I thought that having a total hysterectomy would be the end of my life-long struggles with endometriosis and ovarian cysts. I was positive this surgery would, once and for all, close the chapter of my life that had been nothing but a pain in the ass (and lady bits). I was ready to turn the page and move on, y’all. I thought I had it all under control.
I was wrong. So, so wrong. The chapter may have come to an end, but lady luck had a whole damn SEQUEL in the works for me.
Hi, my name is Meg, and my ovary regenerated itself.
I was clueless about Ovarian Remnant Syndrome. I had no idea that a) it was an actual thing and b) it could cause so much pain and suffering.
And yes, you read that correctly: OVARIAN REMNANT SYNDROME.
Before we get to my sideshow reproductive organs, here’s my backstory: I’ve been dealing with ovarian cysts and endometriosis since I was 16. My first cyst (note to self: Trademark that phrase for a Lifetime movie) was larger than a grapefruit. My doctor at the time assumed the worst, and I ended up being cut open from my belly button to bikini line to have the sucker removed.
The cyst was benign; it was just the beginning of a decade of pain and frustration. I needed seven more laparoscopies to remove cysts and endometriosis. I was pretty much sliced open about eight ways ‘til Sunday. I even had one more laparotomy for yet another freakishly large cyst.
When I was 21, I decided ENOUGH was ENOUGH. At this point, I’d only developed cysts on my right ovary. I decided to pull a Uncle Joey a la Full House, telling my doc to CUT IT OUT. I had my right ovary removed; less than two weeks later, I developed a large cyst on my left ovary. I was devastated.
I tried to not let my chronic illness get to me, but every day was a struggle. I tried a parade of pills: birth control, hormones, anti-inflammatories. It seemed like nothing worked. I had all but resigned myself to a life of pain and heartache.
I’ll spare the details of the disappointment I felt in my doctors, too. I saw regular gynos and even a reproductive endocrinologist. No one had a solid answer for me. Not a single doctor could tell me why my body kept making huge cysts; equally frustrating was their general lack of compassion.
They had no answers and no hope, either--I was flat-out told (on several occasions) that I would never be able to conceive without IVF.
I’m almost to the demon ovary, so bear with me...
I had another laparoscopy in 2011 (I was 26 then). My new pelvic pain specialist removed extensive endometriosis and scar tissue. He found my remaining ovary had twisted itself into a ball behind my uterus, forming a large mass of scar tissue around metal staples that a previous surgeon had left in me.
No joke: some other quack LEFT STAPLES INSIDE MY ORGANS. I should have been livid, but I was just relieved. I felt as if I finally had some answers--and hope. Sure, I still had to deal with endo, cysts, and pain, but I felt a little better knowing I had a compassionate and competent doctor on my side.
About a year later, I found out I was pregnant. I’d had a mix-up with my insurance company that resulted in my not getting my Yaz for a month, which I assumed (at the time) was NBD. After all, I’d been told I couldn’t get pregnant on my own. Wrong!
After 37 weeks of a super-scary pregnancy (pre-eclampsia and bed rest), I delivered a tiny--but healthy--baby girl.
Three months after giving birth, I was back in the OR for a hysterectomy. I’d come close to having one many times before, but I held off in hopes of being able to have a child. I had been through two harrowing encounters with early cervical cancer, too, so once my kid was born I was ready for my lady biz to GTFO. My regular gyno performed the surgery. We left my ovary in hopes that I wouldn’t have any complications.
I should have known better.
I was back in the OR two weeks later when my remaining ovary developed a grapefruit-sized mass. Fun times, indeed. I had the ovary and mass of scar tissue removed in January 2013. The additional surgery was a pain but I thought: surely, sweet baby Jesus, this has to be the end.
WRONG AGAIN. By mid-April I was in the hospital for severe abdominal pain. I remember having a CAT Scan, returning to my room, and having the gynecologist on call sit down on my bed to deliver the news.
“It’s nothing major,” she said, “Just an ovarian cyst.”
I assured her that was IMPOSSIBLE. She tried to argue with me, even suggesting that perhaps my ovary had been left inside of me by mistake. She finally acquiesced and said she’d return with more information. She came back an hour later with a yellow post-it note. Three words stood out in black ink.
OVARIAN REMNANT SYNDROME
I was told it’s a rare condition, that she didn’t know much about it, and that I should call my doctor. I did, and he agreed to see me the next day. I had an ultrasound and blood work to confirm the diagnosis. I needed to see my pelvic pain specialist again; someone highly trained needed to perform the excisional surgery.
My OB-GYN, who is basically a saint and the coolest dude ever, explained what had happened: a small amount of ovarian tissue had remained inside of me after my surgeries. That tissue was able to regenerate itself and form the mass that was currently hanging out in my pelvis, causing me unbearable pain.
After attending the University of Frantic Late-Night Google Searches, I found out that Ovarian Remnant Syndrome was, in fact, a real thing--and my chances of developing it were like one in a million. Remind me to buy a lottery ticket sometime…
There wasn’t any real info out there about ORS. I remember being psyched about finding a peer-reviewed study only to be majorly bummed when I saw its author was a VETERINARIAN. I was so frustrated, but my pelvic pain specialist was there for me. It took a couple weeks, but I got in to see him again.
Before the surgery, I had to take Clomid, a fertility drug, to make the mass of ovarian tissue grow as large as possible--that would reduce the risk of any ovarian remnants remaining post-op. I had the Ovarian Remnants removed through laparoscopy. I stayed in the hospital overnight, and I was pretty bloated and sore for about a week. It didn’t take me long to be able to take care of my daughter again, and I was back at work just seven days after the procedure.
I would say the surgery was a success. I’ve had another laparoscopy since then to remove more scar tissue and endometriosis that were causing me a lot of pain. I haven’t had any more large Ovarian Remnants develop, and that’s rad.
I am afraid that I’ll end up growing sideshow starfish ovaries again, but it’s out of my control. I just have to roll with the punches and live each day the best I can.
I have learned to live with the pain over the years. I was also diagnosed with Interstitial Cystitis, a debilitating bladder disease. It took some time to find the right combination of medication, and I recently had a spinal cord stimulator implanted to help me manage my pain. I am now able to keep my daily pain level down to about 4 out of 10 -- and that’s HUGE for me!
I hope that sharing my story can provide y’all xoJane lovelies with some real information about Ovarian Remnant Syndrome. I wish I’d been able to find a story like this after my diagnosis. It’s scary, and it feels like something out of the Twilight Zone; however, with the right doctor and treatment plan, you’ll be able to manage ORS and its symptoms.