I was diagnosed with endometriosis in October 2012, at the age of 45 after over 10-years of being diagnosed with poly-ovarian cysts. My last ultrasound in 2012 was identical to my ultrasound from 2007. Ultrasounds do not show endometriosis!
I was fortunate and blessed because I did not have horrible pelvic pain for the last 15 plus years, even though I had cysts on both ovaries. I endured no pelvic pain on or off my periods during these years, but what I did have was flooding & large clots (larger than a half-dollar) while on my period. The first three days of my period may of included accidents even with the use of a super tampon every 30 minutes plus a night time maxi pad. I was anemic and lethargic. The last year prior to this diagnosis I had low-low back pain, uncomfortableness while lying down, and sciatic leg pain to the point of limping on my left leg.
After my endometriosis diagnosis, I was informed that my only option was a total hysterectomy including the removal of my ovaries. I was very blessed and had two beautiful girls in my early twenties.
On March 5, 2013, I had a robotic assisted total laparoscopic hysterectomy, removal of both ovaries & endometriomas, extensive lysis of dense pelvic adhesions, cystoscopy, & flexible sigmoidoscopy. My rectum was dissected from my uterus. The right & left ovary had to be freed up from the side of the rectum. The uterus had to be un-adhered to the sigmoid colon and the rectum. Thank goodness there was no injury to my rectal wall. This surgery was 5 hours with two surgeons and one assistant surgeon.
The next 5 months after my hysterectomy were awesome! I had NO back pain.
Then the pain slowly started again in my low back on August 2013. I was referred to physical therapy. Shortly after beginning PT I was diagnosed with prolapse vaginal vault after hysterectomy, bladder, stress incontinence, and rectum with a referral to a Urogynecologist.
As of today, I am suffering with pain in the back side of my left hip, low-low back pain, left leg sciatica pain, and low left sided pelvic pain. I have the diagnosis of ovarian remnant syndrome, which is a piece of ovary remaining in my pelvic area. Surgery is needed to correct the prolapse of the bladder, vaginal vault, rectum, and removal of adhesions & ovary remnant.
If there is one thing I could change and known in hindsight, it would have been to ask for exploratory laparoscopic surgery when I was in my 30s. (This is the only way Endo can be confirmed.) Please see a doctor (who understands Endo) when you have a super heavy flo “flooding” and keep asking for answers.
We must write, talk, and share… Endo warrior!
Join us March 14th (11am PST) for a special tweet chat to raise Endometriosis Awareness.
The topic: Endometriosis: The Invisible Disease and the Women Who Suffer. Click here, for details.