I’m going on 15 yrs diagnosed. Just a mere 19 yrs old. Diagnosed during abdominal laparoscopic cystoscopy (ovarian cyst removed).
Been off birth control for 10 yrs with symptoms pretty standard for the diagnosis except for the past 2 yrs. Symptoms include but are not limited to: severe abdominal/pelvic pain all the time but more severe with PMS and menses, heavy menstrual periods that last 7 days or more, lower back pain, rectal pain, right flank pain (now for one month i have left flank pain) ... often mistaken for kidney issues, painful intercourse, fatigue, diarrhea, constipation, nausea, bloating, weight loss, painful urination at times, trouble urinating at times, painful bowel movements/passing of gas, painful pelvic exams, headaches, recurrent ovarian cysts, etc. Since I started the birth control I have now acquired lumps in both breasts. Had to get an ultrasound and emergency mammogram. No cancer noted. Several complicated cysts per reports/MD. Seeing a breast specialist in a few days to discuss the "next steps" for that. Wasn't scared until they said that.
I’m in the “later stages” of Endo... 4 or 5 per GYN but can’t tell exactly without lap surgery again.
I have been back on birth control for 2 months of the 6 month trial...with no break days. If no success, next step is Lupron injection which GYN states is best because menopause is probably my only saving grace before they consider surgery. I am not down for this in any way shape or form. Surgery or Lupron. From my understanding many woman have excision surgery quite a few times. Hysterctomy does not cure Endo. Lupron has very awful side effects worse than Endo.
I have very few good days and a lot of very bad days right now but I keep on trucking along. Getting out of bed daily sucks and that's so not me because I have a burning amount of energy just built up inside dying to get out, but I'm pooped.
I am praying for a miracle because I know that the birth control just "masks" the symptoms. I’m being compliant with meds for the first time because my family MD has been trying to get me to take them for 3 yrs??? I’m so anti med and so go natural/herbal (the nurse in me).
I’ve also been started on the Endo diet which I have noted a great decrease in pain but could be from pills? Maybe a combo of both.
Going to start vitamin E, C, and fish oil per GYN request. Helps with free radicals (good for Endo, breasts and the heart).
I go to therapy weekly for “emotional” support for this and the anxiety it causes … Learning relaxation meditation which is helpful (hubby has seen less anxiety he says).
Just trying to survive day to day and be “normal” is hard but I feel like a million bucks in my head but my body … well, not so much. I function like I have a dirty secret. I force myself to work as a nurse 5 days a week, I’m a mother to a teenager, a wife, a friend and a FT student. But you’d never know my dirty secret unless you know me well. I’m great at looking well when I feel like death inside but go home and cry in pain. I'm a fake smiler.
Endo sucks and anyone who tells you "oh it's just period pain" should have one day of dealing with this and they'd shut their mouth forever.