I have always had very painful heavy periods, and PMS that messes with my life. In my 30s, I asked docs at my GP surgery a couple of times if what I had might be Endo. I was told no - definitely not, as my pain was not between periods too. In the end I felt that I had to just manage it on my own. I also tried asking for tests to see if I had a hormone imbalance. I was always told that the only option was to try different contraceptive pills repeatedly. I also saw GP about constipation, IBS symptoms and frequent urination.
This year a dr referred me for an ultrasound, and they found a 9cm cyst on my right ovary. Then CA125 came back as raised. MRI showed no ovarian cancer (huge relief) but 'likely severe endometriosis'.
8 years of frequent urination, about 12 years of IBS/constipation, and even more of dysmennorea and PMS. The myths about Endo are so damaging and it seems as if nothing is being done to correct doctors' false assumptions. Writing this down is bring up some of my otherwise suppressed rage!
Since March I have been having awful bouts of fatigue, leaving me semi-housebound. I try to get out at least once each day, and try to sit in the garden to make sure I'm getting some vitamin D. I have had repeated infections since March too (chest, UTIs) and been given antibiotics and prednisone a number of times. At my last gynae visit, I was told that fatigue is not a symptom of Endo, and that my fatigue must be due to something else.
Anyway, enough of my tale of woe. I am grateful that a) I do not have pain the whole month as some sufferers do and b) that I have found this forum and the Endometriosis UK charity. I called the helpline today and it was really useful.
I am now going to get a referral to an accredited endo centre for a laparoscopy instead of going back to the gynae who I don't trust. I'm also going to make further dietary changes.
I'm glad I have somewhere to come and find help