it which felt awful because nobody could see it and I carry pain well (after years of suffering I'd just learnt to keep going).
My ex convinced me to keep pushing my GP who just put me on the pill which didn't fix the pain and only made my periods more manageable. I eventually went back and broke down in my GP telling her how scared I was of not having anymore children and that I was struggling to cope. My GP finally took pity and referred me to a gynaecologist.
The gynaecologist didn't seem entirely convinced either but I persuaded him to do a diagnostic laparoscopy.
After years of being given various diagnoses I almost didn't believe they'd find anything but I woke up in recovery (alone) to be told i had severe endometriosis and that I'd need another surgery to remove it. He showed me photos asked if I wanted more children and then left me. I was inconsolable I thought I was infertile and was kicking myself for not fighting harder for a diagnosis and thinking I'd wasted years that I could have spent having kids.
I went back later for a review and fortunately it wasn't in areas that affect my fertility but was very close to my bowels and quite extensively covering a nerve.
I had it removed last week and am due a follow up tomorrow with my surgeon.
Sorry for the long post but I guess my questions are:
How the hell is this a standard diagnosis process?
How have people coped with the mental anguish of getting the diagnosis and the after effects?
How likely is this to come back after and affect my fertility?
And if it grows back will I have to go through all this again?
Diagnosis
Diagnosis 
waiting for diagnosis 
Exploring endo diagnosis
No Diagnosis 
